Milton Keynes Cancer Patient Partnership
Tuesday 8th Nov 2016, 12:30 – 2.30
BICS Training Room, Oak House
Graham Anderson User rep, Prostate
Carol Hewett User rep, Upper GI
Elizabeth Bradley User rep, Breast
David Buckley User rep, Prostate
Chris Ford Clinical Trials Administrator (CHORT)
Tony Kelly Volunteer – Mac Unit and Community Car Scheme
Laura Jeffery MK Community Action – Community Car Scheme
Andrea Kingston GP retired – Hanslope & District Cancer Wellbeing & Support Group
Jaff Newton MKCPP Secretary, User rep, Breast
Paul Maclean CRUK Volunteer
Nicki McKinnon Palliative Care Physiotherapist, Willen
Jean Mattinsley User rep – Carer, Healthwatch rep
Jen Davies Cancer Manager
Rose Coppard User rep, Lower GI
Revd. Sarah Crane Team Chaplain
Sabina Dawson User rep, Carer
Geoff Saunders User rep, Lymphoma – REMAP
Angela Sheldrick Breast re-design Project Manager
John Sorrell GP retired – Hanslope & District Cancer Wellbeing &Support Group
Gail Spooner User rep, Breast, Lead LGFB
Suzan St Maur MKCPP Chair, User rep, Breast, Bladder, Carer
Linda Wilson User rep, Breast
Dawn Allen User rep, Carer, Paediatric, The Henry Allen Trust
Martin Bell User rep, Chair Prostate group
Sally Burnie Head of Cancer Services
Claire Crick User rep, Breast
Kate Iseton Lymphodema nurse – Willen
Richard Freeman User rep, Upper GI, Haematological
Alan Hastings Chair, PPG Whaddon Medical Centre
Vicky Lawford Macmillan
Carly Polti Lymphodema nurse – Willen
Jeannie Righton User rep, Lung
Steph McPherson User rep, Breast & Ovarian
Ray McPherson User rep, Carer
Bronwen Webster User rep, Head & Neck
Deb James User rep, Lower GI
Jenny Abbot User rep, Breast
Sally Leverett Willen
Sam Timmins Macmillan Cancer Information & Support Manager
Jeanette Wells Gynae ANP
Kim Weston Bereavement Officer
Sue Fitzgerald Gynae ANP
Graham Youngman Asplands PPG, User rep
Future dates for your diary:
January 2017 – Wednesday 11th Eaglestone Restaurant Function Room 11.30 – 2.00
March Tuesday 14th – BICS Training Room, Oak House 12.30 – 2.30
May Wednesday 10th – BICS Training Room, Oak House 12.30 – 2.30
July Tuesday 11th – BICSTraining Room, Oak House 12.30 – 2.30
September Wednesday 13th – Eaglestone Restaurant Function Room 11.30 – 2.00
November Tuesday 14th – BICS Training Room, Oak House 12.30 – 2.30
Item #1 – Welcome
**Suze welcomed everyone, especially our guest speakers Nicki, Geoff, Tony, Laura and observer Chris. There was a round-robin introduction later. (Item #4)
These were noted.
These were agreed and signed by the Chair.
Item #2 – Suze
**Suze congratulated MKCPP on winning the MKUH Staff Award for Volunteer of 2016 and also Sarah for winning the Staff Award for Excellence. Suze, Gail and Jaff had gone to the well- attended Award Event at the Kents Hill Hilton and were really surprised and delighted to be chosen. All the winners received an engraved plaque, certificate and hamper to share. The certificate will be placed in the Macmillan Unit and Jaff will bring the plaque to meetings and events. Well done everyone.
Item #3 – MKUH – Jen
**Cancer Therapy Building, Jen was pleased to say that a business case and plans have been drawn up for a two storey building, to house a chemo suite and consultation rooms on the ground floor with a large support and information area and a haematology/cancer ward on the first floor plus assessment rooms and staff offices. There will be a link bridge for easy access into the main hospital. There will be a parking/drop off area and a new multi-storey carpark. The whole area will be landscaped.
Oxford UH are meeting with MKUH for a separate but adjacent Radiotherapy Unit, so we will have the majority of our cancer treatment on site by 2019.
**The Patient Journal is to continue and will be revisited in January 2017 to see how we can improve its effectiveness.
**Annual Review AGMs will take place between January and March 2017
Item #3 – Guest speaker Nicki McKinnon
**Nicki, the physiotherapist from Willen, gave an enthusiastic presentation on the value of exercise for palliative patients. She gave a brief history of her background and the Hospice Movement. She went on to say that Willen had been successful in being awarded funding for a Rehabilitative Palliative Care Project to enable people to live fully until they die. Willen has a Wellbeing centre and Nicki has a small exercise room but there is not enough space, so the Woughton Leisure Centre was chosen to host the project in their gym on a Monday each week with a physio/occupational therapist leading the sessions. 15 – 20 patients can attend for an 8 – 12 week structured, flexible course until exercise becomes a habit. Every patient is holistically assessed and closely monitored’
Suze asked if Nicki would let us have her presentation to put on the MKCPP website.
Guest speaker Geoff Saunders REMAP
**Geoff gave us a fascinating presentation on his involvement with REMAP and its amazing service with 90 branches throughout the UK but with one on our doorstep in Milton Keynes. It all started in 1964 when Pat Johnson set up a group of volunteer engineers mainly from ICI on Teesside, when it was called Basic Movement Advisory Panels(BMAP). Pat recognized the need for aids for the disabled after making several for his sister who had polio. The MK branch meets once a month to come up with ideas on how to solve problems for the disabled that will make life changing difference. Geoff gave lots of amazing examples and finished by saying
“Real Engineers Make All things Possible”
Item #4 – Round-robin
Members briefly introduced themselves and then Suze invited the observers present to do the same.
**Laura from Community Action MK said she was here with Tony and Laura to talk about the Community Car transport service for patients who struggle to use public transport to get to hospital appointments, meetings and lunch clubs etc. There is an annual £15 membership and a reasonable cost for each use. The service is reliable, using volunteer drivers, and can be requested between 9.30 and 12.30 each day. GPs have information about the service but it is not well publicised.
**Suze said this could be added to the MKCPP website
**Tony said that in addition to the transport service he was also a volunteer in the Macmillan Unit and that each Thursday afternoon he looked after the leaflet stands, restocking where necessary.
**Suze said that Sabina and Richard had originally organized this work and established the needs of each clinic area so that the most appropriate leaflets were available. Sabina was still monitoring this on a regular basis but was unaware that Tony was also doing it too. It was suggested that there was still a need for a leaflet stand in the downstairs Ambulatory Unit Information Point. Suze pointed out that seems to be a lot of unnecessary duplication going on with this and that Sam should meet with all volunteers to streamline its activities.
**Chris said that as well as being a patient he was also the Administrator in the Research Department working closely with the team. He said there were three new studies, one leukaemia, one a commercial research project and one other.
Item #5 – Working groups
**Living With And Beyond Cancer
**Angela said that in 2017 this initiative – originally focused on breast cancer – will be extended to all cancers. She spoke briefly about what is available after treatment. Look Good Feel Better has welcomed 200 ladies in its first year in MK. The Singing Group with 20 members meets once a month and are going to perform at the Breast Education Day. The Macmillan 6 week HOPE course that has had excellent feedback from participants. The final initiative is the Breast Educational Day with a great line up of interesting speakers and stands for this sold out event.
**Cancer Resources Directory
Suze continues to monitor and update the online version as each change / addition arises.
Funding for a reprint has been kindly made available from the Cancer Charitable Fund.
Angela passed round the Bedfordshire Resources Directory.
Jaff said that it was looking good after the tidy up with still plenty of colour.
**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 an audit of Ward 22 was to be planned for 2017.
Jaff said the first LGFB in 2017 will be on the third Thursday in January.
**Information / Literature / Leaflets
As mentioned in Item #4 above, there needs to be more communication amongst various volunteers. Sam to co-ordinate please.
Item #6 – Support Groups and other updates
Jaff – Professor Eldeeb gave an excellent presentation on oncology, 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 in 2017.
No update to report.
**Health and Wellbeing Patient Support
No new members recently, hoping to have a larger well being programme in 2017.
**Lymphoma support 2017 meetings –
- 2 February – Guest speakers from MK council, ‘Making every contact count’
- 2 March – Guest speaker – Wills, advice and financial planning
- 6 April
- 4 May
- 8 June
- 6 July
- 3 August
- 7 September
- 5 October
- 2 November
- December – no meeting – social festive meal at alternate location
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
David said all their meetings for 2017 were planned. The first is on 25th January, 11.00am at the medical Detection Dogs Charity a joint event with the Bedford group.
He reported that 73 men attended the PSA testing day on Sunday 23rd October, 68 were green (clear results), 1 was amber and 3 were red (positive) so it was very worthwhile and will be repeated in 2017.
For more information see website – http://prostatemk.org
**MK Supermoles – Skin Cancer Support group
Next meeting is due in December 2016– TBC by Lorraine.
**Willen support group
Jean said that although the group was not meeting they were being asked to review leaflets, the latest being on Opiates.
Item #7 – Miscellaneous
**Suze had met Dr Macmillan and some of the team from the Linford Wood Medical Centre at the 2016 Healthwatch event, and has invited them to join us and present at our January meeting.
**Jaff said that Stephanie Brayford from Breast Cancer care “Living with Secondary Breast cancer” would like to give a presentation in January.
**The meeting closed late at 14.3hrs but we stayed on to partake of crisps and Bucks Fizz to celebrate our Award.
**Date of next meeting: Wednesday 11th January 2017 –
TIME: 11.30 – 2.00
VENUE: Eaglestone Restaurat Function Room
Patient representatives to meet at 11.00 for refreshments and catch-up.