In the middle of a chaotic reorganisation we carry on regardless. We are busy supporting our network groups, arranging workshops and training, recruiting users to help with service developments and reporting on things that have been done. We are busy full stop. We work hard and we work pretty long hours between us. But, you might ask and I often ask, why? Why are we bothering to put so much effort into things that we don’t know will continue in the future?
Well partly because we are kind of required to do so. There are rules in place, there are requirements on us and they haven’t gone away. There are also people out there, clinical people, who still need our support to be able to meet together and discuss how they can continue to improve things for people with cancer. There are campaigns for early diagnosis that we are still involved with and detecting cancer and doing so as soon as possible is a priority area. We are also trying to create some kind of legacy, to make sure that what we do, what has been done continues. While people in high places continue to work out how the new world will work, we carry on working in this world.
We are interacting now with the new CCGs; the board members, GPs who are finding out about their responsibilities to their populations. They find that we do useful work, have knowledge they can’t hope (or want) to learn. They wonder how, come April they will be supported in making sure that cancer and end of life care is best commissioned.
We prepare to apply for jobs. The adverts were meant to have been released last week, now apparently it will be this. The top job will be appointed to in the next week or two and then that person (and who knows who else) will interview us sometime in the run up to Christmas. In the new year we will know more about what those with jobs will do in them and we will discover if we continue with business as usual in the old set up.
It all feels a little unreal. But of course it is real. These are real people, with real jobs, real mortgages and bills who shop in real supermarkets and go on real holidays. It is easy to write off those who work in some kind of administration. But the fact I left clinical practice enables others still seeing patients to spend as much time as possible doing so. If there are fewer of us doing those supportive jobs, either fewer patients will be seen or else fewer patients will be able to be sure that advances in implementing best practice will take place.
Those of us who get jobs in the new world of strategic networks will work hard to make sure this doesn’t happen of course. But there are no guarantees. Of course I may be wide of the mark and the new systems may be an improvement on the old ones. Lets hope so for all of our sakes!
My last two jobs have heavily emphasised the involvement of patients in healthcare. When I was commissioning maternity services, those patients were called women and now in the world of cancer they choose patients and carers over the more common term ‘users’. Both of these areas of healthcare have, for many years placed the experience of patients using their services at the centre of planning and delivery of services. At times those involved have felt that professionals pay lip service to this prescribed requirement. But I know that my senior midwifery and nursing colleagues have taken their role seriously as have I. Putting what is discussed in meetings into practice can be difficult as real events take over and people struggle with the realities of their job.
Most of the NHS Trusts (providers) have specific Patient and Public Involvement committees and groups, but these are not specific to a single condition or disease. Maternity is definitely different from the mainstream, given that in the main pregnant women are not ill and are not patients as such. Cancer (rightly or wrongly) also considers itself to be different with unique needs. Peer review measures for User Involvement require us to have a User Partnership within the Cancer Network, laying down a number of ‘measures’ relating to both the experience of patients and the involvement of service users and carers in services.
The new NHS throws all that we know about this kind of service (or disease) specific involvement will take place. I have had the pleasure of working with some amazing people in both areas over the years. They work hard, give up so much of their own time, often in conjunction with running their own busy lives. Sometimes in the case of my current user colleagues, they continue to manage the after effects of cancer or to battle recurrences of ill-health. They are not surprisingly a little anxious of what will become of their efforts once PCTs (who have been statutory expected to manage Maternity Services Liaison Groups) have been abolished and Cancer Networks have been subsumed into Strategic Clinical Networks.
Will the clinical networks be able to support real patient involvement within the entirety of their portfolio (cancer, maternity, children, mental health, stroke etc etc). Or will it be left to the NHS Trust, CCG and other more general Public and Patient Involvement groups to pick up the mantle. Will the stalwarts of maternity and cancer involvement join in with them, will some of them who are part of the Links mechanism become part of the Health and Well being Boards. Does it matter if this is about general patient experience and involvement or should their be something special for specific groups. Or will we lose something from all of this and will some of those committed individuals walk away. From some of what I have heard, many are disgruntled and hurt that the work they have done so far will apparently be lost, and they might just.