Select Committee on Health Appendices to the Minutes of Evidence


Memorandum by the NHS Alliance (NC 128)

  1.  The NHS Alliance welcomes the opportunity to contribute to the Select Committee's review of NICE and is prepared to give evidence in person.

  2.  The NHS Alliance is a national membership organisation rooted in primary care and draws its membership from both primary care organisations in the UK and individuals working in primary care. In particular it reflects the critical partnership between lay people, managers and clinicians in planning, securing and evaluating effort to improve the health of local populations. This critical partnership at local level is reflected in the recent policy document "Shifting the Balance of Power" now being implemented in England.

  3.  The NHS Alliance is committed to values of fairness, equity and collaborative working within a structure that is mutually supportive and accountable. Both national and local organisations have an important role to play in delivering those values. NICE is no exception to this.

  The role of NICE is to:

    —  Support frontline clinicians by setting out clearly which new treatments are effective for which patients.

    —  Sort out the wheat from the chaff so that we know which treatment should enter mainstream practice immediately.

    —  To ensure that all parts of the NHS are provided with the most up to date information on what is clinically effective, and what is not.

    —  While ensuring that the services patients get are of a high quality and effective, to help the Government bear down on unequal access to services.


  4.  Essentially, NICE provides a mechanism for the national rationing of health care interventions. It is right that there should be a national role in making these decisions, which involve judgements as to both effectiveness and cost-effectiveness.

  5.  There are serious problems in the current operational arrangements involving NICE. These are detailed below. These are not limited to the operation of NICE itself but include the arrangements surrounding NICE. For instance the arrangements for the selection of items to be subject to a technology appraisal are not within the remit of NICE itself but rather the Secretary of State and Welsh Assembly advised by the Technology Appraisal Group. This paper will comment on this and similar matters.

  6.  There are significant issues relating to the funding of NICE decisions. If there is to be a national input into rationing decisions, which there should be, then the responsibility for funding the consequences of those decisions cannot be delegated satisfactorily to a local level. The current arrangements have the capacity to distort local priorities. In this sense, NICE must take account of affordability as well as effectiveness as well as cost effectiveness.

  7.  The NHS Alliance would argue that there is a need for guidance at two levels. Firstly at the level concerning those interventions, including drugs, that must be made available on grounds of equity to the entire population given the prevalence and incidence of the disease. These should be nationally funded as we understand new products are when recommended by NICE in Wales. The second level represents treatments that may be made available because they are of use, but where decisions would be at the discretion of the local funding authority and subject to local judgement. This would allow for local needs and priorities to be brought to the fore in decision-making. The extent to which local priorities will apply will depend upon the disease area. For example, the prevalence of diabetes in Newham is perceived to be seven times the national average. It is axiomatic that the local emphasis on diabetes will be greater in Newham than in some other areas of the country. NICE guidance is simply too broad brush to be sensitive to local circumstances. In some instances there is anecdotal evidence of NICE supported therapies being suppressed because of local budget pressures.

  8.  There is an emerging tendency for funding bodies to avoid the immediate funding of treatments that are listed in the NICE programme. This is known as "NICE blight". This may result in effective treatments being denied to patients whilst NICE undertakes a review. The Department of Health has issued guidance that health authorities should not use an impending NICE review as a reason to avoid making a decision concerning the use of a particular intervention but in our experience, this is common and is not in the best interests of patient care.

  9.  There is another form of NICE blight. That may occur where an intervention is not on the NICE work programme (decided at a political level not by NICE). This may result in those patients whose conditions are not deemed to be of national priority being disadvantaged. Epilepsy would be an example. In the pursuit of national equity, which the NHS Alliance would support, there is a real danger of producing an even more sinister form of rationing than postcode prescribing—based on whether or not the patient has a "politically correct" disease.

  10.  There is a need for NICE to consider the wider aspects of therapeutic intervention for a specific disease and not just one intervention. For instance, in the area of mental health, it would be desirable to consider the merits of all interventions for the treatment of say, schizophrenia and not just atypical antipsychotics. The narrow approach currently adopted may exclude important treatments such as cognitive behavioural therapy or even complementary therapy. There is a need for NICE to recognise the "opportunity cost" of a particular intervention. For example the relative merits of funding Relenza versus spending the money required on extra nursing hours to visit the frail elderly at risk from influenza.

  11.  Perhaps of greater concern is that NICE have not connected their production of technology assessments (both drugs and non drug interventions) with the issue of treatment guidelines and referral guidance. Such a disjointed approach runs the risk of at best, damaging the credibility of NICE guidance and at worse, producing confusion.

  12.  The credibility of NICE is a matter we understand that the Committee wishes to focus on. The NHS Alliance would observe that NICE does not have universal support and that its credibility has been damaged by perceived U-turns on Relenza, and the shifting of arguments from those of effectiveness to one of pricing in respect of beta-inteferons for the treatment of Multiple Sclerosis. We would draw the attention of the Committee to findings from a survey of Primary Care Organisations undertaken by the NHS Alliance in March 2001.

    —  A significant number (57 per cent) of respondents felt under undue or inappropriate pressure from central priorities. A further 14 per cent specifically cited NICE in this regard.

    —  91 per cent were very concerned or fairly concerned that local prescribing budgets may be affected by NICE.

    —  53 per cent felt it was likely that they would have to restrict other treatments to fund those approved by NICE.

    —  51 per cent of clinicians advised that they felt their clinical decisions may or are compromised by NICE.

    —  78 per cent of GPs responding advised they would not prescribe zanamivir in spite of the guidance of NICE to do so.

  Credibility has been further stretched, we understand, by technical errors in NICE guidance. An example of this would be the suggestion that Relenza be made available through Patient Group Directions when this was not possible as the product was a "black triangle" drug.

  13.  As a result of these problems of credibility and funding together with other issues, the NHS Alliance is aware that the implementation of NICE guidance has been patchy. The government has responded by making the funding of NICE recommendations mandatory. This may simply move the argument from one of funding to one of evidence.

  14.  As has been previously indicated, it is appreciated that NICE do not select items for appraisal. This is in direct contrast with the comparable body in Scotland, the Health Technology Assessment Board. Whoever selects the items for assessment, it is necessary for the process to be more inclusive, transparent and to take account of NHS priorities at the "sharp end" than is currently perceived to be the case.

  15.  NICE is of course a Special Health Authority and is appointed by the Secretary of State and accountable to him/her. Whilst this arrangement continues calls for greater independence of NICE are specious. The NHS Alliance notes that the lack of independence of NICE may damage its credibility with those in the front line of the NHS.

  16.  NICE applies to England and Wales but not Scotland and Northern Ireland. Arrangements are therefore potentially duplicatory and confusing. There should be one body across the UK that gives guidance to the NHS. The position is further confused by the existence of other bodies such as the Scottish Medicines Commission (Consortium?) the All Wales Medicines Strategy Group and the CREST in Northern Ireland. The NHS Alliance is concerned that the existence of so many different bodies may impact upon equity and implementation across the UK.

  17.  Finally, NICE was established not only to give guidance to the NHS and those working within it, but also patients. It does this by including a section on guidance for patients in each of its technology assessments. This is of limited value. NICE should be issuing guidance for patients that is much wider and related to therapeutic areas and not specific interventions. There is an opportunity to advise patients of what they might expect from the NHS, what their responsibilities are, and the relative merits of different interventions that would assist with informed choice and concordance including patient participation in medicine taking. This opportunity is being missed at present

  The NHS Alliance supports the existence of a strong, credible body at national level to issue guidance to the NHS on effectiveness. For reasons both within and outside of the control of NICE, its activities fall short of this and its own objectives. The operating principles of NICE, and the context in which it works, need urgent review and can be improved by addressing the issues identified in this paper.

January 2002

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