Milton Keynes Cancer Patient Partnership
Wednesday 8th May 2016, 12:30 – 2.30
BICS Training Room, Oak House
Dawn Allen User rep, Carer, Paediatric, The Henry Allen Trust
Carol Hewett User rep, Upper GI
Claire Crick User rep, Breast
Jaff Newton MKCPP Secretary, User rep, Breast
Jean Mattinsley User rep – Healthwatch rep, Carer
Jeannie Righton User rep, Lung
Jen Davies Cancer Manager
Rose Coppard User rep, Lower GI
Sarah Crane Revd. Team Chaplain
Gail Spooner User rep, Breast, Lead LG,FB
Lorraine Mir User rep, Skin
Richard Freeman User rep, Upper GI, Haematological
Sally Burnie Head of Cancer Services
Louise Forster CRUK, Health Professional Engagement Facilitator (TV Bucks & MK)
Martin Bell User rep, Chair Prostate group
Suzan St Maur MKCPP Chair, User rep, Breast, Bladder, Carer
Vicky Lawford Macmillan
Kim Bowles Macmillan Development Manager
David Buckley User rep, Prostate
Angela Sheldrick Breast re-design Project Manager
Bronwen Webster User rep, Head & Neck
Elizabeth Bradley User rep, Breast
Deb James User rep, Lower GI
Jenny Abbot User rep, Breast
Sam Timmins Macmillan Cancer Information & Support Manager
Kim Weston Bereavement Officer
Sabina Dawson User rep, Carer
Steffi Lewis User rep, Head & Neck
Sue Fitzgerald Gynae ANP
Jeanette Wells Gynae ANP
Future dates for your diary:
July 2016 – Tuesday 12th
September 2016 – Wednesday 14th
November 2016 – Tuesday 8th
2016 NEW TIME 12.30 – 2.30 All being held in the BICS TRAINING ROOM, OAK HOUSE
Item #1 – Welcome
Suze welcomed everyone, especially our guests Louise, Martin and Vicky. There was a round-robin introduction.
These were noted.
These were agreed and signed by the Chair.
Item #2 – MKUHFT, Jen and Sally
Jen said that the External Peer Review of CUP, (Cancer of Unknown Primary) would take place on 18th May. All the Internal Validations have now been arranged.
Sally said that the new staff were making 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 for UGI. Also just recruited was Irfan Molvi, an MDT Co-ordinator
National Cancer Patient Experience Survey – the results are now expected at the end of June/July, ready for the next meeting. The response from patients had been good.
New Cancer Therapy Centre – Sally said it was continuing to progress well and that the Strategic Outline Business Plan was being prepared to send to Monitor. More patent involvement would be sought for the next stage.
Radiotherapy – was proving to be more problematic, the NHS England survey has still not been published. It is envisaged that it will be a separate building with a shared reception and staff facilities. Meanwhile the RT contract with the Linford Wood has been extended so patients can have the treatment they require.
Patient Journal – Sally said that monthly meetings are going to be restarted and that the Patient Experience team had requested to attend the meetings. The Cancer Steering Group had also asked for an update on the actions will be set in place.
Jen left the meeting
Item #3 – Guest speaker
Louise Foster – Health Professional Engagement Facilitator Thames Valley (Buckinghamshire and Milton Keynes) at Cancer Research UK
Louise gave us some background history and then told us about the project she is conducting. It involves working with GPs across the Thames Valley to audit late diagnosis resulting in an emergency admission; the number of visits made by the patient; and why it all took so long. Nine practices in MK took part, detailing why there was a problem and how it could be improved upon. Sometimes it seemed to be “bad luck” but it also led to insight as to what could be done differently, they said they appreciated the time given enabling them to reflect. The report will be brought to this group to share the learning from the audit. Just an A4 summary with examples of good practice will go back to the GPs.
Suze – asked if late diagnostics were often a problem for prostate cancer patients.
Martin – suggested that men just left it too late before seeking help, and that also lung, bowel and pancreatic cancers were often diagnosed in A&E.
He also said that some GPs do not always take symptoms seriously and are not sure when to use the two week wait, urgent referral form.
Sally said that there was clear NICE Guidance in addition to the referral forms, but that they are often used unnecessarily which crowded the system.
Dawn said that children were not sent by GPs for diagnostic tests and that they were not always aware of children’s cancers. She said she intended to bring this to the Trust’s attention.
Sally said that Dr Mia had modified the two week wait referral form for children with a suspected cancer.
Louise said that this was not supported by CRUK although donations to CRUK could be made for a specific area.
A lot of interested discussion followed around raising awareness, screening and the problems of an ageing population with co-morbidities that could mask a cancer; targeting hard-to-reach groups; and how a group like MKCPP could raise awareness.
Suze thanked Louise for her presentation and said we looked forward to a return visit.
Louise, Sally and Lorraine left the meeting.
Item #4 – Kate and Carly, lymphaedema nurses from Willen Hospice
They said they had recently been working with the Breast Team and had attended a GP Masterclass evening event, arranged by the MacMillan funded GP Nina Bursell, where they talked about the Lymphodema service and the increased numbers requiring the service and how early intervention can help to manage the condition.
Item #5 – Working groups
**Cancer & Beyond
Richard reminded us that patients often had very serious concerns after being discharged from active treatment and felt very much alone. At the Whaddon Medical Centre, 350 surveys were sent to cancer patients asking them to say what help they most needed. While waiting for them to be returned Richard had contacted Macmillan, and two local charities, “Smile” and “Work for Us,” who were very receptive. He said two other surgeries were also interested and that when he had more details he would bring them to the group.
**Should we become a charity?
Suze put forward the case for joining. She reminded the meeting that the MKCPP’s current structure consists of:
- Patients and carers as core members
- …working in partnership with the clinical/medical professional members
- …along with support members e.g. support group representatives, cancer charity representatives, research professionals, spiritual/religious professionals, local PPG representatives, etc.
Sally said she saw it as a positive move bring more awareness to GPs and have an identity outside of the hospital.
Linda said it could bring another layer of officialdom.
Dawn said that in her experience of the Henry Allan Charity it changed from a campaign group to a more professional group that opened more doors and gave stability to the group.
Vikki suggested that we advertise for trustees, and that they became more of a
management / steering group with objectives and long term plans.
Jean said there would be a need for clear communication so that it did not become two groups and must be a joint wish. She also saw us having more community involvement.
Suze said that we were at the point of extending beyond the hospital and therefore there would be more of a need to become a recognisable entity which the MKCPP currently is not. By becoming a charity the MKCPP will be more easily identifiable to the “outside world” and would be taken more seriously at higher levels.
Jean thought the group would need to be larger in order to cope with more projects.
Suze asked that we should consider the pros and cons so that a decision could be made at the July meeting.
Action – Suze to draft the Pros and Cons.
**Cancer Resources Directory
Suze is monitoring and updating the online version as each change / addition arises. Check it out here – http://mkcpp.org/mk-cancer-resources-directory and please let Suze know if you notice anything that needs changing or updating.
Jaff said that the garden was in need of more volunteers to help keep the weeds at bay.
**Website – www.mkcpp.org
Suze continues to monitor and update. If anyone else among the core members wants to learn how to use, update and add to the website, Suze will show you how to do it.
Jaff said that the audits for Skin and Gynae Clinics were arranged for May and June.
Gail said that she had visited Milton Keynes College and spoken to the students on the Beauty Course but that they were not very responsive. She had also visited the Saxon Clinic and talked to 25 ladies who had sadly not been told about the LGFB service. She said the current breast care nurse at the Saxon Clinic would be leaving to work at the Linford Wood Medical Centre.
She said that all the sessions were fully booked up until October, and that two extra sessions would be held in June to cope with the demand.
**Information / Literature / Leaflets
We assume Sabina will continue to monitor and update although she was not present at the meeting to confirm this.
Item #6 – Support Groups and other updates
Linda said that The Community Kiosk in MK Centre had been removed by the “uncaring, short sighted management,” which meant that it was no longer a source of fund raising but also the opportunity to raise awareness. 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 once the Urology professionals team are able to provide a little more support.
Are 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
Next meetings – 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: http://lymphomas.org.uk/information-and-support/lymphoma-support-groups/milton-keynes
Martin said that their programme for 2017 had already been arranged. For more information see website – http://prostatemk.org
**MK Supermoles – Skin Cancer Support group
Next meeting Saturday 16 July 11-1pm st Marys church hall , Church Green Road Bletchley.
The meeting closed late at 14.40hrs.
Date of next MKCPP meeting
July Tue 12th
TIME: 12.30 – 2.30
VENUE: BICS TRAINING ROOM, OAK HOUSE
Patient representatives to meet at 12.00 for refreshments and catch-up.