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.
Was it really March when I last posted here? For a long time this year, very little happened in my bit of the NHS. Essentially we got on with the day job and waited. I had got fed up with writing about it here and if I am bored, I can guarantee that it wouldn’t make very interesting reading. I think that situation has changed and that what is currently happening in PCTs (and elsewhere) to be honest needs to be written about, since there is little being said in the media or newspapers (other than the Guardian). I predict that once the dust has settled and the ‘bureaucracy’ has been removed, some people will be very shocked by what is left. They will be surprised that the NHS isn’t actually being run by GPs (though they have a wonderful nominal role) but by rehashed senior managers some of whom work in Leeds and many more work out in the local areas.
Over the next few days and weeks I will try to explain the mess that Andrew Lansley put in place and what the implications are for people like me. More importantly though what are the implications for people working on the front line, and vitally what does it mean for patients? Will any of this matter? Time will tell I guess but I suspect that perhaps it will.
The Cancer Networks, one of which I work within, will be subsumed into a new kind of Strategic Clinical Network. This will include not just cancer, but heart disease and stroke, mental health and maternity and children. There will be 12 of these networks which will be hosted within some of the Local Area Teams of the National Commissioning Board. Staffing will be reduced from current levels, but with just a few months to go, we don’t really know by how many nor indeed to we know exactly what these people might do.
My job is about facilitating clinical people to work together to improve cancer outcomes. Some clinical people, I might tell you, need a hell of a lot of ‘facilitating’. I also work with patients and carers to make sure that they are able to contribute to the development and delivery of services. When (rather than if) that kind of support is not available, I am not quite sure what will happen. The work of course will go on and best not to engage in some kind of amateur dramatics here about the value of me and my colleagues. But there are lots of things that we do, that appear to be valued and necessary that I can’t imagine being picked up by any one else. So as things emerge, I will try to discuss them here.
We really are on count down now, and likely by the end of the year many of us will be on notice of redundancy. Others though are luckier, particularly those working in areas where they can be mapped into jobs in the CCGs, the CSU or Public Health. I hear you cry what is a CCG? What is a CSU. Well good question and perhaps I could do a little bit along the lines of trying to define them. Maybe you can tell I am just a little bit more keen to return soon and say more. Time to resurrect this dying blog and wonder about what Life in the NHS is like right now!