APPENDIX 21
Memorandum by The Pituitary Foundation
(NC 97)
We wish the following evidence to be used in
your inquiry.
SUMMARY
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.
Recommendation:
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.
Recommendation:
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).
Recommendation:
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.
Recommendation:
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).
Recommendation:
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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