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, and was 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, in which 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 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
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 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
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
- 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. Since they started, NICE has approved 7 out of 10 (70%) of the cancer drugs it has assessed.
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.
In Wales 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, patient representatives, pharmaceutical company representatives and other health care professionals. The AWMSG work with NICE and don’t usually review a medicine if NICE are planning to look at the medicine in the next 12 months. The guidance the AWMSG issues is interim to NICE guidance. This means that if the AWMSG say that a medicine should not be available and NICE decides it should then the NICE decision is the one that is followed.
There are slightly different processes in Scotland and Northern Ireland.
In Scotland the following organisations perform a similar function to NICE
- The NHS Quality Improvement for Scotland carries out technology appraisals
- The Scottish Intercollegiate Guidelines Network (SIGN) provides clinical guidelines
- The Scottish Medicines Consortium (SMC) gives immediate advice on new medicines when they become available
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.
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.
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.
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.
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
- To ensure 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. There is more about the cancer drugs fund below.
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. Or your doctor can apply to the cancer drug 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 drug 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 to your regional Strategic Health Authority.
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. If it still isn’t sorted out, contact the Care Quality Commission. They can investigate your complaint.
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