What is NICE and how does it work?
This page explains the work of the National Institute for Health and Care Excellence (NICE). There is information about
NICE stands for The National Institute for Health and Care Excellence. It is an independent organisation, set up by the Government in 1999. NICE decides which drugs and treatments are available on the NHS in England and Wales. The All Wales Medicines Strategy Group also makes some decisions for the NHS in Wales. Generally they follow NICE decisions. Scotland and Northern Ireland have separate organisations to make decisions.
The government developed NICE to get rid of the post code lottery, which meant that 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.
NICE’s main responsibilities are to
- Assess new drugs and treatments as they become available
- Provide evidence based guidelines on how particular conditions should be treated
- Provide guidelines on how public health and social care services can best support people
- Provide information services for those managing and providing health and social care
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 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, carers and people using social care services
- Patient and carer support organisations
- Drug companies
The Department of Health (DH) for England and NHS England decide which topics NICE will look at.
NICE divides its guidance into 5 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
- Social care - services to help people with daily life at home, in care homes or day centres
- Quality standards – statements designed to drive quality improvements within a particular area of care
NICE's decisions are made by independent committees or groups. These always include patient or public members (lay members), academics and researchers.
NICE make decisions on whether a drug or treatment should be available based on
- Evidence – NICE reviews each treatment or new technique
- Cost effectiveness – including the quality-of-life-adjusted-year (QALY)
- Contributions from patient organisations, health professionals, experts, and other interested parties
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
Unfortunately, NICE decisions only tend to make the news if they turn a drug down. It's worth knowing that they approve the majority of drugs they assess.
NICE now has a fast track procedure. This 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. We have more information about drug licensing.
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 NICE guidance, usually within 3 months of it being published.
When NICE issues clinical practice guidance, the NHS and health professionals have to decide whether they are already meeting the requirements in the guidance, or need to change the treatment and care they provide.
The All Wales Medicines Strategy Group (AWMSG) also make decisions about which medicines should be available within the NHS in Wales. Like NICE, the AWMSG is a group of specialist doctors, pharmacists, other health professionals, patients and drug company representatives. The AWMSG work with NICE and don’t usually review a medicine if NICE are planning to look at it in the next 12 months. If the AWMSG say that a medicine should not be available and then later NICE decides it should be, the NICE decision is the one that is followed.
There are slightly different processes in Scotland and Northern Ireland.
Healthcare Improvement Scotland (HIS) was set up in 2010. HIS supports the Scottish Government's Healthcare Strategy for NHS Scotland by developing guidance for clinical practice, and assessing and supporting improvement of healthcare. The Scottish Intercollegiate Guidelines Network (SIGN) and the Scottish Medicines Consortium (SMC) are part of HIS.
SIGN develop evidence based guidelines on how particular conditions, including cancer, should be treated. This network includes patients and their carers, health professionals and other professionals involved in caring for people, such as social workers and managers.
The SMC advises the NHS Health Boards about medicines in Scotland. The advice aims to make sure that people have the same access to treatment wherever they live in Scotland. We have more information about the SMC and how it works.
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 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 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.
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.
- 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. And there are rules about what can be appealed.
Your doctor can prescribe a drug for you while NICE are looking at it if your local NHS clinical commissioning group 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
- To make sure you have access to treatment and care wherever you live
You may be able to get funding for a drug that NICE hasn't yet assessed through the Cancer Drugs Fund.
It's always best to talk to your specialist about your treatment first. 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 may help to control your cancer, they can make an individual funding request application to your local clinical commissioning group (CCG). The CCGs have some money set aside for these claims. It will probably take some time and effort, but people do sometimes succeed in getting treatments funded this way. Or your doctor can apply to the cancer drugs fund. You may also find it helpful to contact a patient organisation, as they can often offer help and support. They may know of other people who have gone down this route.
You may be able to get funding from the Government's Cancer Drugs Fund. The aim of the fund is to cover treatment costs for patients for drugs that have not yet been approved by NICE. You will have to go through your own specialist, who will make an application for you.
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 may be able to help you resolve the problem. In Scotland, you need to contact the Patient Advice and Support Service. In Northern Ireland, the Patient and Client Council. And in Wales, you can contact your local Community Health Council.
If it still isn’t sorted out, you can contact your local authority. They should provide (or commission locally) an independent advocacy service which covers the NHS as well as social care and mental health services.
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