1.  SUMMARY

  The comments given are from a patient's viewpoint and based on working as a lay member with NICE for over two years. There are finite resources available in the NHS for the care and treatment of patients. The allocation of these resources must be seen to be fair, consistent and equitable throughout the UK. For any given illness or condition, patients should have equal access to the same treatment and care regardless of their location within the UK. NICE and people associated with NICE, work very hard to produce timely decisions and papers which are fair, consistent and equitable within England and Wales. The NICE consultation process is excellent but inevitably time consuming. Patients' expectations are increasing and they make comparisons with treatments in England and Wales compared to say Scotland that is quoted by the press as having higher levels of funding. Parts of the press fuel any inconsistencies. It is suggested that NICE will come under increasing pressure as people live longer and the more successful the NHS becomes, the greater the competing demands for limited resources. The consequential impact on NICE is discussed including the increasing challenges arising from NICE decisions, the effect of these decisions on public confidence and possible ways of speeding up the publication of guidance.

2.  PERSONAL BACKGROUND

  I took an active interest in health issues after experiencing a heart attack in 2002. I joined the British Heart Foundation Hearty Voices network and I was appointed to the Patient and Public Involvement in Health Forum for the local Hospital Trust. I joined local heart support and cardiac rehabilitation groups. Although retired, I have close contacts with all age groups. To help others, I have written articles on health for the Database of Individual Patient Experiences (DIPEx) and NHS National Genetics. For over two years, I have been a lay member of the NICE Guideline Development Group on Post Myocardial Infarction and a lay member of a NICE Technology Appraisal Committee for six months.

3.  WHY NICE DECISIONS ARE INCREASINGLY BEING CHALLENGED

  3.1  The more successful the NHS is, the more problems NICE will face. In general, businesses welcome more customers but the NHS and NICE will face more problems and more criticism with the increasing number of patients (customers) requiring treatment and care. As a result there are likely to be further increasing demands on the finite resources and a reaction from those losing out.

  3.2  Inevitably, NHS financial resources must be allocated according to need coupled with achieving maximum efficiency and savings in the NHS to effectively create more resources.

  3.3  Allied to this is the progressive increase in expectation of patients and carers. This level of expectation appears to be fuelled by drug companies and charities that are becoming more proactive. Those losing out, shout out.

  3.4  The use of a drug in any country is used as a lever against NICE. In particular, patients frequently quote Scotland, which the press says, has a higher per capita allowance for treatment and care than England. If this is correct, it leads to the question "Why is there not equity of treatment and care in the UK with equal opportunities for all patients regardless of location?"

  3.5  Parts of the press regularly criticise NICE. This criticism is often based on comments from one or two patients and a comparison with the practice in other areas and countries.

  3.6  Unfortunately, NICE may need to divert some resources from patient care towards countering the publicity from pressure groups and this will lead to a vicious circle.

4.  WHETHER PUBLIC CONFIDENCE IN THE INSTITUTE IS WANING AND IF SO WHY

  4.1  Most members of the public are not aware of NICE other than from the Press or media when it is either subject to criticism with glaring headlines or for example, a very short article regarding the introduction of a helpful new guideline. Unfortunately due credit does not seem to be attributed to NICE for the excellent work produced.

  4.2  I talk to many patients and without doubt a major problem is the comparison with treatment and care in Scotland. The press fuels this dissatisfaction by quoting individuals who may move to Scotland in order to get certain drugs.

  4.3  Another patient perception relates to the level of NHS funding between Scotland and England based on press quotes saying the level of funding is higher in Scotland. If this is the case, it is putting patients in England and Wales at a disadvantage. If the funding level is lower in England, then presumably NICE must be at a disadvantage compared to SIGN.

  4.4  Patients, associated charities and the press react particularly strongly to NICE if a drug with a good reputation and in current use is withdrawn from future use for a group of patients.

  4.5  A strong reaction impacting on public confidence in the NHS but not specific to NICE occurs if a drug with a good reputation is not available to patients in some areas.

  4.6  NICE appears to consult fully with all interested parties and gives them an opportunity to comment on decisions.

  4.7  My experience of NICE and those working with it, is a team of very skilled, highly motivated, caring people determined to do an excellent job for patients and the public.

  4.8  NICE has an excellent international reputation.

5.  THE SPEED OF PUBLISHING GUIDANCE

  5.1  Speeding up publications can be achieved in the longer term by increasing the effort applied thus enabling more projects to proceed in parallel or individual projects to be moved quicker. This approach will give long-term benefits but it can be counter productive in the short term due to the required recruitment and training of additional staff. Also, the production level of existing highly skilled staff is often reduced as they become involved with the introduction of new staff. The management workload increases.

  5.2  One trade off is between speeding up the publication of papers by reducing their size, and the time and care spent producing them, against increasing the risk of more appeals, which in turn consume time and effort.

  5.3  Publishing could be speeded up by continuing present initiatives such as:

—  Increase the number of parallel activities on a project thus reducing timescales.

—  Concentrate on the recommendations, particularly key recommendations.

—  Concentrate on significant recent changes to evidence rather than old evidence.

—  Reduce the size of papers, thus reducing the effort to produce and read.

—  Tailor papers to the management of patients and reduce academic type reference material.

—  Increase the international collaboration on drug selection and share the knowledge.

David Thomson

17 March 2007