Notes from the field of public involvement

Wednesday, 22 February 2006

NICE is all very nice but...

M-A-C Associate Christine Hogg recounts her experience trying to use NICE guidance to obtain appropriate treatment for a recurring hand problem. What she discovered was that the treatment she wanted that was recommended by NICE as safe and effective was available in Paris and in other European countries. What was on offer in Britain would have meant many days off work and a 6 month recovery time - hard for Christine as a self-employed consultant, a point often overlooked by the NHS.

The National Institute for Clinical Excellence (NICE) was set up to bring an end to post code prescribing. However, good intentions and national guidance do not necessarily lead to changes in practice, even when they could save the NHS money.

I have Dupuyten's Contracture in both hands, which is quite common (both Margaret Thatcher and Ronald Reagan had it) and probably genetic in origin. Cords grow in the palm causing the fingers to contract. Though it is not painful and the cords are not attached to tendons or nerves, it can become difficult to use the hand. The treatment has been hand surgery, fasciotomy, which involves an overnight stay and 6 month recovery and then there is a good chance that the cords will come back and further surgery is problematic.

Not a good prospect, but I decided to go for surgery as I was finding simple chores, including typing, increasingly difficult. However, thank goodness for waiting lists. On a US patient internet discussion forum, I found out about an alternative treatment in France and about the NICE guidelines that said it was safe and effective (National Institute of Clinical Excellence, 2004, IPG043 "Needle fasciotomy for Dupuytren's contracture, guidance"). Though it has a higher recurrence rate it can more easily be repeated.

This treatment, needle fasciotomy, involves using a needle to break the cords and free up the fingers. People from the US were coming over to France to have this, many of whom had had unsuccessful surgery already. Anyway I went to Paris, where rheumatologists have been doing this treatment for almost 30 years. The first paper was published in English in 1979. By now the little finger in my right hand had deteriorated to stage 4 and I needed two sessions. Each session took about 20 minutes, and I could use my hand immediately afterwards without pain. I also had some great days out in Paris. The two treatments cost together Euro 110. I still cannot believe my luck in avoiding surgery.

NICE are to be congratulated for producing the guidelines though I found them curiously unpatient focussed. The guidelines did not mention the difference in costs, the low complication rate (1%) and only a passing reference to the fact that patients might prefer to avoid admission and surgery. NICE has produced a leaflet for patients so that they can make a choice of whether to have needle fasciotomy or open hand surgery. But there is no choice. As far as I know there is no one in the UK doing needle fasciotomy and certainly no one here who has been trained in Paris to do it.

I wrote to my PCT to ask how they planned to implement NICE guidance. They wrote to the two teaching hospitals in the area. One replied that they were surprised that NICE wasted its time on such a procedure which was only one of many and the other replied that they had never entertained doing such a dangerous procedure as needle fasciotomy. From the US website many other UK residents are having the same blank response and lack of success when they contact their PCTs and consultants. The problem may be that in Europe rheumatologists carry out the procedure, while British orthopaedic surgeons are not interested. I got nowhere with the Modernisation Agency and the British Society of Hand Surgeons.

As this did not seem to be getting very far, I decided I might get more attention if I asked for the PCT to pay - after all even with travel the cost was a fraction of what they were going to pay for conventional treatment with an overnight stay in a London teaching hospital. However, it was explained to me that I would have to find an NHS Consultant to support my application to go for treatment and then a case could be made to the Department of Health. This seemed a bit of a catch 22. There were other options such as making a complaint against the PCT or of course judicial review. But why should I waste my and the NHS' money in doing this?

The PCT has said they are taking it up as a commissioning issue - maybe they are - it could save the NHS money as well as the economy in days off sick. No doubt soon an entrepreneurial doctor will realise this is a winner, for both PCTs and patients, and offer the procedure.

Andrew Craig | Send feedback