Tue 10th July 2018 11.30–14:00 Eaglestone Function Room MKUH
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
Jen Davies Cancer Manager
Carol Hewett User rep, Upper GI
Jaff Newton MKCPP Secretary, User rep, Breast
Suzan St Maur MKCPP Chair, User rep, Breast, Bladder, Carer
Jean Mattinsley User rep – Carer, Healthwatch rep
Nicky Beboeau Support and Information
Sam Timmins Macmillan Cancer Information & Support Manager
Steph McPherson User rep, Breast & Ovarian
Ray McPherson User rep, Carer
Linda Wilson User rep, Breast
Andrea Kingston GP retired – Hanslope & District Cancer Wellbeing & Support Group
John Sorrell GP retired – Hanslope & District Cancer Wellbeing &Support Group
Revd. Sarah Crane Team Chaplain
Sophie Austin Cancer Dietitian – Wellbeing team
Caroline Tovey Cancer Psychologist -Wellbeing team
Zak (Srinivasa Rajamani) Cancer Physiotherapist – Wellbeing team
Amanda Maguire EOL ANP
Michaela Tait Patient Experience Manager
Phillip Bell EOL Lead
Claire Crick User rep, Breast
Martin Bell User rep prostate group
Vanessa Freeman Gwynn User rep, Carer
Trevor Hutson User rep, Laryngeal cancer patient
Sally Hutson User rep, Carer
Amanda Naylor H&N ANP
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 Observer
Vanda Gould Red House PPG
Heather Oddy Administrative project officer for Volunteering Matters
Angela Sheldrick Breast re-design Project Manager
Kate Iseton Lymphoedema nurse – Willen
Geoff Saunders User rep, Lymphoma – REMAP
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)
Kim Weston Bereavement Officer
Tina Churchill Macmillan
Alan Hastings Chair, PPG Whaddon Medical Centre
Gail Spooner User rep, Breast, Lead LGFB
Future dates for your diary: please note the varying times.
Nov Tue 13th – 12:00 – 14:30 – Eaglestone Function Room
All meetings during 2019 will be in the Eaglestone Function Room from 12.00 – 2.00
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 speaker Fiona Coldron – “Something to look forward to.” The agenda order was re-arranged so that HCPs who needed to leave early could do so.
These were noted.
**Item #2 – MKUH – Sally/Jen
Sally started by saying that the new Cancer Unit was still on track and the foundation mapping had begun. 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. More information to follow. She said that a lot of her time recently was taken up attending the Cancer Alliance STP meetings for both the Thames Valley and East of England because of the various projects in each region required decisions that affected MKUH such as pathway improvements, the FIT test for bowel screening and waiting time targets etc. A weekend recruitment drive is to be held to attract more staff for the new Unit.
Jen said that IVs were still being arranged.
**Item #3 – End of Life
Amanda Maguire, ANP, updated us
Amendments – Sophie pointed out that in item **Head and Neck” Sophie Boyle should read Sue Boyle.
After the Minutes were amended they were agreed and signed by the Chair.
There were no matters arising.
**Item #5 – Round-robin introductions
Sally, a deputy lead nurse from Oxford was observing
**Item #6 – Guest speaker `Fiona Coldron “Something To Look Forward To”
Fiona, founder member of the charity, gave the presentation in place of her daughter Francesca Abery as stated on the Agenda. A cancer patient herself who was diagnosed in 2007, Fiona wanted then to do something positive. Her background was in social care and volunteering. In 2013 she developed secondaries and understood the cost of having cancer. She said it had originally been her husbands’s idea when she was first having treatment to set up a charitable website offering “Experiences and Gifts” to cancer patients, that ranged from small items such as jewellery, cosmetics, a family photograph, to a meal out, concert or play, night in a hotel or visit to a zoo, all donated by individuals and companies. They became a charity in 2015 and in 2016 their daughter Francesca gave up her job to join them.
Patients can apply themselves or health professionals can apply on their behalf and supply proof of their condition. The average age is between thirty and sixty but there is no age restriction. Up to one year after a primary diagnosis one main gift and three small can be applied for and after a secondary diagnosis one main gift and three small but in any year after. They have supported over 3500 patients, a great achievement.
**The Wellbeing Team
Sophie Austin – Cancer Dietician
Sophie said referrals were spasmodic from out-patients and day-patients. She would ideally like to offer the service at specific stages of treatment and to encourage self-management of food intake to boost recovery, help with fatigue and enjoyment of meals.
Caroline Tovey – Cancer Psychologist
Caroline said this was her second meeting with us. She said she was getting referrals from consultants and the nursing teams and has been asked for advice on how to have a more holistic approach to the care of patients. as well as emergency referrals after palliative patients have been given challenging news and even much later, maybe five years after diagnosis and treatment. She is also available for staff.
Zak (Srinivasa Rajamani) – Cancer Physiotherapist
Zak said he has a holistic approach to patients to help improve their experience of physical activity. He said that referrals were increasing and that he was trying to engage more with the community sports activities already in place and to follow NICE guidelines. He is also trying to make sure that all GPs know about prescriptions for physical activity and are aware of what local groups offer including palliative patients who often miss out. He liaises with Nikki at the Hospice where programmes are already in place and proving very popular as a means to improving well-being.
**Item #7 – External Updates
Chris said that not Bertie Bus, but “Dolly” will be returning to MK in July, on the 16th – 20th, and she would appreciate some volunteers but will provide more information nearer the time. She said the TV Cancer Alliance were holding interviews for the replacement of Michael Mawhinney.
She said she was working hard to contact patient groups and would welcome suggestions.
Linda said they continue to get new members each month. The June meeting was with Clarins make-up by the Boots team, and the July meeting was with Alex from Enliven, pilates designed for women after breast cancer. August will be “Planning for your future” by Amanda Maguire.
For more information see website – http://bosompals-miltonkeynes.btck.co.uk
See Facebook page for more details of meetings – https://www.facebook.com/groups/MKSuperMoles/
MK Prostate Cancer Support
David said that they were currently without a secretary but the group was strong. They had an excellent presentation about the genome Project in Oxford. Some members attended the Birmingham Conference where they shared many experiences with other delegates.
Hanslope & District Cancer Wellbeing & Support Group
Andrea said that that the combined lunchtime meetings were working well. Amanda gave her End of Life presentation.
John said that his session with the trid year medical students was challenging.
Jean said that both Ellie and Tracey had left the support team and Ross Charles was a temporary appointment.
Their AGM will be held on September 20th from 1.00 – 5.00 at the Ridgeway Centre in Wolvertton MK12 2TH All welcome.t
Linda attended a meeting to develop their strategy. She said they were trying hard to develop their service.
Jaff – we need to arrange more for 2018/19, when everyone is DBS checked.
Cancer and Beyond
More support evenings will be arranged for the autumn, with other surgeries involved.
Asplands and Stony Stratford practices are still interested but did not manage to attend the June evening.
Website – www.mkcpp.org
For updates between meetings, check out the Tracker page on our website, http://mkcpp.org/tracker/
The dates for this year are, 19th July, 16th August, 20th September, 18th October, 15th November.
Jaff said help was always welcome.
Phillip Bell, End of Life Lead for Palliative Care
Phillip briefly explained his background as a palliative care nurse in North London and then Willen Hospice before joining the team at MKUH. His post has been funded for two years by Macmillan to develop a strategy for MKUH and the Community. By September there will be a complement of staff in place, managed by sally Burnie. He said he would like to involve more volunteers on the wards and have Macmillan engagement.
Item #8 – AOB
**Sarah said that she is making cakes for meetings and individuals to raise funds for the New Cancer Unit.
**Ray said that he and Steph had been preoccupied house hunting. They were wished the best of luck.
**Carol said that she was going to be a volunteer working with the Palliative care team.
**Rose attended the Colorectal IV.
**Jaff said that a member of Super Moles support group would be attending the Skin IV.
**Linda said that she attended the Thames Valley Breast PODG group meeting where they updating the Breast protocols.
Michaela Tait arrived after the meeting had closed and gave Jaff information about the Patient Experience Team – papers attached.
**The meeting closed at early at 13.30 hrs