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.