Infosheet
Copayments The UK Governments of England, Scotland and Northern Ireland have decided that patients can pay privately for a particular drug that is not available on the NHS and still receive the rest of their healthcare free of charge on the NHS. This new system is referred to as ‘copaying’ or ‘topping up’. Under the previous rules, patients who wanted to pay for treatment not provided on the NHS lost all entitlement to free NHS care. This often included treatments awaiting approval from the National Institute for Health and Clinical Excellence (NICE) in England or the Scottish Medicines Consortium (SMC). This Infosheet provides some basic information about the copayment rules and what they mean practically for patients who may be considering copaying.
What is a copayment? A copayment is a private payment for a drug by a NHS patient. It is usually used to purchase a drug that is not approved for use on the NHS. There are a number of reasons why a drug may not be available on the NHS. The most common reason is because it has not yet been approved by NICE or the SMC, or it has only been approved in a limited set of circumstances. For example, national guidance may approve a drug only as a first-line treatment that a patient needs to use at a later disease stage. Local funding bodies can sometimes be reluctant to pay for the use of a drug that falls outside national guidance. Copayments are mainly intended to allow patients to pay for drugs in such situations. Myeloma UK Broughton House 31 Dunedin Street Edinburgh EH7 4JG Tel: 0131 557 3332 Fax: 0131 556 9785 Myeloma Infoline: 0800 980 3332 www.myeloma.org.uk Charity no. SC 026116 National Myeloma Week 21 to 28 June
Why were the rules changed? The rules were changed in November 2008 in England and shortly after in Scotland and Northern Ireland following a number of highprofile media cases; patients denied access to a drug on the NHS found that they had all of their NHS care withdrawn when they decided to pay for it themselves. After public consultation, it was decided that patients should be allowed to pay privately for a drug without losing the rest of their free NHS care. To make this arrangement work, some safeguards have been put in place to ensure that the NHS does not subsidise private care, and this is explained in the following sections.
How do I go about copaying for a drug? Like all private or NHS patients you need a prescription from a hospital doctor to obtain a drug. If your hospital doctor decides you need a drug that is not approved for use on the NHS and you are considering copaying for it, you should discuss this with your doctor. He or she will advise you about how the process would work in your individual circumstances. Under the copayment system, you are considered as a private patient for the privately purchased drug and you will need a private prescription. If your NHS doctor also undertakes private practice, he or she might be able to issue the private prescription for you. If not, he or she will refer you to a doctor who can. It is important that you discuss with your NHS doctor the changes copaying will have on the way your treatment and care are managed and which other things you might have to pay for, such as tests, nursing care or administration charges associated with the private drug only. Guidance on how to manage the copayment system has been produced for the NHS in England and Scotland. Northern Ireland will shortly produce similarly detailed guidance, and Wales is expected to make a decision on allowing copayments later in 2009.
Will I be treated by a different doctor or in a different hospital? As mentioned above, in order to copay for a drug, you will need a private prescription. This may mean that you need to visit a different doctor from your NHS doctor for the prescription and / or administration of the private drug if your NHS doctor does not also practise privately. You may also need to visit the private doctor for any management issues related specifically to the drug bought privately. Your NHS doctor will be able to advise you on any changes to the way your care is managed. It is a condition of the copayments guidance to the NHS that all private healthcare purchased as a copayment is delivered separately from NHS healthcare. The guidance suggests that this can be done by having the private element of care delivered in a private hospital or a private ward of an NHS hospital. The guidance also says that if both the private and NHS elements of care are delivered in the same NHS setting, these should be done at a separate time. For example, a patient can receive an NHS drug in an NHS ward at one time and then receive the private drug in a separate private ward a few hours later. This ‘rule of separation’ is quite ambiguous and might not always be possible or clinically appropriate in practice.
What extra charges will I have to pay on top of the cost of the drug? When copaying for a drug, patients have to cover the cost of the drug and any tests that relate specifically and only to that drug.
Hospitals may sometimes also charge for administration and acquisition costs of the drugs they provide to copaying patients, and may add a mark-up to the prices. There is no national guidance on how much profit hospital pharmacies can make on privatelypurchased drugs. On the other hand, any routine monitoring, tests and follow-up care that a patient would normally receive on the NHS should continue to be provided for free. It is a good idea to ask for a detailed invoice from the hospital so that all charges are transparent and you can be sure that they are appropriate. Your NHS doctor should be able to advise you if you are unsure about any charges.
What other routes are there for accessing drugs on the NHS? When new drugs are developed they go through national approval processes in the UK to decide whether or not they are effective and good value for money to be used on the NHS. Once nationally approved they are automatically available to use in treating appropriate patients. Drugs that are not yet available or have not been approved for use on the NHS, or that have been nationally approved for use in only limited circumstances, can sometimes be accessed on a one-off basis by doctors making an ‘exceptional case’ funding application to the local NHS Primary Care Trust (England) or Local Health Board (Scotland, Wales and Northern Ireland). Not all applications to Primary Care Trusts or Local Health Boards for drugs, including drugs for myeloma, are successful. This is often because the Primary Care Trust or Local Health Board feels that there is not sufficient evidence to support its use or a requested drug is too expensive. It is often at the point when this route has been completely exhausted that some patients consider the option of paying privately for the drug they need. If you would like to discuss either the national or local processes for making drugs available please feel free to contact Myeloma UK. Myeloma UK has also developed an Information Pack for patients on Accessing Treatments on the NHS. Please call 0131 557 3332 for a copy - or you can download it from www.myeloma.org.uk
How do I find out more information? If you are considering copaying you should speak to your NHS doctor about how it would work and what it might involve for you. You can also speak to the team at Myeloma UK for advice on the guidance, and to ask any general questions you might have about copayments. If you would like to read the guidance to the NHS in England on managing copayments – Guidance on NHS patients who wish to pay for additional private care – you can download it from the Department of Health website at www.dh.gov.uk or contact Myeloma UK for a copy. The Department of Health Additional Drugs Review Team can also answer any questions on the new rules. The team can be reached on 0207 210 5939.
In Scotland, similar guidance has been published - Arrangements for NHS patients receiving healthcare services through private healthcare arrangements. It can be downloaded from www.scotland.gov.uk or you can contact Myeloma UK for a copy. The Scottish Government contact for enquiries can be reached on 0131 244 2235. In Northern Ireland, patients are now allowed to copay but formal guidance is not yet available. Enquiries can be addressed to 028 9052 2258 in the Department of Health, Social Services and Public Safety. Wales will make a decision on formally adopting a system of copayments later in 2009. In the meantime please contact the Welsh Assembly Government Health Department on 029 2037 0011 for information on copayments in Wales.
Other information available from Myeloma UK Myeloma UK has a range of Essential Guides, Infoguides and Infosheets available, covering many areas of myeloma, its treatment and management. To order your free copies, contact the Myeloma Infoline on 0800 980 3332. This information is also available to download at www.myeloma.org.uk To talk to someone about any aspect of myeloma, call the Myeloma Infoline on 0800 980 3332. The Myeloma Infoline is open from Monday to Friday, 9am to 5pm, and is free to phone from anywhere in the UK. From outside the UK, call +44 131 557 3332 (charged at normal rate). Author: Sarah Ritchie, Myeloma UK Issue date: August 2009