1.   Why NICE's decisions are increasingly being challenged?

  My experience of NICE is that they are very selective about what it is that they do and they are unduely influenced by the professionals. However I am completely at one with them over the need to restrict untried and untested drugs to the public, even when people have go information on drugs that they think will help them. The Select Committee and NICE should be looking at the unfettered way in which drugs are marketed. The companies are trailling the drugs that are in preparation with a huge media hype long before they are in anyway tested to be of benefit or more specifically to be of harm to patients.

2.   Whether public confidence in the Institute is waning, and if so why?

  NICE takes forever on its deliberations and has no teeth to enforce a guideline once it has been established. The new guideline on HMB has had little impact on doctors prescriptions—and I know this because I am still receiving calls from women ill advised to have a hysterectomy. If there is no way to police the guideline there is little point in going to the trouble of creating one. Some prosecutions of doctors and sackings for ignoring guidelines would restore some public confidence in the system. As far as rebellion on drugs decisions are concerned NICE are fighting an insidious PR and marketing programme of Dugs companies which always puts a gloss on their medicines. Unfortunately our NHS has sold out to the Pharmaceutical companies through sponsorship and goodie bags given out to GPs and hospital doctors like smarties and there is intense pressure to prescribe drugs and every effort is made through the media to get to patients demanding to have them. There should be strict controls over what the Pharmaceutical companies are able to do and their contacts with individual doctors and institutions should be policed.

3.   NICE's evaluation process, and whether any particular groups are disadvantaged by the process?

  Yes the patient's voice is almost drowned out in the process. There is a process whereby stakeholder reps can put up to work on the Guideline Development Group. I was not selected but one Group that was selected rarely if ever sent any representation to the meeting. I believe that I was not selected because I had been too confrontational about hysterectomy and had written a book against it and was extremely well informed about the subject. Brigette York from the Fibroid Network was very committed and I have no problems about her appointment. The third person was just a member of the public who had experience of the procedure but no special knowledge or information. Brigette often felt that she was on her own as a patient rep on the CDG because the other 2 patient reps did not have her knowledge or commitment. Together we would have made a dream team as we had both personally already sifted through hundreds of medical papers to have got to where we were. I made representation to NICE when my application to the GDG failed because I definitely felt at the time that they were trying to suppress the patient input into the guideline. There should be more not less patient input into the guidelines.

4.   The speed of publishing guidance?

  Very slow in deliberation. The process is very academic. Some points could be taken as read and not investigated to the nth degree.

5.   The appeal system? What appeal system?

6.   Comparison with the work of the Scottish Intercollegiate Guidelines Network (SIGN)?

  No knowledge of this.

7.   The implementation of NICE guidance, both technology appraisals and clinical guidelines (which guidance is acted on, which is not and the reasons for this)?

  If a guideline is made by NICE it must be implemented fully and policed to flush out doctors who are not complying, or refuse to, or who are ignorant of the guideline because they are not doing their job properly. Ignorance of something is not an excuse in law and should not be so in medical practice. If NICE guidelines are made in good faith and all parties are involved including patients then whatever the clamour through the media the guideline must be explained and adhered to. Giving into patients who are demanding an untested drug because they have heard about it on the news does nothing to strengthen the respect for and value of the work done by NICE. If NICE was more genuinely representational the public might have more respect for it. Its decisions are never properly explained. NICE really needs some PR as it seems to be loosing ground to the Drugs companies. I for one regret this.

Sandra Simkin

Campaign Against Unnecessary Hysterectomies

23 March 2007