The Migraine Trust’s Patient Advocacy Toolkit · 2017-09-07 · Sometimes a migraine sufferer has been experiencing pain long before the symptoms have become so problematic that

© The Migraine Trust 2015 A registered charity in England and Wales (1081300) and Scotland (SC042911)

The Migraine Trust’s Patient Advocacy Toolkit

This document provides information about your rights and the options available to you when accessing treatment on the NHS and how to self advocate if problems occur. Date reviewed: May 2015

Contents

1. Introduction

2. How to make the most of your migraine or headache consultations

3. How treatments become available on the NHS

4. Accessing treatment not available on the NHS

5. How to appeal a negative decision

6. Advocacy tools

7. Further information and resources

research | awareness | information | advocacy

2 © The Migraine Trust 2015 A registered charity in England and Wales (1081300) and Scotland (SC042911)

1. Introduction Migraine is not diagnosed nor treated as often as it should be in both children and adults. It is thought that only half of migraine sufferers get a formal diagnosis and many people treat their own condition without support from a medical professional. But one-third of sufferers will experience significant disability as a result of their migraine at some stage of their lives. The Migraine Trust knows from experience that a lack of proper diagnosis or suitable treatment can stop people’s attacks from being properly managed, the appropriate medication being taken or sufferers taking too much medication. In addition, some sufferers with severe or rare forms of migraine can’t access treatment on the NHS that has been recommended to them by their health professional, often due to the funding decisions of their local healthcare provider. As a result, it is vital that all patients, carers and support groups understand their rights and entitlements and feel able to take informed decisions about their treatment. Purpose of the toolkit This toolkit provides information and support for migraine sufferers, their families, carers and associates, and is here to help people speak up for their rights. The toolkit covers what to expect from the NHS and what to do if the treatment you are prescribed is not routinely available. This toolkit also provides individuals with tools and guidance to enable them to make the most of the options available to them, and advocate for themselves or another person with migraine. If you require further guidance that is not covered by this toolkit you can contact The Migraine Trust via www.migrainetrust.org. This toolkit is not intended to be a substitute for advice from medical or legal professionals. It is not intended to suggest people make particular decisions, but instead provides information about the choices that individuals can make, their rights, and how to exercise these rights.

http://www.migrainetrust.org/


2. How to make the most of your migraine or headache consultations

If you experience migraine, you can receive support for your condition from both NHS primary and secondary care health services. Primary care services are provided by GPs and practice nurses, and are typically based in the community. Secondary care services are provided by medical specialists, typically neurologists, usually based in hospitals or clinics. How to make the most of your appointments with GPs The majority of migraine and headache sufferers can be successfully treated in primary care services. Someone who has migraine can normally expect to be treated by their GP in the first instance. Your GP appointment is likely to last for approximately 10 minutes. In this time, your doctor will assess your symptoms and the effect the pain is having on you to form an appropriate diagnosis. They will suggest treatment if necessary. In order to make the most of your appointment you may wish to think about the following factors in advance: What are your symptoms? There are a number of different headache disorders and migraine is just one of these. In order to help your doctor diagnose you correctly, you should consider whether you feel nauseous when you have a headache; if your headache is recurrent and troublesome; if the pain is pulsating or throbbing; whether you experience any other symptoms; and if, during an attack, you need to avoid light and sound, and can do any physical activity. What impact does it have on you? Make sure your GP understands the impact that the pain has on you. This includes how often you get a headache, whether you have had to miss work or school because of your symptoms, and if you avoid certain situations or make plans for fear of an attack. When did it start? Sometimes a migraine sufferer has been experiencing pain long before the symptoms have become so problematic that they have gone to their GP. Your GP will want to know if there is a family history of migraine, when your headaches started, if you experienced headaches or other pains at school, and if you had recurring stomach problems as a child. What medication are you taking? ‘Medication-overuse headache’ is common and can result from taking too many painkillers. It can occur in addition to migraine and therefore makes diagnosis difficult. For example, if the box for a tablet says ‘take no more than eight in 24 hours’ and a sufferer takes four every day they might well feel that they are inside the safe and wise dosage. However, most of these medications are not intended to be taken up to that amount every day. To help your doctor to assess your headaches let him/her know which medicines you are taking and how often, even if this is a recommended dose of a prescribed or over-the-counter medicine.


What triggers your migraine attacks? Many people find that by making some lifestyle adjustments, they can reduce the number of their attacks. This process can be quite complicated as people rarely have just one trigger factor. In most cases, there is an accumulation of trigger factors, which may include stress, changes in sleep patterns, missing a meal and hormonal changes in women. You may already have identified some possible triggers in advance so make your GP aware of these. For more information about triggers please visit www.migrainetrust.org. It may be useful to take notes along to your GP appointment to ensure that you give him/her a full picture of what you are experiencing. A migraine diary is a useful tool for identifying the frequency and duration of your headaches. Further guidance on keeping a diary and templates can be found on The Migraine Trust website www.migrainetrust.org. You may also want to write down some key questions to ask your GP during the appointment. Following your appointment Your GP’s time is limited and you may have further questions and concerns following your appointment. The Migraine Trust’s Information and Enquiry Service (see our website for details) can help with questions you may have about migraine, other headaches and their management. You may also find what you are looking for on our website www.migrainetrust.org. All our information is based on the best available evidence and checked by some of the UK’s leading clinicians and researchers working in the field of migraine and headache. Please note that we cannot give individual medical advice or diagnosis. Pain can be very difficult to diagnose as it is subjective and can affect people in different ways. You should be prepared to visit your doctor on more than one occasion to discuss your migraine/headaches before you receive a diagnosis. You may need to try different medication, treatments and lifestyle changes before you find a way to manage your condition. To ensure your condition and treatment can be effectively monitored it can be beneficial to see the same GP each time. If you would like to change your GP you can request this within your current practice by informing the surgery’s reception. Alternatively, you can contact your local Clinical Commissioning Group or CCG (if you live in England), Health Board (in Scotland or Wales) or Health and Social Care Trust (in Northern Ireland) to find details of GPs and practices in your area. It is your right to change your GP and you do not have to provide a reason for changing. Referral to a specialist Many people with migraine manage their condition with the support of their GP. However, approximately 2-3 per cent of patients presenting with migraine symptoms are referred by GPs to a neurologist for more substantial treatment. If you feel that your condition requires further support than you can get from your GP, you can request a referral to a headache specialist. This may involve you visiting a migraine or headache clinic. However, despite migraine being a common condition, there are few specialist headache and migraine clinics in the UK.





What is a migraine clinic? A headache or migraine clinic specialises in the diagnosis and treatment of migraine and head pain. The clinics are often linked to a neurology department in a hospital and are directed by a consultant neurologist or doctor with a particular interest and expertise in migraine. A migraine clinic can confirm a diagnosis of migraine, review your current treatment and suggest ways in which you can manage your condition. The clinic staff build up a wealth of expertise on the types of migraine and other headache disorders, treatments and will often be able to call upon the services of other experts. Does everyone with migraine need to attend a clinic? If you do not respond well to treatment or if your migraine attacks are not being well managed, further investigation may be needed. The reasons your GP may refer you on to a specialist clinic include: • doubt over the diagnosis of migraine • a rarer form of migraine may be suspected • other headaches besides migraine are present and may complicate your

diagnosis • the treatment is not working well for you • your migraine attacks or headaches are getting worse/more frequent • at your request How can I be referred to a migraine clinic? All NHS migraine clinics will require a letter of referral from a medical practitioner before they will accept a new patient. This is most likely to be your GP but could be a hospital doctor or other healthcare professional within the NHS. The Migraine Trust has a template for a GP to refer a patient to King’s College Hospital, London, which is one of the country’s leading treatment centres. You can find this on our website www.migrainetrust.org. Do the clinics have long waiting lists? The number of new patients that a clinic can see depends very much on the number of staff they have and their opening times. The majority of clinics in the UK are open for a few hours per week and most have a waiting list. For most people, the first appointment will take a few weeks, although some clinics have waiting lists of several months.



How should I prepare for my first visit? A migraine diary Before you attend the migraine clinic for your first appointment, it is worthwhile to keep a diary of your attacks. Keeping a record of these can be very helpful in assisting the doctor to have a clear picture of the migraines. This is also important because, as there is no specific test to diagnose migraine, much will be based on your description. You can find a migraine diary on our website at www.migrainetrust.org. Medication record The doctor will need to know the names and doses of any medication you have tried previously. This should include herbal remedies and complementary treatments (such as acupuncture, homeopathy and herbalism) that you have tried. What will happen on my first appointment? Your first visit to a clinic is likely to be much longer than the time you would usually spend with your GP. The doctor at the clinic will need to take a detailed history about your condition including your medication (both prescription and over-the-counter drugs), any complementary or alternative remedies you are taking, when your migraine attacks started, how often they occur and what symptoms you experience. The doctor will ask about the ways in which you have taken your drugs – whether they have been in tablet form or through inhalers, injections or suppositories. You will probably have a physical examination. However, this is often limited as history is the main source of information on which your doctor will be able to formulate a diagnosis and suggest appropriate treatments. The examination may provide important clues for the doctor. An awkward posture or tenderness in the muscles at the back of the neck, for example, is important to note as they may be contributing to your migraine. During your first visit, you should ask questions about your condition as this may save you unnecessary worries after your visit. What treatment will I be offered? The complex nature of migraine means that the treatments available differ from person to person. There is currently no cure for migraine. Once the diagnosis of migraine has been confirmed, the clinic staff will be able to suggest ways in which you can manage the attacks. This may involve new medication, advice on lifestyle, suggestions on how to cope with your symptoms and the self-management of your particular experience with migraine to help minimise its impact on your everyday life. There are no standard treatments for migraine but a number of options. The doctor may prescribe 'acute medication' to take when the attacks start, and/or 'preventative



medication', which is taken regularly to lower the chances of having migraine attacks, and reduce the severity of the attacks when they do occur. The doctor should let you know about the available acute and preventative treatments. S/he should also be able to advise what would be the best option in your case, taking into account your preferences. Follow up visits In the vast majority of cases, it is possible to make a diagnosis of migraine during your first appointment. However, it may take a few visits and involve keeping a detailed diary. If it turns out that you do not have migraine but another condition, you should be referred to suitable services or health professionals. Once a diagnosis is made, clinics should give you a detailed treatment plan for you and your GP, and you will be discharged with support through a telephone consultation with a specialist nurse. The clinics might invite you for a few visits, although many people find they then can manage their own condition, and do not need to return. You can of course be referred again if the need arises. After your visit, the clinic will write to your GP to tell them about any treatment that has been suggested and keep them informed of any progress you make. You have the right to ask for a copy of the letter. How can I find out about local clinics? The Migraine Trust provides information about all known migraine and headache clinics in the UK. It also has a list of hospital neurology departments with special expertise or interest in headache and migraine. For information please visit www.migrainetrust.org.



3. How treatments become available on the NHS

Health professionals will recommend treatments for you based on your specific circumstances, the evidence about what treatments are effective, as well as their professional experience and judgement. If you have been recommended a treatment by your GP or neurologist, and would like more information you can contact The Migraine Trust’s Information and Enquiry Service or visit our website www.migrainetrust.org. Sometimes your GP or neurologist may recommend a treatment or drug that is not routinely available on the NHS. This is more likely to happen if you have a rare form of migraine, or if other treatments have not worked for you. Why wouldn’t a treatment be available on the NHS? (a) The treatment is not currently licensed Drugs require a national or European licence before they can be legally prescribed in the UK. The two official bodies that can license these drugs are the European Medicines Agency (EMA) for a Europe-wide licence, and the Medicines and Healthcare Products Regulatory Agency (MHRA) for a UK licence. These bodies undertake an evaluation and assessment of the scientific evidence for a particular drug's effectiveness. They also consider safety and health standards when granting a licence for a drug to be 'marketed' (i.e. sold). When a product receives 'marketing authorisation', it must then be launched in the UK by the drug’s manufacturer before it can become available to patients. (b) The treatment has been licensed but not approved for use When a drug is first licensed, patients may not be able to access it easily. Many local health providers1 will wait for further research and evidence into the effectiveness, safety and side effects before providing funding. Often, only certain patients will be eligible for access to drugs or treatments at this stage. This may be through the NHS or private health care. Moreover, while a drug may be licensed for use in the UK, this does not mean that it will be funded by the NHS. The local health provider will generally not make a drug or treatment available unless the drug has been approved by the national bodies which decide what treatments should be paid for by the NHS. In England and Wales, the approval body is the National Institute for Health and Care Excellence (NICE, see www.nice.org.uk). In Northern Ireland, the Department for Health, Social Services and Public Safety reviews NICE recommendations before applying them locally (see www.dhsspsni.gov.uk). In Scotland the body responsible for issuing guidance on all newly-licensed medicines is the Scottish Medicines Consortium (SMC, see www.scottishmedicines.org.uk).

1 There are different names for organisations which commission and provider health services in the

different countries of the UK. These are Clinical Commissioning Groups in England, Health Boards in Scotland and Wales, and Health and Social Care Trusts in Northern Ireland.


http://www.nice.org.uk/

http://www.dhsspsni.gov.uk/

http://www.scottishmedicines.org.uk/


What is NICE? NICE is an independent organisation responsible for providing national guidance on promoting good health and preventing and treating ill health. NICE determines which drugs and treatments are available for patients on the NHS based on the evidence available regarding its effectiveness, safety and cost effectiveness. Clinical guidelines and public guidance published by NICE do not apply in Scotland.

Sometimes NICE or the SMC will not approve a treatment for use, but it will still remain a legally-licensed product in the UK. As a result, patients may be able to access the treatment privately, but they will need to pay the cost of the treatment themselves. For instance, in January 2014 NICE approved the Spring TMS®, a single pulse transcranial magnetic stimulation device (sTMS) for treatment and prevention of acute and chronic migraine (with or without aura) in adults in an NHS setting, strictly under the direction of doctors specialising in managing headaches2 (NICE Guidance 477). As yet, there is no available funding for this treatment in the NHS, patients who are prescribed this treatment have the option of privately funding it by themselves or must apply for exceptional funding from their health provider (CCG). Occasionally, it can take a long time for guidance or approval to be issued on specific treatments, and decisions for different countries may come at different times. This is because approval bodies deal with huge quantity of requests. This can cause frustration for medical professionals and patients seeking these treatments. It can also be the case that NICE approves a treatment for use in England and Wales, but the SMC does not approve the same treatment in Scotland, or vice versa. This can mean that the same treatment may be available on the NHS in one nation in the UK, but not in others. For instance, NICE has recommended that botulinum toxin type A (Botox®) may be prescribed on the NHS for the prevention of chronic migraine in adults, as long as specific criteria are met (technology appraisal TA260). However, the SMC advised NHS Scotland not to offer Botox to treat chronic migraine in adults in Scotland. As a result, the treatment is only available in England and Wales. NICE and the SMC do not provide funding for treatments that they approve. In most circumstances, it is the duty of the local health provider to find the money to provide this treatment for patients.

2 GammaCore® is another non-invasive vagus nerve stimulator (nVNS) that is being tested for the

treatment and prevention of primary headaches and migraine. It is still at trial stage and has not been reviewed by NICE.


4. Accessing treatment not available on the NHS If a treatment has been recommended by your health professional for the prevention and management of your migraine but is not readily available in the NHS, you may still be able to access the treatment through other means. Self-funding You could consider funding the treatment or medication yourself if you are able to afford it. You can speak to your neurologist about this if it is an option for you. They may be able to carry out the treatment themselves or recommend a private clinic. Treatment can be very expensive and it is therefore not a viable option for everyone. Request for special/exceptional funding If the treatment or medication that your specialist has recommended is licensed but not yet approved for use in the NHS you may wish to consider making a request to your local health provider (CCG, Health Board or Health and Social Care Trust depending in which part of the UK you live) to fund the treatment in your individual circumstance. Depending on your health provider this may be referred to as an individual, special or exceptional funding request. Your GP/neurologist should be aware of the terminology used by your health provider and can provide you with advice around the matter. As an NHS patient you are entitled to make such a request to your health provider and they must consider it. Funding will be dealt with on a case-by-case basis (health providers are not allowed to put a blanket ban on a treatment that is licensed). The application process can be long and stressful but your health provider is obliged to consider your request and can result in you receiving the treatment if funding is granted. How to request special/exceptional funding from your health provider Your health provider will have its own policies and procedures which must be followed when applying for special funding for a treatment and they will provide you with the information about how to submit such a request directly. You may also wish to access the health provider’s Prescribing Medicines and Management Strategy to understand its position. It is important to read all relevant information in order to understand the process that you and your consultant will need to go through and the criteria against which your request will be assessed. Your consultant will need to submit an application directly to the health provider on your behalf. How to go about this will be outlined in your individual health provider’s procedures but will normally require an application form or a letter. It is important that the best possible case is made in support of your application on medical grounds. Your consultant will need to present information about the treatment including clinical data, evidence of exceptional effectiveness and cost of treatment.


They will also need to explain the nature of your condition and why the treatment is necessary for you, ensuring that they meet the criteria outlined in the health provider’s policy. You and your consultant will be required to demonstrate how your case is ‘exceptional’. ‘Exceptional’ does not mean ‘unique’. You are not expected to prove that you are the only person requiring this treatment. Your health provider may define what is deemed ‘exceptional’ in their policy. Although personal information and lifestyle impact may be useful to demonstrate the effect that migraine has on you, the decision about whether to fund the treatment will be based on the medical and cost benefits against the health provider’s budget. Your consultant will need to submit all supporting evidence with the request and this can include your medical records, details of any other specialists or second opinions. You can request for your GP/neurologist to copy you into all correspondence with the health provider to ensure that you are fully informed at all stages of your application. Your application will be considered by a panel and the evidence submitted will be assessed. In some circumstances you or your neurologist may be invited to the meeting although often health providers do not allow individuals to attend. You and your consultant will be informed of the health provider’s decision. The Migraine Trust’s position on access to treatment Where there is strong clinical evidence to support the use of such treatment in the prevention and management of migraine, and a patient has a recommendation from a suitably qualified health professional, The Migraine Trust supports that individual’s right to access such treatment in the NHS in the UK.


5. How to appeal a negative decision If your request is refused you are able to appeal against the decision. Your health provider will have an appeals policy and you can request a copy. You must initially write to the health provider appealing against the decision. Details of who to address this to should be available in the policy. The health provider will then consider whether you have grounds for appeal and, if so, will refer your case on to an appeal panel. Your letter must provide evidence and reasons why the original decision was unsound. This may be because the panel did not properly adhere to the special/exceptional funding policy or failed to appropriately consider the available information and evidence. It is not enough to appeal on the basis that you disagree with the decision. You must be able to justify your argument for the health provider to review the refusal. It is important to have a copy of the funding refusal letter so that you can appeal directly against the reasons outlined for the refusal; these must be addressed clearly in the appeal letter. New evidence can normally be submitted at an appeal (updated clinical evidence may be an example) and you are able to appeal against the health provider’s procedure in handling your case, as well as the rationality of its decision on the basis of the information/evidence provided. You can also appeal if you feel that the health provider has acted unlawfully. It is important that you have access to all information which was considered by the panel as well as full details of the procedures that were followed. This can help you to structure your appeal. You can access this information by submitting a subject access request under The Data Protection Act 1998. A request under the Act can allow you to see records and relevant information about you that is held by an organisation. You could also ask for any other information that the health provider has which is relevant to your case but which is public, rather than private information. This may include details of the health provider policy, data regarding the health provider size and so on. You have a right to request access to this information under the Freedom of Information Act if you live in England, Wales or Northern Ireland or under the Freedom of Information (Scotland) Act 2002 if living in Scotland. For further advice please visit The Information Commissioners Office www.ico.org.uk. Subject Access Request under The Data Protection Act 1998 In order to access personal data from any organisation you must request this in writing (by post, fax or email). The Act allows the organisation to charge you a maximum of £10 for electronic records or £50 if you are requesting to see paper-based health records. Each organisation will have its own costs. The organisation has up to 40 days to respond to you with the information from receipt of the request and fee. In certain circumstances a request can be lawfully denied.

https://ico.org.uk/


Information Request under The Freedom of Information Act 2000 / Freedom of Information (Scotland) Act 2002 To make a request you must write to the health provider directly (by post, fax or email) and include your name and details of how it can respond to you. Before requesting information try to find out if this is already available, for example by looking on the website. You do not have to mention the Act specifically but it can be helpful to do so. You do not have to explain why you want the information. The health provider has to reply to you within 20 days of receipt of your letter. In certain circumstances a request for information from a public authority can be lawfully denied. Information to request The following documentation, requested under the specific law below, may be useful for you to view when reviewing and appealing a refusal to fund your treatment. This can help you to understand and challenge any discrepancies of the decision making process in your appeal. You may already have some of this information from your original application. Subject Access Request under the Data Protection Act 1998 • The original application the health provider received from your consultant • All documentation received by the panel in relation to your request for funding • Full minutes of the meeting(s) to consider your request, including the date • Details of the professionals who sat on the panel, including information about

their relevant qualifications, professional knowledge and experience of migraine • Details of which professionals will sit on the appeal panel and whether a

neurologist with experience of treating migraine will be present Information Request under the Freedom of Information Act 2000 / Freedom of Information (Scotland) Act 2002 • Health provider’s full Prescribing and Managing Medicines Strategy • Health provider’s Individual/Special/Exceptional cases funding policy (name will

vary by health provider) • Data regarding the population base for the health provider area • Information documents about the treatment/drug that you are requesting funding

for which the health provider used to inform its decision making • Health provider’s data on the number of requests for funding of this treatment

made • Health provider’s data on the number of requests for this treatment which were

accepted and denied As appeals are normally time-limited and, because there can be a charge for subject access requests, it is advisable to ask for all the information that you may need at the same time and be specific as to what you want. If they are unsure of what you wish them to provide they may need to contact you again. Where possible send the


letters to a named person (you can contact the health provider to find out who this is). Request confirmation that the letter has been received and inform them that this information is essential for you to submit your appeal. State on the letter the time limit and date for submitting your appeal so that it is clear that a prompt response is required. You may want to request that the documents are sent to you both electronically and in hard copy form. Keep the letters simple and to the point as you do not need to say why you want the information. Template letters can be found at the end of this toolkit. You may wish to copy your neurologist or other relevant professionals into the letters and keep a copy for yourself to ensure that all parties are informed. Depending on your health provider’s policy either you or your consultant may submit the appeal. If you are responsible ensure that you include supporting letter from your GP, neurologist and any other professionals involved in your healthcare. A supporting letter from your local elected representative (see Advocacy Tools below) may also be helpful. A template letter is available in this toolkit. After your appeal has been submitted The appeal panel will review your case. If you have grounds for appeal they will either: • Decide to overturn the original decision and award funding • Allow a hearing to be made to a fresh appeal panel Each health provider’s policy will vary. In some instances you or your consultant may be able to attend an appeal hearing in person. The health provider will write to you and your consultant regarding their decision. What to do if your appeal is unsuccessful If your appeal is unsuccessful you do not have to stop there. Depending on your individual health provider’s policies you, or your neurologist, may be able to submit a further appeal with new evidence to support your case. Or, if new evidence about the treatment/medication has been published since your initial request, you may choose to submit a new application to the health provider. If you feel that the process has been unjust you can consider submitting a formal complaint to the Chief Executive of the health provider who may review the information and circumstances of your hearings to make a final judgement. In England, the Patient Advice and Liaison Service (PALS) can provide information and support around making a complaint – for information visit www.nhs.uk. However, while there may be local organisations that can help you, there is not an equivalent

http://www.nhs.uk/


to PALS in Wales, Scotland or Northern Ireland (see Further Information and Resources section). You may also want to consider writing to your local elected representative (see Advocacy Tools below) or local media for support and to raise awareness amongst your community of the barriers to treatment for migraine sufferers in your area. Judicial review You may have grounds to take a case against your health provider to a judicial review. This is a court in which a judge reviews whether a public body has acted lawfully. They are able to consider whether the actions and procedures that the health provider have followed are unlawful but are not there to decide whether the decision not to fund your treatment was right or wrong. Therefore, this may not be appropriate action in all cases. If you are considering taking a case to judicial review you should seek legal advice.


6. Advocacy tools Template letter: Subject Access Request under the Data Protection Act 1998 ………………...…. ...health provider address…. …..……………….. …….date ……… Dear…Name of health provider Chief Executive/person responsible for requests... Re: Your Name, address, date of birth, NHS Number I am contacting you to make a subject access request under the Data Protection Act 1998 for any personal information you hold about me in relation to my request for special/exceptional (copy wording used in health provider policy) funding for …name of treatment... for my migraine condition. I would like this to include: 1. …include all required documentation………. 2. ………………………………………………… 3. ………………………………………………… I understand that you have 40 days to process this request. This information is essential for my appeal against the refusal to provide special/exceptional funding for …name of treatment… Therefore, I request that you please confirm receipt of this letter and, if possible, inform me of the expected time for this request to be processed. I am aware that there may be a charge for this request so, due to the time limitations of my appeal, if this is required please contact me on (phone/email) to ensure I can provide it immediately. Thank you in anticipation. Yours sincerely …Your name……….. cc: …………consultant/neurologist/solicitor/advocate, etc……………………..


Template letter: Information Request under the Freedom of Information Act 2000 / Freedom of Information (Scotland) Act 2002 .......Your address… .…………………… ……………………. …health provider address…… ……………………. ……………………. ……date…………. Dear …name of health provider’s Chief Executive… Re: Information request under the Freedom of Information Act 2000 / Freedom of Information (Scotland) Act 2002 (delete as appropriate) to …full name of health provider … I am writing to request information related to ………..….treatment………………… held by …full name of health provider … Under the above Act I would like the <insert full name of health provider> to provide me with the following information: 1. ...................................... 2. ………………………….. 3. ………………………….. Please provide me with this information electronically to …email address…/in paper form to the address at the top of this letter (delete as applicable). I look forward to hearing from you within 20 days of receipt of this letter with the above information. I would be grateful if you could acknowledge receipt of this letter to my email address/postal address (delete as applicable). Yours sincerely, ……your name….. cc: ……..consultant/neurologist/solicitor/advocate, etc……..


Requesting support from your elected representative and patients’ boards Contacting your elected representative or local patients’ boards can be a powerful tool in getting your voice heard. Your MP represents you and the rest of your local community in parliament and therefore has a duty to listen to you. In Wales, Northern Ireland and Scotland, where running of the NHS is the responsibility of the devolved governments, you may also benefit from contacting your local: • Assembly Member (AM) in Wales • Member of the Scottish Parliament (MSP) in Scotland • Member of the Legislative Assembly (MLA) in Northern Ireland For ease, the overall term ‘elected representative’ will be used below but these actions apply equally to MPs, AMs, MSPs, and MLAs. The patients’ boards are national independent consumer champions in health and care. They ensure that NHS providers take account of patients’ views when they make decisions about health services. You may follow their complaint procedures as provided. The patients’ boards have varying titles and responsibilities in the different nations of the UK. They are the local Healthwatch Board (in England), the Community Health Council (in Wales), Scottish Health Council (in Scotland) and the Patient Client Council (in Northern Ireland). You may wish to raise with your elected representative or patient board the inequalities regarding funding for migraine treatment and research. Alternatively you may wish to request your elected representative supports your individual funding request or appeal by writing to your health provider directly. 1. Find the contact details of your local elected representative: details are

available from sites such as www.theyworkforyou.com. Alternatively, you can contact the national legislature in your country for their details.3 For instance, if you are not already aware of your local MP’s name you can find this out by visiting the House of Parliament’s website at www.parliament.uk/mps-lords-and-offices/mps. Alternatively, you could contact the House of Commons information office 020 7219 4272 or your local council office.

2. Write a letter to your elected representative: write a letter outlining the challenges you are facing as a migraine sufferer and request their support. There is a template letter included in this toolkit below that you may want to use. This is

3 National legislatures are the elected bodies with the power and responsibility to make laws for a

country. In the UK, these bodies are: the Houses of Parliament (for laws applying to the whole of the UK, including England) based in London, the Northern Ireland Assembly, the National Assembly for Wales and the Scottish Parliament. Health policy is a ‘devolved responsibility’, meaning that the

specific legislatures control and make decisions about the NHS in each country. As a result, laws and policy relating to health passed by the Westminster Parliament only apply to England, those passed by the Scottish Parliament apply to Scotland, and so on.

http://www.theyworkforyou.com/

http://www.parliament.uk/mps-lords-and-offices/mps

http://www.parliament.uk/mps-lords-and-offices/mps


based on a request for support to access Botox® for the treatment of chronic migraine. If you would like information regarding another migraine treatment that you have been recommended in order to write your letter please contact [email protected]. You may wish to include copies of correspondence you have had with your health provider.

To write to your elected representative, ideally it will be best to send your letter to their constituency office. You can find details of each office via the links above. Alternatively, you can write to them at their offices at the national legislature. For instance, for MPs you could write to their House of Commons address: [Insert name] MP House of Commons London SW1A 0AA

3. Meet with your elected representative in person: you may wish to meet with your representative to discuss your situation and request their support directly (it can still be helpful to have first sent a letter. You can visit their constituency office during their ‘surgery’ hours, which you can find out by calling their office or checking their website.

4. Make a follow-up phone call: a phone call to follow up your meeting or letter can help reinforce the urgency of your request for support. If you are unable to speak to them directly request a timeframe in which you can request a response.

mailto:[email protected]


Template letter: to elected representatives …..Elected Representative’s Name…… …Elected Representative’s Address….. Dear …Elected Representative’s Name……. I am writing to request your support as my MP/MSP/MLA/AM (delete as appropriate). I am a chronic migraine sufferer who has recently been denied access to the treatment Botox® (Botulinum Toxin type A) by ……………… ……………………. health provider Botox® (Botulinum Toxin type A) was granted licence as a preventative treatment for adults with Chronic Migraine by the Medicines and Healthcare products Regulatory Agency (MHRA) in July 2010. The British Association for the Study of Headaches (BASH) and The Migraine Trust support the notion that all licensed treatments for migraine should be made available to patients on the National Health Service including Botox® for Chronic Migraine. Chronic Migraine is the most disabling subtype of migraine. I suffer from approximately …x number of…….. migraine attacks a month. This impacts on ……my family/ability to work etc……………… and has a detrimental impact on my quality of life. This treatment has been recommended as the most suitable form of treatment by my physician …… name ………, a neurologist with a special interest in headaches. I am aware that funding for this treatment has been made available to other chronic migraine sufferers in the country. I seek your support in appealing to … health provider…. to review the decision to deny me access to a treatment that has been recommended by my neurologist. As a member of your constituency I would be very grateful if you could raise these concerns with ………Health provider Chief Executive Name….. at Health provider address………… I look forward to your response and thank you in anticipation. Yours sincerely, …..Name……….


7. Further Information and Resources UK wide The Patients Association A national healthcare charity which provides information, advice and guidance to help patients in the UK to exercise their rights and make the most of their healthcare www.patients-association.com Tel: 020 8423 9111 Fax: 020 8423 9119 Post: The Patients Association, PO Box 935, Harrow, Middlesex, HA1 3YJ Citizen’s Advice Bureau The Citizen’s Advice Bureau provides information about individual’s rights in the UK, including as an NHS patient. Local CABs may be able to provide further support and can be located through the main website. www.adviceguide.org.uk Direct Gov The Directgov website gives a wide range of information about government services including disability rights information, the UK legal system and the NHS. www.direct.gov.uk Information Commissioner’s Office The Information Commissioner’s Office is the UK’s independent authority set up to uphold information rights in the public interest, promoting openness by public bodies and data privacy for individuals. It provides details about the Data Protection Act 1998 and The Freedom of Information Act 2000 and the rights of individuals and organisations under these acts. Tel: 01625 545745 or 0303 123 1113. (Helpline) Post: Wycliffe House, Water Lane, Wilmslow, Cheshire SK9 5AF www.ico.org.uk Theyworkforyou.com A website dedicated to helping citizens find out more about their elected representatives, and the work of the national legislatures. You can find and contact your local MP, MLA, MSP or AM through the website. www.theyworkforyou.com

http://www.patients-association.com/

http://www.adviceguide.org.uk/

http://www.direct.gov.uk/

http://www.ico.org.uk/

http://www.theyworkforyou.com/


Country specific Wales The Community Health Council The Community Health Council helps ensure that patients’ views and needs influence the policies and plans put in place by health providers in your area. www.wales.nhs.uk/sitesplus/899/home Tel: 0845 644 7814 / 02920 235 558 Post: Board of Community Health Councils in Wales, 3rd Floor, 33 - 35 Cathedral Road, Cardiff, CF11 9HB. Scotland Scottish Health Council The Scottish Health Council is responsible for ensuring NHS Boards take account of patients’ views when they make decisions about health services in Scotland. The Council has established offices in each NHS Board area. Scottish Health Council National Office, Delta House, 50 West Nile Street, Glasgow, G1 2NP Telephone: 0141 241 6308 www.scottishhealthcouncil.org/home.aspx Scottish Medicines Consortium The Scottish Medicines Consortium (SMC) is to provide advice to NHS Boards and their Area Drug and Therapeutics Committees (ADTCs) across Scotland about the clinical and cost-effectiveness of all newly licensed medicines, all new formulations of existing medicines and new indications for established products. www.scottishmedicines.org.uk Post: Delta House (8th floor), 50 West Nile Street, Glasgow, G1 2NP NHS 24 NHS 24 provides comprehensive online information about the NHS including detail of local services. www.nhs24.com Northern Ireland The Patient Client Council, Northern Ireland The Patient Client Council is your independent voice on health and social care issues, helping to ensure that those who plan and manage healthcare hear patients’ views. FREEPOST, Patient and Client Council, 1st Floor, Ormeau Baths, 18 Ormeau Avenue, Belfast, BT2 8HS Telephone: 0800 917 0222 www.patientclientcouncil.hscni.net

http://www.wales.nhs.uk/sitesplus/899/home

http://www.scottishhealthcouncil.org/home.aspx

http://www.scottishmedicines.org.uk/

http://www.nhs24.com/

http://www.patientclientcouncil.hscni.net/


England The National Institute for Health and Care Excellence (NICE) NICE is the independent organisation responsible for providing national guidance on promoting good health and preventing and treating ill health in the UK. www.nice.org.uk Post: National Institute for Health and Care Excellence, 10 Spring Gardens, London, SW1A 2BU Tel: 0845 003 7780 Fax: 0845 003 7784 The Patient Advice and Liaison Service (PALS) The Patient Advice & Liaison Service (PALS) offers support, information and help to NHS patients, their families, carers and friends. PALS can help to resolve concerns and problems when using the NHS and support the rights of patients within the NHS. PALS operate locally throughout England, contact details can be found here: www.nhs.uk/chq/pages/1082.aspx Healthwatch England Healthwatch England is the national independent consumer champion in health and care. They have significant statutory powers to ensure the voice of the consumer is strengthened and heard by those who commission, deliver and regulate health and care services. www.healthwatch.co.uk Tel: 03000 68 3000 NHS Choices NHS Choices provide comprehensive online information about the NHS including detail of local services. www.nhs.uk

http://www.nice.org.uk/

http://www.nhs.uk/chq/pages/1082.aspx

http://www.healthwatch.co.uk/

http://www.nhs.uk/


The Migraine Trust The Migraine Trust is the health and medical research charity for migraine in the United Kingdom. We seek to empower, inform, and support those affected by migraine while educating health professionals and actively funding and disseminating research. Visit our website www.migrainetrust.org to contact us, subscribe to email updates and news, access migraine information and to learn more about The Migraine Trust. To help people to live with migraine, our activity includes the following: Information and Enquiry Service: utilising evidence-based information, we aim to help people to understand and manage migraine. Advocacy Service: providing advocacy support to empower migraine sufferers to make informed decisions, assert their rights and claim their entitlements in the areas of healthcare, employment and education. Events: organising regional educational events around the UK that offer an opportunity to hear from migraine experts, ask questions and share experiences. Upcoming events are listed on our website.

Help support our work The Migraine Trust is a registered charity funded entirely by voluntary donations. We receive no government funding. If you have found the information in this toolkit useful, please support our work so we can continue helping people with migraine. You can make a donation to The Migraine Trust now, quickly and securely via the JustGiving website www.justgiving.com/migrainetrust/Donate or call us on 020 7631 6970.

The information in this toolkit has been read and checked for accuracy and relevance by health professionals and patients. Date reviewed May 2015. The Migraine Trust, 52-53 Russell Square, London, WC1B 4HP



Documents

The Migraine Trust’s Patient Advocacy Toolkit · 2017-09-07 · Sometimes a migraine sufferer has been experiencing pain long before the symptoms have become so problematic that