APPENDIX 20
Memorandum by The Royal College of Paediatrics
and Child Health (NC 81)
The Royal College of Paediatrics and Child Health
welcomes the opportunity to submit evidence to the above enquiry.
The College's response was prepared following consultation with
a number of senior officers of the College.
1. While most of our comments may be critical,
on balance we feel that NICE should prove beneficial to the Health
Service as a whole.
2. The experience of the College's representative
on the NICE Partners Council leads us to believe firmly that the
procedures followed by NICE attempt to be open and fair, and as
much as possible independent of outside influence. However, a
major difficulty is the implementation gap.
In relation to the specific questions:
Is NICE providing clear and credible guidance?
3. Guidance is usually clear and concise,
but sometimes skates over contentious issues. Many of the problems
do not specifically relate to how NICE is working. If we were
operating in an NHS free of rationing, waiting lists and resource
constraints, then the NICE programme would not fall foul of local
priorities in the way that it currently does. The guidance has
not always been about things that are considered priorities for
health funding by hard pressed local commissioners. As a result,
the guidance has been judged alongside other local requests for
funding and sometimes found wanting. This is probably not clearly
seen at the centre, as many commissioners are naturally shy of
being explicit about this.
4. The guidance on one or two of the drugs
provided by NICE has been difficult to support. Relenza is an
example: it is hard to agree that the evidence supported its widespread
introduction. This has made it harder to get commissioning support
for its recommendations.
5. Without sufficiently robust local clinical
governance it has proved impossible to monitor compliance as NICE
recommends. There has been no funding for the extra clinical time,
support staff and computer systems required to do this. This also
has undermined the credibility of its recommendations.
6. Until recently NICE appeared to have
given no thought to the problems of implementing guidance on large
numbers of interventions. Without a local forum crossing organisational
boundaries and with resources to help put on educational activities
we still are not in a position to ensure that NICE guidance is
implemented appropriately. It is easier with the cancer drugs,
as relatively few doctors in a locality are involved, and the
patient groups very defined.
Has NICE ended confusion by providing a single
national focus?
7. We have no problem with the concept of
central decision making by a national body. However, other groups
have continued to provide alternative guidance, which does not
always agree with NICE Guidance (eg SIGN and the Consumer Association).
Is NICE providing guidance that is locally owned
and acted on in the right way?
8. Lack of local ownership is a major difficulty
in NICE Guidance. It feels very distant from users, and we think
that this sometimes leads to a reluctance to implement.
9. We are not sure how local ownership can
be achieved when NICE is making their guidance compulsory, and
the funding is not separated from the general allocation of funds.
10. When we have even more subjects of NICE
guidance plus their broader management guidelines then we will
be even less able to address their contents. We would argue for
a similar injection of resources into Trusts as has gone into
NICE and CHI in order to allow them to manage the NICE programme
of guidance. Is NICE or anyone else actually monitoring the consequences
of each of its guidance?
11. What should be the role of the College
in promoting NICE guidelines to its members? We could argue that
it is our duty to appraise NICE guidelines when they start appearing,
in the same way that we appraise seemingly evidence-based guidelines
produced by other bodies. Not to do so could be argued to be failing
in our duty of care.
Is NICE promoting interventions with good evidence
of clinical and cost effectiveness, so that patients have faster
access to treatments?
12. We are not aware of evidence indicating
how often NICE Guidance alters practice. Funding NICE Guidance
has been a recurring problem faced by Primary Care Groups and
by Hospital Trusts, and Health Authorities.
13. For example, in the case of ADHD/ADD,
the evidence suggests a large proportion of children who might
benefit from methylphenidate or dexamphetamine are not receiving
it. We do not have the capacity to handle an increase in referrals
for ADHD, so how are children to have faster access to treatments
known to work?
14. The method for determining priorities
for NICE guidance needs to be re-thought. It needs to take greater
account of the impact its guidance will have on local priorities,
and the total resource needed to implement its guidance.
15. If NICE is to work better, then local
clinical governance systems need to be strengthened considerably,
a different method is required by NICE in determining its priorities
so as to avoid distorting local priorities and thought given as
to how to make local implementation work better, including better
methods for predicting total resources needed in an already overstretched
system of healthcare.
The independence of NICE
16. The agenda for NICE is set by Ministers
and it cannot therefore be independent. There is evidence of selection
bias, particularly in favour of cancer and heart disease. There
have been only three Health Technology appraisals relevant to
children, and NICE has repeatedly failed to address or consider
children's needs in relation to appraisals, until reminded, for
example in relation to drugs for obesity and rheumatoid arthritis.
Children must be considered with every submission and only excluded
if it is clearly not relevant to their needs. Lord Hunt's recent
announcement of new statutory obligations for the NHS to fund
treatments recommended by NICE will inevitably lead to greater
central control over the funding of new treatments.
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