Our Tracker document keeps everyone informed on the projects going through the MKCPP at any one time. Here we are up-to-date as at August 17th, 2017…in no particular order:
We have another tragic loss to report: our ever-smiling member Deborah James, aged just 37, from metastatic bowel cancer, July 27th. Deb was unbelievably brave in her fight against the disease, suffering a number of other personal and professional blows around the same time, but remaining stalwart and cheerful throughout. Our hearts go out to her family and friends and particularly her 7 year-old daughter, Grace. See Deb’s obituary here. And you can read about her wonderful funeral here.
The second sad loss of this year was our cheerful, can-do, much-loved member Richard Freeman. Please see Richard’s obituary here. Several of us attended his lovely, friendly and humorous funeral in Milton Keynes on May 5th, at which Sally Burnie (Head of Cancer Services at MKUH) and Angela Sheldrick (Macmillan Living With and Beyond Cancer Project Manager at MKUH) spoke about Richard’s wonderful contributions, on behalf of our partnership. His widow Vanessa is very supportive of the MKCPP and hopes to help us when she can in the future.
Working Group: Closing the gap between hospital and community care for patients living with and beyond cancer
Increasingly this is becoming a critical issue, especially given that cancer patients being discharged back into the community to continue living with and beyond cancer often have to jump over a large gap between secondary and primary care. We in the MKCPP have been flagging up this problem for four years now. It is gratifying to see that many other localities, NHS and other groups as well as charities, are arriving at the same conclusion.
In 2016 Angela Sheldrick, Breast ANP at MKUH was seconded by Macmillan and NHS England to initiate Living With & Beyond Cancer project to move more treatment and especially post-treatment care onto a more workable basis in closer partnership with primary care. Although Angela’s initial remit had a focus on breast cancer, it has now rolled out for other tumour sites in the near future. MKCPP members are helping her with input from the patient’s viewpoint.
Cancer & Beyond: your way ahead
As an extension to the above the MKCPP is working on a local project named Cancer & Beyond: your way ahead to explore the practicalities of delivering help to cancer and post-cancer patients in our community. After an initial survey to get cancer patient/carer feedback at local level, a pilot scheme started in 2016 with one of MK’s GP practices. A preliminary meeting was held at the practice for cancer patients, carers, friends and family members in autumn 2016 and was a resounding success, with many attendees keen to take the initiative further and form a micro-local cancer support group on the strength of this first meeting alone.
A second meeting in March 2017 – similarly packed to standing room only – proved to us that we’re on the right track. Especially after this second successful group meeting, other MK GP practices are interested in convening similar meetings in 2017, and MKCPP members along with local Macmillan representatives plus Angela and her team will be working to roll these out over the coming year. A further workshop at the original GP practice is planned for September 21st, and the first at a second practice is planned for October.
Cancer Education Days: Breast Cancer and beyond
In parallel with Angela Sheldrick’s initiative above, a Breast Cancer Education Day, sponsored by Macmillan Cancer Support, was held in Milton Keynes in December 2016 for breast cancer patients, their carers, families and friends. A further event in June – held at the same venue, but this time for all cancer tumour sites – was a great success and very well attended. Oragised and led by Sam and Fay, our two Macmillan Patient Information ANPs, the audience enjoyed a selection of excellent presentations and even some magic tricks by a laryngectomy patient!
East of England Cancer Alliance Patient Advisory Board
On June 5th, Jaff (Secretary) and Suze (Chair) represented the MKCPP at an exploratory/preliminary conference in Cambridge with a view to setting up a Cancer Patient Advisory Board to work within the overall Cancer Alliance activities in the East of England.
Although here in MK we still have a strong clinical relationship with Oxford and the Thames Valley NHS region, in terms of the NHS’s STPs – Sustainability and Transformation Plans (affectionately known in some NHS circles as Sticky Toffee Puddings) currently MK seems to be partnered up with Bedford Hospital and Luton & Dunstable Hospital. That makes sense in non-NHS geographical terms but does raise questions about MK having one foot in two different NHS regional camps.
However ours is not to reason why and in any case, if we can get together with other cancer patient groups whether to the east or to the west can only help spread best practice … and benefit patients.
Working Group: Patient Feedback Project
The Patient Journal (version 2) was being distributed to all patients with new cancer diagnoses. MKCPP core members were attending the Macmillan Unit to chat informally with patients and carers waiting for appointments. This was in addition to distribution of the Journals, to offer patients and carers the chance to record their feedback verbally if they preferred that to writing it down.
Now, given that it seems patients and carers (perhaps understandably) are more inclined to give a “snapshot” view of their treatments, reactions, etc., we have devised a new and vastly simplified “MK Cancer Care Survey” folder which patients and/or carers can fill out themselves, but also can be used as a discussion document when our members chat informally with patients and carers in MKUH outpatients areas and elsewhere. This is far less intimidating than earlier incarnations, but all the same is designed to pick up on any problems.
With both the new and the previous versions, although the incoming information is obtained in informal and relaxed circumstances, key points from these conversations are recorded manually and fed back to Cancer Services within a tightly-structured, detailed and effective matrix. This allows any issues – particularly should they be serious issues – to be fast-tracked right up to top decision makers and lead to action plans for any appropriate improvements to be considered by MKUH – fast.
Several suggested improvements obtained via feedback from MKCPP surveys have been implemented, including the provision of free WiFi for everyone attending the hospital for cancer treatment, so helping patients and carers to keep in touch with their work, leisure and other pursuits online. MKUH Cancer Services are pleased to share the results of these exercises and share such information via “you said, we did” information within the MKUH Macmillan Unit and allied locations at the hospital.
Working Group: Children’s Cancer
Dawn Allen from the Henry Allen Trust agreed that it would be a good idea to implement a “Junior Journal” using Milly-the-cow for even greater effect for children with cancer in MK. We discussed creating a hygienically suitable “concrete cow” toy for young patients, and since then a prototype has been created by Hobby craft: a pack including a white and black Milly piggy-back (well, cowie-bank!) some paints and a brush. The MKCPP Working Group for this initiative is taking this forward in 2017.
Working Group: Sharing The Caring For Cancer in MK – Resources Directory
The second print run of Directories ran out: they were being distributed in the diagnosis packs, and copies were also being distributed to GP surgeries and other outlets. Macmillan did not agree to funding a new version of the Directory, but MKUH Cancer Services kindly offered to pay so the revised Directory was been printed and published and is now “flying off the shelves,” as an MKUH HCP described it. (Please note the Directory is available at all times online here on this site and is updated as each new item comes in.)
Working Group (still TBC for 2017): Cancer awareness amongst ethnic groups in the community
A recent meeting attended by Jaff and Suze offered up a new lead into the Asian communities where, in particular, a lot of work needs to be done to increase symptom awareness and the earlier seeking of diagnosis and treatment. It is hoped that we can make significant progress with this during 2017. Further investigation is being planned into other ethnic groups in Milton Keynes.
Working Group: Look Good, Feel Better
Huge thanks to Gail for being our liaison link with the LGFB Charity and making all this happen, and to Sam and Fay for officiating on the part of MKUH as well as the Bosom Pals charity that helps provide much-needed refreshments. The workshops have proven so popular that despite LGFB putting on some extra workshops, all are consistently booked up for several months in advance. The workshops truly are a heart-warming experience for all concerned and demonstrate how co-operation among local charities, the NHS and Macmillan can deliver amazing benefits for cancer patients and their carers whether at national or local level.
Radiotherapy Unit and new Cancer Centre for MKUH
The RT unit is still under discussion, but in the meantime many MKUH patients are still able to benefit from RT treatment thanks to our local NHS arrangement with Genesis Care at Linford Wood. Plans for the adjacent new cancer centre (for other oncology) within the MKUH grounds are now finalised and the building programme is due to get going ASAP!
Should the MKCPP become a charity?
At the July 2016 meeting the Partnership decided to refer to itself as a charitable organisation, but as fund-raising needs are very limited there is little point in going through the fairly complex process of registering as a charity at this stage. This is likely to be reviewed at the September or November meetings of the MKCPP.
The leaflet is available from the Mac Unit. This one is branded as the MKCPP, not the NHS, and is A5 in format. As we are managing to recruit new members by personal referrals at the moment, the current leaflet focuses more on explaining to people what we do, and why.
Public Liability Insurance
We still await absolute confirmation of our own position.
The URL is www.mkcpp.org and as you can see a lot of information has been uploaded. Since the site went live in July 2015 it has had more than 20,000 page views which considering its very small remit, is quite encouraging. Please use this site to keep up to date with this Tracker, plus meeting Minutes, Agendas, Diary Dates, and other relevant information which will be posted as blogs.
Hospital construction work
Please be aware, and share this, that all h*ll is still breaking loose at MKUH due to extensive remodelling, although these works now are nearing completion and the new reception area has been opened. In any case though, do allow extra time for parking. Even the multi-storey car park gets full to overflowing some mornings.
Wednesday September 13th, 2017 in the Eaglestone Restaurant Meeting Room. Please note the earlier times – 11:00 – core members … 11:30-14:00 – all. For further information contact firstname.lastname@example.org.