Select Committee on Health Appendices to the Minutes of Evidence


Memorandum by The Pituitary Foundation (NC 97)

  We wish the following evidence to be used in your inquiry.


  Taking part in a NICE appraisal places a burden on all support groups, especially small ones. Minimal help is available to participate in a complex process which concentrates on health economics to the exclusion of wider factors.

  1.  The Pituitary Foundation is the only patient support group for pituitary patients and their supporters. We are a small national charity, well supported by eminent endocrinologists, one of whom is our chairman.

  2.  We are currently in the middle of an appraisal (waiting for PAD to be issued). We have found the NICE staff helpful with our many queries although we have not agreed with all their decisions.

  3.  Taking part in the appraisal process has had a major impact on the other charitable activities of the Foundation. We are a small charity, with no spare resource (financial or human) or experience to do this work. Patient support groups are not set up with these activities in mind. Luckily a volunteer came forward. They would normally have spent the last six months raising much-needed funds.


  That realistic financial resources are made available to allow charities to participate in appraisals, together with designated human resource to provide guidance on inputs, on preparation for the appraisal meeting (for example).

  4.  The focus of the appraisal is cost effectiveness. Our experience is that there is minimum transparency in the way costings are reached making it impossible for patient groups to challenge them, bar obvious mistakes.


  That clarity is improved and resource is made available to aid patient support groups to understand this key data.

  5.  NICE doesn't include the wider cost benefits of treatment in its calculations; such as reduction in dependency on Invalidity and other benefits, improved ability to work (for patients and their supporters).


  That wider cost benefits are considered.

  6.  Although NICE assure us that patients' input is taken into account, this is difficult to assess. The Guidelines suggest what a patient submission should contain, but when no reference is made to it at the first appraisal meeting, it is difficult to decide whether the many hours spent preparing it were worth the cost.


  That feedback is given on the suitability of the patient submission, prior to the first appraisal meeting, so further or more specific information can be prepared.

  Similarly feedback should be given at the end of an appraisal so, in the event of being faced by another one, the charity can learn itself, and also help pass this knowledge to other charities faced with the same issues.

  7.  A key difficulty in our appraisal is the dependence of the Assessment Report on RCTs (presumably under direction from NICE).


  That RCT evidence is balanced by evidence from audits of clinical practice.

  8.  Having recognised that their process was flawed, the NICE Board changed the rules on confidentiality so that appraisals starting after February 2001 would be transparent eg no confidentiality restrictions on provisional thinking. We are one of the last appraisals to be governed by the old rules, and are struggling to persuade NICE to lift the confidentiality restriction so we can let our anxious patients and their supporters know what is happening.

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