PATIENT AND PUBLIC INVOLVEMENT IN THE PRIMARY CARE TRUST FIT by csgirla

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									                                                                     Agenda Item No. 4 (b)




REPORT FROM THE SCRUTINY GROUP ON THE PATIENT
AND PUBLIC INVOLVEMENT IN THE PRIMARY CARE TRUST
FIT FOR THE FUTURE COMMISSIONING INTENTIONS
REVIEW
Executive Summary


The Scrutiny Group consisted of 3 members of the West Sussex Local Involvement
Network Stewardship Group who carried out their task via a questionnaire to the
members of the Public Reference Panels and to the Chairs of the Clinical
Commissioning Quality Groups for Emergency Surgery, In-patient Paediatrics and
Maternity. The Scrutiny Group applauds the Health Overview and Scrutiny
Committee (HOSC) and Primary Care Trust (PCT) for their commitment to public and
patient involvement in the Fit for the Future (FfF) Commissioning Intentions Review
(CIR) and for the work done by the Public Reference Panels. However the Group felt
that the process of involving patients and the public could be improved in the future
by taking account of the following recommendations;


   •   Lay representatives should be provided with an induction including a
       glossary of scientific/medical terminology as well as a key to the many
       acronyms in common usage in the NHS;


   •   Lay representatives should be given time to digest lengthy documents
       and to consult their community groups to enable wider input to the
       process of involving the public and patients;


   •   Rather than separate Public Reference Panels, the Scrutiny Group
       recommend that in future lay representation should be an integral part
       of expert Clinical Groups. This would enable lay people to better
       understand the issues in depth and therefore comment and challenge
       accordingly.


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Introduction

This report was initiated by the West Sussex PCT to evaluate public and patient
involvement in the FfF Commissioning Intentions Review. The PCT public
engagement manager asked for volunteers from the newly formed West Sussex
Local Involvement Network (WSLINk). Accordingly 3 members (including the Chair)
of the Stewardship Group carried out this task during July and August 2009.

The Commissioning Intentions Review was made up of a Clinical Reference Panel
which reported through the PCT Chief Executive to the PCT Board. The Reference
Panel was advised by three Commissioning Quality groups for Maternity, Paediatrics
and Emergency Surgery. These groups were led by the PCT but made up of
appropriate specialist clinicians. The clinicians were drawn from the main acute
providers i.e. Brighton and Sussex University Trust (BSUH), Surrey and Sussex NHS
Trust (SaSH) and Western Sussex Hospitals Trust (the newly merger Royal West
Sussex hospital and Worthing and Southlands hospitals).The work of the three
Clinical Commissioning Quality Groups (CCQG) was supported by three Public
Reference Panels (PRP).

Methodology

An Initial meeting was held with the PCT public engagement manager who supplied
the following papers;

       •   WSPCT Statement of intent “Reviewing Fit for the Future – next steps”
       •   The decision making/responsibility i.e. governance structure of the FfF
           Commissioning Intentions Review.
       •   Information about the recruitment process for membership of the PRP
           including person specification, terms of reference and ground rules for the
           Panel
       •   Membership of the PRPs and minutes of the meetings of the three Public
           Reference Panels
       •   June 2009 Drafts of the Commissioning Frameworks for Maternity
           Service. In-patient paediatrics and Emergency Surgery
       •   Public Reference Panel Reports for Maternity Services, Inpatient
           Paediatrics and Emergency Surgery

The Scrutiny Group collected evidence via a questionnaire (see Appendix 1) of the
Public Reference Panel members and the chairs of the Clinical Commissioning
Quality Groups. The three Stewardship Group members undertaking this task were
not part of the Public Reference Panels.

Findings

The results of the questionnaires can be found in the Appendix.

Conclusion and recommendations

There were some very positive statements made by members of the Public
Reference Panels who were pleased that the PCT were involving the public and
patients in the Commissioning Intentions Review. Panel members also felt that it was



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a worthwhile process. However, the way in which the public and patients were
involved was not ideal.

The Scrutiny Group recommends that lay representatives should be given more time
to consult their networks of patients and the public so that a patient focussed view is
obtained. The Group also recommends that in the future lay representatives should
be an integral part of the Clinical Quality Group. This will enable the lay
representatives to understand more fully and challenge where appropriate. For this to
be effective more time needs to be set aside for an induction process and for
documentation to include a glossary of terms to be made available to the lay
personnel. We realise that this suggestion may not be popular with all the clinical
experts but the argument relating to lack of understanding of detailed
scientific/medical issues is not a valid excuse to exclude lay representatives. The
Department of Health has a policy of including lay and user representatives on their
expert committees as they provide such a valuable perspective and the ultimate
responsibility for all policy decisions about healthcare lies with Ministers who
themselves are lay people.


Vicki King                                                          August 2009
Paul Renshaw
Tony Reynolds




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Appendix

SYNOPSIS OF FINDINGS FROM THE QUESTIONNAIRES


Emergency Surgery Public Reference Panel

Paul Renshaw spoke to four of the six PRP members and also the Chair of the
Commissioning for Quality Group. (One member of the PRP was on holiday. The
other was experiencing telephone problems on the day that the interviews took
place; another requested to reply by email).

The following are the synopses of the responses received:-

How were you recruited to the Public Reference Panel?
Two of the panel had received invitations directly; the others had seen invitations to
apply in various NHS and Voluntary Sector newsletters.

Do you feel that you had sufficient resources in terms of clarity of information
and support to the panel to effectively input the public and patient view to the
clinical group?
The responses here indicated a qualified “yes”, although those newly recruited to the
panel expressed the view that they weren’t given as much background information as
they would have liked.

     “…and I was very confused by the jargon used and would have
     welcomed a longer induction into the workings of both the organisation
     and the panels.”



Were you able to independently collect views from the patient groups likely to
be most affected by any change in commissioning of the services?
The majority view here was a resounding “No”. A single voice believed that he had
been able to consult with patient groups but felt time constrained and would have
preferred to have had the opportunity of a wider consultation.

Do you feel that minority view were represented i.e. Black Minority Ethnic
Groups, travellers groups, disabled groups?
The majority held that the views of these groups had not been represented.


   “There was next to no BME or minority group representation….they must
   be kept in focus in everything that is done.”

   “No…this was a reference panel. In my view we were not charged to
   reflect “views””.



Once a collective view had been formed, how was this considered by the
Clinical Group?
One of the panel was not available at the end of the process and was unable to
comment. Other members had taken the panel’s views to an evening meeting of the



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Commissioning for Quality Group, and had liaised closely with the CQG Chair. The
overall view was that PRP’s views had been adequately relayed to the CQG.

Do you have any evidence that the Clinical Group took the public and patient
view into account in their drafting of the Commissioning Framework?
Although specific reference to one of the finding by the PRP occurs in the draft plan
of the Commissioning Intentions for Emergency Surgery, most panel members were
of the view that it was too early too tell if their view had made an impact. Another
expressed the view that the PRP’s views would probably not be taken into account.

Were you content with the whole process and feel that the PRP made a
valuable contribution?
On balance, the panel was content with the process and believed that it had made an
“acceptable” contribution.

If you were starting again would you do it differently or the same? If differently
how would you like to see the public and patient views taken into account?
The majority view was that things could have been done differently.


 “I would have liked to have seen better co-ordination at the outset; and
 greater opportunity by patients to participate”

 “I would have welcomed the opportunity to mix patients with clinicians at all
 meetings…and speak to the with of the Emergency Surgery Clinical
PR was unable tothat meetings chair patients and clinicians alternated.” Quality
Group but she was able to respond by email.


What are your views on the public and patient involvement in your
deliberations within the Clinical Quality Group work?
Inputs were wide ranging and varied which is always very helpful. The CQG did its
work on a virtual and 1:1 basis. It was difficult for the PRP to engage directly but they
were able, and did, pass comments through to the group either through the chair or
the West Sussex PCT Public Engagement Manager.

   “I don’t think that this disadvantaged either party”
   “I attended all but the first of the PRP meetings and was impressed at their
   diligence and keenness to try and understand all of the (often complex)
   issues and to have meaningful input…..Indeed many of their
   recommendations have been inserted and credited within the final
   Commissioning Framework”



How would you like to see the public and patients involved in the future?
The chair expressed the view that it was helpful to have a cross-section of patients
and public available when undertaking projects and would like to see an even wider
engagement in the future.

 “As a result of feedback on the Commissioning Framework from our expert
 assessor, we are calling a further evening meeting of the CQG to refine the
 Framework and the Chair of the PRP meeting has confirmed his availability to
 attend.”




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Comment by LINK stewardship scrutiny group member for the Emergency
Surgery PRP.

   •   The responses from the PRP members questioned highlight the inadequacy
       of the PCT’s existing public engagement strategy and the gulf that exists
       between the rhetoric of world class commissioning vision and reality.
   •   I could find no evidence that the PRP established for this project was a true
       reflection of the views of local people.
   •   One of the key challenges is to understand what commissioners and PRP
       members, the public and patients, mean by “involvement”; and whether it is
       possible to translate the desire for involvement into outcomes that will
       improve local health services.

In-patient Paediatrics Public Reference Panel

Vicki King collected responses from the members of the In – patient Paediatrics
Panel and the following are synopses of their responses.

How were you recruited to the Public Reference Panels?
Recruitment was through the PCT Public Engagement Manager, via the Health User
Bank and by him emailing a list of Local paediatric support organisations e.g.
Children and family Centres, Springboard Project and asking for volunteers.

“the email was sent several times before people responded possibly because they
did not understand what was required of them and how they could make a
contribution.”

Do you feel that you had sufficient resources in terms of clarity of information
and support to the panel to effectively input the public and patient view to the
clinical group?
The Panel members had no direct contact with the clinical group and felt quite
separate from them.

“We did not have enough time to study the papers supplied which had many medical
terms and acronyms, it would have been useful to have a glossary”.

They also mentioned that some of the documents which gave an overview like the
National Standards Framework for Children and Young Adults should have been
supplied earlier on in the process. They felt also that they were missing some data
e.g. no of admissions, where the children lived.

Were you able to independently collect views from the patient groups likely to
be most affected by any change in commissioning of the services?
All felt that they had access to children who had been in-patients and their parents
and frequently heard anecdotal reports from them. However they would have liked at
the outset to gather these parents and children together to seek their views in a more
structured way, but there was no time to do this.

Do you feel that minority views were represented i.e. Black Minority Ethnic
Groups, travellers groups disabled groups?
The views of disabled children and their parents were relayed by one member who
worked with this minority group. Another member commented that she worked with
Bangladeshi mothers and children and the group did discuss the problems of
patients whose first language is not English.



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Once a collective view had been formed how was this considered by the
Clinical Group?
The collective panel view was taken to the Clinical Quality Group by the Chair of the
PRP, two members were not sure how their views were received.

Do you have any evidence that the Clinical Group took the public and patient
view into account in their drafting of the Commissioning Framework?
Panel members felt that their comments on wording i.e. “must” instead of “should”
were taken on board by the CQG but they were not sure whether their more
substantive comments were taken into account e.g. how to talk to children to get their
views, if a doctor or a nurse the child will want to please.

Were you content with the whole process and feel that the PRP made a
valuable contribution?
Panel members all said that they were pleased that the PCT had asked for their
input, one said that it was good to see a multi-agency approach working. However
they all felt given more time they could have been more effective.

If you were starting again would you do it differently or the same? If differently
how would you like to see the public and patient views taken into account?
All the panel members said that they would have;

           •   valued more of an introduction to what was required of them
           •   would have liked to gather views from the patient groups before they
               started the process of commenting on the commissioning standards
           •   They would have liked more time to consider lengthy documents, as
               sometimes they were only provided at the meeting not before and a
               glossary would have been really helpful

What are your views on the public and patient involvement in your
deliberations within the Clinical Quality Group’s work? How would you like to
see the public and patients involved in the future?
Aaron Gain (who chaired both the In-patient Paediatrics and Maternity Panel stated
that;

“Further consideration should be given to drawing up a report to Howard Lewis [the
PCT Public Engagement Manager) on PPI as it provided invaluable information. We
should engage the public in future developments”.


Maternity Public Reference Panel

Tony Reynolds spoke to all the members of the Panel and the Chair of the Clinical
Quality Group, all were most cooperative and the following is a synopsis of their
views.

How were you recruited to the Public Reference Panels?
Two people had letters from the PCT Public Engagement Manager, two were told to
respond by contacts in their children’s' groups, two found out about the process
themselves and one transferred from another Reference Panel




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Do you feel that you had sufficient resources in terms of clarity of information
and support to the panel to effectively input the public and patient view to the
clinical group?
Many reports had to be read and not all were available at the start and had to be
requested. NHS jargon and acronyms caused problems from the lay perspective.
PCT were helpful and provided information when requested

‘‘Literature handed out to mums to be should have been available to us from the
start''

Were you able to independently collect views from the patient groups likely to
be most affected by any change in commissioning of the services?
Patient group input was collected through the contributions of those members of the
Panel who represented organisations such as the National Childbirth Trust. No
approach was made by the Panel to patient groups but panel members had a useful
range of experiences themselves
The small group was able to come to collective views quickly and all members
believed their views had been considered.

'' I was able to feed in the views of the mothers at my children's centre''

Do you feel that minority views were represented i.e. Black Minority Ethnic
Groups, travellers groups disabled groups?
There was no input from specific groups such as BMEs or travelers but this was
alleviated by the National guidelines which form a basic structure. However other
problems such as rural isolation were discussed in detail.

Once a collective view had been formed how was this considered by the
Clinical Group?
The Chairman of the PRP went along to the next Clinical Group and presented the
collective view. The Clinical Group was persuaded to modify its views on several
major matters e.g. breast feeding, high risk babies and antenatal procedures. All the
Patient Panel agreed that they had influenced the Clinical Group and many of their
responses had been taken on board. There was a problem with the timing of
meetings as the Clinical Group had met twice before the PRP's first meeting, leading
to a lack of synchronization

Do you have any evidence that the Clinical Group took the public and patient
view into account in their drafting of the Commissioning Framework?
The entire Panel thought they had a useful contribution to make and the Panel was
a very good idea.

'' I really thought it was worthwhile and I hope there is no watering-down of our ideas''

If you were starting again would you do it differently or the same? If differently
how would you like to see the public and patient views taken into account?
There was a lack of GP and Health Visitor input; and the application form/ supporting
material was not user friendly and rather off putting. There needed to be more time
between meetings of the Clinical Quality Group and Panel. Also there should have
been a greater range of members recruited. As a result of needing to meet
deadlines, meeting dates were changed so baby sitting arrangements were upset
leading to limited attendances, access to a crèche would have helped and more
thought about the process.




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Questions posed to the Clinical Quality Group Chair

What are your views on the public and patient involvement in your
deliberations within the Clinical Quality Group’s work? How would you like to
see the public and patients involved in the future?
Aaron Gain (who chaired both the In-patient Paediatrics and Maternity Panels stated
that;

“ further consideration should be given to drawing up a report to Howard Lewis [the
PCT Public Engagement Manager) on PPI as it provided invaluable information. We
should engage the public in future developments”.




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