Pan Birmingham Cancer Network
Minutes of User Partnership Group (UPG)
Held on Saturday 22nd January 2011 at Birmingham Research Park
1) Present
Veronica Morgan-Pottinger (VMP)
David George (DG)
Janet Moir (JM)
Caroline Horton (CH)
Dr Tatyana Guveli (TG)
Vicky Stock (VS)
Bill McDougall (BM)
Nicole Folbigg (NF)
Fran Gurney (FG)
Manjula Patel (MP)
Stephanie Hayter (SH)
David Smith (DS)
Marilyn Meade-Brown (MMB)
Suzanne Sumara (SS)
Apologies
Ben Parfitt (BF)
June Higgs (JH)
Kevin McCabe (KM)
Chris Pile (CP)
Jackie Sears (JS)
Sarah Wall (SW)
Susan Rogers (SR)
David Kirby (DK)
Jean Trainor (JT)
Stewart Trainor (ST)
Janet Summers (JS)
Ross Bellamy (RB)
Jim Edmond (JE)
Gina Dutton (GD)
Walsall PACT
Stanley Webb (SW)
Susan Botfield (SB)
Janet Evans (JE)
Marie Hitchman (MH)
Sheila Bevin (SB)
John Stokes (JS)
Patient Representative (Chair)
Patient Representative
Patient Representative
Network User and Public Engagement Lead
Network Macmillan Patient Information
Manager
Patient Representative (Vice Chair)
Patient Representative
Patient Representative
Patient Representative
Murray Hall Healthcare Service Manager
Patient Representative
Patient Representative
Macmillan Involvement Coordinator
(West Midlands)
Research
Network
Operations
and
Development Manager
Network Associate Director
Patient Representative
Patient Representative
Patient Representative
Cancer Research Network Lead Nurse
Patient Representative
Carer Representative
Patient Representative
Patient Representative
Carer Representative
Patient Representative
Patient Representative
Patient Representative
Cancer Research Network Manager
Patient Representative
Patient Representative
Patient and Carer Representative
Patient Representative
Patient Representative
Patient Representative
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CH informed the group that sadly Penny Parsons died on 11 January
2) Minutes of Last Meeting
No amendments
3) Matters Arising
DG ran through the previous minutes; main points


MMB informed the group that the second wave of GP consortia have now
been announced and they can be accessed on the Department of Health
website.
South Birmingham PCT and Solihull consortia are amongst the pathfinder
consortia that have been announced.
Sandwell Cancer User Group
Due to a consistent decline in the number of people attending this group, it was been
decided to review the interest from people on the mailing list, in the form of a letter
asking them to get in touch if they would still like to be involved in the Sandwell
Group.
Action: CH will report back to the group on the progress of this.
CH has met with Jane Hadley, Cancer Screening Outreach Nurse, Sandwell PCT
and Emma Hunstone, Cancer Support Manager, Sandwell and West Birmingham
Hospital Trust (SWBH); to discuss ideas on how to engage with cancer patients and
carers in Sandwell.
Action: CH will keep the group informed of any projects/proposals, NF
volunteered to help with any projects in Sandwell.
At the point DG stepped down as chair of the User Partnership Group, and VMP took
over as chair.
4) Patient Information
There has recently been some confusion surrounding the Holistic Needs
Assessment documents. TG circulated to the group the HNA patient information
leaflet, which the UPG approved some months ago, and has now been sent to the
Acute Trusts (hospitals in our area). TG also circulated the HNA toolkit, which is not
the same as the patient information leaflet. Some UPG members have concerns
about the toolkit, if this was being handed out to patients to complete by themselves.
However, this is not what the toolkit is for. The toolkit will only be given to a patient
who has already had a HNA, and is familiar with the process/purpose of HNA, and
will only be given to a select audience to do at home. The patient information leaflet
will be handed out to all patients.
The group all strongly felt the word distress needed to be taken out of the patient
information leaflet, as this may not be the appropriate language for many patients,
and won’t encourage patients to talk about things that are on their mind and causing
them a bit of worry; as distress can be interpreted as something severe.
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Action: TG will take these comments to the Network Clinical Governance
Tuesday 25th January, and will feed back the outcome to the UPG at the next
meeting.
5) Network New Website
TG presented the new Network’s website, which was well received. TG is now
leading on the Network website and she will be organising a website steering group,
which may include a UPG rep. No one volunteered.
TG discussed the proposals for advertising the new website to various key
people/organisations. The UPG made many suggestions; it isn’t clear that the
website is a one stop shop for cancer; they felt this card may not be the best design
to capture the attention of patients.
The UPG DVD was played, which was again well received.
Ideas of where to play the DVD included;
* GP waiting rooms
* Chemo Units
* Health Exchange
Sending a DVD to every GP or send the link to all the pathfinders in the area.
6) Macmillan Inclusion Grant
CH informed the group her bid to Macmillan to receive a grant to run an engagement
event for support groups in the Pan Birmingham area; to learn what issues or
concerns they come across, and how the Network can work with them etc. MMB
suggested focusing on one area, and invite all kinds of supports groups – not just
cancer groups and it would probably be best to focus on one area which will have a
good response rate and then plan to repeat this in other areas with future Macmillan
grant funding, like a rolling road show.
CH asked for volunteered to help plan this engagement road show. VS and VMP
volunteered.
Action: CH to email all UPG members for volunteers
7) Macmillan Update
MMB gave an overview of what is currently going on in Macmillan in light of recent
politic changes, and how the direction of travel for cancer user groups may have to
change due to the changing climate. A discussion took place around how can user
partnership groups influence GP commissioners. Macmillan are planning to do
projects on user groups working with GP consortia, Macmillan will support this work
with a grant. CH has volunteered to work with Macmillan on this.
Action: CH will report back to UPG when more information is known.
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MMB emphasised the importance of people being involved in their local LINk group.
A query was raised on free prescriptions for cancer patients.
message is still not getting through to the patients.
Action: TG to resend info leaflet to Trusts.
It appears this
Macmillan has a corporate relationship with Boots. Macmillan are doing a pilot
project with Boots, Birmingham High Street, where by people/patients can drop in for
support and/or information. Other Boots stores in Birmingham have leaflet. This
pilot finishes end of March, if successful Macmillan will roll it our nationally.
Macmillan is also upskilling Boots pharmacists to be more knowledgeable about
cancer.
8) Network Site Specific Group - updates
Head and Neck
FG couldn’t attend the last meeting. She did have a query; are they moving Head
and Neck services from HEFT to Coventry?
Action: CH to raise this with Ben Parfitt
Chemotherapy
Last meeting was cancelled
Breast
VMP attended. The group is still looking at NICE recommendations for Sentinel
Lymph Node Biopsy; a business case is being prepared.
Reconstruction is always being discussed as Walsall doesn’t offer this service
because they don’t have a plastic surgeon; therefore all Walsall patients have to
travel to another hospital for this additional operation. It was questioned; how are
patients suppose to ask about a service they know nothing about? VMP raised this
at the recent peer review visit she attended at the Network.
3 or 5 year follow up is still unresolved.
23 hour breast surgery discharge was also discussed. VMP raised the concern that
there needs to be plenty of support at home in order for this to work.
Psychology
DG attended. HNA was discussed, but has been covered by the agenda.
9) Updates from Members
Kay Harries, the Network Allied Health Professional Lead, would like to thank
everyone for their comments on her questionnaire. Kay has responded to all UPG
members individually.
CH reminded the group she has sent round the link to the ne cancer strategy;
Improving Outcomes; A Strategy for Cancer and a link to the new Health and Social
Care Bill.
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CH informed the group of an up coming rehab conference in Birmingham on 16 th
March. The conference is one of 3 being organised by the National Cancer Action
Team (NCAT), and they are looking for 2 people from each user partnership group to
attend who has had experience of any rehab services such as physiotherapy.
Occupational therapy, speech and language therapy and dietetics.
Action; Any interested and eligible UPG members to get in touch with CH, so
you can have a place booked.
10) Any Other Business
SS asked all UPG members interested in supporting the research network’s patient
and public involvement group if they could stay behind for a few minutes after the
UPG meeting.
Bridges – MP gave an update on Bridges. Bridges are still supporting people who
are end of life and palliative care in Birmingham East and North (BEN) and Heart of
Birmingham (HOB). Bridges supports anyone with cancer in Sandwell.
Bridges have been successful at obtaining some funding for a new post; Cancer
Outreach Awareness. This post will be working with Sandwell PCT and the new GP
consortia pathfinders.
www.compassionatecommunities.org.uk is now live.
Bridges are going through the process of developing another transport bid to support
cancer patients needing transport to receive their care. MP will be setting up a
steering group shortly.
11) Date and Time of Next Meeting
Tuesday 22nd February 2011 5.00pm – 7.00pm Meeting room 2, Network Offices,
Birmingham Research Park, Vincent Drive.
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