Milton Keynes Cancer Patient Partnership
Wednesday 14th Sept 2016, 12:30 – 2.30
BICS Training Room, Oak House
Carol Hewett User rep, Upper GI
Martin Bell User rep, Chair Prostate group
Sally Burnie Head of Cancer Services
Claire Crick User rep, Breast
Kate Iseton Lymphodema nurse – Willen
Andrea Kingston GP retired – Hanslope & District Cancer Wellbeing & Support Group
Vicky Lawford Macmillan
Jaff Newton MKCPP Secretary, User rep, Breast
Paul Maclean Observer – CRUK Volunteer
Cherrie Masvaure Oncology Research Nurse
Jean Mattinsley User rep – Carer, Healthwatch rep
Carly Polti Lymphodema nurse – Willen
Jeannie Righton User rep, Lung
Jen Davies Cancer Manager
Rose Coppard User rep, Lower GI
Revd. Sarah Crane Team Chaplain
Sabina Dawson User rep, Carer
Margo Livingston Oncology Research Nurse
Geoff Saunders Observer – REMAP
John Sorrell GP retired – Hanslope & District Cancer Wellbeing &Support Group
Suzan St Maur MKCPP Chair, User rep, Breast, Bladder, Carer
Dawn Allen User rep, Carer, Paediatric, The Henry Allen Trust
Kim Bowles Macmillan Development Manager
Elizabeth Bradley User rep, Breast
David Buckley User rep, Prostate
Gail Spooner User rep, Breast, Lead LGFB
Richard Freeman User rep, Upper GI, Haematological
Bronwen Webster User rep, Head & Neck
Deb James User rep, Lower GI
Jenny Abbot User rep, Breast
Sally Leverett Willen
Lorraine Mir User rep, Skin
Angela Sheldrick Breast re-design Project Manager
Sam Timmins Macmillan Cancer Information & Support Manager
Jeanette Wells Gynae ANP
Kim Weston Bereavement Officer
Sue Fitzgerald Gynae ANP
Future dates for your diary:
November 2016 – Tuesday 8th
January 2017 – Wednesday 14th
TIME 12.30 – 2.30 All being held in the BICS TRAINING ROOM, OAK HOUSE
Item #1 – Welcome
**Suze welcomed everyone, especially our guest speakers Margo and Cherrie, and four observers Paul, Andrea, John and Geoff. There was a round-robin introduction later. Item #4
These were noted.
These were agreed and signed by the Chair.
Item #2 – MKUH – Sally & Jen
** Patient Experience
Sally said she had received the results of the National Cancer Patient Experience Survey and there was a huge improvement on the previous survey. There were 4-5 community standards that were not met and these have been picked up with the CCG.
It highlighted there were not enough nurses, however, it was felt that this relates to not understanding the title key worker as another response was above the national target saying that nurses had been accessible.
The information team is now in the process of pulling data for validation for next year’s survey.
The “patient comments” are not yet in but will be shared with the group when they are.
The Patient Experience Manager, Michaela Finnegan is hoping to make a video of patients telling their experience of the service, good and bad, so that they can be used in staff training.
Action – let Jaff know if you would like to be part of the video and share a positive story.
** The Patient Journal is to continue and will be relaunched to highlight more awareness.
The “Friends and Family” survey has been changed to Picker (a company that organised and runs surveys) aiming to change and improve the response rate and the way the surveys are collected recorded.
** New two week wait referrals, these have been rolled out to GPs to help identify patients who need to be fast tracked to see a consultant but also to organise straight to a diagnostic test such as an MRI for prostate patients. Help is being given to GPs to understand the forms and make the pathways more streamlined by the hospital team.
** CQC revisited the hospital, in particular to look at the improvements that had been made in End of Life Care. Lots of work and staff training has gone into careful communication with families and friends, and more resources to help patients die where they choose.
** Cancer Therapy Building, Sally was pleased to say that the plans were back on track, so watch this space. A Radiotherapy Unit was also looking very positive but that would be a separate building.
** CUP Peer Review
A very positive report has just been published showing the service in a very favourable light, including an ‘inspirational’ patient partnership team.
All Internal validations completed and the Annual Review AGMs will take place between January and March 2017
The Cancer team have moved to a new Portacabin near ward 16.
Amanda Salt is the new CNS in Palliative care
Natalie Cook has replaced Kim Martin
Debbie Orange has made a very welcome return to the admin team.
Item #3 – Guest speakers Margo Livingston and Cherrie Masvaure, MKUH Research
**Cherrie led their enthusiastic presentation explaining that she and Margo were part of the Research and Development at MKUH and their team was known as the Cancer Research Team (CHORT) funded by the NIHR and The Department of Health. She then explained the importance of clinical trials, the various stages of the process, the benefits to patients and the shaping of future treatments.
**Margo continued by saying that taking part in a clinical trial could give access to drugs not currently available. The current trials at MKUH are in Breast, Haematology, GI, Urology and Lung and the number of patients taking part has risen. The team has been recognised nationally for their high recruitment in a small District General Hospital.
She encouraged us to spread the word about trials and taking part and said it was important for GPs, Consultants and Nurses to pass on knowledge of trials and the benefits for patients.
Action – Margo said that she would make their presentation slides available. Jaff to distribute.
Item #4 – Round-robin
Members briefly introduced themselves and then Suze invited the observers present if they would like to do the same.
**Paul said he was a cancer survivor and long-time resident of MK and was interested in getting involved with the group. Since he was cleared of cancer in 2012 he has been involved with Macmillan and CRUK on a national basis on all manner of projects and activities and would now like to supplement those by doing something useful on a local basis.
**John said he was a kidney cancer patient but also a retired GP in Hanslope. He said that patients in that area were caught in a no-mans-land between Milton Keynes and Northampton so he helped to set up the Hanslope and District Cancer Wellbeing and Support Group. They meet monthly on the third Monday at 8pm, in St James Church Hanslope Coffee Area, to offer emotional support and signposting to those affected by cancer and families and friends.
** Andrea said she was also a retired GP from Hanslope and was instrumental in setting up the group with John.
**Geoff, a Lymphoma patient, said he was attending the meeting today before he gives a presentation about his work with REMAP at the November meeting.
Item #5 – Kate Iseton – Lymphodema nurse at Willen
**Kate gave a brief update on the service saying that it had been relatively quiet over the summer period but that their numbers were on the increase. She said that she and Carly had attended the HOPE course and also the Breast and Lymphodema Study Day.
She was very excited about a new piece of equipment developed in Australia and is used to take measurements pre and post-operatively to determine the likelihood of lymphoedema developing, so that compression garments could be used in a more timely fashion.
Item #6 Working groups
**Cancer & Beyond
Suze said planning was continuing and more information would be available at the November meeting. Angela has given presentations to the Patient Congress and to GPs so the word is spreading.
Addendum Richard sent this information because he was unable to attend the meeting. “Having sent out 300-400 surveys to cancer suffers at their practice, Whaddon Medical Centre had over 100 responses, which is a strong indicator that there is unmet need. The response Information has been put on a spread sheet, and we have been given copies of the responses, but without names. I had a meeting with Toni the Practice Manager on Monday, and she will be sitting down with their GPs to discuss what they’ve learnt from the survey, and how MKCPP and its partners can help take this forward with them. So, next steps: The MKCPP Steering Group meets Friday October 16th at the Whaddon Medical Centre collectively (to include our partners) to put together some solutions. The project is still at the pilot stage”
**Cancer Resources Directory
Suze continues to monitor and update the online version as each change / addition arises.
Addendum – funding for a reprint has been kindly made available from the Cancer Charitable Fund.
Jaff said that she had arranged a gardening afternoon with two volunteers from the Christian group who helped before. She is also being put in touch with another volunteer who works on another garden.
**Website – www.mkcpp.org
Suze continues to monitor and update. The offer still stands from Suze if members wants to learn how to use, update and add to the website.
Jaff said that the audits for the Skin and Gynae Clinics had been completed and that Action Plans were being formulated.
Jaff said the next LGFB was on 15th September and the extra one on 20th September. The last one for the year is 17th November.
**Information / Literature / Leaflets
The two Macmillan Unit volunteers continue to replenish all stands each Thursday and Sabina continues to do spot checks.
Item #7 – Support Groups and other updates
Jaff – The group will have a stall at the Healthwatch event on 6th October. 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.
No update to report.
**Health and Wellbeing Patient Support
The Health and Wellbeing Patient Support Group is held on the first Thursday of every month, from 10am to 12noon in the Eaglestone Restaurant at the hospital. Refreshments are available and the meetings usually comprise a relevant talk and time to share experiences. This is aimed at patients who are nearing the end of treatment or who have completed treatment. The purpose of the group is to provide support to those living with and beyond cancer. This group is widely advertised and accessible via self-referral or referral via nursing and medical staff in cancer services.
**Lymphoma support Next meetings – 6th October, 3rd 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
**Prostate Group MK-PCS
Martin said all their meetings for 2017 were planned.
He then went on to say that the Freemasons were providing funding for PSA testing to be carried out in Lodges. It is aimed at Freemasons plus a friend.
The first one to be held is on Sunday 23rd `October from 10.30 – 13.30 in the Masonic hall Queensway, Bletchley MK2 2BZ. The Graham Fulford Trust have been raising funds and they have been supported by the Aylesbury group Tackle and the MK Community Foundation. The group are also giving presentations about awareness to Bucks Golf Clubs and Rotary Groups.
Suze suggested that the Chamber of Commerce and Fire Stations might also be interested.
For more information see website – http://prostatemk.org
**MK Supermoles – Skin Cancer Support group
Next meeting is due in November – TBC by Lorraine. Addendum: many congratulations to Lorraine on her marriage to Stephen on October 9th!
Vicki said that there were several changes taking place and that included her role. She will now be managing engagement and co-ordination in South East England. She wants to continue to be involved and will keep us posted about the next round of of grant funding.
Item #8 – Miscellaneous
**Get Going Insurance
Jaff said this may be worth trying for individual trips because it covers cancer patients and is relatively inexpensive.
**Healthwatch Event 6th October
Jaff said help on the stand would be very welcome 8.30 – 4.00.
The meeting closed late at 14.35hrs.
Date of next meeting: Tuesday 8th November 2016 –
TIME: 12.30 – 2.30
VENUE: BICS TRAINING ROOM, OAK HOUSE
Patient representatives to meet at 12.00 for refreshments and catch-up.