Do you want to have a say in healthcare decisions? You can now.

NICE, the independent organisation that makes decisions about treatments and care for the NHS, is looking for 30 members of the public, not connected with healthcare or lobby groups, to have a say in how they decide what the NHS should provide.

They want to find people who are a cross section of life in England and Wales. Everyone, including; working, not working, old, young, from ethnic backgrounds and all abilities, who are prepared to become members of NICE's new Citizens Council. Twice a year, for three consecutive days, they will meet in public and give their views on the challenging issues that are part of how NICE makes its decisions.

Speaking about this new initiative Andrew Dillon, Chief Executive of NICE said: 'We have the best technical experts we can find to give us advice, and we make sure that NHS professionals and patients have their say, now we want to add the voices of the public. The decisions we make touch people's lives and it is important we do our work against an understanding of what the people like your readers think."

The NICE Citizens Council will be the first of its kind in Britain. NICE are determined to get as broad a 'slice-of-life' as possible and are even arranging for childcare and special needs for the disabled. Members of the Council will be paid £150 per day.

Ela Pathak-Sen, the Citizens Council Project Manager said: " Finding a good cross section of the public is important to make this work. We have hired an independent agency to find our first 30 Council members and help them through the meetings". She added: "We don't want the usual suspects - what we want are people of all ages and backgrounds who are prepared to listen and have their say. We want people who have an inquiring mind and some good, old fashioned commonsense."

Application packs can be obtained either by telephoning 0161 839 0385, e-mailing Ruth Turner or by visiting the NICE web site:

Ends

Further information: Louise Fish, 0207 766 9143 or 07775 583 813
Anne-Toni Rodgers 020 7766 9170 or 07860 169345


Notes for editors

The Citizens Council is an innovation to reflect public opinion in the guidance that NICE publishes about the clinical and cost effectiveness of treatments and care for the NHS. Challenging value questions will be addressed by a 30 strong group of men and women drawn from all walks of life.

NICE has prepared, for the public, the answers to some common questions and answers on the Citizens Council. These are available from Nice and will be published on its web site. Large print versions are also available. The questions and answers are provided below for your reference.

 

Some questions and answers about NICE's Citizens Council


1. How do I apply for membership of the Council?

If you live in England or Wales you can apply to become a member of the Citizens Council. NICE is keen to be as inclusive as possible and if you have a disability, or have special needs, such as childcare, we are keen to ensure they should not stop you from taking part.
Telephone: Vision 21 on 0161 839 0385,
E-mail: rt@visiontwentyone.net
Web: www.nice.org.uk

The closing date for applications is Friday 20 September 2002.

2. Who won't be on the Council?

Because groups such as NHS employees, suppliers to the NHS, or patient groups already have a strong voice in making their opinions known in the decisions NICE makes, we would decline applications from anyone in those groups. In addition we would decline applications from those who work in lobbying organisations. We are anxious to give a voice to people who normally find it difficult to have their opinions heard.

3. What is the Citizens Council?

The Citizens Council will help NICE find out what members of the public think about key issues informing the development of the guidance NICE issues on the treatments and care that people can expect in the NHS.

We know that although the guidance we issue about the treatment and care that should be used within the NHS is based on evidence there are key values and judgments on which are decisions are made. We want representatives of the public from all parts of the community to give their views and opinions and provide a backdrop against which we, and the independent Committees that advise us, can produce our guidance.

We already have the experts to provide the technical input and we are now creating an opportunity for a 30-strong group of people, drawn from all groups in the population, to have their say. This will be the Citizens Council.

Council members will be from all age groups, social circumstances, ethnic background and ability, forming a cross-section of opinion. They will be paid (£150 a day when on Council business), meet twice a year in 3-day sessions, and deliberate on questions put to them by the Board of NICE. Their meetings will be open to the public.

4. Why does NICE want a Citizens Council?

Establishing the Council is:

  • First, the fulfilment of a principle established in the NHS Modernisation Plan and a long-term aim of NICE, to involve the wider public in its work
  • Second, as a response to the Kennedy report following the Bristol baby deaths, which recommended more public involvement in making NHS decisions
  • And third, to provide a backdrop of public opinion against which NICE and the independent groups that advise it can make their recommendations.

5. What will the Council do?

As a sub-committee of the NICE Board, it will develop questions that concern the judgments that surround the work of NICE. The Council will consider the questions and make a report to NICE. NICE will then use these opinions to inform its work and the work of the independent groups and experts who develop NICE guidelines and appraisals for the NHS.

6. What are the values Council members will bring?

We want to put a rationale behind the use of resources. In doing so we want to know what ordinary people, who are using, have used or most certainly will use the NHS, think about key parts of the way our decisions are made. In developing their opinions they will bring parts of themselves and their backgrounds to the table - these are their values.

7. Are there some examples of how the Citizens Council might be useful?

NICE deals with some challenging issues. Here are three examples.

  • We were asked to look at where the products that help people stop smoking might add value to the NHS and patients - we recommended that these products should be available only to people who have demonstrated a real willingness to give up smoking.

  • Similarly we were asked to look at where the new anti obesity products could add value to the NHS and patients. We recommended that these drugs should be available only to people who were classed as clinically obese and who had already demonstrated they could lose weight by their own efforts.

  • During an appraisal, we didn't feel comfortable that we had enough evidence to make a blanket recommendation for a particular drug. And so we said that it should, effectively, be used in a nationwide clinical trial to get more evidence, and that the Department of Health should negotiate a more cost-effective deal with the manufacturers.

We think we got those decisions about right and that the wider public would agree with us.

However, as technology advances, some decisions can only get more difficult - for example, decisions about the care people in the NHS can expect; decisions about some new treatments referred to by the press as 'lifestyle' products; or decisions about very expensive drugs that may help someone who is very ill to live just a few weeks longer.

The Citizens Council will:

  • keep us in touch with public opinion
  • tell us their views on issues that could challenge the independent groups that advise us
  • provide a perspective on technical issues such as the levels of evidence we should consider
  • and be there to give us non-technical common-sense advice.

8. What kind of people can sit on the Citizens Council?

The Citizens Council will be made up of 30 members of the public drawn from a different range of backgrounds and coming from all parts of England and Wales.

9. How will Council members be chosen?

The recruitment of Council members is being carried out at arm's length from NICE by Vision 21 -an independent specialist company. Vision 21 will identify people on the basis of the likelihood that they will be able to make a contribution, rather than on their track record of being involved in similar bodies. Council members will have responded to advertisements and widespread publicity.

A separate sheet giving the timetable for recruitment and guidance on how to apply is available with the application form from Vision 21 or from the NICE website.

10. What kind of background is needed to be a Council member?

The selection process is designed to ensure that as wide a cross-section of society as possible is included. It is not necessary for applicants to have had experience of sitting on committees. Selection will be on the basis of a person's potential - regardless of their background or circumstances. The only people prevented from being Council members are those with a connection with the NHS or other groups and companies working within health.

11. How much time will be involved?

Once selected, Council members will be asked to attend an introductory meeting lasting up to 2 days. This is designed to allow them to meet other Council members and to let them know what to expect when taking part in a Council meeting. The Council will then meet twice a year and each meeting will last up to 3 days.

12. What other support will be available?

The Citizens Council organisers will make every effort to provide support to Councillors who need it. For example, when necessary, crèche facilities will be provided for young children of Council members or carers will be arranged for dependants of Councillors. All the venues selected for the Council meetings will have disabled access and hearing loops. Support staff will be on hand throughout meetings to explain things when necessary.

13. Will Councillors get paid?

Yes, they will be paid £150 per day when on Council business and all their travelling and accommodation expenses will be taken care of. Where special facilities need to be provided, such as a crèche or a signer, NICE will pay.

14. Why pay the Council Members?

Each member of the Council will receive £150 per day when on Council business and we will pay all travel and overnight expenses too. We will also provide special facilities such as crèches for young children of Council members. Naturally we will pay the costs of the places we use to hold the meetings and pay the travelling expenses of the expert witnesses. We are also paying the expert organisation to run the meetings. NICE will not be involved in the meetings.

Without making these payments:

  • how else could we balance the Council with an opinion from a single mum on a Council estate, if not by paying expenses and providing childcare?
  • how else could we include a self-employed person if we were not to offer a fee for their time?
  • how else could we be sure that geography plays no part in preventing people from taking part if we are not prepared to meet travel and accommodation costs?'

15. How long will members serve on the Council?

Appointments will be for up to 3 years only. Some people will serve for a year, some for 2 years and some for 3 years.

16. Who decides what topics come before the Council?

A special sub-committee of NICE's Board, in consultation with the rest of NICE, will decide the questions to be put to the Citizens Council.

17. How will meetings be run?

An independent organisation, Vision 21, will run the meetings and produce reports summarising the Council 's views, which will be sent to NICE. Expert witnesses will give evidence on the issues under consideration and Council members will be able to ask them questions. There are likely to be sessions where Council members are asked to form smaller groups and consider particular topics - with the support of Vision 21 staff.

18. Who else might be at the meetings?

All Council meetings will be open to members of the public and to the press and the media, and so anyone from these groups might attend.

19. What powers does the Council have?

The Council's advice will be used to help NICE and the indepenedent Committees that advise it to consider their judgments in in the light of the views of representatives of the general public. NICE is not bound by the Council's advice but it is committed to this type of input - otherwise it wouldn't have set it up the Council in the first place.