Elizabeth Bradley User rep, Breast
Carol Hewett User rep, Upper GI
Dawn Alan User rep, Carer, Paediatric, The Henry Allen Trust
Sam Yojnan User rep, Chair Prostate group
Claire Crick User rep, Breast
Tony Kelly User rep, Lower GI, volunteer – Mac Unit & Community Car Scheme
Laura Jeffery MK Community Action – Car Scheme
Geoff Saunders User rep, Lymphoma – REMAP
Barbara Saunders User Rep, Lymphoma
Jaff Newton MKCPP Secretary, User rep, Breast
Jeannie Righton User rep, Lung
Jean Mattinsley User rep – Carer, Healthwatch rep
Michaela Tait Patient Experience Manager
Rose Coppard User rep, Lower GI & volunteer – Mac Unit
Angela Sheldrick Breast re-design Project Manager
Suzan St Maur MKCPP Chair, User rep, Breast, Bladder, Carer
Linda Wilson User rep, Breast
Geoff Saunders User rep, Lymphoma – REMAP
Jane Douglas Macmillan Mobile Information Lead
Christine Cowap Macmillan Engagement Co-ordinator for MK and Bucks
Shaeen Dalvi Macmillan Partnership Lead for Bucks and MK
Alan Hastings Chair, PPG Whaddon Medical Centre
Sally Burnie Head of Cancer Services
Jen Davies Cancer Manager
Andrea Kingston GP retired – Hanslope & District Cancer Wellbeing & Support Group
Chris Ford Clinical Trials Administrator (CHORT)
Kate Iseton Lymphodema nurse – Willen
Richard Freeman User rep, Upper GI, Haematological
Carly Polti Lymphoedema nurse – Willen
Paul Maclean CRUK Volunteer
Sabina Dawson User rep, Carer
John Sorrell GP retired – Hanslope & District Cancer Wellbeing &Support Group
Steph McPherson User rep, Breast & Ovarian
Ray McPherson User rep, Carer
Sally Leverett Willen
Sam Timmins Macmillan Cancer Information & Support Manager
Jeanette Wells Gynae ANP
Kim Weston Bereavement Officer
Sue Fitzgerald Gynae ANP
Graham Youngman Asplands PPG, User rep
Craig Macmillan Oncologist, Linford Wood Medical Centre
Barbara Pearce Breast care nurse, Linford Wood Medical Centre
Kim Williamson Education, Linford Wood Medical Centre
Gail Spooner User rep, Breast, Lead LGFB
Revd. Sarah Crane Team Chaplain
Michele Bunhem Secondary Breast care nurse, ANP
Future dates for your diary:
May Wednesday 10th – BICS Training Room, Oak House 12.30 – 2.30
July Tuesday 11th – BICSTraining Room, Oak House 12.30 – 2.30
September Wednesday 13th – Eaglestone Restaurant Function Room 11.30 – 2.00
November Tuesday 14th – BICS Training Room, Oak House 12.30 – 2.30
Item #1 – Welcome
**Suze welcomed everyone, especially our guest speakers, Christine and Jane from Macmillan, Michaela, MKUH Patient Experience Manager and Sam, the new Chair of the Prostate group.
These were noted.
These were agreed and signed by the Chair.
Item #2 – MKUH – Sally/Jen
** Both were unable to attend, update at the May meeting
Item #3 – Round-robin introduction
Members briefly introduced themselves.
Item #4 – Guest speakers Christine and Jane
Christine said she had had eighteen years’ experience in the voluntary sector in Slough & Berkshire. Her new focus is Living with and Beyond Cancer in the South West, (Buckinghamshire, Milton Keynes, Oxford and Berkshire) particularly in local engagement with the seldom or hard to reach diverse groups and individuals so that they can have their say in influencing Macmillan services. There will be enablement/start-up grants for 2017 new support groups that can be applied for between April and August.
Christine will become a member of MKCPP representing Macmillan and raising awareness in our area.
Jane, thanked us for inviting her to accompany Christine and said that she was part of the Macmillan Mobile Information Team on the Green Buses. These are customized like a library with over 400 leaflets and a Quiet Room for face to face support. The team operates with five people from a variety of nursing backgrounds in palliative care, oncology and radiology so that they are able to deliver a flexible, confidential service within communities to the less mobile, elderly and ethnic groups. Their service ranges from Milton Keynes to Hastings, the Scilly Isles, the Isle of White and Pembrokeshire, spending two days in each location.
Suze asked if they made use of Local Directories such as the MKCPP Resources Directory if they existed. Jean said she would pass our information back to Macmillan. Suze then asked how an area was informed about the Green Bus before its arrival such as via social media, local radio and television etc?
Jane said the Green Bus would be at Intu CMK, and Bletchley in September. Jean said that it might coincide with the Healthwatch Event in Middleton Hall CMK on 12th September.
Suze asked what the difference is between an enablement and a support grant. Perhaps there is an opportunity of a pilot/event that we could initiate?
Jane said that there were 4 separate grants under the system.
Guest speaker – Michaela
Michaela gave an overview of her past experience and said she had been one year in post and that it was a requirement to ask patients about the care given to them in hospital and to learn from it, not just a “tick box” exercise.
The Inpatient survey covers – Maternity, Children & Young people, Cancer Services and Inpatients.
It included – discharge, pharmacy, food, communication – how it is heard, kindness in the breaking of bad news, etc.
Friends and family – food, car-parking and politeness.
She said a spreadsheet is prepared for Joe Harrison, CEO,
She said it is important to keep a balance between good/positive and bad. She also talked about informal ways to get feedback such as Facebook, Twitter and direct to PALS.
Suze said MKCPP could get feedback from cancer patients in a variety of areas such as A&E, oncology and specific outpatient areas.
A lengthy discussion followed about different ways of getting patient feedback.
Item #5 – Working groups
**Cancer and Beyond
Angela said that Cancer and Beyond was the local name for the Macmillan Living with and Beyond Cancer. The Macmillan successful 6 week HOPE course is a rolling programme. The popular singing group is now called – Beyond the “C”.
The End of Treatment support Group continues monthly as does LGFB.
Gradually a portfolio of what support is being accessed locally is being built up, including what is being asked for, such as other surgeries wanting to host a support group, the Shenley retirement village and interest from ethnic communities.
Government-led initiatives also trigger or renew interest, e.g. Be Clear about Cancer, the importance of early diagnosis, and changing lifestyles.
** Cancer Patient Feedback
Suze said that the Journal had been simplified so that it can be completed by a patient/carer or by an interviewer using it as a prompt. The next meeting to agree the format and printing will be 31st March at 2.30 in the Mac Unit.
To enable this to cover cancer inpatients as well as outpatients we will need the DBS check which Michaela agreed to arrange for us.
**Cancer Resources Directory
Suze distributed the new version hot off the press. Supplies will be in the Mac Unit, please sign for the number of copies taken and where they are for. Suze will continue to monitor and update the online version as each change/addition arises.
Jaff said that it is looking good after the tidy up with still plenty of colour. Weeding is continual so pull a few if you see them.
**Website – www.mkcpp.org
Suze continues to monitor and update. The offer still stands from Suze if members want to learn how to use, update and add to the website.
Jaff said that an audit of Ward 22 was to be planned for 2017.
Jaff said that the LGFB in 2017 on the third Thursday of each month is booked up until June.
**Information / Literature / Leaflets
Tony said that he and his wife continue to fill up the stands. A new one will be needed in the new main entrance.
Item #6 – Support Groups and other updates
**Bosom Pals MK
Jaff – Jaff said that Bosom Pals would be celebrating its 25th Anniversary and as such it is one of the oldest support groups in the area. For more information see website – http://bosompals-miltonkeynes.btck.co.uk
**Bladder Group – The “Pee-Wees” –
No new update.
No update to report.
**Health and Wellbeing Patient Support
No new update.
Geoff said that this was the 9th anniversary of the group and that it had one of the largest memberships in the country 10 – 18 each month. Fay has been made an Honorary Life Member.
All meetings are 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
**Prostate Group MK-PCS
Sam is the new chair. He said he had been in the group for three and a half months. Their January meeting with the Medical Detection Dogs Charity had been a great success. They had also had a successful bucket collection at MK Dons with the Aylesbury group.
For more information see website – http://prostatemk.org
**MK Supermoles – Skin Cancer Support group
Melanoma Conference, 16th & 17th June, Bristol.
**Willen support group
No update to report.
AGM – Wednesday 19th July at the MK Conference Centre.
Linda said there is a new group meeting in June with the OU. Chrissie or Chris Ford will update at the next meeting.
Alan said that practices relied on very active practice managers and GPs, but there was variation across the patch.
The next Patient Congress meeting is 20th March, Sherwood House, Bletchley.
Item #7 – Miscellaneous
**Carol attended UGI AGM said that referrals had doubled in spite of staff shortages. She said it was a very co-operative, gold standard team.
**Suze attended the Urology AGM and said the team was more harmonious.
**The meeting closed at 2.30hrs
**Date of next meeting: May Wednesday 10th – BICS Training Room, Oak House
TIME: 12.30 – 2.30
VENUE: – BICS Training Room, Oak House 12.30 – 2.30
Patient representatives to meet at 12.00 for refreshments and catch-up.