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Health

Britain's healthcare lottery

Take action

So how do you take action? Who do you talk to? What resources can you use to beat the postcode lottery? Here we offer some suggestions and resources to help you.

1. Get your doctor on your side

Before you do anything else try talking to your doctor or specialist. If they have recommended a drug or treatment, they may be able to help you fight for it. If they can't give direct help they may be able to offer you support and information.

2. Confirm your PCT and what their treatment policy is

You may already know, but you can use this site to find out which PCT looks after your healthcare.

You could also ask at your local surgery, hospital, or health centre.

Find out what your PCT's policy is on providing a treatment by using this website or by writing to your PCT. Under the Freedom of Information Act (2000), all public authorities, including the NHS, PCTs and NICE, have to make available public information. You can write to them directly requesting the information you want.

Our website also lets you compare your PCT against local and national performance rates, on most subjects. Or you can look at the Healthcare Commission's performance data.

Search for information on your condition and your PCT (including their address) from our homepage.

3. Arm yourself with information

Using this website, or NICE, you can check if NICE have issued guidance to doctors and PCTs on the treatment you need.

There are five different types of NICE guidance, with different levels of power:

  • Technology guidance means PCTs are legally obliged to provide funding for a recommended treatment, if the patient is eligible
  • Clinical, interventional and two public health guidelines offer recommendations that the NHS (and PCTs) is expected to follow
  • Use this site to search for your condition or PCT and get information on the NICE guidelines. If there is technical guidance about that condition you can expect those to be followed or you will have a legal case to bring.

4. Strength in numbers

Check to see if there are any charities, nationally or locally, campaigning for your condition or treatment. Their knowledge and expertise can help; any lessons others have learnt from dealing with PCTs are worth making note of.

A good place to start is by contacting the Patient Advice and Liaison Service (PALS) in England, or Community Health Council (CHC) in Wales, either online or through your GP or local hospital.

You can also contact the Independent Complaints Advocacy Services (ICAS) in England, either online or through your GP or local hospital.

This site also has a list of organisations and charities that can help you. Find out more...

5. Beginning your complaint

The first step is to write a letter stating you want to complain about the decision that's been made. Write directly to the Chief Executive of your Primary Care Trust. We have created a basic draft letter for you to apply your own details.

This letter should include:

  • Details of your condition
  • The reasons why your doctor believes this treatment is the best for you
  • Why you should receive it
  • You may want to remind your PCT's Chief Executive of any NICE guidance and NHS Targets.
  • You should also mention the PCT's own policy (the database in this website only covers a specific selection of conditions in England)
  • Note that if a PCT has capped or suspended funding for a treatment that NICE recommends, NICE says the PCT should be able to tell you when they did this, and when they expect funding to be resumed.

6. MPs and Department of Health

If the PCT does not follow NICE guidance then you should also write to the Department of Health and NICE explaining your findings.

You may want to write to your MP. Many MPs have expressed an interest in knowing which PCTs are not delivering treatment and funding according to NICE guidelines.

Your MP may be able to exert pressure to get information, or action, on your behalf.

Charities and advice groups that work on your condition may be able to tell you which MPs have been supportive and what strategies have worked in the past.

Check out our Find out more section for contacts.

7. The law and government

If NICE have published technology guidance recommending your treatment, your PCT is legally bound to fund it if you meet the recommended medical criteria. Use this site to find out if this is the case by searching on your condition where you will find the NICE guidelines.

Also, if you have exhausted all other avenues of complaint (see 8 and 9) and you believe that your PCT has acted unlawfully, irrationally or they don't explain their decision, you may be able to seek legal advice to find out if you can challenge the PCT's decision in court.

You may be able to use judicial review or 'public law principles' which allow you to challenge disputed decisions by public bodies. View a quick guide.

You can contact the Citizen's Advice Bureau or ask a solicitor.

If you are unemployed or on a reduced level of income, you may be eligible for Legal Aid, which means that the legal action will cost you nothing.

The Department of Health advises that you should write to the Chief Executive to remind them if there are NICE Technology guidelines. Also do tell the PCT if you are seeking legal advice, as this may influence their decision.

It is important to note that once you begin legal action you can no longer continue with the NHS complaints procedure. However if you stop legal action you can resume your complaint.

8. Exceptional circumstances/special cases

NICE says you shouldn't need to apply for special case funding, as NHS services should be equal for all. But as we've found, some people have to fight to get the treatment that's best for them.

If the PCT can't show you when funding for a treatment will be resumed, or you are unhappy with their reaction to your complaint, you can apply for treatment arguing that yours is a special case.

PCTs have the power to authorise one-off funding for treatments that they haven't budgeted for in that financial year. These exceptional funding panels can find the money for treatment if they think a patient's circumstances are exceptional, or that they are a special case.

PCTs have individual policies on this, but they have to explain to you how patients can use the exceptional circumstances argument. Their policy has to be fair and be applied fairly.

You will need to write to the Chief Executive of your PCT outlining your condition, the treatment recommended by your doctor, why they feel it is the right treatment for you and then why you deserve it - the special case aspect.

There are some things you need to think about when writing your letter.

  • What makes yours a special case?
  • Are you fit and well, do you have children or grandchildren?
  • If you are declined a treatment, will this affect your ability to work or care for a child, partner or other relative? This could lead to the government having to pay for benefits for a carer to take your place.

9. Unsatisfactory replies: where next

Whether the NICE guidance is legally binding or not, if you aren't happy with the reply you receive from your PCT, you can ask the Healthcare Commission for an "Independent Review" of your case. The Healthcare Commission is an independent body responsible for reviewing complaints about the NHS in England, that haven't been resolved at a local level.

You can request a form from their website, and should include all the information regarding your appeal to the PCT.

Download a draft letter.

If the report you receive from the Health Care Commission is also unsatisfactory (i.e. you don't get funding) you can then take your complaint to the Parliamentary and Health Service Ombudsman. The Ombudsman is completely independent of the NHS and Government and part of their job is to look into complaints about the NHS in England.

10. Getting the media on your side

Raising the profile of your complaint and making it public through the media can add to the pressure on the PCT to provide the treatment. But be warned, this is often a last resort and not every news agency or local paper may find the resources to support you.

  • Find out which media cover your local area. What kind of health stories have they covered in the past?
  • Can someone from a connected charity help you to get your campaign in the news?
  • Think about what it is about your campaign that's different from others'? Are you a victim of a postcode lottery - has the treatment you need, and that your clinician recommends for you, been granted to others nearby or elsewhere in the county?
  • You may want to write to the news editor of your local radio/TV station or newspaper outlining your situation.
  • Talking publicly about your condition and your fight for the right treatment may be difficult and getting the media involved is not for everyone. You may want to ask questions at every stage so that you are clear about what any interviews will involve. Keep notes about what has been said and ask for a copy of any finished article or TV or radio item.

Quotes from programme:

"Where the law says that PCTs have to follow NICE's recommendations and they have to provide the funding for treatments that NICE have approved, that's what the law says. And so if pcts are ignoring or simply disregarding the recommendations of NICE then they're acting unlawfully. "
Yogi Amin, lawyer of Herceptin campaigners
Ann Marie Rogers and Elaine Barker.

David Powell: "The thing I've learned about the National Health is ...you're a case number, and you're nothing else until you make yourself something" and "I'm sure that the pressure we brought to bear on them had a direct bearing on their answer and we've had the answer that we needed and we deserved" and "It's a national health service, it's not a regional or a local health service. It's national "

Sandra Evans: "It just seems to be so unfair. Just that we all should be treated the same. It's so unfair." And "It's been a long fight I never really wanted to speak to any of the media but I just felt somebody had got to do it and I thought just do it"

Deborah Reid: "So I'm thinking right, we're sorted, I'm now going to get the drug and we're off and to then be told, well we have no money, it's like, shit, so you go through all these steps, stages, you go through all these hurdles and then they say, yes you qualify, but unfortunately we can't prescribe you the medication..." and "you get the medication that you deserve, and if you don't then you should bloody well fight to make sure that you do."

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