Milton Keynes Cancer Patient Partnership
Wednesday 12th July 2016, 12:30 – 2.30
BICS Training Room, Oak House
Carol Hewett User rep, Upper GI
Jaff Newton MKCPP Secretary, User rep, Breast
Jean Mattinsley User rep – Healthwatch rep, Carer
Jeannie Righton User rep, Lung
Jen Davies Cancer Manager
Rose Coppard User rep, Lower GI
Sarah Crane Revd. Team Chaplain
Sabina Dawson User rep, Carer
Elizabeth Bradley User rep, Breast
Richard Freeman User rep, Upper GI, Haematological
Angela Sheldrick Breast re-design Project Manager
Suzan St Maur MKCPP Chair, User rep, Breast, Bladder, Carer
Jeanette Wells Gynae ANP
James Bursell Paediatric Consultant and Clinical lead for Patient Experience BenThomas Director of Citizens Advice MK
Dawn Allen User rep, Carer, Paediatric, The Henry Allen Trust
Claire Crick User rep, Breast
Kim Bowles Macmillan Development Manager
David Buckley User rep, Prostate
Gail Spooner User rep, Breast, Lead LG,FB
Sally Burnie Head of Cancer Services
Martin Bell User rep, Chair Prostate group
Bronwen Webster User rep, Head & Neck
Deb James User rep, Lower GI
Vicky Lawford Macmillan
Jenny Abbot User rep, Breast
Lorraine Mir User rep, Skin
Sam Timmins Macmillan Cancer Information & Support Manager
Kim Weston Bereavement Officer
Sue Fitzgerald Gynae ANP
Future dates for your diary:
September 2016 – Wednesday 14th
November 2016 – Tuesday 8th
2016 NEW TIME 12.30 – 2.30 All being held in the BICS TRAINING ROOM, OAK HOUSE
Item #1 – Welcome
**Suze welcomed everyone, especially our guests James and Ben. There was a round-robin introduction later.
These were noted.
These were agreed and signed by the Chair.
Item #2 – Guest speaker
James Bursell – Paediatric Consultant and Clinical lead of the Patient Experience Team
James gave a really positive presentation about engaging with the patient experience. He acknowledged that it was already embedded in cancer and now it was time to put this at the centre of all hospital pathways and treatment, in particular consulting patients when pathways are to be changed. Knowing and doing does not necessarily happen so he is trying to engage with consultants to set an example so a lot of ground work is being done to change the mindset.
Discussion followed about how feedback is obtained, when and how it is acted upon and to display “You said, we did” to encourage feedback from others.
Linda made the comment that there was an art to obtaining useful feedback with open ended questions as it was always easier to criticise than to praise.
Suze said that volunteers would be a useful resource for managing surveys/audits to relieve health professionals but it was always important to ensure concerns were brought promptly to the appropriate staff to be addressed.
Suze requested that James came back to the group in the New Year with an update on progress.
Item #3 – Guest speaker
Ben Thomas – Director of Citizens Advice MK
Ben gave a brief introduction of his career leading to his present role in the service. The main office for the charity is based in Acorn House where they see clients but they are now accessible 2 days per week in the Macmillan Unit and also in Stoke Mandeville hospital. Appointments can be booked, but in some cases they will visit a patient’s home or have a telephone conversation. He also talked about the most frequent advice asked for and the demand for the service but funding is a major constraint.
Suze asked about extending the service to GP practices.
Interested discussion followed.
Item #4 – MKUHFT, Jen & Sally
Jen said that the CQC were visiting the Hospital looking at End of Life Care in particular.
External Peer Review of the Cancer of Unknown Primary (CUP) had gone well and the team were on a par or better than the National standard being only one of two trusts not to have any serious concerns.
Internal validations IVs – are nearly complete and will be uploaded onto a new database which includes information about national and local audits giving a more overall picture.
Item #5 – Working groups
**Cancer & Beyond Richard and Angela
Richard shared the findings of the 39 surveys that had been returned so far, which are excellent.
Angela said that the Cancer Steering Group were interested in the project and wanted to be kept updated. She also said that she would be giving a presentation to GPs.
Angela then informed the group about the Train The Trainer, ‘HOPE’ course Macmillan had organised at the hospital which she with ten other nurses and two patient representatives had attended. It is basically about self-management after cancer. The next courses are being organised for September and October.
Action – information to be sent electronically.
**Should we become a charity?
Suze reminded everyone of the three options and said that some members had given their apologies for today so had had a postal vote and that today’s show of hands would be added.
Option 1 – full registration. Pro: recognition, more professional image, better access to funding. Anti: red tape, bureaucracy, possible changes to the group’s ethos.
Option 2 – remain as we are. Pro: no extra paperwork, red tape, or trustees peering over our shoulders. Anti: less professional image, fewer opportunities to apply for funding.
Option 3 – call and refer to our group as a “charity.” (By this I do NOT mean renaming the MKCPP.) Pro: some better recognition, no additional paperwork, no changes in structure or ethos. Anti: a weaker image than full registration, may suggest lack of commitment.
The result was:
Option 1 – Two
Option 2 – Three
Option 3 – Thirteen
Action – It was agreed to look at the details of Option 3 for the September meeting and then review the situation in July 2017
**Cancer Resources Directory
Suze is monitoring and updating the online version as each change / addition arises. Check it out here – http://mkcpp.org/mk-cancer-resources-directory and please let Suze know if you notice anything that needs changing or updating.
Discussion followed about funding, reviewing the format to group information and how it might be possible for Clinics or GPs to download sections required.
Angela, said she will show Suze a similar directory from another Trust.
Rose said that at the LGI IV she was informed that the Patient Journal was not being given to Lower GI patients as it was considered superfluous.
Action – Sally to check with the ANP.
Jaff said Richard had completed all the edging so the garden was looking much better but the weeds are still growing so do pull a few when you have time.
On Saturday a fifteen strong team of volunteers from Santander, Coca Cola and one other local company answered an SOS call from Sally to give the large Macmillan garden a makeover so that a patient could have their wedding photos taken there on the Monday. They all did an amazing job and it can now be enjoyed by all patients.
**Website – www.mkcpp.org
Suze continues to monitor and update. If anyone else among the core members wants to learn how to use, update and add to the website please get in touch with Suze. She has agreed to give Jaff a tutorial before Christmas.
Jaff said that the audits for the Skin and Gynae Clinics had been completed and that Action Plans were being formulated. It is now planned to audit Ward 22 in September.
Jaff said the next LGFB was on 21st July. All the sessions were fully booked until November so Sam was proposing one more extra session on 20th September because there are none in December and it’s a long time to January.
Suze said that more volunteer makeup artists were needed to help at the sessions.
**Information / Literature / Leaflets
Rose said the two Macmillan Unit volunteers were going to replenish all stands each Thursday. Sabina said that she checked the information stands today and will continue to do spot checks.
**Public Liability Insurance – Richard
Richard said there was no further progress except that he understood that there are discounts for charities.
Item #6 – Support Groups and other updates
Jaff said they will be Marshalling Mile One for the Willen Midnight Moo. For more information see website – http://bosompals-miltonkeynes.btck.co.uk
**Bladder Group – The “Pee-Wees” – Meetings are still on hold for the time being but it is hoped to restart them once the Urology professionals team are able to provide a little more support.
No update to report.
**Eaglestone restaurant group
No update to report.
**Lymphoma support Next meetings – No meeting in August, 1 September, 6 October, 3 November, no meeting in December. All held at 2pm in the Peartree Centre, Chadds Lane. – for more information see: http://lymphomas.org.uk/information-and-support/lymphoma-support-groups/milton-keynes
No representatives present at the meeting but for more information see website – http://prostatemk.org
**MK Supermoles – Skin Cancer Support group
Next meeting Saturday ?? 11-1pm St Marys church hall , Church Green Road Bletchley.
**Item #7 – Miscellaneous
1. Suze passed round a thank you card from Pam Steer. Pam can still be found in the Mac Unit but on a part-time basis.
2. Jean said the Willen Service User group meetings were still on hold and none planned, but it was thought that in future they would be more project based.
3. Linda said that the MKUHFT Research team were the best in the Thames Valley Network for recruitment into trials and should be congratulated.
The meeting closed at 14.30hrs.
Date of next meeting
Wednesday 14th September 2016
TIME: 12.30 – 2.30
VENUE: BICS TRAINING ROOM, OAK HOUSE
Patient representatives to meet at 12.00 for refreshments and catch-up.