Select Committee on Health Appendices to the Minutes of Evidence


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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