Updated February, 2020.

Closing the gap between hospital and community care for patients living with Cancer and Beyond

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 nearly six years now. It is gratifying to see that many other localities, NHS and other groups as well as charities (including Macmillan), are arriving at the same conclusion.

Back in 2016, Angela Sheldrick, Breast ANP at MKUH was seconded by Macmillan and NHS England to manage Macmillan’s generic Living With & Beyond Cancer project in our locality to move more treatment, and especially post-treatment care, onto a more workable basis in closer partnership with primary care. This move was welcomed by us all in the MKCPP (… especially as we had been asking about it for four years.)

Cancer and Beyond: your way ahead

Now, the MKCPP is working on a local project named Cancer and Beyond: your way ahead to explore and facilitate delivery of help to cancer and post-cancer patients in our community, within the community, on a patient-led basis. 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, 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 further meeting – similarly packed to standing room only – proved to us that we’re on the right track. And a third meeting held in September 2017 proved its value beyond any doubt: nearly 40 people attended, many of whom had been to the previous two meetings and who were looking forward to more.

Another GP practice decided to host a pilot meeting along similar lines. This took place early in October 2017.

This meeting was equally well attended and at one point there was standing room only in the meeting space.

Especially after the third successful group meeting at the first GP practice, other MK GP practices became interested in convening similar meetings.

The first of these 2018 meetings was a joint group comprising attenders from the two local (Bletchley) practices

Because the previous meetings had been so successful, we decided not to try cramming everyone into the meeting rooms and/or reception areas of the two local GP practices, but instead to look elsewhere. At a meeting of the Cancer & Beyond Steering Group we were lucky enough to benefit from one member’s strong connections with Bletchley/MK College, who kindly offered us accommodation for a meeting.

This attracted an audience of more than 50 patients, carers and other interested parties who enjoyed a meeting theme of  “exercise with and beyond cancer” at the Bletchley campus of MK College … with presentations and a panel discussion facilitated by the MKCPP with speakers as follows:

Willen Hospice physiotherapist Nicky McKinnon
Dr Andy Potter (GP, Whaddon Medical Centre)
Dr Adam Staten (GP, Red House),
Macmillan ANP Fay Grech-Marguerat
Macmillan ANP Sam Timmins

Interest also has been expressed by adjacent NHS / CCG GP practices in holding Cancer And Beyond meetings, including a GP practice which straddles the border between MK and West Central Bedfordshire. More pilot meetings have taken place across MK and more are planned in 2020. The original joint meeting with the two Bletchley practices now has become a regular quarterly feature and is extremely well attended.

Interest has been expressed in these meetings by patient representatives involved with a number of other West Central Bedfordshire GP practices, and we hope that the initiative will spread across there into the MK/Bedford/Luton & Dunstable STP as well as the East of England Cancer Alliance, both of which border on to Milton Keynes.

In addition we hope the initiative will spread to one of our other neighbouring regions, including the Thames Valley and East of England Cancer Alliances and beyond.

New Cancer Centre opening this year – such an exciting move forward!

At long last Milton Keynes has a dedicated cancer building bringing all treatments together. There is even room for at least one linear accelerator (radiotherapy) machine which we hope we will have soon. To read the whole story about the project, click here …

East of England Cancer Alliance Patient Advisory Board

Recently 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. This has now worked through into a very interesting and potentially useful forum, and since its inception MKCPP representatives have attended all its meetings.

Although here in MK we still have a strong clinical relationship with Oxford/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 is 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.

Working Group: Patient Feedback Project

The Patient Journal (version 3) was being distributed to all patients with new cancer diagnoses at MKUH. 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.

Core members of the MKCPP are being DBS checked by MKUH Cancer Services, with a view to being allowed on to the wards and talk to cancer patients there, in addition to talking with patients in waiting areas and outpatients, etc. This will expand the MKCPP’s ability to pick up on any problems or other issues right away and feed back relevant information through the matrix described above.

Working Group: Children’s Cancer
Some time ago, 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 2018.

Working Group: Sharing The Caring For Cancer in MK – Resources Directory
The fourth print run of Directories is being handed out now. Macmillan did not agree to funding this printing 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.) There is a PDF download facility on this website so anyone can access the Directory for their own use, to read on screen or to print out. Just click on the box at the top right of the page if you’re using a desktop or laptop, or at the bottom of the introductory text on your phone. 

Working Group: 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 2019, especially now that Macmillan have expressed an interest in helping us achieve that. 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. Sadly Gail has stepped back due to pressure of her work, but has promised to return and help out at our workshops when she can. Thanks also to Sam and Fay for officiating on the part of MKUH as well as the Bosom Pals charity that provides much-appreciated refreshments. The workshops – which celebrate their six-year anniversary in Milton Keynes in 2020 – 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 like the MKCPP, Bosom Pals along with the NHS and Look Good, Feel Better can deliver amazing benefits for cancer patients and their carers whether at national or local level.

Data protection / GDPR compliance
We do not hold information about members of our group apart from email addresses. However to become compliant with data protection regulations implemented in May 2018, we have written and posted our own privacy policy.

MKCPP leaflet
The leaflet is still 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. But this may change: we need more members willing to be active and spread the word beyond MKUH meetings. Watch this space.

Public Liability Insurance
At long last, we have been advised that to be on the safe side, we DO – in theory – need to have public liability insurance. However as currently we operate only within premises already covered by such insurance (i.e., mainly NHS) we’re OK. Again, watch this space.

MKCPP Website
The URL is www.mkcpp.org and as you can see it contains a lot of information. Please use this site to keep up to date with this Tracker, plus Diary Dates,and other relevant information which will be posted as blogs. If you have anything you would like to share on this site please send it along to info@mkcpp.org.