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What is NICE and how does it work?

 

What NICE is

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.

 

What NICE does

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
 

How NICE works

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.

 

 

How NICE makes a decision

NICE make decisions on whether a drug or treatment should be available 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

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 has approved more than 6 out of 10 (63%) of the cancer treatments it has assessed and 8 out of 10 treatments overall.

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. You can find out more about drug licensing 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 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.

 

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, 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.

 

Scotland and Northern Ireland

There are slightly different processes in Scotland and Northern Ireland.

Scotland

In Scotland the following organisations work in a similar way 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)

This network includes 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 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.

 

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. And there are rules about what can be appealed.

 

Getting drugs before a NICE decision

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. There is more about the cancer drugs fund below.

 

What to do if you can't get a drug

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.

 

The cancer drugs fund

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. If it still isn’t sorted out, you can contact your local authority. From April 2013, 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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Updated: 16 August 2013