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					                 STROKE MANAGED CLINICAL NETWORK (MCN)

                   STROKE PUBLIC INVOLVEMENT SUB GROUP

                 Minutes of meeting held on Wednesday 8 March 06
                                      at 2pm
                  Meeting Room 1, Westholme, Woodend Hospital
Present:
Chairperson:            Margaret Somerville, Chest, Heart and Stroke Scotland
                        Alan Emslie, Member of Public
                        Barbara Dalgetty, CHSS
                        Douglas Conochie, Member of Public
                        Elizabeth McDade, Healthcare Worker
                        Therese Jackson, Consultant OT - Stroke
                        Mrs Christine Gray – Secretary CHD/Stroke Office

In attendance:          Mr Alistair Bain, Scottish Health Council (Observing)
                        Ms Elaine Cardno, Local Officer, Scottish Health Council
                        (Observing)

By Invitation:          Ms Laura Dodds, Public Involvement Officer, ARI (Presentation)
                        Elizabeth Durward, Manager, One-to-One, Care Company
                        Beckie Palmer, Carer, One-to-One
                        Linda Ferguson, Carer


Item                                                                               Actions
1.     Welcome and Apologies

       Welcome to Laura Dodds, Elizabeth Durward, Beckie Palmer, Elizabeth
       McDade and Linda Ferguson

       Apologies from Mr Gordon Edgar and Mr Sandy Reid

2.     Presentation from Public Participation Forum

       Laura Dodds gave a presentation – see attached Appendix 1.

       Action following presentation:
       Elizabeth McDade agreed to be the group’s link with Grampian PFPI
       It was noted that as per Appendix 1 the planned initiatives for patient
       focus and public involvement included the production of Patient/Public
       Rep information packs and training and a public involvement toolkit and
       training for staff. Laura agreed that the group would receive further
       information on these matters in due course.


3.     Notes of Previous Meeting on 29 November 2005

       Agreed
Item                                                                                 Actions
4      Matters Arising

       Moray Young Stroke Group

       To note that the meeting which had been scheduled for 7th March had had
       to be cancelled. Barbara to ascertain further availability dates from Sandy
       and re-schedule. Douglas and Therese also to attend.

5.     Remit and Membership of Group

       A draft Remit and Make up of Public Involvement Sub Group was tabled
       This was discussed, amended and agreed – see Appendix 2. To be tabled
       at the next Project Board meeting for their approval.

       A draft template– Stroke MCN – Patient & Carer Involvement was tabled.
       – see Appendix 3.
       Basically this was suggested to be used as a record of all activities being
       carried out within the Stroke MCN. Members of the group were happy to
       adopt this template for use. It was noted that contact names would be
       included on the completed template; however telephone contact for further
       details if required could be via Christine on Aberdeen 556713.

       Frequency of Stroke Public Involvement Sub Group Meetings

       It was agreed that meetings would be held on a 3 monthly basis (plus if
       any specific piece of work was needed to be done a small core team could
       meet in the interim). After some discussion, it was decided that the
       meetings should last 2 hours maximum with a five minute break in the
       middle. The time would change for an earlier start i.e. 1.30pm.
       Westholme was a helpful venue for disabled parking etc. but it was also
       suggested to Christine that the Staff Home on the Woodend Hospital site
       could be an alternative in the event of securing a venue being a problem.
       To avoid Wednesdays and Mondays for meetings if possible.

6.     Protocols

       For the benefit of those present for the first time at the meeting some
       background information regarding the protocols was discussed.

       Secondary Prevention Protocol – It was noted that Douglas had adapted
       this protocol to make it more patient friendly. Margaret had taken
       Douglas’ draft to Dr Mary Joan MacLeod, Chairperson of the Acute
       Stroke Sub Group for her comments etc. To await further word from Dr
       MacLeod.

       Stroke Discharge Protocol – Therese reported on this item.
       A copy of the Stroke Discharge Process Protocol that Therese had
       produced along with members of the Stroke Discharge Sub Group was
       now on the Stroke Website for public information. Any member/potential
       member to contact Christine Gray, Aberdeen 556713 who could direct
       them on how to access this website.




                                                                                           2
Item                                                                                 Actions
       This protocol would be a dynamic document which would be looked and
       amended /updated as required in 18 months time – it was by no means
       “written in stone”. Any comments were most welcome. It had been
       produced for use by health professionals and the Stroke Public
       Involvement Sub Group members had agreed that it should be looked at
       with the aim of producing a simplified version which would be more
       easily understood by members of the public, carers and stroke patients.
       To note that Barbara Dalgetty was working on an aphasia friendly version
       in collaboration with CHSS Speech & Language Therapists and would be
       organising a focus group with members of the Volunteer Stroke Service
       in Aberdeen and in consultation with Therese. Alan and Douglas were
       planning to attend the focus group. Invitations would also be extended to
       stroke patients identified by the Grampian Stroke Nurses.

7.     Information Provision for Patients and Carers

       Therese stated that the Stroke Discharge Sub Group which had now
       completed the Stroke Discharge Process would now be focusing there
       attention on getting some order and equity to the mis-match of patient
       information which was given out on patient discharge. The Discharge Sub
       Group which thus far had been meeting in Aberdeen would be in future
       meeting in Moray with colleagues to take this next part of the work further
       and strive for equity of service.

       Points raised regarding patient information:
       There were differing views – some patients felt they were overloaded with
       information whilst others felt the information was just sufficient or they
       did not get enough. People’s experiences were different. Douglas also
       raised the matter that he felt excluded from the weekly multi-disciplinary
       meetings whilst he was in the Stroke Rehabilitation Unit and felt that
       patients and relative should be in attendance.
       The matter was raised that Carers might not know where to turn to for
       help. Elizabeth had access to some information, which was not stroke
       specific but could be useful for the group to know.

       To note that this item regarding patient information to be placed as an
       agenda item next time for further discussion.
8.     Training involving patients and carers

       Margaret reported on some of the work being piloted in Highland, which
       could be considered for Grampian region in the future, if deemed
       successful.

       Lochaber Education Programme – a 7 week programme involving one
       afternoon per week was held inviting patients (and carers) who has been
       discharged home from hospital. This programme gave education to
       carers and stroke patients. To note that it had been taken to the Stroke
       MCN Project Board and Mr Sandy Reid, Network Manager, would place
       an article about this in the next Stroke newsletter and give the Stroke
       Training Co-ordinator’s name as a contact if anyone was interested in
       organising such a programme in Grampian.



                                                                                           3
Item                                                                                    Actions
       Relatives Clinic – Piloted by Highland, which was run by the hospital
       Consultant where relatives of stroke patients had the opportunity of a one-
       to-one consultation with the Consultant. Margaret would feed back to the
       group about how the pilot was proceeding and if it was successful to then
       decide whether it was a worthwhile option to consider in Grampian.

       Training Patients and Carers

       Margaret stated that Highland were evaluating whether it was useful for
       patients and carers to attend training sessions, to describe their experience.
       To note that in Grampian patients now attend and it was hoped to include
       carers soon. Health professionals evaluate these sessions very positively.
       Action: Margaret to bring this matter back to group on next agenda for
       further discussion etc.

       NHS Grampian MCN – Training Co-ordinator

       To note that Lynsey Richmond the Stroke Training Co-ordinator for
       Grampian held training courses (no fee) which were open across
       Grampian for anyone who worked with or was involved with stroke
       patients and carers. The courses had been running since September last
       and were proving very successful. Bookings were now into 2007!!
       Any member of the group willing to support these courses would be very
       welcome.

       General
       Douglas felt that training and communication with patients left a lot to be
       desired. Therese noted Douglas’ comments in order to address this issue.
9.     Scottish Health Council
       PFPI – Stroke MCN Submission

       It was noted that Elaine Cardno and Alistair Bain were present at the
       meeting in order to observe. They were collecting information in order to
       produce a report for the Scottish Health Council and the stroke public
       involvement focus group and members were invited to feed back to the
       Scottish Health Council with information for this report.

10.    Feedback from NACS

       To note that Douglas had attended a meeting of the NACS on Monday 6
       March 06 in Edinburgh. It was agreed that Douglas would email Christine
       a copy of his report from the meeting and Christine would circulate. This
       report will follow and be circulated along with the agenda for the next
       meeting. A date for the next meeting had not as yet been decided.
11.    AOCB

       CHSS – Glossary of Terms

       Margaret distributed a booklet produced by CHSS giving Glossary of
       Terms to help people to understand common terms used when talking
       about the health service and chest, heart or stroke illness. Margaret
       requested the group to look at this booklet and feed back thoughts etc.



                                                                                              4
Item                                                                                Actions
       AOCB (cont.)

       QIS Document – NHS Grampian – local report Nov 2005 “Stroke
       Services: Care of the Patient in the Acute Setting”

       To note that Douglas had a photocopy of this document, which was not
       clear to read. The document was in short supply but Christine would try
       and obtain an original copy via Pamela Harrison in the Clinical
       Governance Department at Aberdeen Royal Infirmary.

       Scottish National Stroke Workspace – paper

       Douglas passed a copy of this paper to Christine and requested it be given
       wider circulation.

       Christine would see Mr Sandy Reid and ascertain how wide a circulation
       for this.

       Stroke Psychology Service

       Douglas raised the matter of whether there was a service in Grampian.
       Margaret confirmed that there was a Neuro-Psychologist who was based
       in the Acute Stroke Unit at ARI.

12.    Date of Next Meeting

       It was agreed that the next meeting would be held in Meeting Room 1,
       Westholme, Woodend Hospital on Tuesday 20 June 2006 at 1.30pm until
       3.30pm. Tea and coffee to be provided. Christine had booked venue.




                                                                                          5
Appendix 1

                   Public Involvement in NHS Grampian – An Overview

National Policy

The National Health Service Reform (Scotland) Act 2004 places a duty on NHS Boards to
involve and consult the public when planning and developing services and when there are
decisions to be made that significantly affect the operation of these services.

The Scottish Health Council, a new body set up by the Scottish Executive, independent from
NHS Boards, has a role to assess how well the NHS is doing on involving the public.

What is involvement?

A simple definition - people can be involved in their or a relative’s individual care, in services
or at a service planning level.

How much influence patients, public and carers have when they are involved can vary from
just being informed right through to being equal partners.

NHS Grampian

NHS Grampian provides NHS services for about 500 000 people living in Grampian, and
these services are overseen by an NHS Board. The Grampian NHS Board is responsible for
improving the health of the Grampian population, and for delivering the health care required.
NHS Grampian consists of acute services, corporate services and three Community Health
Partnerships. It also works closely with the local authorities, voluntary sector organisations
and the universities.
There are 3 Community Health Partnerships in Grampian– Aberdeen, Aberdeenshire, Moray
– planning and providing primary and community health services.

Public Involvement in NHS Grampian

NHS Grampian has a Board Committee for Patient Focus Public Involvement (PFPI) –
chaired by Margaret Burns, Non Executive Board Member. The Committee has recently
approved its revised Public Involvement Framework and Action Plan.
NHS Grampian Community Forum is a group of members of the public who work in
partnership with clinical staff and managers of NHS Grampian. The Forum meets 4 times a
year and has discussed and debated issues such as out of hours services, infection control and
nutritional care.
Each Community Health Partnership has to set up a Public Partnership Forum which should
be the main way it engages, communicates and consults with the local population.

The Acute Sector does not need to set up a public forum but is looking at ways to make sure
people are involved. The sector has a PPFI Group for staff which meets to share good practice
and discuss issues.

The Corporate Communications Team for NHS Grampian has a small number of staff which
support the PFPI agenda – public involvement, patient information, equality and diversity,
disability discrimination, volunteering and advocacy.




                                                                                                 6
How is NHS Grampian doing?

NHS Grampian has recently submitted its Performance Assessment Framework document to
the Scottish Health Council. The assessment includes how the organisation involves patients
and the public, involves staff, handles complaints and addresses equality and diversity issues.

The Scottish Health Council is currently looking at the submission.

Planned Initiatives for Patient Focus and Public Involvement

       Expenses Policy
       Information Pack for Patient/ Public Representatives
       Training for Patient/ Public Representatives
       Public Involvement Toolkit for Staff
       Public Involvement Training for Staff
       “Major” Public Consultation Activities



                                                                                Laura Dodds
                                                                  Public Involvement Officer
                                                             Corporate Communications Team
                                                                             NHS Grampian

                                                                          laura.dodds@nhs.net
                                                                                 01224 553161


                                                                                   March 2006




                                                                                              7
Appendix 2


Draft Remit & Make Up of Public Involvement SubGroup




Facilitator:                        Margaret Somerville
Phone No.                           01463 712273
Proposed Time-Table                 Agreed on 8th March 2006 – to be put to Project Board
Remit of Group and Issues being considered
Remit
     Act as Advisory Group to Stroke MCN on any relevant issues, contributing to steering the agenda
         and strategy for Grampian
     Each member to act as a link to their organisation or committee which they attend, as appropriate

Actions
     Monitor how patients and carers would like to be involved and informed
     Provide guidance and support to SubGroups to enable patients & carers to be involved
     Act as central point of contact to log and disseminate involvement and issues as they pertain to
         patients and carers
     Report back to and feed in from, if appropriate, member organisations and other committees
     Disseminate best practice
     Contribute to Protocol development
     Identify training needs of patients/carers
     Comment on relevant sections of the Quality Assurance Framework
Make up of Sub Group:
Name                         Designation                                      Location
Margaret Somerville          CHSS Deputy Director of Advice & Support         CHSS, Inverness
(Chair)
Barbara Dalgetty             CHSS CSN Regional Manager                        CHSS, Elgin
Sandy Reid                   CHD/Stroke Network Manager                       Westholme
Alan Emslie                  Member of Public (ex patient)
Douglas Conochie             Member of Public (ex patient)
Linda Ferguson               Member of Public (carer) (considering
                             membership)
Liz Durward                  Manager, One-to-One, Care Company
                             (considering membership)
Therese Jackson              Consultant OT                                    Westholme
Elizabeth McDade             Carers Information Worker for Health Care
                             Grampian PFPI
Steve Brockman               Charge Nurse wd 6, Woodend                       Sent minutes/agenda for
                                                                              comments
Gordon Elgar                 Development Officer (Service user and Carer      Sent minutes/agenda for
                             Involvement)                                     comments
Wider Consultation
National Advisory Committee for Stroke (NACS)




                                                                                                 8
     Appendix 3

                                                                     Stroke MCN Subgroup

                                                              Patient & Carer Involvement: 2005/06

                                                                                        Date           Date
                 Activity                 Geographical Area          Purpose                                      Further details       Contact Name
                                                                                       Started       Completed
Consulting


Patient Focus Groups                                           To inform how          April 2005     May 2005                         Barbara Dalgetty
                                           Aberdeen area       patients would like
                                                               to be involved
Patient/Carer feedback by questionnaire                        To inform              May 2005       Feb 2006     Includes aphasia   Margaret Somerville
regarding Stroke Nurse Service (SNS)       Grampian wide       development of                                         friendly
                                                               service                                            evaluation form
Engaging


Patients/Carers speaking at Training                           ?As part of
events                                                         introductory and
                                              Aberdeen                                             Latest event      Ongoing          Lynsey Richmond
                                                               intermediate courses
                                                               for stroke
Informing


Visits to Different Strokes                                    Update groups on         March                                          Sandy Reid/
                                                Elgin          MCN activities           2006                                          Therese Jackson

				
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