Milton Keynes Cancer Patient Partnership
Wednesday 10th May 2017, 12:30 – 2.30
BICS Training Room, Oak House
Sally Burnie Head of Cancer Services
Jen Davies Cancer Manager
Carol Hewett User rep, Upper GI
Geoff Saunders User rep, Lymphoma – REMAP
Revd. Sarah Crane Team Chaplain
Jaff Newton MKCPP Secretary, User rep, Breast
Sam Timmins Macmillan Cancer Information & Support 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
Sabina Dawson User rep, Carer
Sue Fitzgerald Gynae ANP
Steph McPherson User rep, Breast & Ovarian
Amanda Naylor H&N ANP
Sue Stannard Speaker – Breast cancer patient
Maria Buckley MKPCS Secretary
Jean Mattinsley User rep – Carer, Healthwatch rep
Michaela Tait Patient Experience Manager
Barbara Saunders User Rep, Lymphoma
Elizabeth Bradley User rep, Breast
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
Andrea Kingston GP retired – Hanslope & District Cancer Wellbeing & Support Group
Chris Ford Clinical Trials Administrator (CHORT)
Kate Iseton Lymphodema nurse – Willen
Carly Polti Lymphodema nurse – Willen
Paul Maclean CRUK Volunteer
John Sorrell GP retired – Hanslope & District Cancer Wellbeing &Support Group
Ray McPherson User rep, Carer
Sally Leverett Willen
Jeanette Wells Gynae ANP
Kim Weston Bereavement Officer
Graham Youngman Asplands PPG, User rep
Craig Macmillan Oncologist, Linford Wood Medical Centre
Barbara Pierce Breast care nurse, Linford Wood Medical Centre
Kim Williamson Education, Linford Wood Medical Centre
Gail Spooner User rep, Breast, Lead LGFB
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
Anil K Hemandas Consultant Colorectal and General Surgeon
Future dates for your diary:
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 first paid tribute to our irreplaceable member, Richard Freeman who so sadly died on Easter Sunday. She said that perhaps later we can think of a suitable memorial to have in the new cancer building because the project was very dear to his heart and he had worked tirelessly and enthusiastically for cancer services at MKUH. RIP
**Suze then welcomed everyone, especially our guest speaker, Sue Stannard, and Maria, the secretary of the local Prostate cancer group.
These were noted.
Geoff pointed out that in Item 6 *Lymphoma Group that it was Rosa Antoncoiwarva, a founder member of the group, who was made an Honorary Life Member and not Fay Grech-Marguerat.
After the correction the Minutes were agreed and signed by the Chair.
Item #2 – Round-robin introduction
**Members and guests briefly introduced themselves.
Item #3 – MKUH – Sally/Jen
**Jen said that there had been some team changes
Irfan Molvi – Team leader/clinical data tracker, General Medicine
Roberta Sharpe – Team leader/clinical data tracker, Surgery and Women’s and Children
Michelle Morrison – Breast and Gynae MDT Co-ordinator/ data tracker (newly appointed)
Gail McKune – UGI/HPB/CUP and Skin Co-ordinator/ data tracker (all General Medicine, changed Colorectal for Skin)
Leigh-Ann Taylor – Urology and Colorectal MDT Co-ordinator/ data tracker (all surgery, changed Skin for Colorectal)
Amanda Salt – Lung, CNS, Haem MDT Co-ordinator/ data tracker (General Medicine)
Iona Simmons – Data tracker, Breast
Alice Sheridan – Bookings Co-ordinator (part time)
Natalie Cook – Cancer Services Administrator
Waiting to advertise the full time post for Cancer Services Booking Co-ordinator (to replace Michelle)
Jen then said that the internal validations would be finished by mid-June, uploaded and sent off to the National Peer Review.
**Sally said that the new Cancer Centre was progressing well and that they would soon be arranging a meeting with patient representatives to give their opinion on colours and furniture etc.
The public launch will take place in September when there will also be a recruitment drive to ensure that there is the correct skill mix of staff and to ensure sustainability with creative ways of working and training.
Good news that the cancer targets for the year had all been met including those with the tertiary centres.
Staffing in chemotherapy was still challenging, so to meet the demand agency staff were being used in the short term.
Dr Daniel Ajzensztein (pronounced Eyesenstein) is a new Oncology member of staff in a joint post with Oxford.
Radiotherapy at Genesis will continue for three more years plus two to ensure sustainability of the service. Discussions with Oxford are still ongoing.
A new multi-storey car park will be built before the end of the year to alleviate present problems.
Item #4 – Guest speaker Sue Stannard
Sue thanked us for inviting her to speak about rebuilding her life after breast cancer. She told us about her cancer journey, the ups and downs and how she coped, treating it rather like a project that had to be understood and managed. She then went on to tell us about how she became involved with the breast cancer “Now” charity which led to research, campaigning, fund raising and working with various teams to raise awareness and tackle the inequalities of patient pathways depending on location.
It was a fascinating, thought provoking talk which created many questions and much discussion.
Item #5 – Working groups
**Cancer and Beyond
Suze said that we will be contacting Toni Fisher at the WMC to arrange for another local meeting and to establish a similar group at the Red House surgery. We are even more determined to progress this project for Richard.
**Cancer Patient Feedback
Suze said that the new Journal was available and was being put into all diagnostic packs.
A date to relaunch in the Mac Unit to be arranged.
We are still waiting for the DBS checks to be arranged by Michaela.
**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 the gardens are well used and enjoyed by patients.
Addendum – a mother duck made her nest in the garden and hatched 3 ducklings, much to the delight of patients, staff and people in the restaurant. Unfortunately they were rounded up and taken to a more suitable environment.
**Website – www.mkcpp.org
Suze continues to monitor and update. She said that there had been over 1000 hits. The offer still stands from Suze if members want to learn how to use, update and add to the website.
Jaff said that she would try to arrange an audit in the Head & Neck Clinic area before the next meeting, and also Ward 22.
Jaff reminded everyone that the Macmillan Bus, Bertie, would be in Newport Pagnell on 1st June, Bletchley on 2nd June and Willen Lake car park on 25th June.
Sam said that there were still places for the Macmillan Living With and Beyond Cancer Conference on Friday 9th June in the Conference Centre Oldbrook.
Angela said that a previous Head & Neck cancer patient would be telling his story and performing some magic.
Jaff said that the LGFB continue to be extremely popular and are held on the third Thursday of each month in the Age UK Peartree Centre. They are booked up until July.
**Information / Literature / Leaflets
Item #6 – Support Groups and other updates
**Bosom Pals MK
Jaff – Jaff said that Bosom Pals’ monthly afternoon meetings at Dobbies were popular and attracting new members. The Annual BBQ in Emberton Park is the 25th June. For more information see website – http://bosompals-miltonkeynes.btck.co.uk
**Bladder Group – The “Pee-Wees” –
No update. Group dormant.
The Carers Lounge in the new Main Entrance area will be open in June.
**Health and Wellbeing Patient Support MKUH
No new update.
Geoff said that the National Conference and Wellbeing Weekender was held at Whittlebury Hall on 6th and 7th May. Geoff talked about having a “Buddy” and the problem of confidentiality in the announcement of a death if only a first name is known.
Revd. Sarah said that data protection does not apply once someone dies.
Geoff went on to say they are tying in with other groups, e.g. Singing – Beyond the “C”. They will have a stand at the MK50 event.
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 MKPCS
Maria said that on 1st May MKPCS held an Awareness event road show in Leighton Buzzard.
On 17 May 2017 they will be manning a stand at the Shenley Wood Village Wellbeing Day, and that their next meeting on the same day in the evening they are having presentations by Peter Gosling (PCUK Services Representative and Tonina Ashby of Tollers Solicitors.)
For more information see website – http://prostatemk.org
**MK Supermoles – Skin Cancer Support group
Skin IV is on 14th June
Melanoma Conference, 16th & 17th June, Bristol.
**Willen support group
No update to report.
Now booking for the Healthwatch Event in Middleton Hall on 12 September. MKCPP will have a stand as usual.
Their AGM is on the 26th July in the Conference Centre, Oldbrook.
Linda said there is a new overarching group meeting in June to be chaired by Martin Wetheral. They will look at Terms of Reference.
The next Patient Congress meeting is 19th June Sherwood House, Bletchley.
Item #7 – Miscellaneous
**Rose attended Colorectal AGM and said that there were delays in histology results often due to outsourcing. The IV is on 16th June.
**Amanda said that that there was a shop in Blackpool that provided Sim-cards being for cancer patients and that they were particularly useful for H&N patients also restaurant cards explaining ‘modified diets’. There was a 24hr helpline.
Addendum: Chris Lewis, a Croydon based cancer survivor also runs a free service for cancer patients involving phone calls, text and data, along similar lines. For more information go http://www.chris-cancercommunity.com/free-callstxtsdata/ . We are hoping Chris will come to talk to us at a meeting soon.
**The meeting closed at 2.27hrs
**Date of next meeting: Tuesday July 11th 2017
*Venue: BICS Training Room, Oak House 12.30 – 2.30
Patient representatives to meet at 12.00 for refreshments and catch-up.
Chair signature…………………………………………………………………… Date ………………………