January 2018 – Wednesday 10th
Eaglestone Function Room 11.30 – 2.00
Sally Burnie, Head of Cancer Services
Jaff Newton, MKCPP Secretary, User rep, Breast
Angela Sheldrick, Breast re-design Project Manager
Suzan St Maur, MKCPP Chair, User rep, Breast, Bladder, Carer
Amanda Naylor, H&N ANP
Jean Mattinsley, User rep – Carer, Healthwatch rep
Vanessa Freeman Gwynn, User rep, Carer
Geoff Saunders, User rep, Lymphoma – REMAP
Barbara Saunders, User Rep, Lymphoma
Linda Wilson, User rep, Breast
Revd. Sarah Crane, Team Chaplain
Steph McPherson, User rep, Breast & Ovarian
Ray McPherson, User rep, Carer
Andrea Kingston, GP retired – Hanslope & District Cancer Wellbeing & Support Group
Jasmin Schulz PhD, Cancer 100,000 Genomes Project Manager
David Buckley, MK Cancer Prostate Support
Maria Buckley, MKPCS Secretary
Susan Ollier, Observer – Breast
Sue Fitzgerald, Gynae ANP
Michaela Tait, Patient Experience Manager
Sam Timmins, Macmillan Cancer Information & Support Manager
Martin Bell, User rep prostate group
Christine Cowap, Macmillan Engagement Co-ordinator for MK and Bucks
Sam Younan, User rep, Chair Prostate group
Rose Coppard, User rep, Lower GI & volunteer – Mac Unit
Jen Davies, Cancer Manager
Elizabeth Bradley, User rep, Breast
Claire Crick, User rep, Breast
Graham Anderson, User rep
Carol Hewett, User rep, Upper GI
Bob Gould, Red House PPG Observer
Vanda Gould, Red House PPG
Trevor Hutson, User rep, Laryngeal cancer patient
Sally Hutson, User rep, Carer
Paul Maclean, CRUK Volunteer
Sally Leverett, Willen Hospice
Kim Weston, Bereavement Officer
Shaeen Dalvi, Macmillan Partnership Lead for Bucks and MK
Jane Douglas, Macmillan Mobile Information Lead
Alan Hastings, Chair, PPG Whaddon Medical Centre
Gail Spooner, User rep, Breast, Lead LGFB
John Sorrell, GP retired – Hanslope & District Cancer Wellbeing &Support Group
Carly Polti, Lymphoedema nurse – Willen
Kate Iseton, Lymphoedema nurse – Willen
Future dates for your diary: please note the different times.
Mar Tue 13th – 12:00 – 14:30 – Eaglestone Function Room
May Wed 9th – 11.30 – 14:00 – Eaglestone Function Room
July Tue 11th – 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 speaker Jasmin Schulz
These were noted.
Amendments – spelling Yojnan to Younan, Item #5 Tracy Wothers not Watters, Item #7 MK Cancer Prostate Support not Prostate MK-PCS
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 speaker Jasmin Schulz PhD – 100,000 Genomes Project Manager
** Suze introduced Jasmin, from Oxford. She gave a fascinating and enlightening presentation about the 100,000 Genomes Project. This was followed by a lengthy question, answer and discussion session
Leaflets were distributed.
Item #4 – MKUH – Sally/Jen
Sally was unable to stay for the whole meeting so she will give an update at the March meeting.
Item #5- External Updates
No representatives present.
Linda said there was no meeting in January but we were looking forward to an evening of Zumba in February. The AGM is planned for March and a talk from CAB in April.
For more information see website – http://bosompals-miltonkeynes.btck.co.uk
Geoff reminded everyone that the Lymphoma Support Group was strong and growing as they approach their 10th anniversary in January.
1st Feb Jeanette Skipsey MIND BLMK
1st Mar Suzanne Furness Co op Estate Planning
5th April Sue Peacock Psychologist
3rd May Emma & Jules The Laughter Life
7th Jun 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 reported that the Christmas party had been a success and was well attended. The group received a Certificate of Excellence for the work they are doing. They have a programme arranged for the rest of the year details can be found on their website.
They plan to hold another free PSA testing morning in October; the venue and date are still to be finalised.
Their website has been updated and looks very professional.
Over 25 people attended their AGM where a saxophonist played while they enjoyed wine and cheese.
Maria their secretary is retiring due to ill health. She has been a frequent attender at MKCPP meetings and we wish her well.
Another initiative is to collect the stories from patients and their carers about their cancer experience and put them on the website. These can be very powerful and a ray of hope to others.
**Head and Neck
Amanda said that with help of The Swallows Head and Neck Cancer Support Group (a nationwide Head and Neck Cancer Support Charity based in Blackpool) she is holding an initial meeting in Milton Keynes for Patients and Carers with experience of a H&N cancer. It will take place at the Mercure Hotel, Abbey Hill, on 14th February from 7pm- 9pm.
We wish them every success.
Jean said that the Healthwatch event will not go ahead this year, because it made a loss in 2017.
**Macmillan Unit – Health and Wellbeing Patient Support.
Sam will up-date at the March meeting.
Jaff – we need to arrange more for 2018, any suggestions welcome.
*Cancer and Beyond
Addendum – a joint meeting of the WMC and the Red House has been arranged for March 8th, 2018, 5.30 – 7.00pm in Milton Keynes College, Bletchley – Spring into Action talks.
**Cancer Patient Feedback- DBS checks
Jaff – Miranda will be available before the next meeting on 13th March so further volunteers can be processed. Bring your passport, driving licence or similar photo ID, and a utility bill.
Action – contact Jaff before the next meeting.
**Website – www.mkcpp.org
See Chair’s report
The dates for this year are 15th March,19th April,17th May, 21st June, 19th July, 16th August, 20th September, 18th October,15th November.
Item #6 – AOB
**GDPR – the new data protection laws will go live on May 25th this year and are likely to affect all of our groups/small charities which hold data – even names and email addresses only – of members and particularly donors. We hope to have a GDPR expert available to talk to us at the March meeting and tell us what we need to do. Please be sure to attend. if this applies to your group.
**The meeting closed at 14.30 hrs
Date of next meeting March Tue 13th – 12:00 – 14:30 – Eaglestone Function Room. Refreshments from 11.30 for patient reps catch-up.