Published: 04/04/2002, Volume II2, No. 5799 Page 20

All the biggest NHS changes take place on 1 April, and sometimes that seems more than a coincidence to people like me, whose job involves explaining to patients how the system works, what their rights are and how to make informed choices. This year beats most.

I have lived through both the advent and the demise of the internal market. I have seen the abolition of extra-contractual referrals and their replacement with out of area treatments. Both were supposed to enable patients to go to a hospital outside their own district if required. OATs were supposed to preserve some possibility of choice, but the mechanism was arcane and shrouded in enough unaccountability to make it impossible even to tell patients how to appeal against a refusal.

Then came the order to get rid of OATs and absorb them into ordinary contracts (except they are not called that any more) between health authorities and trusts. If that could not be done, they were to be subsumed into so-called regional specialised commissioning.

Now we have entered an Alice in Wonderland world where health authorities and regions have been abolished and all commissioning is to be handed over to primary care trusts which have no experience of commissioning specialised services.

To understand what this might mean, I read the second annual reports of the eight regional specialised commissioning groups. I had been told that, although regional offices were being abolished on 1 April, these groups would continue in 'virtual' form for another year to pass on their expertise to the new PCT commissioners. I read the reports mindful that one of the six criteria against which their performance was supposed to be judged was patient and carer experience.

When I wrote about the groups' first annual reports over a year ago, best an aspiration. Trent stood alone in having a community health council on its main specialised commissioning group.

It remains alone.No other had then, or has now, a user representative of any kind.

I also noted some did not even have a primary care group representative, never mind a user or carer. Things have not changed greatly.Only half had representation from PCTs, and in some of these it could best be described as minimal.Much more shocking, the 16 months since have seen little improvement in involving users and carers in specialised commissioning.

Twenty-three specialised services were designated to be commissioned regionally, in future by PCTs. In fact, some services have not been addressed at all. These include home parenteral nutrition, specialised immunologies, allergy, infectious diseases and hepatic and pancreatic surgery. It is not at all clear what happens to a patient in need of such a specialised service.

Of those services which were reviewed or commissioned, over half had no discernible user involvement, and often their involvement was restricted to a few specialised commissioning groups. The services which stood out as exceptions included cleft lip and palate and cystic fibrosis, thanks to their patient organisations, the Cleft Lip and Palate Association and the Cystic Fibrosis Trust, which field patient advocates around the country.

The other specialised services which stood out as having involved users and carers were for forensic psychiatry - high and medium-security mental health patients. There were excellent examples of user/carer involvement, some including training. But progress is slow, even in places where you would expect it not to be: 'Work is ongoing to establish mechanisms to obtain patient and carer perceptions and satisfaction levels with current provision at the Bristol Children's Hospital.'

When patient and public involvement have become a mantra for the new NHS, it is difficult to understand why no user involvement in specialised cancer services was reported.Nor was any reported for bone marrow transplants, specialised women's services, specialised services for rehabilitation after brain injury, specialised cardiology, specialised children's services or paediatric intensive care services.

A cynic might wonder if it is because too much patient and public involvement would make people aware of the most unacceptable variations in availability of specialised treatments. To give an example, availability of renal replacement therapy varies threefold in some regions, and - as one specialised commissioning group bluntly put it - 'patients who require but do not receive renal therapy, die'.

That is why patients and the public should be involved. If more resources are needed, who better to help make the case? In the meantime, we must ensure lessons from all good practice are shared as widely as possible.


1Rigge M.Whose view is it anyway?

HSJ 2000; 110 (5735): 20.

Marianne Rigge is director of the College of Health.