What is NICE and how does it work?

This page explains the work of the National Institute for Health and Clinical Excellence (NICE). There is information about

 
 

What NICE is

NICE stands for The National Institute for Health and Clinical Excellence. It is an independent organisation, and was set up by the Government in 1999. NICE decides which drugs and treatments are available on the NHS in England and Wales. Scotland and Northern Ireland have separate organisations to make decisions.

The government developed NICE to get rid of ‘the post code lottery’ - where some drugs and treatments were available in some parts of the country, but not in others. NICE aims to give independent advice about which treatments should be available on the NHS in England and Wales. And to make sure that people have the same access to treatment and care wherever they live.

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What NICE does

NICE’s main functions are

  • To assess new drugs and treatments as they become available
  • To provide guidelines on how a particular condition should be treated

NICE considers whether a treatment

  • Benefits patients
  • Will help the NHS meet its targets, for example by improving cancer survival rates
  • Is value for money, or cost effective

Once NICE issues its guidance, NHS trusts and primary care organisations must find the money to make those drugs or treatments available. NICE doesn’t give any extra money, or advise on how to find the money.

When making decisions, NICE asks for expert advice from

  • Medical and other health professionals
  • Patients and patient organisations
  • Drug companies
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How NICE works

The Department of Health (DOH) for England and the National Assembly for Wales (NAW) decide which topics NICE will look at. Anyone can suggest a topic for NICE. You just need to fill out a form on the NICE website (it’s in the ‘suggest a topic’ section). You can complete the form online, or print and post it.

Making a suggestion doesn’t mean that NICE will look at it. The DOH has guidelines to help them decide which topics to choose.

NICE divides its guidance into 3 main areas

  • Health technology - specific medicines, treatments and procedures
  • Clinical practice - how doctors and nurses should treat diseases and conditions
  • Public health - preventing illness and health promotion
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How NICE makes a decision

It can take 18 months or more for NICE to decide if a drug or treatment should be available. NICE makes its decisions based on

A QALY is a tool that takes into account how a treatment affects

  • Quantity of life
  • Quality of life

‘Quantity of life’ means how long someone lives for. ’Quality of life’ is more about how the treatment affects you. It includes

  • How well you are
  • Whether you can work
  • Whether you can care for yourself

Some NICE decisions have been in the news lately. NICE now has a ‘fast track’ procedure, which aims to make reviews of new treatments and medical techniques available more quickly. All drugs need a licence before doctors can prescribe them on the NHS. With the fast track procedure, NICE can look at some drugs while they are still in the licensing stage, rather than waiting until after they are licensed. This means that NICE can make a decision very quickly after the drug has been licensed. You can find out more about how drugs are licensed in our cancer treatment questions.

The NHS should use NICE guidance as soon as it is published. Your doctors will still use their knowledge and skills to decide the best treatment for you.

Your local area NHS should find the money to fund technology guidance usually within 3 months of NICE issuing guidance.

When NICE issues clinical practice guidance, the NHS and health professionals will need to decide if they are already meeting the requirements in the guidance, or need to change the treatment and care that they provide.

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Scotland and Northern Ireland

There is a slightly different process in Scotland and Northern Ireland.

Scotland

In Scotland the following organisations perform a similar function to NICE

NHS Quality Improvement for Scotland

This organisation provides Health Technology Appraisals for Scotland. Like NICE, they gather evidence and contributions from patient organisations and experts to make a decision about a particular topic.

Scottish Intercollegiate Guidelines Network (SIGN)

The members of this network include patients and their carers, health professionals and other professionals involved in caring for people, such as social workers and managers. SIGN aims to improve the quality of health care for people in Scotland by making sure everyone gets the same, good standard of care.

Northern Ireland

The Department of Health, Social Services and Public Safety (HPSS) in Northern Ireland agreed in July 2006 to link to NICE. This means that they will look at any guidance issued by NICE and decide if it is relevant for Northern Ireland.

If NICE’s guidance isn’t relevant, or if the HPSS decide it’s only partly relevant, they will advise on any changes that need to be made. The HPSS are likely to approve most NICE guidance. The Department usually makes a decision shortly after NICE has made their decision.

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Appeals

Patient organisations can comment on a piece of guidance while NICE are still developing it. There is also an appeals process and those with an interest can appeal against a decision. NICE call these interested parties ‘stakeholders’.

Stakeholders include

  • Patient organisations
  • Health professionals
  • Companies that make any of the treatments for that particular condition
  • Health service providers
  • Statutory organisations, such as the Department of Health and National Assembly for Wales

You have to be a registered stakeholder to be able to appeal to NICE.

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Getting drugs before a NICE decision

Your doctor can prescribe a drug for you while NICE are looking at it - if your local NHS trust agrees that they can. Once NICE makes a decision, it replaces any decision made locally.

NICE don’t licence drugs or new devices. The Medicines and Healthcare products Regulatory Agency (MHRA) does this. Your local NHS decides whether a drug or device should be prescribed. NICE looks at them

  • If there is uncertainty about whether they should be prescribed, and
  • To ensure you have access to treatment and care wherever you live
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What to do if you can't get a drug

First, it's always best to talk to your specialist about your treatment. There may be good reasons why you aren’t having a particular treatment.

If it's a drug that NICE have approved, read the guidance to check exactly who it says should have the drug or treatment. It may be that the guidance says that you should have the drug only after another treatment has not worked, or is no longer working. NICE writes versions of their decisions for the public, which can be easier to read. You can find them on the NICE website.

Points to consider include

  • Is this the best treatment for your cancer at this particular time?
  • Are there any reasons why you shouldn’t have the treatment, for example side effects?

If it is a drug that NICE have not approved, you need to talk to your specialist about it. If your doctor agrees that the treatment would help to control your cancer, you can apply to your Primary Care Trust (PCT) for 'exceptional funding'. The PCT has to keep some money aside for these claims. It will probably take quite a bit of time and effort, but people do sometimes succeed in getting treatments funded this way. You may also find it helpful to contact a patient organisation, as they can often offer help and support. They may know of others who have gone down this route.

After doing all this, if you still believe you aren’t getting the right treatment, contact the Patient Advice and Liaison Service (PALS). There will be one within your local hospital. They can help you resolve the problem. If it still isn’t sorted out, contact the Care Quality Commission. They can investigate the complaint.

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