Milton Keynes Cancer Patient Partnership
Tuesday 8th March 2016, 12:30 – 2.30
BICS Training Room, Oak House
Alan Hastings Chair, PPG Whaddon Medical Centre – Observer
Carol Hewett User rep, Upper GI
Claire Crick User rep, Breast
David Buckley User rep, Prostate
Elizabeth Bradley User rep, Breast
Graham Anderson User rep, Prostate
Graham Youngman Asplands PPG, User rep
Jaff Newton MKCPP Secretary, User rep, Breast
Jean Mattinsley User rep – Healthwatch rep, Carer
Jeannie Righton User rep, Lung
Kim Bowles Macmillan Development Manager
Leanne Sinclair Beating Bowel Cancer – Community Fundraiser
Linda Wilson User rep, Breast
Phillip Winn Revd. Hospital Chaplain
Ray McPherson User rep, Carer
Richard Freeman User rep, Upper GI, Haematological
Sally Burnie Head of Cancer Services
Sam Timmins Macmillan Cancer Information & Support Manager
Shaeen Dalvi Macmillan
Steph McPherson User rep, Breast & Ovarian
Suzan St Maur MKCPP Chair, User rep, Breast, Bladder, Carer
Vicky Lawford Macmillan
Angela Sheldrick Breast re-design Project Manage
Bronwen Webster User rep, Head & Neck
Dawn Allen User rep, Carer, Paediatric, The Henry Allen Trust
Deb James User rep, Lower GI
Gail Spooner User rep, Breast, Lead LG,FB
Jenny Abbot User rep, Breast
Jen Davies Cancer Manager
Rose Coppard User rep, Lower GI
Sarah Crane Revd. Team Chaplain
Kim Weston Bereavement Officer
Lorraine Mir User rep, Skin
Sabina Dawson User rep, Carer
Toni Fisher Manager, Whaddon Medical Centre – Observer
Future dates for your diary:
2016 NEW TIME 12.30 – 2.30 All being held in the BICS TRAINING ROOM, OAK HOUSE
May Wed 11th
July Tue 12th
Sept Wed 14th
Nov Tue 8th
Item #1 – Welcome
**Suze welcomed everyone, especially our guests Leanne, Vicky, Shaeen and Phillip. There was a round-robin introduction.
These were noted.
These were agreed and signed by the Chair.
Linda pointed out that the Breast MDT AGM had been rearranged for Friday 11th March.
Item #2 – MKUHFT – Sally
** Sally started by conveying thanks from Jen to all members who had attended the MDT AGMs and said that more help would be needed for the Internal Validations (IVs) when the dates had been arranged.
New Therapy Centre – Sally said it was progressing well and that the formal process was with the Trust Board and that she would share more news at the next meeting. After a question from the Chair, she said that the Radiotherapy was a separate business plan that would take longer, but talks with Oxford and NHS England were taking place. An area for the build had been identified and the buildings would be co-joined for the best possible patient experience.
National cancer patient experience survey – Sally said that eighteen months on from the poor results, the Cancer Team had been working really hard to address concerns and to make improvements with positive help from Macmillan.
The latest survey was uploaded before Christmas and the results should be available in late May, which she will share with the group. The improvements made will be evident.
Patient Journal – Sally said that after the relaunch of the updated version, the monthly meetings to check the diaries that had been handed in were re-established. 100 stamped addressed envelopes were going to be given with the Journals with the hope that it would increase the return rate. So far we have had 6 but there were also the recorded comments from the face-to-face sessions with patients and relatives. What what must be remembered is that treatment can often run over several months or longer, so we can’t expect results to come in quickly.
New staff – recruitment has made a real difference to the cancer team. ENT now has its first Advanced Nurse Practitioner (ANP) Amanda Naylor; Suzanne Abbot is the new Haematology ANP and Vickie Searle and Carol Hobson are for UGI.
Sadly the very much valued UGI ANP, Pam Steer, will be retiring from full time work after 25 years and will be missed by both staff and patients
**Annual meetings were/are being held in Jan/March 2016 and the Internal Validations will follow in March/May. The only external Peer Review is for CUP (Cancer of Unknown Primary) on 18th May.
Palliative care 20th Jan 10 -11 Jean
UGI/CUP 21st Jan 2-4 Carol
Gynae 25th Jan 2-4 Jaff
Skin 28th Jan 2.30-4 Lorraine/Clare
Colorectal 14th April Rose
Breast 11th March 12-1 Linda
Urology 7th March Suze
Paeds 22nd March 2,30-4 Dawn/Jaff
Lung 22nd March 1.30 -2.30 Jeannie/Jaff
Item #3 – Guest speaker
Leanne Sinclair – Beating Bowel Cancer Charity- Fund raiser /Awareness
Leanne gave a very interesting and comprehensive overview of the Charity and her role within it.
She explained that April was Bowel Cancer awareness month and that there would be a variety of events taking place. She distributed leaflets, posters and her card.
The website http://beatingbowelcancer.org provides links to online forums for adults and younger patients, and contains a nurse helpline
She asked about a local support group and said she would be interested in talking to the Colorectal ANPs Natalie Ormston and Sheila Morey, Sam and our patient representative Rose about setting up a group.
There were lots of questions, and discussion covering bowel screening.
Action – Sam to liaise with the colorectal team and Rose.
Item #4 – Working groups
**Cancer & Beyond
Richard took the lead in Angela’s absence in a discussion about what patients want when treatment finishes because there are still so many unanswered questions. Communication would be essential after the survey, to attract patients to informal/formal drop-in sessions at the local practice covering topics that had been requested in the survey. We will be kept up-to-date on progress made.
** Suze asked Allan to talk about his involvement in his PPG. He said he had previously been involved in LinK which became the present Healthwatch where they gather feedback from patients about their care and treatment. He said that at the last PPG meeting there were 14 attendees and they covered a range of issues and they were supported by Toni, the very active practice manager.
They have some very popular groups originally requested by patients: Parkinsons, COPD and the Whaddon Walkers.
Suze commented that there was a strong move to get continuing support from Primary care rather than Secondary care because of easy access and familiarity.
Kim asked what it would look like, would it be kept low key, tailored to the results of the survey and developing through natural growth. She said that Macmillan could offer their expertise in evaluation to use as evidence, possibly using patient stories.
Vicky said it would be meeting people’s needs and asked about time lines for the survey.
The NHS/MKUGH pilot led by Angela Sheldrick would be targeting Breast cancer patients but if successful it would lead to other tumour groups and perhaps mixed groups which would include carers.
Meanwhile the survey being conducted by Whaddon Medical Centre is for all cancer types.
Alan said it was important to make the GPs aware of the sessions so that they can inform their patients.
Suze asked for a show of hands for support on this project; response was unanimously positive.
Graham Y said it was a “no brainer” and should prove really popular, keep it informal and use common sense.
Vicky said that if funding was required that Macmillan could provide set-up grants that she could help with.
**Should we become a charity?
Ray said this idea was floated at the previous meeting. He said that we do qualify. He was unsure at this stage what costs would be involved in setting up but would pursue for the May meeting.
**Patient Journal Feedback Project
Linda said that she had collected 8 returned Journals which she will check and feed back to the Cancer team.
Jaff said that we need to resume the drop-in sessions but on a Wednesday and Thursday this time to capture a different group of patients.
Volunteers wanted for this please.
**Cancer Resources Directory.
Suze is monitoring. Addendum: if you come across any organisations which you feel should be in the Directory, please email them to Suze at firstname.lastname@example.org.
**Public Liability Insurance – Ray and Richard ?????
**Macmillan Information management – Kim and her team are very much there for us offering suggestions and support as needed.
**Courtyard garden – Jaff said that Sarah was putting her in touch with a church group who were keen to spend a day in the garden.
Addendum – Jaff met with Sheila and Valerie and on the 7th May 12 volunteers will spend a day in the garden. Richard has measured the area in need of matting and bark and approached his original contact for a favourable quote. Sarah said she may be able to contribute to the funding of the matting. Jaff has made contact with Santander again and is waiting for a reply, one member has spent a few hours in the Santander garden, weeding and watering but it is now in need of a summer make-over. Peter Jones from the Estates team has promised to spray the paths before the 7th.
**Website – www.mkcpp.org – Suze will continue to monitor and update.
**Environment audits. Jaff said she would arrange for audits in the Skin and Gynae Clinics to take place in May on a Wednesday morning. Volunteers required please.
**LGFB – Sam said that all places were booked up until August, and that two extra sessions would be held in April to cope with the demand.
Gail was at Milton Keynes College giving a presentation to the beauty students in the hope of recruiting some for coming sessions to solve the problem of having insufficient volunteers.
**Paediatric/Henry Allen Trust – Dawn unfortunately was unable to attend the meeting.
**Information / Literature / Leaflets – Sabina will continue to monitor and update.
Item #5 – Support Groups and other updates
**Bosom Pals – The Goodie bags for Breast patients continue to be well received. 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.
*Carers MK – working with Karen on one to one support.
**Eaglestone restaurant group – Sam said that a separate room would allow for more privacy. It offers wellbeing support, and addresses individuals’ needs at the time, such as fear of a recurrence
**Lindford Wood group, has ceased due to staffing issues.
**Lymphoma – Next meetings – 5 May, 2 June, 7 July, 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 this link.
**Prostate Group – MK-PCS – Next meetings March 16th Men in Sheds presentation at Kiln farm. April 11th Shenley Wood Village, Consultant Professor Thomas, May 18th Shenley Wood Village, Annual Wellbeing Event; June 13th Shenley Wood Village Relate Sex Therapist…For more information see website – http://prostatemk.org
**MK Supermoles – Skin Cancer Support group – Next meeting Saturday May 21st 11-1pm at St Mary’s Church Hall, Church Green Road.
**Willen Hospice – Jean said that the Service User Group was in the process of change and the last meeting had been cancelled. This was disappointing.
Vicky said she could be of help with change of direction if needed.
Addendum – A meeting has been scheduled for May 5th to discuss the way forward.
**Chaplaincy service – Philip introduced himself and said he had been in post since November so the team was now up to full strength. He said he was there for both patients and staff. Suze said he was very welcome and appreciated his attendance at our meeting especially as Sarah had a prior commitment.
Item #6 – Miscellaneous
**Research – Linda said there was nothing from TVSCN, but locally the team was strong and active recruiting patients on to trials. She said that she presented at their last forum.
**TVSCN – nothing to report, the patient group has not been reinstated as yet.
Item #7 – AOB
The meeting closed early at 14.03hrs.
Date of next meeting
May Wed 11th
TIME: 12.30 – 2.30
VENUE: BICS TRAINING ROOM, OAK HOUSE
Patient representatives to meet at 12.00 for refreshments and catch-up.