reply below

I wouldn’t argue – at all – that patient groups can be very useful for people and carers for many reasons. Patient groups, formal or informal, have been going on for years, and many people find them useful – many doctors find them useful as a resource for patients.
But there are real limitations when it comes to service provision. Charities are not always representative of many or even most people who they purport to represent. I am meant to be an advocate for the patient – it’s my job to make sure my patient is getting the best possible care.
The problem I have time and again is that when it comes to the charitable sector, the NHS has started to rely on it – or at least has not always developed or maintained it’s services in this area. Mental health, end of life care, cancer care in particular. So then you have to start relying on other people’s generosity to support an area of clinical need. Is this always good for patients – or can it increase health inequalities – I’m concerned it’s the latter. Charitable sector services can fold, be reduced, not accept you. In some cases it means that we don’t get the usual feedback that a patient would get from an NHS service – knowing, for example, that someone didn’t turn up for an appointment might be clinically important. The lack of joined-upness, or fragmentation, means that the “patient journey” – an expression I hate – is a mess.
On the campaigning issue: I haven’t yet heard a healthcare charity saying that they are satisfied with awareness/funding/knowledge of doctors about ‘their’ condition. This competition for awareness is not useful. it means that we get bad information, and that the less ‘fashionable’ disorders get left behind.

This is the kind of thing that is going in the book, which is at the final straight now (I hope)