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Comments Received

VIEWS: 36 PAGES: 24

									Response   1. Data collection:                                                       2. Sampling frame:                                                      3. Method for sampling:                                        4. Development activities for the first PPF survey:
Number     We ask you to comment on the proposal to only use proxy                   We have taken the view that care homes residents should be              We propose that for the first PPF survey each CASSR should     Do you have any views as to the focus of the cognitive testing?
           respondents to encourage responses from those who are                     included in the first PPF survey. We ask for your comments on           select a sample by simple random sampling at one point in time
           unable to self-administer the questionnaire and consider                  this proposal.                                                          from their case records. We ask for your comments on this
           developing a version for people with learning disabilities                                                                                        proposal.

1          We would welcome some definition of who the proxies could be –            We agree with that this group‟s feedback should not be excluded – Agree in principle                                                          Agree it is appropriate to carry out cognitive testing with proxies.
           for example is it expected that they could they be care                   having said that in our experience of carrying out local surveys, the
           workers/managers or voluntary sector workers as well as                   response rate is very low.
           carers/PoAs/family? We agree that development of an LD version
           would be necessary as this client group is to be included in the
           sampling frame. Could consideration be given to using reviews of
           users rather than a postal survey?
2          Due to time constraints, this currently seems to be the best option,      This will add a significant degree of complexity to the process, add    Stratification would add value at a local level, and would be worth   Considering the decision to include proxy respondents, it would be
           being inclusive and broadly practical. However, exploring different       on much higher staff costs, and involve negotiation with care           trialling in the pilot.                                               imprudent not to focus the cognitive testing there. It may also be
           methods in future would be good. Would the LD version be centrally        homes. However, it would be inclusive to a degree that previous                                                                               sensible to continue the focus into the pilot.
           created and distributed, or, as with previous UESs, would                 UESs have not managed, and might help firm up relationships
           translation be left up to each CASSR? The former would be better,         between performance and care homes.
           as it would cut down on cost/effort duplication, and make the data
           more reliable.

3          There is a danger that this may lead to mis-representations of the        Difficult one - are you expecting that care home residents are          This would be the most sensible method for the first survey           No
           truth.                                                                    sufficiently mentally and physically able to contribute - if they are
                                                                                     not then again danger that the truth will be distorted.


4          This sounds sensible. However, is there a risk that service users         I think that this would need very careful piloting. Certainly care    This sounds viable.                                                     Again, what exactly is meant by “proxy respondents”? How will
           will ask a care worker or social worker to act as a proxy? This may       home users should be included in consultation. However, how will                                                                              these respondents be appointed, and will the survey ask them to
           affect the responses either directly or indirectly, if the service user   their anonymity and confidentiality be assured when staff within the                                                                          record who the proxy was and their relationship to the service user?
           feels they cannot be honest about the services when being assisted        care home will know that they have taken part in the survey? Will all
           by someone who provides them with these services. What exactly            care homes have suitable facilities (i.e. a private room) for surveys
           is meant by a “proxy”? Does it refer to someone who assists the           to be administered? What will be the ethical implications under the
           service user to fill in the form (i.e. reading out the questions and      Mental Capacity Act for involving people with dementia or similar
           transcribing their answers), or someone who fills it in on their          conditions, whose capacity to give meaningful consent may be
           behalf? If the latter, how will the proxy know what the service user      impaired?
           thinks?

           What information about being assisted by proxies will be provided
           with the questionnaire? The term “proxy” might be difficult for
           service users to immediately understand.

5          It is important that everyone takes part in this awareness process to     Care homes residents would be better off at home on a financial as This will need to be tested against other methods and see what the Yes I agree with the report to insure the validity and currency of the
           get the most impact on the personalisation programme. It is also          well as personal view point. This is for as long as they can be safe discrepancies are or we will end up with a problem or crisis         report/survey findings.
           helping the people's health and well being. They have their say and       in their homes and looked after by local carers. The infrastructure  somewhere (i.e. RAS)
           the councils will try to keep responding to those requests in a           and provision of care should be there to support this view.
           professional and quality manner. This way people will be satisfied                                                                             In a more detailed second phase sampling, one could do the
           and complain less often. (For as long as the decentratlisation and                                                                             following : Theme sampling such as burning issues or critical points
           local services are taking place to discharge the councils and                                                                                  or interest groups would be a good start for a marketing report
           reinvest those gains into services to the people and not in increase                                                                           leading to a financial awareness report (how much this cost and
           councils overheads).                                                                                                                           how much savings are done, where go the savings).

                                                                                                                                                             Time will tell us what we need to know on sampling...
Response   5. Future development activities:                                6. Questionnaire content:                                                     7. We propose that additional questions on health could be           8. Of the options considered we have a preference for the EQ-
Number     Do you have any views as to importance of the further activities We ask you to comment on the proposal to use the ASCOT                        collected alongside the ASCOT measure and have suggested             5D because of the potential for long-term benefits in terms of
           that are suggested?                                              questions as the basis for the core questions.                                either a question on self-perceived health or the EQ-5D.             linking with health.
                                                                                                                                                          Do you think additional questions on aspects of health should        Do you have any comments on the proposal to include the EQ-
                                                                                                                                                          be included ?                                                        5D alongside ASCOT?

1                                                                                Generally satisfied that the Ascot measures are appropriate              Yes                                                                  We would need clarification of which questions from the EQ-5D are
                                                                                                                                                                                                                               to be included?




2          Areas 9 (Linking with CQC and NHS) and 10 (linking UES with day       ASCOT seems to be the best choice, as it is less subject to the     Yes, to facilitate interpreting outcomes in context.                      The EQ-5D seems to be the most widely used in the UK and is
           to day activities of CASSRs) seem to add the most value for           vicissitudes of political favour and policy shifts. It is also more                                                                           therefore the most transferable with Health, however the SF-36
           CASSRs. Depending on the decision as to whether the UES should        clearly demarked than the PPF outcomes and domains, and can be                                                                                shares its economic evaluation features, seems more fine grained
           stay firmly with the CASSR or be operated by an independent           neatly shoehorned into these should it be needed. However, using                                                                              and is globally transferable.
           agency, areas 1-7 would be the most useful operationally              the PPF outcomes and domains would be a good chance to embed
           (especially area 1).                                                  the agenda into the UES programme.


3          I believe that it is important to ensure that people who are unable to These questions are an improvement in terms of wording on               Only a good idea if it eliminates another health related             Seems like the best option from those detailed
           communicate in traditional methods have an opportunity to              previous questions used in PSSRU surveys.                               questionnaire.
           contribute, therefore producing different methods of enabling
           participation should be a priority.                                    I believe it is important to keep the list of questions as concise as
                                                                                  possible so not to over burden service users.
4          Activities 1-7 would appear to be those which should be prioritised ASCOT questions seem like a good basis, but they will need to be           Difficult to comment without knowing more about what aspects of      EQ-5D would seem to be a sound basis for this.
           out of the entire list.                                                worded in Plain English (which presumably the cognitive testing will    health these are, and what would / could be done with the findings
                                                                                  ensure anyway).                                                         from these questions.




5          They are very important. I do not have detailed views.                no comment                                                               yes                                                                  yes
Response   9. Do you have any more general comments on the core   10. Questionnaire content:                                          11. Do you have any opinions about how these data should be        12. Do you have any other comments to make about the
Number     questions?                                             Do you agree that the questions specified above should be           collected, i.e. through CASSR databases or as additional           additional questions?
                                                                  collected alongside the ASCOT measure?                              questions on the questionnaire?



1                                                                 We would already have information on level of disability from       Data such as age, gender , ethnicity, care package (and level of
                                                                  application of our eligibility criteria.                            disability as mentioned above) should be available from our
                                                                                                                                      databases.




2                                                                 Yes, they should be. Level of disability will compliment the health      The second set of data should come from CASSR databases, to
                                                                  questions in putting outcomes in context. Informal support helps        reduce survey fatigue.
                                                                  illuminate social capital, which is a key part of PPF. Accessibility of
                                                                  home and area are less key, but will be useful information for local
                                                                  policy formulation. The general demographics, services received
                                                                  and cost of package should all be retrievable from CASSR
                                                                  databases, and will provide a more detailed picture both locally and
                                                                  nationally.
3                                                                 Yes                                                                                                                                    No




4          -                                                      All would appear to be useful.                                      Would recommend additional questions on the questionnaire, if this -
                                                                                                                                      can be done without making it too long. For example, when we have
                                                                                                                                      run similar exercises, we have found that around 35% of people
                                                                                                                                      who return our local Carer‟s Survey to us were not previously known
                                                                                                                                      to us as carers. Asking these sorts of questions can be a useful
                                                                                                                                      way of uncovering previously unknown information about problems
                                                                                                                                      faced by service users in the local area, and the resources they
                                                                                                                                      have available to them – providing the questions do not make the
                                                                                                                                      survey so long that they put people off taking part.




5          no                                                     yes                                                                 both. Probably faster via databases. Questionaires would need to   no.
                                                                                                                                      be scanned and put in a database for statistics purposes in the
                                                                                                                                      future. Plus policy amendments and reference purposes.
Response   Finally.
Number     Do you have any more general comments?




1          We would welcome any moves towards collecting this kind of
           information at review and away from postal surveys. The benefits of
           this include a universal response, which would help with assessing
           the quality of providers and in house services. It would mean we
           would have statistically valid information from sub groups.


2




3          No




4          -




5          no
Response   1. Data collection:                                                     2. Sampling frame:                                                   3. Method for sampling:                                        4. Development activities for the first PPF survey:
Number     We ask you to comment on the proposal to only use proxy                 We have taken the view that care homes residents should be           We propose that for the first PPF survey each CASSR should     Do you have any views as to the focus of the cognitive testing?
           respondents to encourage responses from those who are                   included in the first PPF survey. We ask for your comments on        select a sample by simple random sampling at one point in time
           unable to self-administer the questionnaire and consider                this proposal.                                                       from their case records. We ask for your comments on this
           developing a version for people with learning disabilities                                                                                   proposal.

6          Agree that this is the right way forward                                Agree – possible issue of resources and planning especially if       Yes- fine. Though how are self- funders going to be selected?          Residential homes may be useful
                                                                                   proxy required.
                                                                                                                                                                                                                               Also BME populations
                                                                                   May need a standard letter to providers for CASSR‟s to use
                                                                                                                                                                                                                               Will there be any funding as this could be costly?




7          A pragmatic approach needs to be adopted. With a postal survey          There would be no way of controlling who completes the               If this survey is to be truly representative of the groups you mention Why only test with proxy respondents? If there are only a few new
           approach there is already no control over who completes the             questionnaire and where staff assist the service user the risk of    they must be purposively and proportionally sampled to ensure or at questions it will be vital to test these as thoroughly as possible
           questionnaire therefore it makes sense to allow proxy response.         bias is high.                                                        least give some chance of a representative result.                     before they are included in a large scale national survey

           CASSR may not know who would require an easy read version               Face to face interviews have been found to be the solution to gain Although it will increase costs it may be an easier option to manage
           resulting in two versions being sent to all recipients. To keep costs   the service user view whilst a Relatives survey gains the (often very if all service users were invited to take part in the survey
           low I would suggest offering an easy read version as one of the         different) views of the family or carer.
           alternative options such as completion by telephone or a translation                                                                          Residential
           etc.                                                                    A random sample may have the effect of picking only one person        A random sample may have the effect of picking only one person
                                                                                   from a care home. This could cause distress to that person being      from a care home. This could cause distress to that person being
                                                                                   singled out or to the others as to why they were not invited          singled out or to the others as to why they were not invited. When
                                                                                                                                                         surveying residential care we have always given all the residents a
                                                                                                                                                         chance to respond – here is one place where you will find service
                                                                                                                                                         users and self- funders.
Response   5. Future development activities:                                6. Questionnaire content:                                                    7. We propose that additional questions on health could be            8. Of the options considered we have a preference for the EQ-
Number     Do you have any views as to importance of the further activities We ask you to comment on the proposal to use the ASCOT                       collected alongside the ASCOT measure and have suggested              5D because of the potential for long-term benefits in terms of
           that are suggested?                                              questions as the basis for the core questions.                               either a question on self-perceived health or the EQ-5D.              linking with health.
                                                                                                                                                         Do you think additional questions on aspects of health should         Do you have any comments on the proposal to include the EQ-
                                                                                                                                                         be included ?                                                         5D alongside ASCOT?

6          May need to consider BME populations                                 This is the most effective and efficient means of a way forward.         Not in the first year as there appears to be little benefit. May be   Probably but not in year 1
                                                                                                                                                         better to wait until the second year when the merger of the
           What about EIA of the process and questionnaire – has this been                                                                               organisations into the CQC has embedded more fully – new
           considered?                                                                                                                                   priorities or greater “jointness” may result.




7          I would put Number 10 as a high priority. Many CASSRs are already The Ascot questions cover general aspirations that people have          I would like to see the addition of two simple questions on the           What purpose would they serve? These would measure a person‟s
           investing in customer insight approaches.                         identified but do not link the achievement of that aspiration directly impact of the support provided on independence and well-being.             current state of health as of the day they complete the
                                                                             to the support and help received. This specific causal link could be                                                                              questionnaire and could not be directly attributed to PPF.
           In Essex for example we aim to survey all our service users and   gained with a re-wording e.g.: “Without the support I receive I would
           carers within a year via two surveys one for people new to the    not be as clean and presentable as I would like”
           service and the second for longer term service users and carers.
           The questions are based on what people of Essex have said they    The question set needs to be augmented with additional questions
           expect. This approach reduces the burden of survey and frees up   around the impact of the support provided on independence and
           resources and capacity to conduct interviews or observations with well-being.
           seldom heard customers.

           The responses will be maintained on a customer insight database      The phrasing for Q2 isn‟t quite right yet as it makes assumptions
           with the capability to be analysed by all variables. Which we hope   about everyone wanting to feel clean which is not always the case.
           will further reduce the need for additional survey.                  I suggest…
                                                                                “Generally I feel as clean and as presentable as I want “as an
           We would welcome the option to align with the national survey        alternative
           questions and provide a response from our own database rather
           than running a third survey for the DH.                              Q5 should be linked to the support they receive – for example “The
                                                                                support I receive helps me to feel safe from injury or harm”

                                                                                The definition for this question needs to be very strong as we have
                                                                                found people to interpret this as safe from crime or safe in the
                                                                                community not safe because they receive help.


                                                                                Q8 I am not clear on the purpose or basis of this question. It is over
                                                                                complex -Helped and treated are two different things , so too are
                                                                                thinking and feeling these need to be separated out and simplified
                                                                                to make it clearer what is being asked and why. Personally I
Response   9. Do you have any more general comments on the core                   10. Questionnaire content:                                               11. Do you have any opinions about how these data should be       12. Do you have any other comments to make about the
Number     questions?                                                             Do you agree that the questions specified above should be                collected, i.e. through CASSR databases or as additional          additional questions?
                                                                                  collected alongside the ASCOT measure?                                   questions on the questionnaire?



6          Another external factor impinging on outcomes is an individual‟s life Agree that the additional questions alongside ASCOT should be             Both methods would be required – but as much information as       What about questions on the 6 equality strands – or will this
           view or locus of control – i.e. is the glass half empty or half full  asked e.g. level of disability, accessibility to the home, weekly cost    possible should be sought from the user/proxy in perception       information come from CASSR databases? How will the sample be
           scenario. Measures for this would be very difficult to develop,       of care package etc.                                                      questions. Questions of fact can be addressed via CASSR           stratified to reflect these groups?
           however                                                                                                                                         databases.




7          Please see above                                                       I am not clear about the objective for asking about a person‟s level     Where data is robust enough collect direct from the CASSR where   See above
                                                                                  of disability – this should already be known locally. How does it        it is not via the survey.
                                                                                  relate to the other survey questions?

                                                                                  I can see the reason for asking about informal care as this could
                                                                                  help to identify unmet need.

                                                                                  I am not clear about the objective for asking a person‟s accessibility
                                                                                  to the home – it should already be known and addressed locally. If it
                                                                                  hasn‟t been this may raise expectations for the respondent that
                                                                                  couldn‟t easily be followed up because of the anonymous nature of
                                                                                  the survey.

                                                                                  As above I am not clear about the objective for asking a person‟s
                                                                                  accessibility to the community – it should already be known and
                                                                                  addressed locally. If it hasn‟t been this may raise expectations for
                                                                                  the respondent that couldn‟t easily be followed up.

                                                                                  It is traditional to ask demographic questions via the questionnaire
                                                                                  as this data is not always recorded on the CASSR database
                                                                                  –particularly around ethnicity and sexual preference.
                                                                                  Services received and cost of package would, I believe, be
                                                                                  available
Response   Finally.
Number     Do you have any more general comments?




6          ASCOT QUESTIONNAIRE

           Q3
           What if someone perceives that they get too much food especially
           someone in a 24 hour care setting – might this be an issue e.g.
           obesity?


           Q5
           The word adequately may be confusing. Suggest the second
           response is worded as “Generally I feel safe” and 3rd response is
           worded as “Generally I feel unsafe”

           Also need to explain whether this refers to inside, outside, or both.

           Q6
           Respondents may have little social contact but may not feel
           isolated.


           Q7
           Response 3 – It could be that the respondent just “lives life to the
           full” and so does not have enough time to do things they want to
           rather than can‟t do all he/she wants to.




           Comparability

           Whilst CASSR‟s are administering the survey themselves there will
           always be room for bias. If the results from the survey are to be
           used for performance measurement between local authorities this
7          Only to re-iterate that in some CASSRs the customer insight
           programme is well developed and an option to submit data from
           existing survey would be welcome and very cost efficient.

           Also to keep the questionnaire as short and to the point as possible.
           It would be helpful for local CASSRs to understand how the DH
           intends to use the data gathered , not in a general way but with a
           purpose and expected utility for each question. The effectiveness of
           meeting the DH objectives are then capable of evaluation and
           revision. Whilst respondents can be openly re-assured of the
           purpose of each question and the value their response will be to
           achieving specific objectives.
Response   1. Data collection:                                                       2. Sampling frame:                                                        3. Method for sampling:                                        4. Development activities for the first PPF survey:
Number     We ask you to comment on the proposal to only use proxy                   We have taken the view that care homes residents should be                We propose that for the first PPF survey each CASSR should     Do you have any views as to the focus of the cognitive testing?
           respondents to encourage responses from those who are                     included in the first PPF survey. We ask for your comments on             select a sample by simple random sampling at one point in time
           unable to self-administer the questionnaire and consider                  this proposal.                                                            from their case records. We ask for your comments on this
           developing a version for people with learning disabilities                                                                                          proposal.

8          We agree that those who cannot self-complete the questionnaire            - We agree that children under 18 should not be included in the           This seems to be the best sampling method available (however,          - As the use of proxies could potentially pose one of the biggest
           should not be excluded from participation in the UES. Although we         survey                                                                    does exclude those not included on CASSR records, e.g. self-           risks to reliability, we think cognitive testing should focus on this
           recognise this will not be possible for the first survey, we think easy                                                                             funders)                                                               area.
           read and other language versions should be developed to reduce            - We recognise the need to avoid duplication re: carers, but think
           the impact of the proxy on answers given.                                 carers should only be excluded if the findings from the seperate                                                                                 - We think the pilot should be used to identify and explore ways of
                                                                                     carers survey are comparable                                                                                                                     increasing responses.

                                                                                     - We do not feel the inclusion of people in residential homes and
                                                                                     the use of proxies in this context will yield reliable results and thus
                                                                                     would not include this group.


9          Whilst this will encourage responses from the hard to contact, it will Good idea.                                                                   If the intention is to sample across all users then you do run the risk No.
           also discourage responses from those that can self-administer, or                                                                                   of not having sufficient responses from the smaller client groups.
           have I mis-understood. Also the risk of using proxies is you gather                                                                                 Would it not be better to sample from each client group.
           the opinion of the proxy and not the user.

           To be honest most people use their common sense. Those that
           can self-administer do, those that can't have a carer who is usually
           more than willing to act as proxy and frequently do.
10         Agree with the idea of having a learning disabilities specific version Agree that this client group should be surveyed, but due to the        This seems like the best method.                                             The focus should be around whether using a proxy respondent
           of the questionnaire as these clients would otherwise not be able to difficulty of identifying an appropriate person to assist each client, a                                                                              causes a bias in the results.
           effectively participate.                                               postal survey does not seem to be the best method. Perhaps
                                                                                  undertaking a smaller survey as part of the review process would
           Using proxy respondents could be problematic as it would mean          be more appropriate for this client group? This could be carried out
           going through case by case to distinguish who would be an              throughout the year, and the results collated and returned at the
           appropriate respondent, and whether or not using a proxy               end of the year.
           respondent is necessary. This proposal would only work if surveys
           were sent to the client directly with guidance on what to do if the
           client is unable to complete it themselves.

11         Proxy respondents will be difficult to identify and it will be difficult to Agree with this, however identifying a specific proxy respondent for    A random sample would be the easiest, however this may limit the       Disagree, as much as possible the questions need to make sense
           ensure that the real views of a service user will be recorded rather these client may be particularly difficult. Another option my be to            response if the survey is within the next year as some Local           to service users and therefore they need to partake in cognitive
           than an interpretation of the views by a proxy respondent.                  use other older people to act as peer supporters to enable the          Authorities have only implemented PPF in specific areas and within     testing. If the questions are made accessible to the groups most
                                                                                       views to be heard. Some LA‟s already have this in place.                specific groups. In this case it would be more appropriate to select   likely to struggle, then they should be more accessible to all clients.
           The 2009 Home Care survey gave the option for the person                                                                                            the relevant areas / client groups from which to draw the sample.
           completing the form to indicate who responded (i.e. the service
           user, someone else). Having this option ensures that it is known
           whether the service user responded or a proxy respondent was
           used.




12         More guidance is required regarding this issue e.g who can act as         Although often services for those with mental health issues are     Collection at review would ensure more respondents but the results Good idea in principle
           proxy. The type of proxy given needs to be condsidered as varied          linked to trusts we should look to include them. Also they may have are likely to be infulenced by individual wishes for the outcome of
           e.g. translation, telephone help line, family member or advocates         some services but do not view these as relevant e.g. Meals on       the review.
           (not agency workers).                                                     Wheels, Careline etc.

           There is a need to capture different respondents and to carry out         We need to consider that for people in residential homes it is their
           analysis of their agendas and how this might influence agendas.           home and we need to link with the Care Quality Commission and
                                                                                     design questions around all groups needs.
           Yes a questionnaire ought to be developed for people with learning
           disabilities as this is proposed to be an all inclusive survey.
Response   5. Future development activities:                                6. Questionnaire content:                                                     7. We propose that additional questions on health could be            8. Of the options considered we have a preference for the EQ-
Number     Do you have any views as to importance of the further activities We ask you to comment on the proposal to use the ASCOT                        collected alongside the ASCOT measure and have suggested              5D because of the potential for long-term benefits in terms of
           that are suggested?                                              questions as the basis for the core questions.                                either a question on self-perceived health or the EQ-5D.              linking with health.
                                                                                                                                                          Do you think additional questions on aspects of health should         Do you have any comments on the proposal to include the EQ-
                                                                                                                                                          be included ?                                                         5D alongside ASCOT?

8          - We feel that no. 10 - exploring ways the survey can be better        The ASCOT questions appear to meet the demands of each of the           - In order to meet all the domains, it is essential to include some   As previous
           integrated into day to day activities is very important                domains (excluding health), however, we would expect the wording        questions on aspects of health, especially as you assert this is
                                                                                  to change as a consequence of cognitive testing. Some of the            unlikely to add much length to the questionnaire.
           - All the activities which ensure valid versions of the surveys are    phrasing is very awkward and it is not clear what the question is
           available for specific groups                                          asking, e.g. 'I feel as safe as I want'.                       - EQ5D questions should only be used if they can be fully
                                                                                                                                                 integrated into ASCOT and do not create repetiton and overlap - but
           - Also, we feel you should consider expanding the survey to self-      The use of ASCOt is preferable to devloping a new set of       we do see the benefits for wider value in this approach.
           funders                                                                questions, as the premise of ASCOT promises a more
                                                                                  comprehensive measure of outcomes and has already been tested.
           - In relation to no.8, we think the involvement of an independent
           organisation to collect data could be useful, but only if this model
           was used consistently across all councils.
9          No.                                                                    The questions are too open to interpretation. LD clients are much       Yes.                                                                  No.
                                                                                  more likely to say they don't get the food they want, but there could
                                                                                  be good reason for this. Safety will probably be interpreted as risk
                                                                                  of crime, rather than from a Social Care aspect.




10         Believe it is most important to further test the validity of the       This seems the most appropriate of the three options                    Using one survey to cover both health and social care issues       Many of the topics from the EQ-5D are currently covered in user
           instrument for proxy respondents. Also think that investigating the                                                                            instead of issuing multiple surveys may improve response rates, as experience surveys, and seem to work so would be sensible to
           possibility of creating an online version of the survey could be                                                                               long as the length of the survey is controlled.                    continue with these
           beneficial.




11         In relation to the numbered statements in this section:            These questions are fine.                                                   Yes, a core set of questions with a clear overall objective, with     The SF-36 questions appear to have a more positive tone to them.
           1 - not necessarily                                                                                                                            additional questions which local authorities can choose to include to
           3 - agree                                                                                                                                      aid local research objectives would make the survey more relevant.
           4 - agree
           5 - agree
           6 - agree, but also suggest this is where proxy respondents may be
           useful
           7 - agree
           8 - would need clear commissioning
           9 - agree
           10 - agree
           11 - agree
           12 - agree to a limit

12         2, 3, 4, 6, 7 & 9 all carry equal weight.                              Agree that the ASCOT measure is used to collect information on          Yes additional questions on aspects of health should be included      Agree, same as above.
                                                                                  the outcomes because this is a tried and tested method.                 alongside ASCOT as this would ensure better linkage and view the
           Translation is important. Although St. helens has access to a                                                                                  person as a "whole".
           translation service this would be an additional cost that would need
           to be considered.                                                                                                                              This would help with CAA and Departmental objectives i.e. joint
                                                                                                                                                          working.
           All service users must be contacted asking for their permission to
           pass on their contact details to any independent organisation that
           may conduct the survey. Consideration needs to be given to this
           when setting the timescale for mailing questionnaires.
Response   9. Do you have any more general comments on the core   10. Questionnaire content:                                               11. Do you have any opinions about how these data should be           12. Do you have any other comments to make about the
Number     questions?                                             Do you agree that the questions specified above should be                collected, i.e. through CASSR databases or as additional              additional questions?
                                                                  collected alongside the ASCOT measure?                                   questions on the questionnaire?



8                                                                 Yes. It is necessary to provide context and allow outcomes to be         - Concerns that providing the information through CASSR
                                                                  judged in this way.                                                      databases may cause some issues re: collation with survey data

                                                                                                                                           - Asking the survey respondents is the only way we can guarantee
                                                                                                                                           information is 100% up to date and accurate for certain questions




9          No.                                                    Yes.                                                                     Through CASSR databases.                                              No.




10         No                                                     yes - for some of the questions, similar information is included in      These data should be collected from CASSR databases. The data No
                                                                  current questionnaires. The other questions would produce data           on weekly cost of care package could be difficult to provide where
                                                                  that would be useful locally.                                            services do not fit a traditional weekly pattern.




11         No.                                                    Information collected from the questionnaire:                            As indicated, the first set from the questionnaire, the second from   Questions should be mainly multiple choice as free text is difficult to
                                                                  Little is known about some of these aspects so would be good to          client database.                                                      analyse. However it is important to have an option for clients to
                                                                  include, asking if the client is a provider of informal care may also                                                                          provide extra comments, i.e. an „Any other comments‟ section for
                                                                  be useful                                                                                                                                      text at the end of the survey.

                                                                  Information from CASSR databases:                                                                                                              It is mentioned that the Capacity for Benefit tool will allow
                                                                  Yes, this could be provided, possibly with the inclusion of individual                                                                         measurement of the contribution of services to service user
                                                                  budget information and ethnicity                                                                                                               outcomes. The discussion document indicates that the tool is still in
                                                                                                                                                                                                                 the development stages, however, could this be developed further
                                                                                                                                                                                                                 before rolling out the PPF survey to allow it to be incorporated?




12         No                                                     Yes but we need to also include individual budgets and which           CASSR databases should be used if possible, if they are accurate        Additional questions should be reviewed each year linked to local
                                                                  provider. This would enable comparison to be made re the quality and up to date.                                                               themes.
                                                                  of the service provided and the level of satisfaction with the service
                                                                  received.                                                              It is important not to ask service users more questions than is
                                                                                                                                         necessary.
Response   Finally.
Number     Do you have any more general comments?




8




9          No.




10         Sending the same survey to such a wide range of clients could
           mean that parts of the survey are not as relevant to certain
           respondents as others. e.g - questions about mobility for mental
           health clients. More generally, including carers in future surveys
           could be problematic as their needs are completely distinct from
           those of clients.

           In Section 4.1.2 it appears to say that children may be included in
           future surveys, this would be difficult for us to conduct as we have a
           split service with minimal overlap.

11         No




12         We need to consider the cost/benefit of the various methods and
           also staff resources in the survey is not outsourced.
Response   1. Data collection:                                                     2. Sampling frame:                                                     3. Method for sampling:                                        4. Development activities for the first PPF survey:
Number     We ask you to comment on the proposal to only use proxy                 We have taken the view that care homes residents should be             We propose that for the first PPF survey each CASSR should     Do you have any views as to the focus of the cognitive testing?
           respondents to encourage responses from those who are                   included in the first PPF survey. We ask for your comments on          select a sample by simple random sampling at one point in time
           unable to self-administer the questionnaire and consider                this proposal.                                                         from their case records. We ask for your comments on this
           developing a version for people with learning disabilities                                                                                     proposal.

13         We agree with the suggestion about the use of proxy respondents,        We agree. It is important that the views of this group of people who Yes, it makes sense, certainly for the first Survey, to keep it simple     Some sort of cognitive testing with proxy respondents is critical in
           provided that consideration is given as to how the proxy responses      use services is sought. However, as mentioned in our response to and follow this approach. It is suggested that the sample be set               order that they fully understand the questions.
           are interpreted. Parameters need to be set for the proxy                Question 1, above, consideration needs to be given to the            reasonably high.
           respondents.                                                            identification of proxy respondents - this needs to be thought
                                                                                   through carefully.
           However, there should be more than “consideration” given to
           developing a version for people with learning disabilities – this
           definitely should be undertaken.




14         Agree to use of proxy respondents                                       Agree in principle but from a practical perspective, care home       As one of the smaller London boroughs, RBKC does not usually               Most of our service users with cognitive impairment have age-
           Agree to use special version for LD clients                             residents likely to be problematic as many live outside the Borough, survey only a sample of the eligible client base, but instead offers       related conditions. It's a good idea to conduct cognitive testing with
                                                                                   far from London.                                                     every service user the opportunity to submit a survey response.            proxy respondents too.




15         I am concerned about the use and suitability of proxy respondents.      To get a true view of people's experience of using social care         I would suggest stratfied sampling would give a more balanced view
           Many carers will automatically become proxy respondents for those       services, the inclusion of people in residential care homes is a       of people's experience of services. By using a random sample
           unable to self-administer the questionnaire, but as carers are being    positive move; however, the use of proxy respondents will need to      there is a high risk that the survey will cover only Older People's
           excluded from this particular survey they may use their role as         be considered. Again I suggest the use of independent advocates        views of Older People's services. Different groups receive different
           proxy to air their own views which may not be that of the service       to take this role on thus allowing the real views of residents to be   services and inequal access to resources depending on age and
           user. Independent advocates may be more appropriate to act as           heard.                                                                 disability so a more well-rounded view of everyone's experience
           proxy respondents.                                                                                                                             would require stratified sampling.

           The development of a version for learning disabled people is a
           good step towards gathering the real views of service users.

16         Restriction to postal questionnaires only but allowing for the use of   Care home residents should be included however there may be              Simple random sampling would mean a bias toward older people           At the workshop attended, it was suggested cognitive testing was
           proxy respondents is a pragmatic approach, however the survey           difficulties around proxy responses if these are likely to be the care which is ok overall as it's representative of the social care user       focussed on proxy respondents, care homes and people with LD -
           should include questions that identify whether a proxy was used         workers in the home.                                                     population. However, on a local level it would mean it would be less   this makes sense.
           and what type of proxy e.g. carer, relative, care manager etc.                                                                                   useful if we wanted to break the responses down to understand
           Guidance should encourage appropriate people to respond on their        Ideally self funder‟s and carers not known to social services should outcomes for different client groups as we wouldn't have high              The concept of trying to capture the „value added bit‟ from CASSRs
           behalf to minimise bias.                                                be included as soon as possible within the sample however there          numbers of responses to analyse for some groups such as minority       should be encouraged
                                                                                   are likely to be difficulties in identifying these groups accurately.    groups and younger service users.
           Developing a version for people with LD is a good idea.                 Further consideration is required to determine how these groups                                                                                 It is essential that terminology testing is undertaken , ensuring that
                                                                                   can effectively participate.                                                                                                                    „proxy respondents‟ are well chosen so that the language used
                                                                                                                                                            It would be too complicated to do a stratification to ensure all       ends up being understood by the average resident / service users.
                                                                                   In the first couple of years it might be sensible to identify those with groups were represented but it would be possible to stratify by age
                                                                                   a Personal Budget and those without so comparisons can be made. on most data bases, as such the sample would not be unduly
                                                                                   Also should carers be asked different questions?                         dominated by older people.
Response   5. Future development activities:                                6. Questionnaire content:                                                         7. We propose that additional questions on health could be             8. Of the options considered we have a preference for the EQ-
Number     Do you have any views as to importance of the further activities We ask you to comment on the proposal to use the ASCOT                            collected alongside the ASCOT measure and have suggested               5D because of the potential for long-term benefits in terms of
           that are suggested?                                              questions as the basis for the core questions.                                    either a question on self-perceived health or the EQ-5D.               linking with health.
                                                                                                                                                              Do you think additional questions on aspects of health should          Do you have any comments on the proposal to include the EQ-
                                                                                                                                                              be included ?                                                          5D alongside ASCOT?

13         All are reasonable proposals.                                               It is difficult to comment on the various merits/demerits of the       Yes, but these need to be focussed, as we need to be mindful of        The EQ-5D seems reasonable, given that it is, as you say, already
                                                                                       question sets outlined in Appendix 3, without more background          the effect on the return rate, arising from the number of questions    widely used.
           We would prioritise Point 2 in that, as stated previously, it is critical   knowledge of these.                                                    included.
           that proxy respondents fully understand the questions.
                                                                                       However, some of them seem potentially very applicable to Putting
           Then Points 9 and 10 to help ensure synergies.                              People First. For instance, the CASP-19, on page 40 of the
                                                                                       Discussion Paper (Appendix 3) and its domains covering control,
           Then, Points 4, 5 6 and 7, equally.                                         autonomy, self-realisation and pleasure.

           Point 8 seems relatively unnecessary, in that there will, inevitably,       Could there not be a mix of some of the approaches in Appendix 3
           be independent organisations who can carry out the Survey.                  with the Ascot questions in Appendix 4?

           Disagree with the prioritisation being driven by the budgetary              If a mix is not possible, then the Ascot questions would be the
           importance of the groups. Why would you want to do that? – it               preferred approach, given the number of Putting People First
           sends totally the wrong message. Certainly, have regard to                  domains they cover.
           differences in response rates/responses between the groups – but
           by budget spend? No.




14         Translating questionnaires can be expensive, so it would make               A good start. Ideally it should be possible to match questions to the Standard NHS outcome questions.                                         It is advantageous to try a well-established and supported set of
           sense to pool these costs centrally.                                        standard NHS outcome questions.                                                                                                               indicators, particularly if there are long-term benefits.




15                                                                                     I feel that altough you have linked Choice and Control to question 1 Additional questions on health will be essential to obtian a full view   EQ - 5D appears to be a suitable inclusion into the ASCOT
                                                                                       of the ASCOT measure, this really focusses on control and not        of the service user's experience.                                        measure.
                                                                                       choice. There is a tenuous link between choice and question 7 but
                                                                                       given that all local authorities have a focus of implementing Self
                                                                                       Directed Support I'm unsure if this is enough.




16         Of the list of development activities for later PPF surveys, the            The ASCOT measure has already been tried and tested in large           Something like the EQ5D to capture health outcomes should be           We agree with this proposal
           highest priority should be given to the following:                          scale evaluations like the individual budget pilots, and so it makes   used.
            proxy respondents
           •	                                                                          sense to use something that is known to be valid. ASCOT also
            cognitive impairment
           •	                                                                          enables the measurement of cost effectiveness which might be a
            Learning Disability instrument
           •	                                                                          useful development later down the line. Recognise that the
            stratified sampling
           •	                                                                          responses for ASCOT are fairly broad though.
            combining with capturing service improvement activities
           •	
                                                                                       The double barrelled style of the ASCOT questions should be taken
                                                                                       into consideration.
Response   9. Do you have any more general comments on the core                     10. Questionnaire content:                                              11. Do you have any opinions about how these data should be             12. Do you have any other comments to make about the
Number     questions?                                                               Do you agree that the questions specified above should be               collected, i.e. through CASSR databases or as additional                additional questions?
                                                                                    collected alongside the ASCOT measure?                                  questions on the questionnaire?



13         Assuming that these are the questions in Appendix 4, the Ascot           The questions from the CASSR database seem reasonable, as they This is covered above, to some extent. The information that can be No, covered above.
           Measure, they do not appear to specifically address some of the          should be readily available. Also, it is useful to collect demographic gleaned from Social Care databases should not be included in the
           key tenets of Putting People First.                                      data.                                                                  questionnaire. We need to be wary of the Survey becoming
                                                                                                                                                           unwieldly.
           For example, wouldn‟t the Survey want to ask, at some stage,             In terms of the questions proposed to be included with the Ascot
           something like “Are you aware of the cost of your care?” YES/NO          Measure, whilst the questions/information themselves are fair, there The demographic data should be pre-populated from Social Care
           and also “Have you been offered a personal budget?” YES/NO.              is a danger that the questionnaire will become too lengthy. For        databases, but the other questions could not be pre-populated, as
                                                                                    instance, the extended Kent University Questions took the Home         they are too specific to the person e.g. our databases would record
           “If you answered yes, xxx” . . . and then there could be a series of     Care Survey to 30 questions. A high number of questions is likely, the higher level e.g. Physical Disability – rather than the specifics of
           questions such as: “Is this generally about the right amount?”, etc.     in turn, to affect the response rate.                                  missing limbs, etc.

           A similar approach could be taken with self-assessment e.g . . .

           “Have you been involved in the assessment of your care needs?”
           YES/NO

           “If you answered yes, were you happy with the support you received
           from your Social Worker?” . . . “Do you feel the level of care you are
           now receiving, based on that assessment, is about right?




14         No.                                                                      There are concerns that the questionnaire would be too long. 20 -       If additional data could be provided though CASSR databases then No.
                                                                                    30 questions feels more appropriate than 50+ questions.                 obviously fewer questions would need to be put to the service user
                                                                                                                                                            directly, which has obvious advantages. Plenty of notice is required
                                                                                                                                                            of the data which is likely to be requested from CASSR databases,
                                                                                                                                                            in case producing this data requires the implementation of technical
                                                                                                                                                            changes or enhancements to existing database systems.


15                                                                                  Yes




16         Is there a well-being measure that could be used to capture              Work around Capacity for Benefit to help interpret outcomes should CASSR databases should be used to collect auxiliary data. This               Will there be room for us to add questions locally to understand
           emotional wellbeing e.g. anxiety, ability to cope? There were some       be undertaken. If Social Care departments are going to be                data should then be checked by operational staff prior to its use to   satisfaction with services/ experience of accessing services as
           interesting findings (particularly for older people) in the Individual   compared using this survey, there needs to be a way to attribute         ensure that the data is of a high enough quality.                      well?
           Budget pilot evaluation around psychological wellbeing.                  good and poor outcomes to the effect of services. It would be an
                                                                                    unfair representation if what appeared to be poor performance was
                                                                                    actually operation in difficult conditions (and vice versa). It is
                                                                                    unfortunate that this will not be in place for the first year the survey
                                                                                    will be used as part of a performance measure, so there needs to
                                                                                    be a commitment that this will be developed for subsequent years.
Response   Finally.
Number     Do you have any more general comments?




13         With respect, the Discussion Paper is heavy going and people
           without a research background – myself included – will have some
           difficulty comprehending some elements of it.

           However, the aim of developing a Survey relating to Putting People
           First is welcomed.




14         Collecting the data via spreadsheets and/or web submission seems
           more reliable and fool-proof than a centrally-developed custom
           database which then needs to be installed separately by each
           authority participating in the survey. RBKC had a lot of trouble with
           the Access database supplied by the PSSRU for capturing the UES
           data in 2007-08. It was much easier to use the spreadsheet to
           record and upload the UES data for 2008-09.

15




16
Response   1. Data collection:                                                     2. Sampling frame:                                                     3. Method for sampling:                                        4. Development activities for the first PPF survey:
Number     We ask you to comment on the proposal to only use proxy                 We have taken the view that care homes residents should be             We propose that for the first PPF survey each CASSR should     Do you have any views as to the focus of the cognitive testing?
           respondents to encourage responses from those who are                   included in the first PPF survey. We ask for your comments on          select a sample by simple random sampling at one point in time
           unable to self-administer the questionnaire and consider                this proposal.                                                         from their case records. We ask for your comments on this
           developing a version for people with learning disabilities                                                                                     proposal.

17         I think that the Survey must be clear in what / who a proxy             One issue raised was capturing self funders in the workshop – this     Pro - Would be easier on LA‟s PM teams to select random sample          Nothing to add – think it should be carried out to ensure proxy
           respondent can be to eliminate biased answers, and capture the          would require a lot more work as not all authorities keep local        (but not a great deal, it could be just as easy sampling evenly from    responders can also clearly understand the questions.
           true feelings of the client. (Advocacy Services could help including    records.                                                               all client groups).
           cognitive interviews with service users and proxy present – this may
           be time consuming – would advocacy services come on board?)        The question should also be asked if the providers have this                Con - This may not be give a balanced sample as particular client
                                                                              information. Think the inclusion of self funders should be ruled out        groups are larger than others (PD compared to LD), will we get an
           Development of a version for people with LD – this should be done from a LA point of view, and perhaps a separate exercise could be            understanding of issues/outcomes of different client groups if this
           using standard accessible formats and the language will have to be carried out by the providers (using CQC CRILL / LAMA data).                 type of sampling is used.
           suitable in order to get accurate responses. Again, same issues as
           above with proxy responses.


18         Agree with this proposal                                                Agree with this proposal                                               Agree in principle. However, feel that, given the variety of client     No
                                                                                                                                                          groups that will be included in the sample, it may be beneficial to
                                                                                                                                                          stipulate the proportions of the sample that each client group should
                                                                                                                                                          make up. Otherwise samples at different Local Authorities could be
                                                                                                                                                          heavily weighted in one client group. It may be that the
                                                                                                                                                          representation of each client group should instead be proportionate
                                                                                                                                                          to the demography of the customer base for that particular area.
                                                                                                                                                          Unclear how easy this would be to achieve, however - perhaps too
                                                                                                                                                          difficult?
19         Yes, support use of proxy as practicable approach. Issue usual   Yes, agree. Will present some challenges as to how we might best              Yes, seems most practicable approach. Need to work with us to           Yes, agree that proxy respondents are priority. Within those, we
           guidance and tick box to record when questionnaires are answered support residents. Dementia issue. Encourage availability of                  agree what data is possible to extract from case records. We are        suggest need to focus on care home settings, dementia and low
           by proxy                                                         independent advocacy. We would welcome opportunity to manage                  relatively small authority and rather than random sampling, we have     literacy levels.
                                                                            that locally or at least be able to make suggestions. Cost                    tended to survey everyone in the target group. otherwise the
                                                                            implications to be met by NIC?                                                sample becomes small and difficult to achieve confidence interval.




20         Have concerns around response bias. Agree that version 2 (proxy         Agree, but would need to issue guidance to care homes so that they     Agree as long as everyone uses the same point in time so data is        Think this needs to focus on both respondents and proxy
           respondent and version for learning disabilities) is the best option.   are clear on how to support those completing the questionnaire and     comparable.                                                             respondents.
           Need to agree one version for learning disabilities rather than lots    remain impartial. There might be a useful role for LINks enter and
           of different versions which could invalidate results.                   view members in supporting such a process with independent input,
                                                                                   as well as local advocacy services as appropriate, if clear guidance
                                                                                   is available.
21         Agree                                                                   Agree in principle but more work needed to address the‟ practical      Agree. As we already do user outcome surveys we may need to        We think that there is a strong case for the PPF survey to draw
                                                                                   difficulties‟                                                          exclude people who have recently filled in our own outcome form to upon already developed questions (eg cognitively tested in
                                                                                                                                                          avoid „survey overload‟                                            previous User Experience Surveys) wherever possible. This will
                                                                                                                                                                                                                             also provide continuity and a degree of checking
Response   5. Future development activities:                                6. Questionnaire content:                                                  7. We propose that additional questions on health could be            8. Of the options considered we have a preference for the EQ-
Number     Do you have any views as to importance of the further activities We ask you to comment on the proposal to use the ASCOT                     collected alongside the ASCOT measure and have suggested              5D because of the potential for long-term benefits in terms of
           that are suggested?                                              questions as the basis for the core questions.                             either a question on self-perceived health or the EQ-5D.              linking with health.
                                                                                                                                                       Do you think additional questions on aspects of health should         Do you have any comments on the proposal to include the EQ-
                                                                                                                                                       be included ?                                                         5D alongside ASCOT?

17         Everything covered seems to be relevant – nothing further to add      In agreement – no further comment                                     Think EQ-5D would be better to use, this is used in a wider range of Think EQ-5D would be better to use along side ASCOT, this is used
                                                                                                                                                       surveys and could be beneficial in the long term.                    in a wider range of surveys and could be beneficial in the long term.




18         Agree with the idea of using an independent organisation to collect   Agree in principle                                                    Unsure                                                                No
           the data.




19         We think that each year the themes for future surveys should be    The 8 domains seem to cover most of our interest areas. What             Yes, probably do need additional questions on health specific         Is there also a link with health question in Place Survey?
           more universal rather than past practice of a user group per year. about transport and neighbourhood issues?                                issues.
           Those questions might have to be asked differently of some groups
           and we'd welcome research/guidance for the harder to reach. We
           wouldn't suggest budgetary importance as best tool to prioritise
           future activities. Rather, better links with CQC and local policy
           activities and how do we carry through the findings to service
           improvement. Agree that any differences in responses between
           user groups should suggest further work.


20         Developing a valid version of the instrument in foreign languages     Seems sensible as this is a tried and tested method.                  Yes as long as this does not make the questionnaire too long.         No comments
           is important and testing whether an independent organisation can
           be used to collect the data on behalf of councils would be very
           useful. Again LINks might have a role in some of this.


21                                                                               We prefer option 2 – use of existing cognitively tested scales or     We are not entirely convinced by the proposal to use ASCOT.           OK
                                                                                 questions (used in previous UES) supplemented with extra              Additional questions will almost certainly be needed to capture the
                                                                                 questions, where they are needed. This would also allow               full range of user and PPF outcomes
                                                                                 comparability, continuity and a degree of checking. We are not
                                                                                 convinced that the use of a new set of questions in a new survey
                                                                                 (along with the new National Indicators) is the right way to go. We
                                                                                 are not sure on the basis of what evidence the use of the ASCOT
                                                                                 questions has been proposed over Option 2 - existing questions -
                                                                                 as the „reasons‟ given are not addressed in depth and don‟t seem
                                                                                 particularly valid or strongly argued. The ASCOT questions do not
                                                                                 map well to Improved Health and well being, economic well being
                                                                                 etc OHOCOS outcome standards. Perhaps the ASCOT questions
                                                                                 are a minimal core set of some specific questions with CASSRs
                                                                                 able to add other tested and validated questions for local outcome
                                                                                 data collection. Perhaps if we had more information about how the
                                                                                 decision to go for option 3 was decided - it might be easier to
                                                                                 discuss.
Response   9. Do you have any more general comments on the core               10. Questionnaire content:                                                 11. Do you have any opinions about how these data should be          12. Do you have any other comments to make about the
Number     questions?                                                         Do you agree that the questions specified above should be                  collected, i.e. through CASSR databases or as additional             additional questions?
                                                                              collected alongside the ASCOT measure?                                     questions on the questionnaire?



17         No general comments                                                Agree – should be collected in along side ASCOT measures – one             Feel additional questions should be added to questionnaire, and      Areas for local questions – will this still be an option?
                                                                              questionnaire is better than several.                                      CASSR can provide base data (as we do now)




18         There needs to be some focus on the availability of services in the Yes                                                                       No                                                                   No
           market (i.e. to cater for niche needs and to check whether adequate
           choice and support is available in the locality). This would be useful
           for the Local Authorities purposes in terms of learning and service
           development.




19         Seem reasonable set. We don't want too many.                       Yes                                                                        Simple demographic data, our data quality is good so we provide.     Yes, all seem necessary to inform the story.
                                                                                                                                                         Save the space to ask other questions - preferably one that we
                                                                                                                                                         choose locally.                                                      What about:
                                                                                                                                                                                                                               - in receipt of direct payment/individual budget collected from
                                                                                                                                                         Similarly, better for us to answer on size and/or type of care       CASSR?
                                                                                                                                                         package, provider etc. Different if you are asking for a judgement   - completed this yourself or with help from questionnaire?
                                                                                                                                                         on something.




20                                                                            Yes that seems fine.                                                       Through databases is probably the best way to gain accurate
                                                                                                                                                         information rather than asking respondents to self classify.




21                                                                            We agree that ASCOT on its own probably isn‟t sufficient. However,
                                                                              the additional information makes this a much longer and more
                                                                              complex data collection. The ADL IADL data will presumably come
                                                                              from existing assessment forms eg FACE etc and comparability will
                                                                              need to be ensured. ADL data will change especially if an enabling
                                                                              option is offered initially for 6 weeks ie there could be considerable
                                                                              improvement between assessment and review after the service has
                                                                              been provided. It might be necessary to specify at what point in time
                                                                              the ADL info is to be collected. As self directed care expands
                                                                              rapidly – we will know the amount of money offered but not
                                                                              necessarily all the detail of what it is spent on (except at the time of
                                                                              review)
Response   Finally.
Number     Do you have any more general comments?




17         No further comments




18         There is an issue around measuring outcomes that are influenced
           by a wider range of variables than just quality, suitability and choice
           in local social care provision. This was discussed at the regional
           event in Leeds. Using outcomes to influence performance
           judgements of the Authority when other variables affect success
           perhaps poses problems. We will be interested to hear what further
           consideration has been given to this issue.


19         We think there should be opportunity for additional local questions?
           We would rather come up with our own but half way position might
           be to choose from a bank.




20




21         We are very much in favour of user (and carer) outcome collections
           and believe this is the basis of more usable effectiveness
           measurement. We are looking at using (1) if individual user defined
           outcomes (in self directed care plans) have been met or not (2) if
           people have improved or worsened on validated scales eg ADL
           (before and after service eg at assessment and review) (3) user self
           reported perceptions on the 7 user outcome standards plus the PPF
           outcomes safety and possibly nutrition. We are not entirely sure
           where the proposed ASCOT measures fit here. At present they look
           like some specific and some very general measures of need and it
           may not be entirely clear if they are in (2) or (3)
Response   1. Data collection:                                                       2. Sampling frame:                                                      3. Method for sampling:                                        4. Development activities for the first PPF survey:
Number     We ask you to comment on the proposal to only use proxy                   We have taken the view that care homes residents should be              We propose that for the first PPF survey each CASSR should     Do you have any views as to the focus of the cognitive testing?
           respondents to encourage responses from those who are                     included in the first PPF survey. We ask for your comments on           select a sample by simple random sampling at one point in time
           unable to self-administer the questionnaire and consider                  this proposal.                                                          from their case records. We ask for your comments on this
           developing a version for people with learning disabilities                                                                                        proposal.

22         Agree to allowing proxy respondents, but should be identified as          Agree they should be included. Most L.A.s should be able to         Agree.                                                                          How would the proxy sample for testing be selected? Potentially
           such. Do not agree that survey should be only postal with proxy           provide independent advocacy support for people who lack capacity                                                                                   proxies could be drawn from a very wider range of people. Is there
           option – this dis-empowers people who could respond for                   y or have no proxy other than care home staff. Should also include                                                                                  any point? How complicated is it likely to be? Keep the survey
           themselves if the format was right (e.g. visually impaired people).       people living in Extra care settings. Does the sample frame include                                                                                 simple, encourage people to „tell their story‟, focus on outcomes;
           Increases potential for skewed data. Most L.A.s have capacity             people with mental health needs?                                                                                                                    what‟s made a difference/worked well? What hasn‟t? Avoid the
           locally for supporting participation by people with special needs and                                                                                                                                                         temptation to over-complicate things; then you won‟t need to Pilot
           already use this in relation to the PSS Surveys and other                                                                                                                                                                     and do cognitive testing.
           consultation and engagement work – don‟t re-invent wheels. There
           are established and proven systems for producing Easy Read
           versions of docs. . The level of questioning in the survey is unlikely
           to produce significant interpretative or cognitive difficulties.
           Probably worth exploring the option of making an email/electronic
           version available; likely to encourage/facilitate a better response.

23         Potentially low response rates from this population – as completion       Important these service users voices‟ are heard. Using proxy            Simple random sampling is straightforward and „tried and tested‟. A         Questions answered with proxy respondents are of particular
           is difficult and relies on the help of family/friends/carers. Potential   respondents particularly difficult in this environment – as proxy       simple random sample means any drill-down analysis into sample              interest/concern. Also focus on the potential „easy read‟ version for
           for biased answers if someone with a vested interest completes on         respondent might be an employee of the care home, biased might          sub-groups is unreliable – the sample isn‟t stratified into any             learning disabled, since it is important nothing is lost in the
           their behalf (e.g. care assistant). Answer reflects thoughts of the       potentially be introduced. CQC have designed a process that             groupings (age, type of care etc.), meaning local analysis into these       translation. Observation method is of interest/concern.
           proxy respondent also, potentially to a greater extent than the           ensures someone „close to the respondent‟ is present to negate this     areas isn‟t statistically reliable. From a national perspective, there
           interviewee. Much lower cost approach than interview, despite             risk – unsure how this would work. Observation method is                isn‟t a need to stratify the sample as the aim is to assess „overall
           these major drawbacks. Easy-read version for those with learning          subjective, based on Observers views and values – therefore may         experience‟ not differences within the groups. For smaller
           disabilities could be effective (and cost-effective).                     bias the results.                                                       authorities with a smaller population, it will be critical to ensure that
                                                                                                                                                             sample size is large enough to allow random sampling, which is
                                                                                                                                                             representative of the service user population.


24         We recognise that there is an issue about people who are unable           We are already doing a lot of work in Islington to find out the views   While we would prefer not to include all client groups in the same          Please see our earlier remarks about proxy respondents. We would
           to complete the questionnaire themselves. However, we do not              of people who live in care homes. This is not done through a postal     survey because we feel this will dilute both the questions and the          prefer further work to do done with the target groups, especially as
           believe that using proxy respondents is the answer. Our experience        survey but through careful 1:1 interviewing. We believe the views of    usefulness of the findings, if this approach is taken we would              such a wide range of different groups are to be included in the
           is that relatives, carers etc may have a very different perspective       people in care homes are very important, but are not convinced          endorse the simple random sampling method. We would welcome                 survey. We have commented in the past about certain phrases and
           from that of the service user. We would recommend, for example,           they should be subsumed into a „catch-all survey‟. We would prefer      clarification on the size of the sample. Islington is a small borough       questions in the PSS surveys which have been ambiguous for our
           using a different methodology to gain the view of such people rather      further work to be done by PSSRU etc before they are included.          and for PSS surveys in the past we have always carried out a full           clients, and have never had our points addressed. We would
           than trying to include them in one catch-all survey. Likewise, while      There are also significant resource issues is we are to be required     100% sample. Even so, we have found it not possible to make                 welcome the opportunity therefore to involved in any cognitive
           we can see the value of an easy read version of the questionnaire         to include them, given the unsuitability of the postal approach. We     comparison between sub groups for some of the surveys. The                  testing of questions.
           (and we use this approach a lot in Islington already), the outcome of     think it is important to find out the views of relatives/carers         importance of these subgroup comparisons may determine the size
           such a questionnaire should not be compared like-for-like with            separately and would welcome clarification of the future of the         of the sample. Again there are resource implications for local
           answers from the full questionnaire. We would also prefer to              carers‟ survey.                                                         authorities. If stratified sampling were the preferred approach, this
           conduct dedicated research with LD clients (much in the way the                                                                                   should be by primary client group only.
           PSS surveys have been a different client group every year)
           whereby we could use alternative methods. Easy-read is not a
           panacea and will only reach a small proportion of LD clients. We
           have concerns that different authorities would take different
           approaches, rendering the surveys incomparable.

25         Concerned about data quality if the proxy is a carer from a private Yes, subject to the tested validation of data quality in Q1 and taking        Concerned that some sub-groups may not be represented in the           Yes, per Q1, proxy testing is a priority for all client groups and
           agency. Our evidence would suggest that we would be unlikely to mental capacity, insight and ability to communicate into account.                 sample at all (i.e. geographical location, ethnicity, client category, situations (interpreters, care homes, learning difficulties, etc.)
           get more returns by encouraging proxy respondents because                                                                                         etc) particularly where the sub-group is small. No amount of
           people tend to use help / proxies anyway. Perhaps a question                                                                                      adjustment can resolve this situation. Where sampling has resulted
           should be included which identifies whether a proxy was used, if so,                                                                              in low numbers for any particular sub-group weighting is probably
           how they were appointed (through choice or through default) and                                                                                   invalid
           what type of help they provided (did they just read the form and
           write the responses or did they help to interpret and decide the
           answers. Believe the validity of questions requires testing. In the
           case of a service user lacking mental capacity or insight or ability to
           communicate I wonder whether a response is at all valid via a
           proxy, particularly for the more personal questions.
Response   5. Future development activities:                                6. Questionnaire content:                                                           7. We propose that additional questions on health could be                8. Of the options considered we have a preference for the EQ-
Number     Do you have any views as to importance of the further activities We ask you to comment on the proposal to use the ASCOT                              collected alongside the ASCOT measure and have suggested                  5D because of the potential for long-term benefits in terms of
           that are suggested?                                              questions as the basis for the core questions.                                      either a question on self-perceived health or the EQ-5D.                  linking with health.
                                                                                                                                                                Do you think additional questions on aspects of health should             Do you have any comments on the proposal to include the EQ-
                                                                                                                                                                be included ?                                                             5D alongside ASCOT?

22         Key Issues are: samples should be representative of client groups         Some of the terminology is unsuitable - particularly around being          No particular views                                                       No particular views
           and demographics and not self selecting sothat comparisons of             clean and presentable – what do you mean by presentable Rating
           experience can be made across client and demographic groups               scales/measures approach can be somewhat reductive; practical
           Use resources developed over time at local level to collect the data      may be, but reductive.
           – no need for an independent organisation - extra expense and
           wouldn‟t have the range of skills needed for the client groups
           Explore links to review process as a priority – now is the time to do
           it, as L.A.s are setting up personalisation structures and processes.
           Is some/a lot of this information already captured? Avoid
           duplication. LA‟s are, for the most part, increasingly skilled at
           engaging with customers/citizens and may already have this info to
           hand


23         The IC suggest focussing on „relative budgetary importance‟ and by        The IC suggest focussing on „relative budgetary importance‟ and by         ASCOT only captures „food and nutrition‟ aspect of health in its          Good idea to use a standard that links in well with wider health
           „any differences in response rates between groups‟ – I feel the           „any differences in response rates between groups‟ – I feel the            domains – none of the wider aspects of health are captured in the         usage of the data – used in assessments of health technology and
           second is particularly important since it is vital groups that may        second is particularly important since it is vital groups that may         ASCOT question set. Health is a PPF domain, so if the survey is to        drugs. Suits the long-term roadmap of collaboration with health
           have low response rates have their voices heard (e.g. learning            have low response rates have their voices heard (e.g. learning             capture the full range of outcomes additional questions must be           surveys. Potentially repetitious, since there is some overlap with
           disabled). Residential should be included in the development of the       disabled). Residential should be included in the development of the        asked. If EQ-5D model is applied it must be fit with the ASCOT            ASCOT questions – but does not add much length to the
           survey and testing/piloting of the survey. Development/Validation         survey and testing/piloting of the survey. Development/Validation          measure to ensure consistency of approach.                                questionnaire. To exclude duplicate questions would preclude any
           of PI‟s should be undertaken in conjunction/in consultation with          of PI‟s should be undertaken in conjunction/in consultation with                                                                                     usage in economic assessments (as above). If the survey is
           Adult Social Care Performance Leads, perhaps through                      Adult Social Care Performance Leads, perhaps through                                                                                                 administered through Social Care, there must be appropriate
           workshops/regional focus groups.                                          workshops/regional focus groups.                                                                                                                     partnering arrangements between Heath and Social Care in terms
                                                                                                                                                                                                                                          of focusing on outcomes of the survey. Health Partners must be on
                                                                                                                                                                                                                                          board to ensure that health aspects are acknowledged and
                                                                                                                                                                                                                                          addressed, as necessary.
24         In our view many of these activities should be carried out BEFORE         We recognise that is much more difficult to determine outcomes for         While we think it is important to do what we can to integrate health      We have no comments on this point
           the survey goes ahead. Particularly points 1-7. Without this, we          people from a survey instrument than their satisfaction levels. We,        and social care evaluations, we would be cautious about health
           think there is a danger that the data obtained from the first survey      like other local authorities, are already looking at ways of finding out   questions being included in this survey. The survey itself is likely to
           would not be particularly useful locally, and not reliable enough to      this information. We think the questions proposed in Appendix 4            be long. It needs to be kept as focussed as possible, and to issues
           be use for national comparisons. Clear guidance from the IC will be       are usable and not dissimilar from existing questions, but are not         that are the responsibility of local authorities.
           absolutely essential.                                                     convinced they give us a good indicator of outcomes to warrant the
                                                                                     extra development. For this reason we would go with option 3,
                                                                                     although don‟t see this by any means as an ideal solution. We
                                                                                     would prefer to use qualitative approaches, e.g. at reviews.




25         Q1 - probably important for some CASSRs but not particularly for          The proposal to use ASCOT questions seems reasonable and we          Yes                                                                             EQ-5D seems reasonable.
           South Gloucestershire Q2 - a priority for all categories of proxy         are happy with the questions except:- Q1 doesn't include the
           (including interpreters, learning difficulties, care homes etc) Q3 -      Choice aspect of the PPF domain Q2 doesn't use the word
           necessary Q4 - Reflecting on para 3.2 point 2 in the main                 'comfortable any more, but now uses the word 'presentable' which
           document, where the same set of questions should be applicable            implies a certain level of standard of dress that some service users
           and accessible to all service users and their carers, this should         may not be interested in. They may know that they have poor
           include those with learning difficulties, poor literacy skills or those   levels of hygiene and yet may be perfectly happy with the way that
           without English as their first language. i.e. the questionnaire should    they present themselves which is a matter of choice, but this option
           be easy read anyway and there shouldn't need to be a separate             isn't covered.
           easy read version. Don't accept that for the purposes of this
           questionnaire that the sense of the questions should be lost. But
           accept that the questions would need to be re-written and therefore
           tested. Without this approach yes, cognitive testing should be
           completed. Q5 - necessary Q6 - only of any value if able to identify
           which people have cognitive impairment, either to exclude
           responses if testing suggests so, or to aply a weighting factor Q7 -
           is this not a sub-set of Q2? Q8 - Is this question really whether they
           should be used (due to the data protection considerations) rather
Response   9. Do you have any more general comments on the core                10. Questionnaire content:                                           11. Do you have any opinions about how these data should be             12. Do you have any other comments to make about the
Number     questions?                                                          Do you agree that the questions specified above should be            collected, i.e. through CASSR databases or as additional                additional questions?
                                                                               collected alongside the ASCOT measure?                               questions on the questionnaire?



22         no                                                                  Aim to keep questionnaires as simple and as brief as possible,        Might be more accurate through L.A. databases                          No
                                                                               hence best to use existing databases wherever possible What use
                                                                               will be made of the data? If you need to know it, collect it, if not,
                                                                               don‟t burden people with unnecessary questions.




23         no                                                                  ASCOT and EQ-5D questions capture outcomes, the IC suggests         This is straightforward to do (from our point of view) – I suggest we    No
                                                                               that the resource inputs (e.g. packages of care) and outputs be     remove these questions and use the client database to capture
                                                                               captured also – as these are the most important variables (although demographic and care package information.
                                                                               environmental factors are useful also). It seems reasonable that
                                                                               these inputs are captured.




24         No further comments.                                                The resource implications of collecting this information alongside   See above. We currently find collection of this extra data is very      No further comments
                                                                               the questionnaire need to be taken into account. There is a danger   time-consuming. However, we would not want to add to the length
                                                                               of low response rates which would make collection of all this data   of the questionnaire
                                                                               not cost effective or useful.




25         Per question 4, Reflecting on para 3.2 point 2 in the main              Yes but as we move towards personalised budgets we may be        If we have the data we'd prefer to extract it to reduce the length of   May need to think more imaginatively about what background
           document, where the same set of questions should be applicable          unable to determine what services or other things make up a      questionnaire. Assuming confidence with the level of database           information is useful with personalised budgets, perhaps because
           and accessible to all service users and their carers, this should       persons package of care from our databases.                      data quality.                                                           they are intended to be reducing packages of care over time for
           include those with learning difficulties, poor literacy skills or those                                                                                                                                          rehabilitative type care, or short term interventions. Perhaps we'd
           without English as their first language. i.e. the questionnaire should                                                                                                                                           want to know if they have used a broker or other agent to decide
           be easy read anyway and there shouldn't need to be a separate                                                                                                                                                    how to spend their budgets, etc. It might be interesting, for
           easy read version. Don't accept that for the purposes of this                                                                                                                                                    example, to find out whether they have hired a PA to deliver their
           questionnaire that the sense of the questions should be lost. But                                                                                                                                                care.
           accept that the questions would need to be re-written and therefore
           tested. Without this approach yes, cognitive testing should be
           completed.
Response   Finally.
Number     Do you have any more general comments?




22         No




23         No




24         While we have undertaken PSS surveys for a number of years,
           these have been resource intensive and have had limited use
           locally. We are not convinced that the method is appropriate for
           determining outcomes, and is limited in terms of experience and
           satisfaction. Our preference would be to keep to specific client
           groups or services (though recognising the service focus may
           diminish in the coming years) until the methodology for the new
           survey has been thoroughly tested. The proposal to pilot the
           survey in 2009/10 we therefore believe to be premature. The
           resource implications for us as a local authority, coming hard on the
           heels of a new PSS carers survey later this year and at the same
           time as we are carrying out the 2nd PSS ICES survey, will be
           significant.




25         If the survey is too long there is a risk that it won't be completed or
           that answers to the later questions are not as good quality as the
           answers to the earlier questions.

								
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