Milton Keynes Cancer Patient Partnership
Wednesday 9th September 2015, 12:30 – 2.00
BICS Training Room, Oak House
Dawn Allen, The Henry Allen Trust
Jaff Newton Secretary
Suzan St Maur Chair
Graham Youngman Member, Asplands PPG
Revd. Sarah Crane Team Chaplain
Jen Davies Cancer Manager
Pam Steer UGI ANP
Wendy Black Lung ANP
Sam Timmins Macmillan Cancer Information & Support Manager
Sarah Mannion Graduate management trainee – finance
David Buckley User
Graham Anderson User
Elizabeth Bradley User
Sally Burnie Head of Cancer Services
Jean Mattinsley User
Lorraine Mir User
Kim Weston Bereavement Office
Future dates for your diary: 2015
Nov Tue 10th – BICS Training Room, Oak House
2016 NEW TIME 12.30 – 2.30
All being held in the BICS TRAINING ROOM, OAK HOUSE
Jan Wed 13th
March Tue 8th
May Wed 11th
July Tue 12th
Sept Wed 14th
Nov Tue 8th
|Agenda Item no.||Actions|
Suze welcomed everyone, especially our guests Dawn Allen, Bronwen Webster and Sarah Mannion
These were noted
Agenda order adjusted so items 1.3 – 1.6 followed Item 2
Everyone introduced themselves with a brief history.
Dawn – The Henry Allen Trust
Dawn attending as an observer told us that she and her husband set up the Henry Allan Trust after their little boy died from neuroblastoma in 2013. She said they wanted to provide much needed support for local families and to improve process generally
Bronwen – said she had been treated by the Head & Neck team for parotid cancer. She had met Suze through the Women In Business Network and had been invited to our meeting.
Sarah – said she was shadowing Revd. Sarah for the day as part of a graduate management training scheme.
These were agreed and signed by the Chair.
1.5 Matters Arising
There were no matters arising that were not on the agenda.
1.6 Action Points
2.1 Jen said that a developer for the Cancer Centre was being looked for and that working groups would be set up and include patient representatives.
Macmillan had done a feasibility study and they predicted completion of the Cancer Centre in two to three years.
The Trust is continuing to work with Oxford but they will still consider all options. More will be known after January 2016.
2.2 Pathways and staffing
Gynae RT will be at the Churchill/Oxford.
Head & neck will remain at NGH due to the complexities of the tumour site.
The Oncology Team
Heled Halstead – pathway co-ordinator
Dr Mukherjee GI
Dr Saka GYNAE
Claire Taylor – pathway co-ordinator
Prof Eldeeb BREAST LUNG BRAIN
Dr Hyde UROLOGY
Lorraine Tester – pathway co-ordinator
Dr Karina BREAST LUNG
Dr Mathew GYNAE SKIN LUNG – just joined the team from Northampton.
Three grants have been applied for that if successful will enable the Palliative Care team to be doubled.
Dermatology – Lakshmi Ponnuswamy the new dermatology nurse will be working with Joyce to share the increasing workload.
Head & Neck – an ANP is being actively sought to join the team.
2.3 Annual Reviews 2016 – the following are already booked and patient representatives will be needed to attend these.
UGI/CUP 21/1/16 2-4
SKIN 28/1/16 2.30-4
GYNAE 25/1/16 2-4
PALLIATIVE CARE 20/1/16 10.00
2.4 The “Buddy Programme” – set up after results of the National Patient Experience Survey were published: it was intended to pair those hospitals that scored in the top 20% with those in bottom 20% to share and learn from each others’ procedures with the aim of improving the patient experience. It is now closing. MKH was paired with Harrogate, and a team from Harrogate spent a day with staff and patient representatives in MKH. Both teams said they gained a lot.
On 7th September, Obinder Onwude, Optimity advisor and Alison Kirk, Project lead NHS England visited MKH to talk with groups of staff and patient representatives about the programme and its value. We now await feedback.
The template which Sally developed in partnership with the MKCPP Working Group to record immediate local feedback and consequent actions, has been adopted to be used nationally.
Jen said that new questions had been added to the next National Patient Experience Survey due out in September.
2.5 Peer Review
Jen said that the only external peer review in 2016 will be of the CUP (cancer of an unknown primary) service. Pam said that CUP in its own right had only been recognised for about two years so she looked forward to this because it had been a steep learning curve and the review will only help. Of those patients referred to the team, only about six per year had been diagnosed as having true CUP. These patients benefited by being treated with palliative oncology.
Jaff to liaise with Jen.
|3||Dawn – The Henry Allen Trust
Dawn explained that children with cancer in Milton Keynes were treated on a Shared Care Pathway with the John Radcliffe/Oxford and Milton Keynes so that very often they felt isolated. This is a gap that the Henry Allen Trust hopes to fill.
They provide treats and wishes, and on Ward 5 and PAU, toy packs and help with food. They work closely with Dr Aye and CNS Jodie Savage to improve processes and look at leaflets and information.
Unfortunately the Peer Review recommendation for ensuite isolation facilities had just been rejected due to the high cost.
Suze said we should be more involved with the children’s cancer team at the hospital and would value Dawn’s input.
A child friendly version of the Patient Journal may be feasible.
Suze asked for those interested to be part of a working group, ideally with Dr Aye, Jodie Savage and Ursula Galeb etc. Ray, Steph, Dawn, Jaff and Suze volunteered.
Jaff to liaise with interested members and HCPs.
|4||Wendy Black – Lung ANP
Wendy said she had been in this role for five years, previously she had been part of the Palliative Care Team.
She said that she was interested in setting up a local lung cancer support group, because she thought her patients would really benefit, so she was interested in talking to members of MKCPP who were also members of support groups and to find out how they organised meetings, venues, times, speakers, funds etc.
It was suggested that a sub group be set up to help Wendy get something started.
Jeannie said she was part of the “Lungs for Living UCH” research into early stage treatment. She herself was now living with one lung and would be interested in helping.
Jaff to liaise with Wendy and pass on contacts.
|5||Look Good Feel better
Gail, the registered MK co-ordinator, said that the launch for patients would be 15th October in the afternoon at the Age UK Centre, and that Sam would be the point of contact for registration.
On 1st October there will be a training session for the 13 confirmed volunteer make-up artists, and on 7th October there will be trial run for involved staff, to experience and enjoy the makeover at first hand, so that they can then recommend it to their patients.
Dawn asked if the sessions were inclusive for teenagers but Gail said she preferred to keep them separate because their needs were slightly different, so these would be arranged on an ad-hoc basis.
6.1 Patient Feedback project
Suze said the launch of the Patient Journal needs to happen as soon as possible as it is now printed and ready to go. A meeting of the sub-group needs to be convened to arrange its launch. Jaff to liaise with Sally to find a convenient date.
Jaff said that Sally was proposing to risk assess the members of the group interested in being part of the launch because the DBS checks were being held up due to HR being understaffed at present.
Sabina, for the benefit of the observers, filled in a few details of how the project had already brought about change, giving the example of a patient worried about the side effects of chemotherapy and lasting effects. As a result of this concern a pharmacist now sits in on the oncology consultation to answer any queries before treatment begins.
6.2 Survivorship Directory
Suze reminded the group that Pam had suggested changing the name to “Cancer Resources Directory” to make it more inclusive and user friendly. She said that we still had funds from the original Macmillan grant and that the best quote, again, was from Mark Orr. The contents would require updating and she asked for suggestions for any new additions ASAP, otherwise she would progress the printing. Once again Suze will fund the print run herself so that her supplier, Mark Orr, is not required to go through any “hoops” in order to obtain the MKCPP’s Macmillan grant money in payment for his work. Similarly Suze then will seek reimbursement from the Trust for her spending of the MKCPP’s own (Macmillan grant) money.
6.3 Environment audits
Jaff said that she was in contact with sister Janet Nickelson who was completing the Action Plan.
Addendum – Jaff met with Janet Nickelson and was assured that the Action Plan had been completed and that she had sent it to Jenny Barker who was now on holiday. Jaff asked that it be forwarded to her ASAP.
6.4 Courtyard garden – Ongoing, help always welcome.
Dawn said she had a contact about a company willing to help and would pass the details onto Sam.
Richard asked when Santander would next be in. Jaff said she would contact them.
6.5 MKCPP documentation review and updating
Work in progress, but at the moment there was no need for recruitment leaflets, word of mouth and recommendation seemed to be most effective.
6.6 Public Liability Insurance
Richard said Michelle had confirmed that all hospital volunteers were covered on and off site.
Suze suggested that Richard and Ray checked the wording of the policy.
If in doubt about any event it was suggested that Michelle was asked to obtain a ruling from the insurer just to be sure.
Gail said she will ask Lisa, the LGFB co-ordinator how their sessions were covered.
6.7 Website – MKCPP.org
Suze said she will crack on with this once the jetlag had passed and the day job allows!
6.8 Information / Literature / Leaflets
Sabina said that they were waiting for one more information point to be delivered to complete the set.
Sam thanked Sabina and Richard for all their hard work and for maintaining the areas.
Jaff to arrange the meeting with Sally.
All, to let Suze have addresses of new additions.
Dawn to pass contact to sam.
jaff to contact Santander.
7.1 Bosom Pals – Next meetings are 6th October, 3rd November and 1st December, Age UK centre 7.30 – 10.
If you visit the John Lewis “Place to Eat” put a green token in the Charity box to support the Group.
7.2 Bladder Group – The “Pee-Wees” – Next meetings are still on hold for the time being but it is hoped to restart them soon.
7.3 Prostate Group – MK-PCS
If you shop in Waitrose put a green token in the Charity box to support the Group.
7.4 MK Supermoles – Skin Cancer Support group
They will be having a stand at the Healthwatch event.
Next meeting –
7.5 Willen Hospice
The next Service User Group meeting is Tuesday 1st December, which will be an Open Evening, all welcome for refreshments and raffle.
7.7 Carers MK – Ongoing
7.8 Chaplaincy service
Sarah said that there was still no replacement as yet for Daphne.
7.9 Linford Wood Carers Support group
Sam said that this was advertised in the Mac Unit. It was very helpful for carers of neurological cancer patients.
7.10 Lymphoma support group – meet on first Thursday of each month except in January at the Age UK Centre 2.00 – 4.00
Therefore the next meeting is Thursday 1st October.
Contact – David 01908 265398 or Lynn 07889319806
Aylesbury Lymphoma Helpline – 0808 8085555
8.1 Sam reminded everyone about the Macmillan Coffee Morning to be held on Friday 25th September in the Mac Unit from 10.00 – 1.00. Help and cakes (homemade and bought) would be most welcome. There will also be a raffle.
Suze reminded everyone about the Healthwatch Event on 3rd November in Middleton Hall.
She said that our display needs to be rethought as the video is a few years old.
Suze suggested a blowup of the Journal with some example pages.
Examples too of the Cancer Resources Directory, Local Cancer Support groups, Cancer Awareness etc.
Ideas please to Suze or Jaff
Help will be needed throughout the day from 8.30 – 4.00, to manage the stall and give everyone a break.
8.3 Suze again posed the question “should we be doing more about awareness” and requested that everyone think about this carefully in time for the November meeting. Please share your and/or let Suze or Jaff know as they come to mind.
All – support this event if you can.
All – ideas please to Suze or Jaff
All – ideas pleas to Suze or Jaff
|9||The meeting was closed at 14.12 hrs.
Date of next meeting, Nov Tue 10th – BICS Training Room, Oak House 12.30 -14.00 hrs
Users to meet at 11.45 for refreshments, and a pre-meeting catchup.