MKCPP
Milton Keynes Cancer Patient Partnership
Wed 12th September – 11.30 – 14:00 – Eaglestone Function Room MKUH
MINUTES
Present:
Martin Bell User rep prostate group
Elizabeth Bradley User rep, Breast
Sally Burnie Head of Cancer Services
Rose Coppard User rep, Lower GI & volunteer – Mac Unit
David Buckley MK Cancer Prostate Support
Christine Cowap Macmillan Engagement Co-ordinator for MK and Bucks
Michael Howard User rep. Lymphoma
Carol Hewett User rep, Upper GI
Jaff Newton MKCPP Secretary, User rep, Breast
Suzan St Maur MKCPP Chair, User rep, Breast, Bladder, Carer
Trevor Hutson User rep, Laryngeal cancer patient
Sally Hutson User rep, Carer
Amanda Naylor H&N ANP
Lesley Loughton User – Observer
Linda Wilson User rep, Breast
Andrea Kingston GP retired – Hanslope & District Cancer Wellbeing & Support Group
Tim Patrick User rep Chair stoma support group – Observer
Revd. Sarah Crane Team Chaplain
Sophie Austin Cancer Dietitian – Wellbeing team
Geoff Saunders User rep, Lymphoma – REMAP
Angela Sheldrick Breast re-design Project Manager
Caroline Tovey Cancer Psychologist -Wellbeing team
David Tomlison User rep prostate group
Sam Younan User rep prostate group
Diane Nicholson Swindon Deputy cancer manager
Darsun Ramm Swindon – carer
Heather Prictor Swindon User rep
Rosemary Albone Swindon User rep
Lynne Hall Swindon Cancer Services Senior Administrator
Sarah Annis Reflexologist
Faye Jordon Champion Strength
Tim Patrick Chair, MK Stoma Support Group

Apologies:
Claire Crick User rep, Breast
Jen Davies Cancer Manager
Vanessa Freeman Gwynn User rep, Carer
Michaela Tait Patient Experience Manager
Phillip Bell EOL Lead
Amanda Maguire EOL ANP
Zak (Srinivasa Rajamani) Cancer Physiotherapist – Wellbeing team
John Sorrell GP retired – Hanslope & District Cancer Wellbeing &Support Group
Tony Kelly Volunteer – Mac Unit and car driver
Sue Fitzgerald Gynae ANP
Jeanette Wells Gynae ANP
Graham Anderson User rep
Bob Gould Red House PPG
Vanda Gould Red House PPG
Heather Oddy Administrative project officer for Volunteering Matters
Jean Mattinsley User rep – Carer, Healthwatch rep
Steph McPherson User rep, Breast & Ovarian
Ray McPherson User rep, Carer
Kate Iseton Lymphoedema nurse – Willen
Carly Polti Lymphoedema nurse – Willen
Barbara Saunders User Rep, Lymphoma
David Stevenson User rep, MK Moles (skin)
Carol Ord Cancer Alliance STP Programme Manager (Bedfordshire, Luton & MK)
Gail Spooner User rep, Breast, Lead LGFB
Nicky Beboeau Support and Information
Sam Timmins Macmillan Cancer Information & Support Manager

Future dates for your diary:
Nov Tue 13th – 12:00 – 14:00 – Willow Room Oak House

All meetings during 2019 will be from 12.00 – 2.00 venue TBA
January Wed – 9th
March Tue – 12th
May Wed – 8th
July Tue – 9th
September Wed – 11th
November Tue – 12th

**Item #1 – Welcome
*Suze welcomed everyone, especially our guest speakers Faye Jordon and Sarah Annis, the Swindon Cancer Partnership group and Lesley and Tim observing for the first time. The Agenda was adjusted so Sally could attend other meetings

**Apologies
These were noted.

**Item #2 – Round-robin introductions

**Item #3 MKUH – Sally
Sally said that at the November meeting she would give a presentation on the New Cancer Unit which was still on track. On November 8th “signing the Steel” will take place and boarding with “peep holes” will enclose the area plus placards etc. to inform the public. Five sub-groups were being set up to ensure the details for the separate areas were in place and that patient representatives would part of these groups.
She said that Winter Planning was taking place and as a result the Eaglestone Function room would be unavailable for meetings as it was being converted into a Chemo suite since that would now become an extra ward. Therefore all the venues for 2019 MKCPP meetings would be rearranged.

**Item #4 – Minutes
The Minutes were agreed and signed by the Chair.
There were no matters arising.

**Item #5 – Guest speakers
Faye Jordon, Fitness Instructor and Personal Trainer, cancer survivor
Faye told us her very moving story of dealing with life threatening cancer at the age of twenty and how she overcame the major challenges to her health, and career, failing to be eligible to represent her country in rugby to being successful in power lifting and inspiring others to do the same at her no frills training centre in Bletchley, and at the same time defying the odds of compromised fertility to be the mother of three very active sons. She has maintained a positive attitude throughout.

Sarah Annis – Reflexologist especially for cancer patients
Sarah said that reflexology originated in Asia and explained the basic principles. She qualified in 2007. She said that in one year three members of her family were diagnosed with cancer. She was able to help her father by calming his anxiety, restlessness and fatigue and reset a positive attitude. While volunteering for eighteen months at the Bedford day hospice she had very positive feedback especially from men who were at first sceptical but feelings of anger, fear of dying and depression were reduced and gained the confidence to move out of a wheel chair and into using a stick. The therapeutic touch at end of life was more widely recognised. Comments –
Amanda said there was lack of clinical evidence, but belief in the therapy, and the quality of one to one treatment made a difference.
Sarah said praying with someone and holding a hand was calming. More discussion followed.
Suze thanked both speakers for their inspirational presentations.

**Item #6 – Updates from round the table
Michael – Lymphoma
Michael said he had been three years on a clinical trial, with blood checks every three months and appointments with the six consultant every six months. He is not allowed grapefruit or Seville oranges (marmalade).
He is also helping to promote trials at the JR Oxford in an ambassadorial role and is in touch with Linda about attending the R&D meetings at MKUH.

Lesley – Breast – Observer
Lesley said that she struggled when treatment stopped, so attended the Wellbeing support group, the Choir and had one to ones with support nurses. She said she tried to keep active so swims but has not yet progressed to her bike and now wanting to “give something back” for the care she received. A Macmillan nurse said she should investigate MKCPP.

Geoff – Lymphoma (Chair)
Geoff said the group remains strong in spite of recurrences and holidays. He is stepping down as Chair, but will continue in the group while caring and supporting his wife who has had Lymphoma for 15 years. He still remains very involved with REMAP.

Angela – Cancer & Beyond
Angela said the hospital website would promote National and Local Cancer Support groups and there would be an APS available for Cancer patients.

Swindon Cancer Patient Group
Diane said they were in the process of relaunching their group which was flagging, had only nine members but it was early days and they wanted to learn from MKCPP. She asked first about the “Hope course” Suze mentioned the new Bucks umbrella for support groups but explained that support groups and patient participation groups were fundamentally different. Discussion followed about the various health professionals and health related organisations that needed to be to be part of the group in addition to the hospital cancer services team and of course the users, who drive the group.

Sam and Martin – MK Prostate Cancer Support
Sam said that the Prostate website was very good, stories, treatments, pain and its relief.
He said that the next free PSA testing session would be on 6th October at the Centre in Fishermead. He reminded us that 10% were found to be positive after last year’s testing and that one man dies every 48 minutes so raising awareness is so important. They also thanked Sally for the presentation she gave to their group.

Caroline Tovey – Cancer Psychologist
Caroline said this was her third meeting with us. She said she had clinics on Monday & Tuesday and had time with staff. She liaises with Sophie and Zac, signposting. She has a group for post diagnosis patients and also pre-treatment.

Sophie Austin – Cancer Dietician
Sophie said that she was being kept busy. She than asked Jaff to check that she was on the distribution list as she was not receiving the MKCPP emails.

Sarah – Chaplaincy
Sarah said it is a wide ranging 24/7 service offering holistic care after bad news has been given, listening and spiritual care. She posed the question as to how we thought cancer patients might be helped.

Rose – Colorectal
Rose said the Colorectal IV was not well attended. Feedback from the national survey suggested that patients found it difficult to talk about procedures, and the specialist nurses didn’t visit patients on the ward after surgery for a chat, leading to feelings of abandonment.

Tim – Chair of the MK Stoma Support group observing, said he would like to attend MKCPP meetings to help spread awareness.

Amanda Head & Neck
Amanda said attendance at Heads Together fluctuates, possibly the clash with the World Cup! In November the Patient/Professional Conference will be held in Nottingham, where a laryngeal patient from Luton will be speaking.

Sally – carer
Sally said she will be giving talks to groups on emergency help to neck breathers and will also be talking to the new medical students. She would like to offer this to all local surgeries.

Chris – Macmillan
Chris said the Bucks Support Group Report was complete and she would be sending it out. She said Pauline Craig the new Partnership Quality Lead would like to attend our November meeting. She also said that she would be visiting Hard to Reach groups Asian and BME.

Linda – Research and Bosom Pals MK
Linda said the Breast PODG was meeting in October which she hoped to attend. There was to be another MKUH R&D meeting before Christmas that she hoped to attend with Michael. For more information about bosom Pals MK see website – http://bosompals-miltonkeynes.btck.co.uk

MKSuperMoles
See Facebook page for more details of meetings – https://www.facebook.com/groups/MKSuperMoles/

Environment audits
Addendum – Jaff and Linda have been asked to do an e-audit by the Breast Screening Unit. It has been arranged for 7th November.
They were also asked by the Breast Improvement Group to do an e-audit in the day surgery waiting areas because a number of concerns have been put forward. A date is being planned for late November early December.

Cancer and Beyond
Addendum A support evening has been arranged for the 22nd November.

Website – www.mkcpp.org
For updates between meetings, check out the Tracker page on our website, http://mkcpp.org/tracker/

LGFB
The last date for this year is, 15th November.

Item #8 – AOB
**Suze thanked Sarah for the delicious lemon drizzle cupcakes she provided to raise funds for the New Cancer Unit.
Suze also said that the regional manager from Lloyds Pharmacy had offered to fund the next printing of the MKCPP Resources Directory.

**The meeting closed at 14.07 hrs

**Next meeting – Nov Tue 13th – 12:00 – 14:00 – Willow Room Oak House (for patient reps catch-up at 11.30)

SIGNED BY THE MKCPP CHAIR:
Suzan St Maur AMIPA

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