You can change some of the NHS all the time, but you can't change all of the NHS all the time

In Spring 2011 I was delighted to accept an invitation to join a panel of speakers at the Genetic Alliance UK conference in London. The session's main topic was the panel's view of the commissioning debate in the NHS.

As Director of the Behçet's Syndrome Society (a severe autoimmune disorder), and having been involved for the last two years in a bid for National Specialist Commissioning, I hoped I could add some flavour of a small charity's experience of dealing with the NHS.

My research confirmed the stance of the NHS professionals — the NHS has always been changing, but perhaps not to the extent being considered today. One particularly relevant comment was from Barbara Castle in 1974, 30 years after the NHS was founded: 'The task now is to develop the Community Health Councils (CHCs) into a powerful forum where consumer views can influence the NHS and where local participation in the running of the NHS can become a reality'.

Sadly for many, CHCs were abolished in 2003 as part of a reorganisation, with a comment from Malcolm Alexander (Director of the Association of Community Health Councils for England and Wales) in their 2002/3 Annual report reading: 'The poorly planned abolition of CHCs has discredited the Government and disempowered patients and carers. A vacuum has been left in the NHS where once there was active engagement, continuous monitoring and creative partnerships between communities and their local health services'. I have been led to believe that some felt CHCs were too powerful and politically influenced. But equally, that could be part of the debate about who the NHS is for — is it the patients or the doctors?

After their abolition, CHCs were replaced by patient forums, which were in turn abolished in 2006, to be replaced by LINks, which are themselves currently under transition into ‘Health Watch'. To me, it really feels like rearranging the deck chairs on the Titanic, but sadly it is quite clear that the voice of the patient has been diluted since the days of the CHCs.

Nowadays we are inundated with NHS slogans and schemes: 'No patient left behind'; 'No decision about me, without me'; the Expert Patient programme; and 'Any willing provider' — or may I suggest that be 'Any cheap provider'?. 'Big Society' is encouraging charities and volunteers to get involved, but without up-front funding I fear little will happen other than to have well-intentioned people give an unreliable, fragmented service .

During my presentation my suggestion of: 'You can change some of the NHS all the time, but you cannot change all of the NHS all the time' (with apologies to Abraham Lincoln), seemed particularly popular with the audience.

It cannot be denied that the NHS, like the rest of the country, has to be concerned with expenditure but I struggle to reconcile the statement that 'the NHS budget is ring fenced' with the urgent need to make £20 billion in efficiency savings. Despite what is being said in public, this means that hospitals are being forced to cut front line staff.

Behcet's disease is chronic condition caused by the body's immune system becoming over-active and producing unpredictable outbreaks of unwanted and exaggerated inflammation. There are an estimated 1000 people with the disorder in the UK, and symptoms include severe ulcers, headaches, loss of sight, joint problems and stomach and bowel ulcers.

The reason behind this immune response is unknown, but it is expected that genetic factors are involved. GP surgeries can go five lifetimes without seeing one patient, and when they do the average diagnosis time is between eight and ten years. I wonder whether, when the GPs control the NHS budget, the diagnosis time will change.

Finally, we were asked to offer some suggestions to the Government during this period of reorganisation. Mine were as follows:-

- Please don't pay lip service to the voice of patients;

- Please don't pick off patient groups one at a time so that you can tick that box;

- Please don't consult patients last.

I feel very strongly that the reason the NHS works is because local groups of dedicated and professional people do their best at their jobs, despite the Government, and despite the bureaucracy. And long may they continue to do so.

These are my personal thoughts and not the official position of the Behcet's Syndrome Society.