Our Tracker document keeps everyone informed on the projects going through the MKCPP at any one time. Updated as at November 17th, 2017Closing 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 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 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 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 are looking forward to more.
Also in Bletchley, 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. MKCPP members along with local Macmillan representatives plus Angela and her team will be working to roll these out over the coming year. A meeting of the Cancer & Beyond MKCPP working group is scheduled for December 2017 to plan further workshops for 2018.
Interest was has been expressed by adjacent NHS / CCG GP practices in holding Cancer And Beyond workshops and this will be explored in the early part of 2018. It is to be hoped, also, that more GP practices in Milton Keynes will take up the initiative.
For more information about this initiative, click here.
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. 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 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.
At our recent plenary meeting (November 14th) we were delighted to welcome Carol Ord, who is leading cancer patient engagement activities in the local STP. She shared with us the fact that across the three hospital Trusts involved, patient representation differs quite widely. She hopes to arrange a meeting with cancer patient representatives from all three Trusts early in 2018 to see if activities can be homogenised, or at least shared usefully.
It’s worth noting that – in addition to NHS East of England – both NHS England (Thames Valley region) and Macmillan also are interested in the way we work as a working model at local level.
Let’s hope that can be used and shared to the benefit of all.
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.
November 2017: several core members of the MKCPP have been 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
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 third print run of Directories is being handed out now. Macmillan did not agree to funding this third 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.)
Working Group (still TBC for 2018): 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 2018. Further investigation is being planned into other ethnic groups in Milton Keynes.
Working Group: Look Good, Feel Better
Huge thanks to Gail for continuing to be 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 provides much-appreciated refreshments. The workshops – which have just celebrated their two-year anniversary in Milton Keynes – 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 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. First, we’re due for another multi-storey car park which should take some of the pressure off us, but building of the new Cancer Centre is scheduled to happen right after the car park is up.
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. However according to the rules, until we obtain funds amounting to £5,000, we can call ourselves a charity anyway. Given that we are about sharing information, networking and coming up with / implementing ideas to help cancer patients in MK and monitoring what’s going on from the patient’s point of view – not raising funds – what we’re called is not a big deal. Do you agree?
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. Yes, even after all this time. However as at November 2017, thanks to Philippa Cutler of Pyke, Smith & Cutler Insurance we now have some useful information about it and it would appear that we may need to get our own cover. TBC at the January meeting.
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 meeting Minutes, Agendas, 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 email@example.com.
Hospital construction work
Please be aware, and share this, that all h*ll is still breaking loose at MKUH due to extensive remodelling, although some of the works now are nearing completion and the new reception area has been opened. Next projects include a second multi-storey car park, followed immediately by the construction of the new Cancer Centre, with more new activities as well. If you’re worried that we will run out of space, don’t – there is still a lot of room on the MKUH site. (Eventually.)
Wednesday January 10th, 2018, in the Eaglestone Meeting Room (at the back of the Eaglestone Restaurant at MKUH.) For further information contact firstname.lastname@example.org.