Download PCLG Minutes - 17th July 2008

Minutes of the Patient and Carer Liaison Group Meeting
Held on Thursday July 17th 2008
Llandrillo College, Rhos on Sea
Patient & Carer Representatives:
James Fenner (Chair)
Roy Bedwell
Enid Hughes
Kath Fox
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Gillian Evans
Peter Jones
Hazel Meredith
Betty Foster
Gwilym Evans
Eric Unwin
Tony Hendry
Staff Representatives:
Dr Mike Bloom, Macmillan GP Facilitator and practicing GP
Nest Bowl, Radiotherapy Services Manager, North Wales Trust
Pam Wedley, Macmillan Cancer Information Resource Facilitator,
North Wales Trust
Julie Jones Research/Clinical Audit Manager, North Wales Trust
Carol Gibbons, Cancer Voices Development Co-ordinator,
Macmillan UK Office
Anne Mart, Development Coordinator for Macmillan in Wales
Pat Evans, User Involvement Facilitator, Cancer Network
WELCOME, INTRODUCTIONS, APOLOGIES
James Fenner welcomed Carol Gibbons, Dr Bloom and Julie Jones.
Apologies had been received from Sandra Hulland, Anne Macleod, Gretta Cartwright, Iona
Jones, Yvonne Rose and Gwenno Davies.
MINUTES FROM PREVIOUS MEETING
The previous meeting on June 5th had been devoted to agreement of the PCLG response to
the Consultation on the proposed changes to the structure of the NHS in Wales.
FEEDBACK AND UPDATES
Consultation on Proposed Changes to the NHS in Wales:
A copy of the response from the PCLG to the Consultation on the Proposed Changes to the
Structure of the NHS in Wales has been circulated to all members. Receipt of the response
has been acknowledged by the Welsh Assembly. A copy was forwarded to Grace Lewis
Parry, Chair of the Network Advisory Board, who commented that it ‘demonstrates great
insight into the key issues’.
It was noted that a statement had just been made by the Health Minister stating that as the
result of the initial consultation a decision had been made to dissolve LHBs – as proposed in
the PCLG response. Further details of the implications for North Wales will be circulated.
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Reducing Delays in Cancer Diagnosis
Diana Pasterfield, Department of Primary Care and Public Health Cardiff University, has
conveyed her thanks to members of the PCLG for their comments on the design of a
questionnaire asking patients about their symptoms.
Lancaster University Study
It was mentioned at the April meeting that Researchers from Lancaster University have
requested that the PCLG should be one of five User Groups across the UK to be used as a
‘case study’ in a project to look at the impact of user involvement on cancer services.
A member of the Research team will be interviewing Pat and James on July 23 rd.
Large Print Format for Patient Information
As a result of discussions at the April meeting of the PCLG, patient information leaflets
produced by the North Wales Cancer Network will be made available in a Large Print Format.
Information Resources
Pam Wedley informed the group that the building of the new cancer information centre in
Wrexham Hospital has been delayed but a great deal of preliminary work is being done to
ascertain what patients want from the centre and to recruit volunteers to help run it.
For the past 12 months the PCLG has been facilitating the development of an information
resource in the foyer of the North Wales Cancer Treatment Centre. Difficulties have arisen in
finding an alternative location for the wheelchairs that currently occupy the designated area in
the foyer but solutions are being sought.
A PILOT STUDY TO UNDERSTAND THE TRANSITION FROM ‘ACTIVE
PATIENT’ TO ‘DISCHARGED PATIENT’
Julie Jones presented the results of a pilot study, assessing the support needs of patients
following discharge. These preliminary results were based on interviews with nine breast
cancer patients.
Psychological Impact:
Interviewees described the psychological impact of discharge using words such as
‘frightened’, ‘scared’, ‘safety net removed’. They would have liked more preparation for the
way that they felt at this time.
The desire to return to ‘normality’ was mixed with continued feelings of being a ‘victim’.
Patients had to come to terms with feeling different both physically and mentally.
Information needs:
Better information needed about welfare rights – patients can’t ask for something that they
don’t know about.
Patients valued shared information from people who had already ‘been there’.
Language being used by professionals should be positive e.g. ‘dealing’ with…… rather than
‘coping’ with……
Patients wanted more information and support for their family members.
A ‘Drop-in’ centre would be valued.
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Follow-up:
Patients wanted follow-up with specialists who had been directly involved with their
treatment. There was some anxiety about going to GPs with concerns
There was a perception by patients that primary care services hadn’t been involved in their
cancer care and confusion about the links with hospital based care.
There was uncertainty as to where to go with concerns about worrying symptoms.
Peer support:
Peer support from people with a personal experience of a cancer is important – wanted
information based on the personal experiences of others.
There were concerns about family members – where do they go for support?
There was often an expectation from the family that the patient should be back to ‘normal’
immediately after discharge.
The Group discussed a number of points.
Julie emphasised that the results and experiences from this pilot study are preliminary and
will form the basis for a larger study, involving a broader cross-section of patients with
experiences of different tumour types.
Would ‘specialist cancer GPs’ in the primary setting encourage patients to use primary care
services? Possibly – but the hospital based specialist teams tend to be seen by patients as
the ‘gold standard’.
Pam Wedley mentioned that there are hopes to develop a ‘drop-in’ centre. The availability of
funding for such a service was questioned as a very successful drop in service in Deeside is
now reliant on funding from the League of Friends. Pam has been able to secure several
offers of ‘good will’ for the provision of various therapies that might be provided at the Centre.
THE ROLE OF THE GP IN THE CARE OF CANCER PATIENTS
Dr Bloom gave a brief outline of his role as Macmillan GP Facilitator for Wrexham and
Flintshire. Dr Bloom is funded by Macmillan Cancer Support to spend one day a week
working with GP Practices to facilitate implementation of a ‘Gold Standards Framework
(GSF)’ in local GP practices which aims to improve the standard of care in the community for
all people who are nearing the end of their life. His work recognises the fact that more people
( 70%) wish to die at home.
Dr Bloom has also been working closely with ‘NEW Doc’ which provides the Out of Hours
service for Wrexham and Flintshire and a number of new initiatives are being trialed:

A kit has been developed to include drugs and equipment that may be needed for
palliative care patients.

A ‘Flag in’ form has been designed to encourage anticipation and awareness of the
needs and preferences of patients who may be approaching end of life.

A register of palliative care patients is being developed to improve awareness of
palliative care patients in the community.

Procedures are being developed to try to avoid inappropriate resuscitation of
patients.
Dr Bloom acknowledged that problems in the provision of palliative care are often the result of
poor communication and that GPs can often represent a ‘weak link ‘.
Discussion followed and focused on the variation in standards across GP practices. The
introduction of a ‘Quality Outcomes Framework’ (QOF) is designed to encourage compliance
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with National Standards through payment by performance. But GPs are not obliged to
conform to these standards, and attainment of set targets is not always a good measure of
‘quality’.
Action: Pat needs to update the PCLG on the Cancer Networks primary care project to
develop the role of the GP in cancer care.
MACMILLAN CANCER VOICES
Carol Gibbons gave an outline of the ‘Cancer Voices’ organisation – a UK-wide Network of
people whose lives have been affected by cancer and who wish to use their experiences to
improve cancer services. The Cancer Voices ‘opportunities exchange’ provides people with
opportunities to ‘have their say’ within the NHS, Macmillan and other organisations. The
organisation is supported by Macmillan Cancer Support through the provision of information,
ideas and guidance, but encourages an independent voice for members. Carol encouraged
people to register (registration forms available from Pat). Members receive regular information
updates via a newsletter.
Anne Mart talked about this years Macmillan ‘Have Your Say’ conference, on October 16th in
Abergavenny. This is an annual all Wales conference for members of cancer support and
user involvement groups, providing people with an opportunity to ‘have their say’ about
cancer services in Wales. This year’s conference will focus on ‘living with cancer’. All
members of the PCLG are invited to attend – travel expenses and an overnight stay are
provided. Further details will follow.
Action: Pat to update members on details for the ‘Have Your Say’ conference.
Members commented on the location of the ‘Have your Say’ conference in Abergavenny
which is difficult for people in North Wales to reach. Members discussed the possibility of
having a North Wales conference.
Action: Enid/Gill (and any other willing souls) to meet with Anne to consider the
possibility of organising a conference for self help and support groups in North Wales
MEMBERS’ FEEDBACK FROM MEETINGS
Summary reports have been circulated from:
Betty Foster:

Palliative Care Research Project – ‘Rattle’ at the end of life, May 6th
James Fenner:

Cancer Services Steering Group, NE Wales Trust, May 15th

Urology Coordinating Group - N Wales centralisation of complex urological cancer
surgery, June 10th

Lung DON, 11th June
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
Macmillan Steering Group for Self Help, Support and User Involvement, 19 th June
James Fenner and Roy Bedwell

Cancer Services Co-ordinating Group, 25th June
Pat Evans (on behalf of Gill Evans)

North Wales Haematology MDT, 19th June
Kath Fox had attended a Presentation of Palliative Care Clinical Audit Projects on July 15 th.
The presentations had a strong clinical bias but Kath had found the debate on the ethical
issues around artificial hydration and sedation very interesting.
Pat thanked the Group for their feedback on the public summary for the National Audit of
Bowel Cancer Services in Wales. The feedback has been forwarded but not acknowledged.
COMMENTS ON PATIENT SATISFACTION SURVEY, NORTH WALES
TRUST
Members of the Group had been sent a draft copy of a patient satisfaction survey that is to be
used by staff in North East Wales. Comments were fed back to Pam Wedley.
FEEDBACK FROM WALES CANCER BANK WORKSHOP, CARDIFF
This item was postponed to the next meeting due to shortage of time.
ANY OTHER BUSINESS
Members were asked for feedback on draft copies of:


An information booklet for lung cancer patients
A policy for communication of health care professionals with patients/carers
Action: Members to send comments to Pat.
Members were given a flyer for a Cancer Patient/Carer conference in Wigan on September
5th. Transport could be arranged if anybody would like to attend.
Action: Members to contact Pat if they are interested in attending
DATE OF NEXT MEETING
There was a general request for the meeting to be re-arranged from Friday Sept 26th to:
Thursday September 25th – details to be confirmed by post.
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