Tuesday 11th January 2017, 11:30 – 2.00
Eaglestone Function Room, MKUH
Carol Hewett User rep, Upper GI
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
Tony Kelly Volunteer – Mac Unit and Community Car Scheme
Laura Jeffery MK Community Action – Car Scheme
Andrea Kingston GP retired – Hanslope & District Cancer Wellbeing & Support Group
Jaff Newton MKCPP Secretary, User rep, Breast
Jeannie Righton User rep, Lung
Jean Mattinsley User rep – Carer, Healthwatch rep
Jen Davies Cancer Manager
Rose Coppard User rep, Lower GI
Revd. Sarah Crane Team Chaplain
Angela Sheldrick Breast re-design Project Manager
John Sorrell GP retired – Hanslope & District Cancer Wellbeing &Support Group
Suzan St Maur MKCPP Chair, User rep, Breast, Bladder, Carer
Linda Wilson User rep, Breast
Stephanie Brayford Breast Cancer Care
Craig Macmillan Oncologist, Linford Wood Medical Centre
Barbara Pearce Breast care nurse, Linford Wood Medical Centre
Kim Williamson Education, Linford Wood Medical Centre
Michelle Barnham Secondary Breast care nurse, ANP
Shaeen Dalvi Macmillan Parnership Lead for Busks and MK
Amanda Naylor Head & Neck ANP
Elizabeth Bradley User rep, Breast
Chris Ford Clinical Trials Administrator (CHORT)
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
Paul Maclean CRUK Volunteer
Sabina Dawson User rep, Carer
Geoff Saunders User rep, Lymphoma – REMAP
Steph McPherson User rep, Breast & Ovarian
Ray McPherson User rep, Carer
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
Christine Cowap MacMillan Community Engagement Lead for Bucks and MK
Gail Spooner User rep, Breast, Lead LGFB
Future dates for your diary:
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, Craig Macmillan, Barbara Pearce, Kim Williamson and Amanda Naylor. There was a round-robin introduction, see Item #3
These were noted.
These were agreed and signed by the Chair.
** Matters Arising
** Action Points
Item #2 – MKUH Sally & Jen
** Sally said that the Business Case for the Cancer Therapy Building had been approved by the hospital board so that now fund raising can go ahead. She said that the plans will soon be made available, but basically it was to be a two storey building with an information and support area on the ground floor, a Chemo area, consulting rooms, a meeting/activity room and offices. A haematology/cancer ward and an acute assessment room will be on the second floor with lift and stair access. There will also be a covered link into the Main Hospital.
Radiotherapy – the contract with the Genesis Medical Centre in Linford wood has been extended for three more years. Specialist cases are still referred to Oxford.
Oxford UH are continuing to meet with MKUH re: a separate but adjacent Radiotherapy Unit, so we will have the majority of our cancer treatment on site by 2019.
Sally said she was pleased to report that the “Hope” course, a Macmillan initiative, was going well and that there had been positive feedback from patients attending.
Patient Journal – this is to be reassessed, also having access to the wards and working more closely with the Patient Experience Team, managed by Michaela Tait.
Staffing – two new nurses with diagnostic capabilities have been appointed to the Breast team because they are so busy.
Because of the increased demand for chemotherapy there is a need for more staff there too.
MDTs are going to have a different tracking system so two band 5 staff have been employed to work on tracking patients who go to tertiary centres to ensure that their pathway is followed carefully and audited.
All targets were met in December.
** Jen said that the Annual Review AGMs will take place between February and March 2017
Action – Jen to liaise with Jaff to provide patient representatives to attend these.
** Suze asked Sally if MKUH was aligned to Thames Valley or East of England. At an October meeting with TV, MKUH was put with East of England. This has been challenged but so far there has been no response. It was also brought up at the CCG meeting when it was said that “on paper” we sit with East of England. This is all very worrying and confusing because Clinical Pathways may eventually have to change when all is made clear but at the moment Pathways stay as they are.
Jean asked if there is anything that Healthwatch can do? Sally said nothing at the moment while they are waiting for a response.
Item #3 – Round Robin
**Members briefly introduced themselves and then Suze invited the observers present to do the same.
Item #4 – Guest speaker Craig Macmillan – Oncologist
Craig told us that he was now working at Genesis Care a private facility owned by an Australian company. The MK branch is one of ten in the UK, based in Linford Wood East. It was originally only Radiotherapy but has expanded into diagnostics and chemotherapy, CT, mammography and has created a Living Well programme which is linked with Penny Brohn UK. He said a good proportion of Milton Keynes NHS patients were using the service since NGH was not an option and it is so much closer than Oxford. Private patients still have their surgery at the Saxon Clinic but oncology and follow-up is at the Linford Wood Medical Centre.
Suze asked if they would be interested the Resources Directory and would Genesis possibly sponsor the Directory. Craig said this was a matter for the Centre Manager Karen Pedley, so he would ask her.
Craig then introduced his colleagues Barbara Pearce, the breast care nurse who formally worked at the Saxon Clinic, and Kim Williamson, now responsible for education. They spoke briefly about their roles.
Craig thanked us for this invitation to the group and said he wanted to keep in contact.
** Suze welcomed Michelle Barnham the newly appointed secondary care ANP who joined the meeting during the lunch break of her Induction Course. We hope she will be a regular attendee at our meetings.
Item #4 – Other guests
** Steph Brayford – Breast cancer care service manager – Living with Secondary Breast Cancer. Steph told us that these groups were established in 2011 and there are now 25 ranging from Aberdeen to Dorset with new ones being set up.The Milton Keynes group started in May 2016, meeting once a month in Acorn House. The sessions are facilitated by a psychologist and alternate between 4hrs with a speaker, and 2hrs for a catch-up discussion with guided relaxation. The speakers cover side effects from treatment, pain control, fatigue, exercise, benefits and research trials etc.
Suze asked how the group differed from a general support group and Jaff explained that it was very patient centred around what the members chose to talk about, often relating personal experiences and how to cope, questions to ask consultants etc. Each person is given the time and space to talk in a really safe place. She also said the environment played a really important part, easy access, with stress-free car-parking, which unfortunately was not available at Acorn House so the group was struggling for numbers even though there is a need in the area.
Discussion followed with suggestions of suitable venues in the Milton Keynes area. Craig said that he was interested in this service for his patients.
Item #5 – Working groups
** Living With And Beyond Cancer
Angela spoke about the Macmillan MK Library initiative to spread more awareness
She also reminded us of the Whaddon Medical Centre pilot project that was planning its second support group meeting for cancer patients with speakers from Citizens Advice and the Macmillan Information support at MKUH.
She said she wanted to strengthen links with Genesis to reach even more patients, and to bring further awareness to the Singing group, the Hope course and Look Good Feel Better.
** Patient Journal
Suze reminded us how it first started, as response to feedback from a complaint and a (successful) attempt to address it satisfactorily. Two versions of the journal have been produced so far, but they have been too detailed so it is proposed to have a shorter one, more like a leaflet. The face to face sessions have produced some very good results, but we are still waiting to be DBS checked to enable us to go onto the wards. A meeting is planned in early March to address the problems and make the necessary changes. It is a good way to respond quickly to patients and relatives because the National Survey is lengthy and only once a year, and the “Friends and Family” is not always appropriate.
** Cancer Resources Directory
Suze said she has reached the stage where she will send it out for proof reading and corrections
John asked if the Hanslope group was in, and said he would pass on details to Suze.
** Courtyard garden
Jaff said that Richard had set up a meeting with Amy from BenchmarkMK. because they would like to come for a day and give the courtyard garden a real makeover to make it more wheelchair friendly and improve the planting,
Addendum leading up to and n Feb 25th Amy Smart rallied a team of over thirty enthusiastic employees from several companies (the list is on MKCPP website) plus donations of paving slabs, astroturf, sand, cement, equipment hire and plants. It was a great day starting with bacon sandwiches, and finishing with cups of tea from the Mac Unit. We managed to do something in all three gardens so that they are now ready for patients, relatives, friends and staff to enjoy, especially as all the spring bulbs are coming into flower.
Jaff also said that we have to thank Estates for putting an outside tap in the Courtyard garden so everything can be watered with ease, which will make a huge difference.
** Website – www.mkcpp.org
Suze continues to monitor and update. The offer still stands from Suze if members want to learn how to use, update and add to the website.
** Environment audits
Suze briefly told everyone how they worked
Amanda, attending for the first time said that they had very little room when four consultants were in the Tuesday clinic so she was possibly thinking of sharing a space for herself and patients in the dermatology clinic area which adjoins.
Jaff said that we should revisit the H&N area.
Action – JN to make arrangements for another e-audit
Jaff said the first LGFB in 2017 will be on 17th January and that Gail would also be providing an individual service for a teenager in the morning. Further workshops are on the third Thursday of each month at 1.00pm in the Age UK Centre, Peartree Bridge. Members from Bosom Pals (MK) provide refreshments.
** Henry Allen Trust
Dawn said they had now kitted out the suite on Ward 5 with a TV, DVDs etc. They were actively working with local GPs to provide more awareness, using Signs and Symptoms cards. There is also to be a GP awareness evening at MKUH organized by Dr Nina Bursell.
Over the Christmas period they made a lot of drops of presents for children at MKUH and homes.
Working with Joe Harrison they are renting a four bedroom property that was an “on call” house which had become available. It is to be called Henry’s Home and will be used by families so that they can spend time with their children without travelling long distances. It will be decorated and made really comfortable.
They are also working with the Government to ensure an 80p urine test is made available as a diagnosis tool; plus they are campaigning for more awareness.
Suze said this was most impressive and the group’s appreciation was shown.
Jean said that Healthwatch now has new premises in the Business Centre, Suite 113 Foxhunter Drive, Linford Wood East MK14 6GD. Telephone 01908 698800 email@example.com
Item #6 – Support Groups and other updates
** Bosom Pals
Jaff said this is their 25th anniversary so they are planning to celebrate. For more information about meetings and dates, see website – http://bosompals-miltonkeynes.btck.co.uk
** Bladder Group – The “Pee-Wees” – Meetings are still on hold for the time being.
** Carers MK
Suze asked what happened to the Carers MK. It was said that they will have a room in the new main entrance. Watch this space.
John said that there was a carers group in Hanslope Church Hall, and they joined the Cancer Support group for a Christmas meal.
Action – to invite Carers MK to the March meeting.
** Health and Wellbeing Patient Support
This is still being held in the hospital restaurant, there are plans to advertise it more widely. Contact Sam or Fay in the Information Room in the Mac Unit.
** Lymphoma support 2017 meetings –
- 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
Martin said that they had their AGM in December with a Ukulele group providing the entertainment which was great fun. They now have several new faces on the committee. All their meetings for 2017 were planned. The first is on 25th January, 11.00am at the Medical Detection Dogs Charity base – a joint event with the Bedford group. Discussion followed about the amazing dogs.
The PSA testing day will be repeated thanks to funding from MK Community grant.
They had a very successful ‘bucket shake ‘ at MK Dons in collaboration with the Aylesbury group.
Two PhD students will talk to the group about research into diagnostic techniques.
For more information see website – http://prostatemk.org
** Hanslope Group
John said that their new leaflet was available and had samples. He apologise for not having a reference to MKCPP in this edition. He hoped that distribution to surgeries will encourage GPs to be more proactive in spreading awareness of the group. He reminded us that it is a mixed group of patients and carers and that it sits alongside other groups in the village such as exercise, mindfulness and parenting.
** MK Supermoles – Skin Cancer Support group
Next meeting is due in 2017 – TBC by Lorraine.
Suze asked if Jeannie would consider meeting with Sue Malleson with a view to helping the lung ANPs set up a group. Jeannie said she would be leaving the area in the near future so could not really commit to this.
Action – Jaff to make further enquiries when she attends the Lung AGM.
** Head and Neck
Amanda – said that there had been a laryngectomy group but it had not been well supported. She said she had been to a well-established group in Luton. She thought that it would be possible have a questionnaire to capture the thoughts of her patients. Dawn offered to help with setting up a group.
Also mentioned was the group that Speech and Language organized in the Conservative club in Stony Stratford and the Shenley Retirement Village.
Shaeen said that there were Macmillan funds for this, and also Community Action could offer help.
Action – the patient representative that attends their AGM should address this.
** Willen support group
Jean said that although the group was not meeting they were being asked to review leaflets, the latest being on Pressure Ulcers.
Linda said that Chrissie is introducing a new format for meetings, to cover different topics. In general the research team is doing well and they are recruiting well into trials.
Shaeen said that that Macmillan was restructuring and that there was more engagement in the community and there would be grants available. Unfortunately the new lead Christine Cowap was not able to be at the meeting. There will be more updates as they occur.
Suze thanked Shaeen for the biscuits that she brought for the group.
Item #7 – Miscellaneous
** Suze introduced Richard to everyone as he arrived late. He said that he had had a meeting with Toni the practice manager of the Whaddon Medical Centre and that feedback from the inaugural meeting of their local support group was very positive. The second meeting is planned for early March.
** Suze said that she, Jaff and Richard had been invited to the Macmillan Conference in Manchester on 23rd March, where she hoped to talk about all the initiatives that MKCPP are involved in.
**Suze said that Genesis should be aware of the Singing group that Fay has set up for cancer patients in the Age UK Centre at Peartree Bridge once a month. Also the Community Car Service because patients struggle accessing the service.
Tony said that it is a dedicated service, they just need 2-3 days’ notice: they collect, deliver, wait and return and it is half the price of a taxi service. He also said that they are looking for more drivers. It is a generic service not just for cancer patients.
Dawn said that her charity “Henry’s trust” also has a taxi service.
** The meeting closed late at 14.00hrs.
** Date of next meeting: Tuesday 14th March
TIME: 12.30 – 2.30
VENUE: – BICS Training Room, Oak House 12.30 – 2.30
Patient representatives to meet at 12.00 for refreshments and catch-up.