Milton Keynes Cancer Patient Partnership
May 9th 11.30–14:00 Eaglestone Function Room
Sally Burnie Head of Cancer Services
Rose Coppard User rep, Lower GI & volunteer – Mac Unit
Claire Crick User rep, Breast
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
Vanessa Freeman Gwynn User rep, Carer
Trevor Hutson User rep, Laryngeal cancer patient
Sally Hutson User rep, Carer
Linda Wilson User rep, Breast
Tony Kelly Volunteer – Mac Unit and car driver
Andrea Kingston GP retired – Hanslope & District Cancer Wellbeing & Support Group
Angela Sheldrick Breast re-design Project Manager
Kate Iseton Lymphoedema nurse – Willen
Annette Waters Caring for carers
Sophie Austin Cancer Dietitian – Wellbeing team
Dave Wakely “From Me to You Event” (writing letters to cancer pts.)
Heather Oddy Administrative project officer for Volunteering Matters
Caroline Tovey Cancer Psychologist -Wellbeing team
Zak (Srinivasa Rajamani) Cancer Physiotherapist – Wellbeing team
Amanda Maguire EOL ANP
Lisa Robson Loved Forever (lasting memories of loved ones)
Elizabeth Bradley User rep, Breast
Martin Bell User rep prostate group
Nicky Beboeau Support and Information
Sam Timmins Macmillan Cancer Information & Support Manager
Amanda Naylor H&N ANP
Steph McPherson User rep, Breast & Ovarian
Ray McPherson User rep, Carer
Sue Fitzgerald Gynae ANP
Jeanette Wells Gynae ANP
Michaela Tait Patient Experience Manager
Sam Younan User rep, Chair Prostate group
Graham Anderson User rep
Bob Gould Red House PPG Observer
Vanda Gould Red House PPG
Revd. Sarah Crane Team Chaplain
Paul Maclean CRUK Volunteer
Sally Leverett Willen Hospice
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)
John Sorrell GP retired – Hanslope & District Cancer Wellbeing &Support Group
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.
July Tue 10th – 11.30 – 14:00 – Eaglestone Function Room
Sept Wed 12th – 11.30 – 14:00 – Eaglestone Function Room
Nov Tue 13th – 12:00 – 14:30 – Eaglestone Function Room
Item #1 – Welcome
**Suze welcomed everyone, especially our guest speakers, Annette Waters, Dave Wakely, Lisa Robson, Heather Oddy, Sophie, Caroline and Zak from the Wellbeing team.
These were noted including Tina Churchill, MacMillan Partnership Quality Lead
Amendments – the ground breaking date for the Cancer Unit is July not May. H&N Sally’s daughter was hoping to raise £1000 not £10000
After the Minutes were amended they were agreed and signed by the Chair.
There were no matters arising.
Item #2 – Round-robin introductions
Item #3 –Guest speakers
** Annette Waters
Annette introduced herself as an NLP trainer, coach, nutritionist and hypnotherapist helping people and those they care for through anxiety, depression and other mental health challenges. She gave us information about the courses she runs and what encouraged her. She told us about her personal experience of dealing with mental health issues and how she sort help for herself in order to cope effectively.
An interesting discussion followed.
Dave, told us about the inspirational letter writing charity “From me to you” and the workshop being held in MK on 14th June. He spoke about the benefits of writing a letter to a friend with cancer as opposed to sending an email or text, or even a face to face conversation which can often be so difficult. The careful thought that needs to go into it … the pleasure of receiving a letter that can boost ones spirit, make someone’s day and know another person cares… It is an art we should not lose. For more information see the website – From me to you.
**The Wellbeing Team
Sophie Austin – Cancer Dietician
Sophie told us about her new post, working in Ward 22 and outpatient clinics, helping patients from diagnoses to living with and beyond cancer. She is also participating in the “HOPE” course and speaking at support groups.
Caroline Tovey – Cancer Psychologist
Caroline said she was developing her role within the team, working one-to-one with patients during and after treatment and also, importantly, supporting staff.
Zak (Srinivasa Rajamani) – Cancer Physiotherapist
Zak as well told us of his background in specialist palliative care and the benefits of physical exercise during and after treatment; also taking part in group activities to socialise, being outside in the fresh air and setting realistic goals. He, too, will be talking to support groups locally and working with inpatients and others.
A really good discussion followed. This service has been long awaited and it has been made possible by the funding from Macmillan. They will also liaise closely with Willen to ensure joined-up care.
Item #4 – MKUH – Sally/Jen
Sally started with the new staff appointments. Phillip Ball is lead for Palliative Care and End of Life with a two year post, and she hopes he will attend our meetings. She welcomed the new Wellbeing Team and the benefits they will bring to patients and staff. A new Oncologist, Dr Vasarmee from South Africa, would cover gynae patients, working first as a locum for twelve months before the post becomes substantive.
She spoke about the Trust sitting between the two cancer Alliances – Thames Valley for the majority of Cancer pathways and East of England for everything else. She said MK had been selected with funding by the STP to lead on the FIT programme for bowel screening. She said that she will tell us at the July meeting about the actions taken as a result of the National Patient Cancer Survey.
She updated us on the New Cancer Centre, starting with the public fundraising launch on 7th June, with a Breakfast meeting, a launch event in the Intu centre, and an afternoon tea party in the Macmillan garden for patients, carers, volunteers and staff.
She invited volunteers to do a mock CQC inspection of Cancer Services before the official inspection in the autumn. Crib sheets will be provided. More details to follow.
She congratulated the Cancer Services team on meeting the three main targets which is no mean feat: a lot of work has to take place to ensure that patients are seen within the target time and that their pathways are clear and timely.
David asked about having radiotherapy on site. Sally responded by saying that the Trust was still committed but realistically it was at least two years away – but a foot print had been secured. Meanwhile the majority of patients would continue to be treated locally at Genesis Care, and complex cases would go to a specialist centre.
Jen thanked us for attending the AGMs and said she would be asking for reps to attend the IVs (Internal Validations) that need to be completed by the end of June. She also requested donations of any wedding items that can be used when weddings take place at the hospital for very ill patients.
Item #5- External Updates
Chris said that Tina Churchill was unable to attend the meeting. The Bertie Bus will be returning to MK in July, 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 the committee was grappling with GDPR to get everything in place by the meeting on 1st May. They get new members each month. She and Jaff would be attending the Breast AGM on 27th April. The May meeting is Acupuncture by Gabi from Genesis.
For more information see website – http://bosompals-miltonkeynes.btck.co.uk
7th June Sharon Kinge, Age UK
2nd Aug Erika, Lymphoma Assn.
See Facebook page for more details of meetings – https://www.facebook.com/groups/MKSuperMoles/
**MK Prostate Cancer Support
David said that he would provide details of the PSA testing day to be held in October.
He said he had met with the medical students arranged by Jane Wale to share his cancer experience and had thoroughly enjoyed it.
He indicated that although the prostate group was well attended there were few active members. Unfortunately this is a problem in many groups.
**Head and Neck
Sally said that the Head and Neck Cancer Support Group would now be meeting in the Swan Revived Hotel in Newport Pagnell on the second Wednesday of the month. Sophie Austin, dietician, will be one of their speakers and also Sophie Boyle, a speech therapist.
She also proudly told us that her daughter Esther had completed her London Marathon run in 6hours 20minutes and raised the amazing sum of £3000+ for the National Laryngectomy Patient Group
We send her our congratulations, very well done.
** Hanslope & District Cancer Wellbeing & Support Group
Andrea said that at a combined meeting with the Carers group, they were having a presentation from Amanda Maguire, the End of Life ANP.
Jean said that they had produced a New Strategy and they encourage everyone to join up and have their say in local healthcare.
Kate reported that Willen had had medical students gaining experience in all departments at the Hospice for over a month. She welcomed the link with the new hospital Wellbeing team and said it will benefit both patients and staff. She said that the breast/lymphoedema programme was continuing to work well and the walking groups lead by Nicky were also working well.
Jaff – we need to arrange more for 2018, when everyone is DBS checked.
*Cancer and Beyond
Vanessa said that the next support meeting hosted by MK College would be on 7th June but the format would be changed to having small tables to encourage group discussion before and after the speaker.
Suze said that the Asplands surgery was interested and also one in Stony Stratford, both practice managers would be invited on 7th June.
**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, 24th,May, 21st June, 19th July, 16th August, 20th September, 18th October,15th November. It is hoped that two sessions for teenagers will be arranged.
**Volunteering matter Driving Scheme
Heather introduced herself and said she had been working in health related jobs with older vulnerable people for 15 years. She was now developing the driving scheme locally, funded by MK Council. It provides transport from a patient’s home to a huge variety of appointments and can wait for two hours and then take them home, anything longer can be arranged for a later pick up. There are 10 drivers in MK who are more than just a driver, they care and are rated highly by patients and GPs. Journeys can be booked and then coordinated by staff in MK. They usually require three days’ notice but are frequently flexible. It costs £15 per year to join the scheme and then 45p per mile for the journey.
Discussion followed about other local schemes and what happens when funding runs out. But generally the scheme was applauded and it is hoped that it will continue.
**Lisa Robson explained her new business, Loved Forever, which helps people compile lasting memory items, albums, etc. from deceased loved ones, for families to keep. She intends to contact Willen and also the EOL team at MKUH to see if the service is of interest to their patients and families.
**Amanda End of Life ANP
Amanda left leaflets about the day course she would be running during Dying Matters week, all welcome.
Item #6 – AOB
**Courtyard gardens, Jaff said Santander were coming in with a team to give the larger garden a makeover in preparation for the fund raising launch. Help with the gardens is always welcomed.
**The meeting closed at two minutes early at 13.58 hrs