2011 02 10 Mind s response to social care transparency in outcomes by 57A9Rp


									Department of Health consultation on transparency in outcomes: a
framework for adult social care

Response from Mind

About Mind
Our vision is of a society that promotes and protects good mental health for
all, and that treats people with experience of mental distress fairly, positively,
and with respect.

The needs and experiences of people with mental distress drive our work and
we make sure their voice is heard by those who influence change.

Our independence gives us the freedom to stand up and speak out on the real
issues that affect daily lives.

We provide information and support, campaign to improve policy and attitudes
and, in partnership with independent local Mind associations, develop local

We do all this to make it possible for people who experience mental distress
to live full lives, and play their full part in society.

Executive Summary

Mind welcomes the opportunity to respond to Transparency in outcomes: a
framework for adult social care. Mental health is already the largest single
category for NHS expenditure1 and the prevalence of mental health conditions
is rising2. Social care services support recovery, social inclusion and
independence for people with lower-level needs, often preventing recurring
access to health services.

The Coalition Government’s own statement in ‘A vision for adult social care’
suggests social services should be used to support people to manage long-

  “The largest spending category across this period has been mental health problems. In
2008/09, NHS expenditure on mental health was £200 per head, up from £148 in 2003/04.
From NHS Funding and Expenditure, January 2011, House of Commons Library, p.7
  The World Health Organisation states that ‘by the year 2020, depression is projected to
reach second place of the ranking of the global burden of disease’ See p.3 of this document
for further details.

term conditions and alleviate pressures on health services3. Social care
services can be offered when an individual has a lower level of need and
prevent the need for access to acute health services further down the line.

Mind agrees that a carefully developed quality and accountability system is
essential for ensuring high standards of care and better outcomes for people
needing social care support. We are concerned that some of the proposals
outlined in the consultation do not provide sufficient accountability to ensure

     Issues                                       Recommendations
1    Public-facing accounts, as                   Public-facing accounts should
     described, have much in common               consider ongoing learning from
     with Quality accounts in the health          Quality accounts in health. Annual
     system. Following their first full           inspections should remain until
     year Quality accounts have been              assurances can be given that these
     shown to have limited impact, with           accounts can work practically for
     some providers choosing to meet              both professionals and patients.
     only the lowest level of
     requirements (which are already
     legally obligations) 4. In many
     instances it has not been
     practically possible for the public
     (or even professionals) to
     differentiate the quality of care
     between providers on the basis of
     their health Quality accounts5 due
     to ineffective presentation of
     information, the selection of non-
     comparable measures, and
     unbalanced use of patient
2    Individuals accessing social care            HealthWatch should be made
     may need support to carry out a              accountable for ensuring a certain
     scrutiny role. Many people struggle          percentage of users are acting in a
     to make sense or to navigate their           scrutinising role. The profile of those
     way around services available to             scrutinising services should be
     them. Measures are needed to                 monitored to ensure a range of
     incorporate their feedback into any          groups are involved.
     public accountability mechanism.

3    User and carer-led assessment of             The Care Quality Commission must
     services should be encouraged,               continue to carry out regular
     but cannot alone ensure a high               inspections. Service user and carer
     standard of social care services.            assessments should play a core

  ‘A Vision for Adult Social Care: Capable Communities and Active Citizens’, Department of
Health, 2011 (paragraph 3.13, p.13)
  ‘Accounting for quality: an analysis of the impact of Quality accounts in the NHS’, Health
Mandate, September 2010
  ‘Conclusion and recommendations’. Ibid (p15)

                                          role in the inspectorate’s
4   The regulatory model of               The Government should provide
    registration, compliance,             clarification on what would be
    inspection is insufficiently detailed sufficient risk to trigger an
    to enable Mind to make a              inspection and how crises will be
    judgement on its suitability.         avoided if the system relies only on
                                          a high number of complaints or
                                          annual data.
5   Quality Standards for social care     Quality Standards should be
    will have very limited impact if they incentivised through:
    are optional, with few incentives     i) service contracts
    behind their usage.                   ii) inclusion of the measures defined
                                          in Quality Standards in national data
                                          iii) through inclusion of Quality
                                          Standards in the Care Quality
                                          Commission’s assessment process.
                                          Carers and service users
                                          conducting an assessment should
                                          be encouraged to refer to the
                                          Quality Standards and receive
                                          support to make sense of these.
6   While there are benefits of local     The Government should set a
    measures, standardised measures number of national compulsory
    across all local areas are needed     measures drawn up after
    to enable the public to compare       consultation with service users and
    services.                             carers. These national measures
                                          should go beyond legal
                                          requirements only. In addition we
                                          recommend the creation of a
                                          number of optional measures, again
                                          drawn up following consultation,
                                          from which authorities can pick out
                                          priorities they wish to track locally.
7   Where local measures are also         All published measures should
    published, they must be               include an explanation of what good
    meaningful to people accessing        performance looks like, together
    social care.                          with trend data so that patients and
                                          the public know whether things are
                                          improving or getting worse.
8   Mind anticipates rising incidence of The Department of Health should
    mental distress, as predicted by      work closely with other government
    the World Health Organisation and departments, such as the
    due to the additional impact of       Department for Work and Pensions
    rising unemployment and debt          to ensure commitments made in the
    (see below). As recognised in the     ‘Vision for adult social care’ and
    public health strategy, a             ‘Healthy Lives, Healthy People: our
    preventative system relies on         vision for public health in England’
    inputs that go beyond the health      are achievable and mental health

    system alone.                         problems are not exacerbated by
                                          reduced access to housing or
                                          income supports.

                                        Departments with responsibilities
                                        that affect demand for social care
                                        should be responsible for
                                        complementary indicators to those
                                        in social care (such as the number
                                        of adults in contact with secondary
                                        mental health services who are in
                                        settled accommodation).
9 Mind is pleased to see mental         The Department of Health should
   health-specific measures within      align the wording of the health and
   most domains and outcome             social care domains and align as
   indicators, the use of surveys, and many of the indicators as possible
   good coverage of the whole care      to ensure these services are
   pathway. However, we think health working towards the same goals
   and social care domains could be     and to incentivise them to work in
   brought even closer together.        partnership.
10 There are insufficient indicators to The Department of Health should
   track deterioration in mental health include indicators on the
   (Domain 2). This is a significant    deterioration of mental health
   omission considering the high        conditions such as tracking access
   costs of re-entry to the health or   rates in psychiatric settings or crisis
   social care system.                  mental health services.


Mind’s work is informed by consultation with people with experience of mental
distress. Following a call for evidence on the Transparency in Outcomes
document, Mind received 22 responses from people experiencing mental
distress. Our response is also informed by evidence collated in a survey on
changes to social care carried out at the end of 2008 and 12 focus groups in
2009 as part of the ‘Putting us first’ project funded by the Department of
Health, which looked at implementing personal budgets for those with social
care needs (more detail is provided in the Appendices). Unless otherwise
stated, the quotes found in this document are from anonymous responses to
the ‘Transparency in outcomes’ consultation exercise.

Response to questions

1. How should Quality Standards in social care balance guidance on
service practice, cost-effectiveness, what matters to people and
outcome expectations?

86% of people who responded to our consultation felt that ‘what matters to
people’ should be predominant in the formulation of Quality Standards:

        “We want a person-centred service”.

Mind believes all the factors identified in this question are important and,
critically, that they are inter-linked. Service practice informed by what matters
to people is more likely to create a high-quality patient experience. The
benefits of a high-quality patient experience can be improved outcomes6 and
lower costs7.

We support the intended use of Quality Standards to join up practice along
the patient-care pathway, although more information is required on how this
will be enabled.

Despite recognising the value of Quality Standards, Mind has concerns over
the influence they will have in improving service quality. There seem to be
limited incentives to ensure they are used and there was poor implementation
of NICE guidance even before the financial downturn.8

Before significant time and resource is spent on developing Quality Standards
for social care, consideration is needed on how their implementation will be
ensured. Quality Standards in social care should be obligatory and their
implementation given at least the same priority as they have been given in the
health system, where the NHS Outcomes Framework has them embedded in
the quality improvement system and linked to payment mechanisms.

In both health and social care, greater clarity is also needed on where
individuals can take complaints if Quality Standards are not being adhered to
in their area.

3. How can Quality Standards be developed to support service users as
commissioners, and local people in their role to hold councils to

If Quality Standards are not compulsory, there will be limited opportunity for
councils to be held to account for their non-delivery either by local people or
by anyone else. Moreover, people are not always sure where to take their

      “I’m never sure if it's the regulatory body of the profession (e.g. social
      workers) or the council or my local councillor or my MP or whether you're
      just supposed to go straight to advocacy.”

  ‘Feeling better? Improving patient experience in hospitals’, NHS Confederation, 2011
  ‘Patient and family-centred collaborative care: an orthopaedic model’ DiGioia A,
Greenhouse PK, Levison TJ, 2007
Building the business case for patient-centred care’, Charmel PA, Frampton SB, 2008
Referenced in NHS Confed, ‘Feeling Better?’, 2011
  ‘What’s the evidence that NICE guidance has been implemented? Results from a national
evaluation using time series analysis, audit of patients’ notes, and interviews’ Sheldon T et al
BMJ 2004; 329:999

If local people are able to hold councils to account, data against each of the
Quality Standard’s measures will need to be published, along with an
explanation of what good performance would look like and an illustration of
the trend in performance over time. This information will need to be easily
understood and comparable so that people using social care can judge the
quality of services to that in other areas.

The Government’s own publication on the Information Revolution recognises
that the public cannot be expected to make sense of raw data and that
intermediaries will be required. Some respondents feel uncomfortable
communicating directly with authorities and need support to give feedback:

     “I have been told of one place [to go] but don’t feel equipped to deal with
     this. In all NHS Trusts there is a PALS and I think that’s a bit in between
     the two and I think local councils should have something similar for social
     care, something that’s in between, something that’s not as official as the
     external organisations that are not so easy do deal with when you’re in

HealthWatch should be responsible for helping people to undertake a
scrutinising role. The involvement of these individuals, who are actually using
services, is essential to a public accountability mechanism. National and local
HealthWatch will need to be resourced to undertake this time-consuming,
often face to face, process so that they gain more than tokenistic involvement.
Currently, local HealthWatch is to be commissioned by local councils which,
given the cuts to council budgets, raises concerns about the funding available
to allow them to carry out a scrutinising role and to support hard to reach
groups to do the same.

When service users do take on a scrutinising role, the Government will need
to ensure that their feedback receives a meaningful response, so that people
feel their comments are being listened to.

4. Do you agree with proposals for a single data set for adult social care
supported by a single collection and publication portal?

Mind strongly agrees with the proposals for a single data set. Without a single
data-set, individuals feel unable to compare services and they consider this to
be important (see Mind’s answer to question 10).

People with mental health problems indicated a preference for a single
collection and publication portal as it makes it easier for them to access data.
Mind also recognises that the quality of data would be better and more cost-
effectively assured if published from a single portal.

However, if the same publication portal is to be used by commissioners,
providers, the Care Quality Commission and the public there may be
difficulties. The public need a contextualised and easy to understand source
of data that is written in simple language. We would suggest that any
publication portal should be able to be filtered by audience.

There is also a risk to public accountability if data is only published online.
People who are digitally excluded, particularly those accessing social care,
must also have access to this data.

5. Do you support the case for a set of consistent outcome-focused
measures, which combine the best available data on social care

Mind supports this. Without consistent outcome measures local councils and
providers cannot be compared. We believe that any data collated should
include service user-reported outcomes - the equivalent of Patient-reported
outcome measures (PROMS) in the health system. Individuals who perceive
the services they receive to be of high quality are more likely to experience
improved outcomes (see references in question 1).It is important that as many
service users is possible are surveyed in order for this measure to be
effective. If many service users do not give feedback, there may be significant
gaps in services.

6. Do the four domains and outcome statements proposed adequately
capture the breadth of outcomes which are relevant at the highest level
to adult social care?

Mind believes that the four domains outlined cover the main areas of interest
to people with mental health problems: providing services that will help people
recover, keep them well, help them manage a long-term condition and avoid
harm while in receipt of care. We also recognise the emphasis placed on
service-users’ input and control. We comment on specific indicators in the
answer to question 19.

Mind recommends that the social care domains use the same phrasing as the
equivalent NHS Outcome Framework domains. More explicitly matched
domains would encourage more shared indicators across the two frameworks.
This would better incentivise local social care and health providers to work
towards the same priority outcomes. Mind strongly supports the Government’s
stated commitment to joining up services but the failure to achieve
equivalence between the two sets of domains appears counter-productive.

Similarly, many of the ‘outcome statements’ within each social care domain
seem relevant to both the health and public health accountability frameworks
(for example, ‘Everybody has the opportunity to have optimum health
throughout their life and proactively manage their health and care needs with
support and information’). We would hope to see the ambitions addressed in
the social care outcome statements also explicitly embedded in any
commissioning guidance or outcome statements issued by the NHS
Commissioning Board or Public Health England.

7. Do you have any further views on how adult social care should align
with other sectors to support integrated working? How might this be put
into practice?

Respondents proposed a number of solutions to align services. These
included providing a single point of contact to join up services around the
user, joining up budgets, or having a single data collection point /
interdisciplinary meeting to ensure details on each individual are recorded
once and shared across all services. An individual explained how one of these
solutions is already working in practice:

    “It's already occurring for me and I think that method should be standard
    for all. Every three months all those involved in my care meet - GP, CMHT,
    care agency, carers, social worker and consultants. That way everyone
    knows how I am, has a chance to discuss my care, my situation and share
    worries /problems. They all get a chance to give feedback and suggest
    changes if necessary. I am lucky my team have time and opportunity to do
    this. It should be standard for all those in receipt of multidisciplinary care.”

Service users also felt that the services that could work together extend
beyond health, social care and public health:

    “Housing and mental health are a big issue that can have a great impact
    on people. As do employment and leisure.”

Good housing, not being in debt, being able to afford transport, exercise
activities and healthy food can prevent the incidence of or minimise the impact
of mental distress. In turn, people with mental health problems often feel the
impact of cuts in one area (eg in welfare) in another part of their lives (eg their
levels of mental distress):

    “The impact of the wider cuts agenda on mental health will be enormous.
    I'm sure many more people will need help… I find myself worrying more
    and more about the aims of the current government and this transfers onto
    my mental state. I have depression and have relapsed significantly. My
    biggest worry is that there will be nothing left to catch me when I inevitably
    fall. I'm terrified.”
    Individual with experience of mental distress who contacted Mind

Mental health conditions already make up the single highest category of NHS
expenditure at over 11 per cent of the whole9, and the expected increase in
mental distress levels are likely to further increase pressure on an already
stretched health system. Income support sources from the Department of
Work and Pension are being reformed and this is likely to have a significant
impact on those currently receiving welfare support, many of whom are out of
work and on benefits as a result of their mental health problems. The weekly
saving of moving someone from Incapacity Benefit to Jobseekers Allowance

  HC Health Committee ‘Public Expenditure on Health and Personal Social Services’ 2009,
DH Programme Budgeting Data
Notes: i) Expenditure classified to the category ‘other’ is not included in the chart. This
category comprises around 20% of total programme budget expenditure ii) Growth in social
care expenditure is partly affected by a change in calculation methodology, which arose
following the move to Area Based Grant funding to Local Authorities in 2008/09.

will not pay off if more individuals enter the acute health care system, as a
result of their lower level support being taken away or heightened distress
resulting in a reduction in income. Any attempts to make social care align with
other sectors should look at addressing all the factors that impact on a
person’s mental health.

It is also important that mental health conditions are not treated as less
significant than physical health problems and that individuals experiencing
mental distress are not stigmatised when accessing employment or housing
supports. Already, people with experience of mental distress endure stigma
and discrimination from employers, as shown in recent research:

        Employment is one of the most common areas of life in which people
        experience discrimination - almost 50% say they have experienced
        stigma and discrimination in employment and almost as many again
        have anticipated it.10

        Recent findings from the Shaw Trust suggest that there is still a long way
        to go to improve employers’ attitudes towards mental health problems:
        40% of employers surveyed said they view workers with mental health
        issues as a ‘significant risk’ and half would not hire workers with mental
        health conditions due to negative staff attitudes.11

Mind welcomed the recently published cross-government mental health
strategy’s call for mental health to be given ‘parity of esteem’ with physical
health as well as the Government’s commitment to financially supporting the
continued work of the Time to Change programme, the mental health anti-
discrimination campaign led by Mind and Rethink.

8. Do you support the proposal to replace annual assessments of
councils conducted by the regulator with public-facing local accounts
on quality and outcomes in adult social care?

Mind does not believe that public accounts will be an effective alternative to
annual assessments. This position reflects the views of those with whom we

        “I think very few people where I live would raise any problems.”

Respondents were particularly concerned about the reliability of public-facing

        “I don't see how it can [work] - they're publishing their own figures, they'll
        be massaged to present the best light of their work.”

     Stigma Shout survey for Time to Change, 2008
  Employers’ attitudes to people with mental health problems in the workplace in Britain:
changes between 2006 and 2009, Shaw Trust 2010

A review of Quality accounts in the health system found a number of issues
that prevent public accountability. The Government must ensure public-facing
accounts do not make the same mistakes. Quality accounts were found to
have a lack of:

        Appropriate indicators –63 per cent of mental health providers offered
         data on health care associated infections which is of low relevance to
         mental health. Only 32 per cent included waiting times which are
         important to mental health service users. Similarly, only 32 per cent
         included re-admission rates.
        Any indication of trends over time – this makes it very hard for service
         users to see if services are improving. Independent providers were
         twice as unlikely to provide more than one year of quality data as
         compared to NHS acute trusts. This is of concern due to the very high
         number of non-NHS providers offering social care supports.

        Accessible presentation –
         “In some cases, the very design of some of the data presentation
         sections avoids or discourages this [accessible presentation], with
         many providers choosing to devote parts of their quality accounts to
         long tables listing quality measures 12.”

        A clear indication of whether performance is good or bad and
         comparative data against peers or the national average –
         “Only very rarely is an indication provided of whether performance is
         good or not, such as through a separate column or a ‘traffic-light’,
         where performance is rated red (poor), amber (adequate or not
         particularly good) or green (good).13”

        A balance of positive and challenging patient feedback – accounts
         tended to include only positive patient feedback and the context of
         patient’s stories were not provided

The King’s Fund concluded:

         This diversity of quantitative content, coupled with lack of
         benchmarking information, means it is not practically possible to
         differentiate quality of care between providers on the basis of their
         quality accounts.14

These conclusions are worrying in the context of proposals to stop annual
assessments in social care and replace them with non-standardised ‘public-
facing accounts’. It will be essential that the challenges described above are
addressed first.

   How do quality accounts measure up? Findings from the first year’ The King’s Fund, 2011
   Ibid (p12)
   ‘Conclusion and recommendations’. Ibid (p15)

10. What is your view on the balance between requiring standard
elements in reports, and allowing freedom to fit to local circumstances?

The majority of those who responded to our consultation felt strongly that
standard elements were more important:

     “Comparison [is] more important than local tailoring. This enables you to
     look at the options available and gives you more data.”

     “I firmly believe we should have national standards.”

Mind recognises the Government’s commitment to ensuring the delivery of
services is shaped by local needs. However, people will move area and need
to be able to compare the services and thresholds offered in each area. This
will require wide-ranging national measures and standardised information on
service thresholds.

Mind proposes the Government set a number of national compulsory
measures, drawn up after consultation. These national measures should go
beyond basic requirements only. In addition we recommend the creation of a
number of optional measures, again drawn up following consultation, from
which authorities can pick out the additional priorities they wish to track

12. Would you support an assurance role for the local HealthWatch in
the production of accounts?

Mind would support an assurance role for the local HealthWatch in the
production of accounts and would add that National HealthWatch and people
accessing social care should be involved in shaping the format and structure
of accounts, not just in assuring accounts once councils have developed a
finished product.

13. We would also be keen to receive views on whether user and carer-
led assessments could support transparency and empower local

The incorporation of user and carer-led assessments is essential, but that
these cannot be the sole form of accountability. Some individuals are certainly
capable of such reviews and assessment, but some are less capable or may
not be well enough to do this. Therefore, assessment by the Care Quality
Commission will still be required to ensure these users’ interests are

There should be a systematic process undertaken with service users to
encourage them to talk about their experience and how it will be improved, but
someone, ideally HealthWatch, would need to coordinate this. HealthWatch
would need to ask the right questions and to probe underlying messages from
less articulate service users. HealthWatch would need this to be a clearly
defined role and to be resourced to do this.

14. What role is there for financial incentives on providers or
commissioners at a national level to support the focus on quality and

Respondents to our consultation tended to be against financial incentives:

      “This money should go towards care and not incentives at a time where
      there are wide spread and very large cut backs that will inevitably affect
      service users.

      “Any rewards will only take the focus off peoples needs and on to ticking
      boxes. We want a person-centred service.”

There may be some limited benefit from using financial incentives or penalties
to ensure high quality services are delivered from both a patient experience
and outcome perspective. Further work is needed to assess the benefits and
disadvantages of such an approach.

15. How should the Care Quality Commission ensure that future service
inspections are risk-based and proportionate?


16. Does the regulatory model of registration, compliance and
inspection provide sufficient safeguards for ensuring minimum quality
standards across adult social care?

Mind agrees that, “all those needing care and support should…be empowered
and supported to challenge services when the quality falls short of what
should be expected” but we are concerned that not all people experiencing
mental distress are empowered or know where to find support to make a
complaint. Service users consulted felt strongly that Care Quality Commission
inspections were still required – including inspection of providers. They felt the
risks to their safety were otherwise unacceptable.

      “Too much regulation in unofficial ways would make it too hard to trust
      any agency when they are coming into my home. It's a huge risk.”

Registration, compliance and inspection may be an effective way to ensure
minimum quality standards across social care but more detail is needed on
what is meant by “a process of planned and responsive reviews, based on an
assessment of the unique risk profile of each provider”. We are unclear at
what point a provider would develop a higher risk profile or trigger a
responsive review. We assume this trigger would not be a reported death.
Annual data is also not sufficient as a provider could be performing poorly for
a whole year before a review process begins, let alone services improve.
More clarity is also needed around what sort of complaints and how many
complaints would be needed to trigger inspection. We wish to understand
whether individual service user complaints would be given the same weight as

complaints that come via HealthWatch. Until these questions are answered
we cannot give our full support to these proposals or ascertain whether the
regulatory model of registration, compliance and inspection is adequate.

19. Throughout the outcome domains, we would be grateful for your
views on the particular measures proposed, in particular:
    Their fit within the relevant domain and how they affect the balance of
      the set of measures as a whole;
    How they support joint working with the NHS and other partners;
    What interventions you think contribute towards the improvement in
      outcomes in this domain, and what evidence there may be locally on
      their cost-effectiveness; and,
    What further proposals may be available from 2011/12.

Service users we spoke to had specific suggestions on taking on board their

   “The main indicator is whether or not the quality of life of each individual is
   being improved by the care they are receiving - so ask them!”

   “There is client reported quality of life. And carers reported quality of life.
   [what about] Happiness - the government are big on measuring that, why
   not relate it to care as well?”

   “Improved independence [is most important].”

Mind and those we consulted with were pleased to see a range of survey
measures included. We would like to see incentives to encourage year on
year increases in the number and range of survey respondents. Self-selecting
respondents to surveys will not be representative of service users.

Their fit within the relevant domain and how they affect the balance of
the set of measures as a whole

We think the fit of indicators within Domain 1 is appropriate. We are
concerned that the deterioration measures in Domain 2 relate chiefly to older
people and that the needs of people with mental health problems have been
overlooked. Deteriorating mental health conditions are costly, with many
individuals ending up in crisis services. Possible suggestions for mental
health-specific indicators of deterioration include:

      The number of admissions to crisis services, hospitals and psychiatric
      The number of suicides or suicide attempts amongst those recently
       discharged or who are currently receiving social care
      The number of people in regular and ongoing contact with mental
       health services
      The number of individuals’ whose conditions deteriorated, or who
       moved further from their definition of recovery, shortly after being
       discharged (or whilst receiving ongoing care)

       Access to care not in a hospital (for the many service users who would
        prefer to be treated in the community and close to family, and for
        reduced system costs)

Mind supports the indicator in Domain 2 on delayed transfers of care but
wants the Government to ensure a clear definition of ‘appropriate discharge’ is
produced. There is often an absence of appropriate community settings or
supports to which those with experience of mental distress can be discharged.

We are content with the measures in Domains 3 and 4 and feel they
adequately reflect the NHS Operating Framework domains and the social
care equivalents.

How they support joint working with the NHS and other partners.

The interventions that will impact on mental health indicators (see below) cut
across sectors. There need to be complementary indicators for other
government departments that shadow those in social care. For example, the
Department for Communities and Local Government should have a
complementary indicator on the number of adults in contact with secondary
mental health services who are in settled accommodation.

What interventions you think contribute towards the improvement in
outcomes in this domain, and what evidence there may be locally on
their cost-effectiveness?

The most important intervention for many people is to allow them to have
power over their own lives and treatment. Therefore, to ensure users are
satisfied with services (Domain 3), feel in control of their daily life (Domain 1)
and report improved social-care quality of life (Domain 1), they must be
involved in defining their care:

       “[the best measure for me would be] to bring back the care plans that we
       used to have. That was the only indicator for me to know just what they
       think will work best. Then it can be altered and changed to suit that
       persons needs.”

There are a range of interventions that can improve mental health, dependant
on the individual. These include: medication, access to talking therapies with
a sufficient number of appointments to enable recovery, employment or
volunteering opportunities, appropriate housing (including ‘supported housing’
where required for those with more severe mental health conditions or
complex/ multiple needs), and exercise prescriptions.

More broadly there is also evidence of the benefits of: anger management
courses, art therapy (or other therapies not currently offered under the
Impriving Access to Psychological Therapies programme), befriending
services, meditation or mindfulness techniques, relaxation classes.

The Putting Us First focus groups (see Appendix Two) asked people what
impacted on their mental health (and therefore what they might use a
personal budget for):
    local facilities such as library, community centre or other activities to
      keep up connections with other people, socialise and meet new friends
    support in maintaining close personal relationships, and regular visits
      to family members or loved ones
    computers to communicate with others, support to learn the skills or to
      pay for internet connection
    educational courses or materials, or an assistant to help with studying,
      or motivation to study
    Contribute to society, and support in carrying out voluntary activities, as
      well as paid work
    membership of a gym, or a sports club, to get physically fit, and combat
      the effects of medication.15

In our 2008 survey (see Appendix Three) we asked people which additional
services and types of support would help them to live more independently.
                                       Number who said this service would
 Service                               help them to live more independently
 support with managing my money,
 paying bills etc                                                         34
 support to engage in community
 activity                                                                 31
 support to do the shopping                                               23
 Advocacy                                                                 22
 benefits advice                                                          21
 housing support                                                          19
 help around the home                                                     17
 meals on wheels, or help preparing a
 meal                                                                     12
 employment support                                                       10
 personal care support                                                     9
 support with parenting                                                    5
 residential care                                                          2

21. What are your views on designing common models for capturing
outcome information at the local level, which would be adopted on a
standard basis?

Common models for capturing outcome information in every locality, would be
welcomed. However, thought will need to be given on who would carry out
this role, what resource they would have to do this, and the training needed to
make sure they engage more hard-to-reach groups and are able to prompt
them to ascertain their underlying needs and outcomes. If this role is given to
HealthWatch, they need to be provided with adequate resource to carry out
this time-consuming role effectively.
     Summary findings from Putting us first focus groups, 2009

Nisha Makan
Policy & Campaigns Officer

February 2011

Appendix One: Mind’s consultation on ‘Transparency in outcomes: a
framework for adult social care’

Prior to writing this response Mind also consulted with service users and Local
Mind Associations. This included posting an online survey on the Mind
website (which received 22 responses within a week) and explaining the
proposed changes to social care. These can be viewed here:

Appendix Two: Putting us first

Putting us first was a project looking at direct payments and individual
budgets for people who use mental health services. Our response
incorporates the findings from four focus groups for people with experience of
mental health services, held during March and April 2009, and led by
researchers from the Norah Fry Research Centre at the University of Bristol.
The venues were in Yorkshire, Cumbria, the South West and London.
Twenty-six people attended these groups (14 men and 12 women), including
a range of people using local Mind services, Mind members who are not
currently using services, and a few people who have experience of direct

Appendix Three: Methodology and profile of respondents to
consultation on the reform of the care and support system, November

In Autumn 2008 Mind published a questionnaire on its website, and
distributed it to Mind’s networks of local Mind associations, of service users
(Mind Link), and campaigners (Mind in Action). We received 101 responses in
total. In addition, we held three workshops with service users at Mind Link
road shows in different locations around the country (Brighton, Newport, and
Exeter). We also received individual responses from readers of the Mind Link
magazine, where we published an article about the care and support debate.

Among respondents to our questionnaire, 61 per cent had used social care
services in the last two years. 98 per cent had experienced mental distress
and/or used mental health services in the last two years. 80 per cent of
respondents using social care (35 out of 44) did not have to pay a charge.
This included both statutory and voluntary sector services. Seven per cent
(three) paid a means-tested charge to the council, and five per cent (two)
bought their care services privately.


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