Anticoagulation Uk Champion Support Pack

UKXAR02170074a April 2017 ANTICOAGULATION UK CHAMPION SUPPORT PACK Prioritising clot prevention in your local area

Social Care Awards 2017

AntiCoagulation Europe Best Anticoagulant Support Charity 2017 - UK

Support for Anticoagulation UK with this project has been provided by MHP Health, whose services are paid for by Bayer. Bayer has checked the content of materials for factual accuracy and compliance with the ABPI code of practice. Editorial control rests with Anticoagulation UK.

CONTENTS

Introduction 02 Why do we need your help? 03 Anticoagulation: Top ten facts 04 Our work to improve anticoagulation services 06 Anticoagulation in a local setting 07

How to get in touch with different stakeholders: – Contact your MP 11 – Contact your local councillor(s) 13 – Contact your local Clinical Commissioning Group 14 – Contact your local Health Watch 15 – Contact your local media 16

How might you use this support pack? 18 More information about anticoagulation 20

Glossary 22 Useful links 23 Template resources 24

UKXAR02170074a April 2017 1 INTRODUCTION

Welcome to our Anticoagulation UK Champion programme, we hope you are going to enjoy the experience.

In 2000, after two years of market research and identifying the lack of information around anticoagulation therapy, Anticoagulation UK was launched as a charitable organisation to provide information, education and support to individuals who required anticoagulation therapy in the short term or as a life-long treatment for their specific condition.

17 years of proactivity has produced some significant achievements in terms of patient outcomes and these include access to NHS prescriptions for self-monitoring strips for warfarin patients, VTE risk assessment protocols for hospital inpatients to minimise risk of hospital acquired thrombosis, campaigning for anticoagulants to be given to patients diagnosed with atrial fibrillation to reduce stroke risk and most recently, raising awareness of cancer associated thrombosis (CAT) for patients undertaking chemotherapy.

Through our work and reputation as one of the leading patient organisations in the field of anticoagulation, we engage at government level providing the Secretariat for the All Party Parliamentary Thrombosis Group, working with the NHS at strategic level within the Academic Health Science Networks and Clinical Commissioning Groups. We participate in research studies across the UK, providing patient perspective and are instrumental in providing Patient Experts to represent Anticoagulation UK and anticoagulation patients at Technology Appraisals for new treatments and diagnostic technologies.

Our objectives remain consistent today as when the charity started – we are committed to the prevention of thrombosis, and for those already on treatment, to help achieve the best anticoagulation service provision within the NHS.

If you have any questions about the content of this support pack or would like further information about campaigning in your local area please email [email protected] or telephone 020 8289 6875.

2 UKXAR02170074a April 2017 WHY DO WE NEED YOUR HELP?

As someone on anticoagulation therapy, or as What does campaigning mean? a family member of someone on anticoagulation Campaigning involves taking a series of therapy, you can help ensure everyone has coordinated actions designed to achieve access to high quality care. a social or political goal. Campaigning can achieve a number of different things, By talking about your experiences, you can help including: improve services by ensuring that anticoagulation – Raising awareness remains a focus for your local councillors, – Tackling misunderstanding politicians and other stakeholders. This increased – Winning support from those who can help scrutiny and support will encourage your local to make change happen health services to ensure that the best possible – Sharing good practice anticoagulant care is available to all patients. – Improving the experiences and outcomes of others

Being an anticoagulation champion means: Our work tells us that people with, or at risk – Being willing to use your voice and your of, blood clots have reported: experiences to help others in your local area – Feeling that their initial concerns are not – You decide when you want to get involved being taking seriously and subsequently and how much you want to do experiencing delays in securing a diagnosis – Volunteering some of your time to contact local – Challenges in accessing the treatment most services and representatives to talk about your suitable to their individual needs and lifestyles experiences – Difficulty accessing information about local – Keeping in touch with Anticoagulation UK about services and support any responses you have – Difficulty in the ongoing management of their condition It does not mean: – Having to give up lots of time to support the Your voice can make a real difference by: campaign – Conveying the impact of blood clots in a way that others can relate to – Sharing real-life experiences – Demonstrating the weight of a problem and the level of support for an issue – Compelling local representatives to act in your interest

UKXAR02170074a April 2017 3 7 This section contains some headline facts Atrial fibrillation related stroke is avoidable. and statistics that demonstrate the importance The NHS could avoid an additional 11,600 ANTICOAGULANTS of improving local clot prevention services strokes and save – messages you can use to explain why this TOP 10 FACTS campaign is so important. 124M A YEAR through better prescribing of anticoagulants for patients with atrial fibrillation8

1 2 8 There are approximately However, there are The risk of atrial fibrillation increases 152000 12 MILLION with age. Approximately strokes in the UK a year; stroke stroke survivors in the UK2. Between April 2015 18 OF THE is the fourth single largest cause and March 2016 78.6% of patients admitted of death in the UK and second with a stroke were seen by a specialist stroke 1 3 POPULATION in the world consultant within 24 hours over the age of 85 have atrial fibrillation9 3 4 9 There are innovative Approximately FIVE YEARS NEW TREATMENTS after a stroke the accumulated 25 TO 30 being developed to treat blood clots. Such as costs for the NHS and social care of patients who have in the past suffered from mechanical thrombectomy, approved for use on the are, on average, deep vein thrombosis, go on to suffer severe post NHS in 2016: a procedure to mechanically remove 5 thrombotic syndrome, a medical condition where clots within hours of them causing a stroke4 the veins cannot pump enough oxygen-depleted 45233 10 blood back to the heart 5 6 10 It is estimated that Six months after a stroke, Between April and June 2016, out of 136 MILLION 9 OUT OF 10 people in England have atrial stroke survIvors in England, Wales 37 MILLION fibrillation. This is equal to 2.4 per and Northern Ireland have returned patients admitted to NHS acute care in England, 11 cent of the population6 to live at home7 96% were assessed for venous thromboembolism

4 UKXAR02170074a April 2017 7 WHAT IS DEEP VEIN THROMBOSIS? Deep vein thrombosis (DVT) is a condition where a This section contains some headline facts Atrial fibrillation related stroke is avoidable. blood clot forms in one of your deep veins, usually and statistics that demonstrate the importance The NHS could avoid an additional 11,600 in your leg. It affects about one in 1,000 people ANTICOAGULANTS of improving local clot prevention services strokes and save every year in the UK.12 – messages you can use to explain why this campaign is so important. 80 per cent of people living with DVT do not have TOP 10 FACTS 124M A YEAR any symptoms.13 through better prescribing of anticoagulants for patients with atrial fibrillation8 WHAT IS ATRIAL FIBRILLATION?

It is a heart condition that causes an irregular and often abnormally fast heartbeat.14

It can cause problems including dizziness, 1 2 8 shortness of breath and tiredness. However, in some people, atrial fibrillation doesn’t cause any There are approximately However, there are The risk of atrial fibrillation increases symptoms.14 with age. Approximately People with atrial fibrillation are five times more 152000 12 MILLION likely to have a stroke if the condition is not strokes in the UK a year; stroke 2 stroke survivors in the UK . Between April 2015 18 OF THE effectively managed.14 is the fourth single largest cause and March 2016 78.6% of patients admitted of death in the UK and second with a stroke were seen by a specialist stroke 1 3 POPULATION in the world consultant within 24 hours WHAT IS A PULMONARY EMBOLISM? over the age of 85 have atrial fibrillation9 It is a blockage in the pulmonary artery, the vessel that carries blood from the heart to the lungs.15

A pulmonary embolism is often the result of a blood clot, travelling from the deep veins in the 3 4 9 legs to the heart and lungs.15 There are innovative Approximately The blockage can be life-threatening if it prevents 15 FIVE YEARS blood reaching the lungs from the heart. NEW TREATMENTS after a stroke the accumulated 25 TO 30 being developed to treat blood clots. Such as costs for the NHS and social care of patients who have in the past suffered from mechanical thrombectomy, approved for use on the are, on average, deep vein thrombosis, go on to suffer severe post NHS in 2016: a procedure to mechanically remove 5 thrombotic syndrome, a medical condition where clots within hours of them causing a stroke4 the veins cannot pump enough oxygen-depleted 45233 10 blood back to the heart 5 6 10 It is estimated that Six months after a stroke, Between April and June 2016, out of 136 MILLION 9 OUT OF 10 people in England have atrial stroke survIvors in England, Wales 37 MILLION fibrillation. This is equal to 2.4 per and Northern Ireland have returned patients admitted to NHS acute care in England, 11 cent of the population6 to live at home7 96% were assessed for venous thromboembolism

UKXAR02170074a April 2017 5 OUR WORK TO IMPROVE ANTICOAGULATION SERVICES

ADVOCATING FOR PATIENTS

Much of our work focuses on the challenges Additionally, we are: faced by people with anticoagulation needs, by – A member of The Anticoagulation in Practice highlighting them in Parliament and encouraging Society (AiP), dedicated to improving the Government to take action. the understanding and management of anticoagulation for healthcare professionals We support the All Party Parliamentary Group on and for patients Thrombosis, a cross-party group of MPs and Peers – A partner in the Anticoagulation Self- which seeks to raise awareness about the risk and monitoring alliance (ACSMA), a collective management of venous thromboembolism (VTE). of charities actively campaigning for access Established in 2006, the Group works to increase and patient choice to self-monitor warfarin knowledge of VTE’s causes, effects, treatments treatment through research and meetings in Parliament; – A registered stakeholder in the medicines and to monitor the implementation of government appraisals process for the National Institute initiatives and other research being undertaken. for Health and Care Excellence (in England The Group has worked closely with the NHS and Wales) and the Scottish Medical England National VTE Prevention Programme Consortium (in Scotland). This means we and Thrombosis UK (Formerly Lifeblood: The make sure that patient views are being Thrombosis Charity) to firmly embed best practice represented while medicines are being standards in VTE prevention and management into considered for recommendation for NHS use clinical practice. You can find out more about their by these groups research here: http://apptg.org.uk/research/ – A representative of patients for the National Institute of Health Research, to support In 2015, we held a ‘Parliamentary Pulse Check’ research studies across atrial fibrillation, event in the House of Lords, where we screened venous thromboembolism and screening for 45 MPs and Lords for atrial fibrillation and one new atrial fibrillation case was diagnosed. After the event, we saw the importance of anticoagulation spoken about in As well as representing patients, we also parliamentary debates, as well as by MPs on their develop and publish information for patients websites, in questions to the Government and and their families around all aspects of when they spoke with local media. anticoagulation including risk assessment, clot prevention, different conditions and treatments.

To find out more about our work and research CLICK HERE

6 UKXAR02170074a April 2017 ANTICOAGULATION IN A LOCAL SETTING

There are a number of different stakeholders The responsibility of the Health and Wellbeing involved in setting up and running anticoagulation Board is to: services in your local area. Each of these – Bring together key decision makers from the stakeholders will have responsibilities in different NHS and local government areas of anticoagulation, and will be able to – Encourage integration of services across influence different aspects of the service provided. communities – Improve democratic accountability – Tackle inequalities in health HEALTH AND WELLBEING BOARDS – Set the direction for public health and health and social care commissioning Health and Wellbeing Boards are run by the local authority and can be found in every upper tier The local healthcare strategies determined by local authority area. They do not have a budget Health and Wellbeing Boards are detailed in: or commission health services but they do – Joint Strategic Needs Assessment– an oversee the local health and care system. assessment of the community’s current and future healthcare needs There is a legal requirement for a health and – Joint Health and Wellbeing Strategy– sets out wellbeing board to include: the commissioning priorities and plans that – A locally elected representative respond to the needs identified in the joint – A representative of the local Healthwatch (further strategic needs assessment details on Healthwatch are available below) – A representative of each clinical commissioning Health and Wellbeing Boards are important group in the area (further details on the clinical on a local level because they have a legal commissioning group are available below) requirement to involve local people in the – The local authority directors for adult and preparation of their Joint Strategic Needs children’s social services Assessments and Joint Health and Wellbeing – The director of public health for the local Strategies. This legal requirement to engage authority local people means the health and well-being board is a good organisation to seek to It is also possible for Health and Wellbeing work with. It is well prepared to listen to your Boards to expand its membership to include opinions and work to include them in local additional members including local voluntary commissioning priorities. sector organisations and other statutory organisations such as the police. You might choose to contact your health and well-being board about your local area’s anticoagulation services as they currently are, as well as discussing with them their plans for future services. Before you contact your health and well-being board you might like to speak with your doctor to see if they will support your anticoagulation awareness efforts.

The King’s Fund charity has developed For further information on engaging with a directory of all Health and Wellbeing your local Health and Wellbeing Board, Boards which you can use to find out the charity Compact Voice has developed more information CLICK HERE to access a guide CLICK HERE to access

UKXAR02170074a April 2017 7 CLINICAL COMMISSIONING GROUPS

Across England there are 209 Clinical The Clinical Commissioning Group also has Commissioning Groups (CCGs). Clinical a range of further responsibilities: Commissioning Groups are provided with – To improve the quality of services, such as an annual budget by NHS England, and are atrial fibrillation screening responsible for making decisions about the – To reduce health inequalities, such as a high health services offered to local residents, based rate of strokes in one area compared to a both on local needs but also accounting for the neighbouring area cost of providing the service to people who need – To promote the involvement of each patient it. As a result, Clinical Commissioning Groups in their care by engaging them in treatment are responsible for planning and purchasing decisions such as what appropriate the majority of local NHS services, including anticoagulant they would like to be prescribed anticoagulation services and anticoagulation – To promote public involvement in the medicines. They have flexibility in how they operate activities and decisions of the clinical and who they include as members, however, for commissioning group making key decisions all Clinical Commissioning Groups have a governing body. The governing It is important for you to engage your local body is chaired by a General Practitioner (GP) Clinical Commissioning Groups (there may and will also include; other GPs, executive team be more than one responsible for delivering members, nurses, local partner members and healthcare in your local area). When engaging members of the public. with the Clinical Commissioning Groups you might choose to: Your local Clinical Commissioning Group is – Outline the needs of people on important because it controls 80 per cent of the anticoagulation therapies and highlight health budget and it uses information from its problems with inequity in care across the local joint strategic needs assessment to identify country spending priorities. These priorities might include – Ask the Clinical Commissioning Group to what type of anticoagulant medications to commission services to support the needs provide, or whether to fund an atrial fibrillation of people on anticoagulation therapies screening service. – Share your experiences, both good and bad, of the care you have received from your local health services

Identify your local Clinical For further details on engaging with your Commissioning Groups with this local CCG the charity Compact Voice has website published by the NHS developed a guide. CLICK HERE to access CLICK HERE

8 UKXAR02170074a April 2017 DIRECTORS OF PUBLIC HEALTH SUSTAINABILITY AND TRANSFORMATION PLANS

Directors of Public Health (DPH) are employed The NHS and local councils have come together by local authorities and are in charge of public in 44 areas covering all of England to develop health teams. They lead local authority plans to proposals and make improvements to health and reduce the impact of health inequalities and they care. These proposals, called Sustainability and are required to guide Clinical Commissioning Transformation Plans (STPs), are place-based and Groups on how to do this. The law requires every built around the needs of the local population. Every health and well-being board to have a Director of proposal is different, and aims to improve patients’ Public Health on it. Directors of Public Health are lives in areas ranging from making it easier to see a in charge of commissioning a range of services GP, speeding up cancer diagnosis and offering help including drug and alcohol services, mental health, faster to people with mental ill-health. sexual health and smoking cessation services. All 44 Sustainability and Transformation Plans are When engaging your local Director of Public now in the process of being turned into delivery Health, you might wish to raise with them your partnerships which will work to implement the thoughts on local anticoagulation services, ask proposals. Most of these delivery partnerships how your area’s services compare to neighbouring will be forums for shared decision-making and areas and seek their thoughts on improving your will include representatives from across your local local services. health services.

Not all delivery partnerships will focus on anticoagulation services, but some sustainability and transformation plans have included health areas such as the prevention of stroke in their priorities, so their work may look to improve local services.

The plan will let you know the priorities identified in your area, and how you can feed into the work of the local delivery partnership. Even if you cannot see anticoagulation mentioned explicitly within the plan, your local partnership may still be doing some ‘behind-the-scenes’ work in this area, so you may want to contact them to highlight your thoughts.

CLICK HERE to visit the Department CLICK HERE for your local sustainability and of Health website to find out who your transformation plan. It may not be referred local Director of Public Health is to as a sustainability and transformation plan, but instead have been rebranded (eg Your care, your future or similar)

UKXAR02170074a April 2017 9 LOCAL HEALTHWATCH

Each local authority in England has a Local Healthwatch. They bring together individuals and organisations such as those in the voluntary sector. Along with Healthwatch England, they form the Healthwatch network which gives people in the community a say in the commissioning of local health services.

Each health and well-being board is legally required to have the local Healthwatch as a member. Local Healthwatch’s services include: – Giving advice and information to the public on using local health and social care services – Gathering the experiences of local people, to influence the commissioning, availability and accountability of local services – Increasing health service awareness of the importance of engaging with local communities

Local Healthwatch is an important forum to influence because it exists to ensure that the local anticoagulation needs of local people are considered by CCGs, when they are commissioning services.

For further information on your nearest local Healthwatch CLICK HERE

10 UKXAR02170074a April 2017 HOW TO GET IN TOUCH WITH DIFFERENT STAKEHOLDERS

There are four key groups that you can contact There are two ways to contact your MP: to support the improvement of anticoagulation services in your local area: 1. Write to them to arrange a meeting: You can write to your MP (post or email), requesting a 1. Local MPs and councillors meeting to talk to them about your experiences 2. Local commissioners of local anticoagulation services, and how they 3. Local healthwatch can be improved. 4. Media While meeting your MP in person will have the The following section sets out how you can most impact, if you’re worried about the time contact each of these groups and what you can commitment, you can always address the issues ask them to do to support the campaign. you are concerned about in your letter. Structure your letter into three sections – information about clot prevention and the local situation, why this CONTACTING YOUR LOCAL MP issue is important to you, and finally what you would like your MP to do to respond to this Members of Parliament (MPs) and councillors are situation. Your MP doesn’t have to respond to elected to represent the interests and concerns your letter, but the majority of them do, particularly of their constituents as part of the democratic if you’ve taken the time to share your personal process. Your MP or councillor(s) can assist you situation. If they don’t reply to you, write to them in a variety of ways, from making private enquiries again to express your disappointment and ask for on your behalf, to raising matters publicly in the a response. House of Commons or at council meetings. You can also ask your MP or councillor(s) to speak at 2. Attend a drop-in surgery: You can meet your a local event, pledge their support to a campaign MP by arranging to go along to one of their or write to the local media on your behalf. constituency ‘surgeries’. Most MPs hold surgeries – many hold them every week, some hold them Not many people contact their MP, so those that once a month. The surgeries are an opportunity do make an impact. for MPs’ constituents to raise personal concerns and seek their MP’s help with their problems. MPs often use local party offices, church halls or rooms in pubs or community centres as the venues, with a number of surgeries possibly being held at different venues around a constituency. They are traditionally held on a Friday afternoon when MPs have returned from sittings of parliament in Find your MP London. Some MP surgeries are drop-in sessions operating on a first come, first served basis, You can find out who your MP is, and their contact details by typing in your postcode whilst others require a prearranged appointment. on this website CLICK HERE It is therefore best to give your MP’s office a call beforehand to check whether you need to make an appointment. Call them as far in advance as To see whether your MP has undertaken possible because if an appointment is required, any previous activity in Parliament on they tend to get booked up weeks ahead of a anticoagulation and blood clot prevention surgery. If it is a drop-in session, turn up early to search their name on this website ensure you have the opportunity to see your MP CLICK HERE and enough time to raise your concerns. UKXAR02170074a April 2017 11 Meeting your MP Top tips for meeting your MP Some MPs may already have a good Plan your message in advance: understanding about the importance of clot – Provide some facts about clot prevention and prevention, but others may not. It is best to anticoagulation – use some of the statistics in assume that they know less rather than more. this pack It is important for you to share your own – Be ready to talk about your experience – what personal story, highlighting why this issue is this issue means to you and what you would important to you, as well as providing them like to see changed with the facts and figures about these issues. Plan your asks: During the meeting you should: – What would you like them to do about this issue – Thank them for seeing you and establish how after the meeting? We’ve suggested some much time you have to talk to them actions they could take below – Outline the background to the issue – Send a follow-up email or call after the meeting – Tell them how and why it impacts on you – use to confirm agreed actions examples if you can – Tell them how it affects your area – use Get your MP to take action! examples if you can – They could write to their local Clinical – Be specific about what your MP can do to help Commissioning Group to find out how they are and what exactly you are asking them to do working to improve anticoagulation services – Ask them to keep in touch and update you on – They could place a focus on the importance what they do following your meeting. Make of anticoagulation services in Parliament - they sure you give your full name and address could write to the Secretary of State for Health, or table a parliamentary question – They could send a supportive press release to local media - a suggested template can be found in the resources section of this pack – They could support the work of Anticoagulation UK to support people to take an active part in their own healthcare

12 UKXAR02170074a April 2017 CONTACTING YOUR LOCAL COUNCILLOR

You can write to your local councillor to Top tips for meeting your councillor request a meeting to talk to them about your Plan your message in advance: experiences of local anticoagulation services, – Provide some facts about clot prevention and and how they can be improved. anticoagulation – use some of the statistics in this pack Meeting with your local councillor – Be ready to talk about your experience – what Some councillors may already have a good this issue means to you and what you would understanding about the importance of clot like to see changed prevention, but others may not. It is best to assume that they know less rather than more. Plan your asks: It is important for you share your own personal – What would you like them to do about this story, highlighting why this issue is important issue after the meeting? We’ve suggested to you, as well as providing them with the some actions they could take below facts and figures about these issues. – Send a follow-up email or call after the meeting to confirm agreed actions During the meeting you should: – Thank them for seeing you and establish how Get your councillor to take action! much time you have to talk to them – They could write to the local Clinical – Outline the background to the issue Commissioning Group (CCG) to find out how – Tell them how and why it impacts on you – use they are working to improve anticoagulation examples if you can services – Tell them how it affects your area – use – They could send a supportive press release examples if you can to local media - a suggested template can be – Be specific about what your councillor can do found in the resources section of this pack to help and what exactly you are asking them – They could support the work of to do Anticoagulation UK to support people to take – Ask them to keep in touch and update you on an active part in their own healthcare what they do following your meeting. Make sure you give your full name and address

Find your local councillor

You can find out who your local councillors are by typing in your postcode at on this websiteCLICK HERE. This allows you to contact your councillor directly through the website, but will also provide alternative contact details should you wish to phone or write to them.

UKXAR02170074a April 2017 13 CONTACTING YOUR LOCAL CLINICAL COMMISSIONING GROUP

Across England, 209 Clinical Commissioning – Attending meetings: Clinical Commissioning Groups (CCGs) are responsible for planning Groups want you to know about what they and purchasing (‘commissioning’) the are doing so they hold meetings which majority of local NHS services, including members of the public can attend. Agendas anticoagulation services and medicines. for the meetings are made available and you will hear about items such as the Group’s Clinical Commissioning Groups have a finances, treatment targets and management statutory duty to design services which meet updates. You will be able to listen but not ask the needs of their local population, so you can questions, so you might choose to write a take steps to ensure that the needs of people letter to your Clinical Commissioning Group at risk of blood clots are on their agenda when after you have attended a meeting. they plan services. – Writing to the Clinical Commissioning Your Clinical Commissioning Group’s website Group: You could write a letter or email to will have a ‘get involved section’ – this will set your Clinical Commissioning Group asking out ways in which you can share your views them to set out how they are meeting the and experiences. This might include: needs of people at risk of blood clots in the area. – Going along to public events: Ask to join your Clinical Commissioning Group’s mailing While these types of commitments may seem list for updates on events they are organising, more daunting, Anticoagulation UK is able to which could include consultations and support you every step of the way in your role presentations. You should also be able to find as an anticoagulation champion. If you would a calendar for public events on the Group’s like to discuss your plans or guidance on website more information about campaigning in your local area please email anticoagulationuk@ – Joining the Clinical Commissioning gmail.com or telephone 020 8289 6875. Group’s patient involvement group: Clinical Commissioning Groups have a duty to invite patients and carers to participate in local decision-making, placing patients at the heart of decisions about local care. You may be able to join a patient involvement group, but you will be expected to comment on care and services that go beyond anticoagulation

Find your local Clinical Commissioning Group

You can find your local Clinical Commissioning Groups, and their contact details, by typing your postcode into the NHS Choices website CLICK HERE to access

14 UKXAR02170074a April 2017 CONTACTING YOUR LOCAL HEALTHWATCH

Healthwatch England is the national consumer How to approach your local Healthwatch champion in health and care. The organisation represents the views of patients and ensures that Write to them: You can contact your local their voice is strengthened and heard by those Healthwatch about any concerns you may have who plan, deliver and regulate health and care regarding local clot prevention services. They will services. advise you on how to take forward any specific problems or issues you may have encountered There are 152 local Healthwatch organisations, which review local services and feed into Attend an open meeting: The local organisation Healthwatch England. The Healthwatch network will also organise regular meetings that members has a common purpose – to ensure the voices of the public are free to attend. You can use this of people who use services are listened to and opportunity to share your experiences responded to. Its strategic priorities are: What could you say? – To provide leadership, support and advice to Depending on your experience with local local Healthwatch to enable them to deliver their anticoagulation services there may be good or statutory activities and be a powerful advocate for bad points that you wish to raise with the local services that work for people Healthwatch. You might like to provide suggestions – To bring the public’s view to the heart of national on how you think your local service can improve decisions about the NHS and social care for the future, to benefit the experience of others. – To build and develop an effective learning and If you know other people who use your local values-based Healthwatch England anticoagulation service, you could ask them to come with you or ask them what they might like you to say on their behalf.

Find your local Healthwatch

CLICK HERE to can identify your local Healthwatch and its contact details

UKXAR02170074a April 2017 15 CONTACT YOUR LOCAL MEDIA

The media can be an incredibly useful tool, to raise Three key questions to consider when awareness of clot prevention and efforts to improve drafting a press release are: the quality of services. It is also a great way to – Does the story involve local people and encourage local representatives (such as MPs have a human interest angle? Something as and councillors) to get involved in campaigning simple as including a name in your story, or for better services; and highlight that local action having a photo to accompany it can make all needs to be taken to improve care. the difference – Is there a wider topical hook? This could be Your local media will include print, online and a national awareness day or event. This can broadcast media. Before you approach them, add weight to a story and make a national think about how your issue can best be portrayed story relevant to the local area as ‘newsworthy’. The following tips will help you – What makes it newsworthy? Is the story create media interest in a story: linked to a recent or forthcoming event either locally or nationally? – Local stories about local people – something which is relevant to the local population which In terms of getting a story covered, it is ideally has a human interest angle good to make life as easy as possible for journalists, by giving them as much detail as – A wider national hook – publication of national you can and some good ‘sound bites’. We’ve guidance or a national awareness day included steps for you to consider on the next page: – Specific events or actions – such as Stroke Awareness Month, which takes place annually in May

16 UKXAR02170074a April 2017 1 2 Think about WHAT YOUR READ LOCAL STORY IS PAPERS what do you want to highlight in the local media? online and in print – to identify which outlets Consider the key facts in this guide and what and journalists have written about health issues makes the story newsworthy. Summarise this before. You can look at the outlet's website for information in a simple press release which the newsdesk's generic email address to send includes your contact information so a journalist press releases to. can follow up with you if needed.

3 4 If you are able to If you are planning to demonstrate that THE LOCAL MP CONTACT supports your efforts and the campaign, this A OURNALIST can often be enough of a hook for a journalist using an event, MP meeting or activity as a to write a story. Your MP's office may also hook, be sure to contact the journalist a week have links with local journalists so they may in advance to ensure the story is on their radar. offer to provide advice and contact information.

5 We are keen to collate coverage secured from anticoagulation advocates to showcase the efforts and impact of all those supporting the campaign, so PLEASE SEND ANY COVERAGE received to

Don’t forget Anticoagulation UK can support you with these activities. If you require guidance please email [email protected] or telephone 020 8289 6875. UKXAR02170074a April 2017 17 You can use this support pack to remove barriers to HOW MIGHT YOU USE better anticoagulation care in many ways. Please find below a couple of idealised ways in which you might THIS SUPPORT PACK? use the information contained in this pack:

BARRIER 1: BEING REFUSED A REQUEST TO CHANGE ANTICOAGULANT

WhileWhile using using the the HealthUnlocked HealthUnlocked online online YourYour doctor doctor advises advises that that whilst whilst YouYou ask ask to tospeak, speak, or orwrite, write, YourYour friend friend is iscurrently currently prescribed prescribed YouYou hear hear about about a self-testinga self-testing service service for for people people 11 forum forum you you have have heard heard about about new new 22 the the new new treatments treatments are are licenced licenced 33 to tothe the Practice Practice Manager Manager to to 11 warfarin warfarin but but they they are are struggling struggling to to 22 on on warfarin warfarin and and suggest suggest that that your your friend friend writes writes anticoagulantsanticoagulants and and you you discuss discuss with with andand recommended recommended for for your your discussdiscuss the the decision, decision, ask ask attendattend clinic clinic at atleast least every every four four to totheir their GP GP about about local local availability. availability. However, However, the the youryour doctor doctor the the opportunity opportunity to to condition,condition, and and that that you you meet meet forfor advice advice on on how how you you can can weeksweeks for for a blooda blood test, test, due due to towork work GPGP Practice Practice Manager Manager advises advises that that there there is isno no considerconsider changing changing your your medication medication eligibilityeligibility criteria criteria for for the the accessaccess the the treatments, treatments, and and andand family family commitments commitments locallocal funding funding for for a warfarina warfarin self-testing self-testing service service medicines,medicines, they they are are reluctant reluctant askask for for the the decision decision to tobe be asas the the CCG CCG has has made made provision provision and and to toauthorise authorise their their use use due due to to putput in inwriting writing commissionedcommissioned for for all all anticoagulated anticoagulated patients patients fundingfunding directives directives to tobe be managed managed in indedicated dedicated clinic clinic settings settings

FollowingFollowing on on from from the the information information provided, provided, you you look look at atthe the TheThe Practice Practice Manager Manager YouYou also also ask ask for for At Atthe the Healthwatch Healthwatch meeting, meeting, AnticoagulationAnticoagulation UK UK has has also also YouYou go go online online and and find find the the Anticoagulation Anticoagulation 66 Clinical Clinical Commissioning Commissioning Group Group website website and: and: 55 responds responds by by advising advising that that 44 information information around around the the 55 you you raise raise your your issue issue and and ask ask for for 44 advised advised that that you you contact contact your your 33 UK UK website, website, call call the the helpline helpline and and are are told told youyou need need to tocontact contact the the NICENICE guidelines guidelines referred referred advice.advice. You You are are made made aware aware of of locallocal Healthwatch Healthwatch meeting meeting raising raising aboutabout the the NICE NICE guidelines guidelines in inplace place for for SeeSee that that there there is isa Patienta Patient Participation Participation Group Group in inyour your area area ClincalClincal Commissioning Commissioning to toby by your your GP GP and and where where thethe NHS NHS complaints complaints procedure procedure thethe case case and and with with information information self-monitoring.self-monitoring. The The Anticoagulation Anticoagulation UK UK whichwhich holds holds monthly monthly meetings meetings for for the the public public to toattend. attend. Group,Group, to toraise raise the the matter matter youyou can can find find the the NHS NHS andand are are told told that that your your providedprovided by by Anticoagulation Anticoagulation UK, UK, representativerepresentative suggests suggests that that you you contact contact YouYou attend attend the the next next meeting, meeting, raising raising the the issue issue and and ask ask for for withwith the the team team responsible responsible complaintscomplaints procedure procedure HealthwatchHealthwatch representative representative will will demonstratedemonstrate that that a postcodea postcode youryour hospital hospital consultant consultant to togain gain support, support, thethe Clinical Clinical Commissioning Commissioning Group’s Group’s Patient Patient and and Public Public forfor prescribing prescribing decisions decisions presentpresent this this at atthe the next next Clinical Clinical lotterylottery for for support support for for self- self- or orif youif you do do not not have have a consultant,a consultant, to toget get InvolvementInvolvement representative representative to toadvise advise you you on on how how your your CommissioningCommissioning Group Group meeting meeting monitoringmonitoring is isevident evident across across in intouch touch with with the the Clinical Clinical Commissioning Commissioning individualindividual situation situation can can be be escalated escalated theythey attend attend thethe UK UK Group’sGroup’s Patient Patient Involvement Involvement Group Group to to raiseraise this this issue issue

YouYou contact contact the the Clinical Clinical Commissioning Commissioning Group Group directly directly and and they they ask ask for for you you TheThe actions actions lead lead to toyour your GP GP AnticoagulationAnticoagulation UK UK is is YouYou write write to toyour your MP MP and and YouYou speak speak with with OROR to toput put your your concerns concerns in inwriting. writing. The The Clinical Clinical Commissioning Commissioning Group Group responds responds 77 reviewing reviewing your your medication medication 66 supporting supporting you you and and suggests suggests 77 receive receive a replya reply asking asking for for 88 Anticoagulation Anticoagulation UK UK to toyour your letter letter acknowledging acknowledging that that you you have have concerns concerns that that you you are are being being denied denied andand they they confirm confirm that that they they are are thatthat you you contact contact your your local local MP MP moremore information information around around the the whichwhich provides provides you you with with accessaccess to tonew new treatments treatments and and outline outline their their prescribing prescribing rationale rationale for for the the new new ableable to todiscuss discuss all all treatment treatment andand provide provide some some template template inequalitiesinequalities for for access access to to comprehensivecomprehensive details details around around treatments.treatments. It isIt isaware aware that that the the new new treatments treatments are are being being considered considered for for newly newly optionsoptions going going forward forward lettersletters to tohelp help you. you. You You are are also also self-monitoringself-monitoring and and any any data data thethe benefits benefits of ofself-monitoring, self-monitoring, diagnoseddiagnosed patients patients in insecondary secondary care care and and therefore therefore it willit will need need to toincorporate incorporate referredreferred to toa campaigna campaign group group – – or orstatistics statistics you you have have thethe NICE NICE guidelines guidelines references references existingexisting patients’ patients’ access access for for the the future. future. You You are are asked asked if youif you would would consider consider AnticoagulationAnticoagulation Self-Monitoring Self-Monitoring andand related related information information to to talkingtalking or ormaking making your your representations, representations, at atthe the CCG CCG prescribing prescribing committee committee with with AllianceAlliance (ACSMA), (ACSMA), of ofwhich which supportsupport your your case case supportsupport from from the the Patient Patient and and Public Public Involvement Involvement representatives representatives AnticoagulationAnticoagulation UK UK is isa partnera partner

In Inthe the interim, interim, your your consultant consultant has has written written to toadvise advise that that OnOn receipt, receipt, the the MP MP writes writes to tothe the Clinical Clinical 1010 the the benefits benefits of ofself-testing self-testing and and enabling enabling you you to tomanage manage 99 Commissioning Commissioning Group Group which which has has also also been been youryour own own INR INR blood blood tests tests are are significant significant for for your your health health contactedcontacted by by Healthwatch. Healthwatch. The The Clinical Clinical andand wellbeing wellbeing and and with with the the necessary necessary arrangements arrangements CommissioningCommissioning Group Group advises advises that that it needsit needs in inplace place is ishappy happy to torecommend recommend commencement commencement of of to togo go out out to toconsultation consultation to toestablish establish how how self-testing,self-testing, either either through through a dedicateda dedicated provider provider or orwith with manymany people people may may benefit benefit from from a self-a self- supportsupport from from the the existing existing anticoagulation anticoagulation specialist specialist monitoringmonitoring service service and and how how this this could could be be nursenurse for for dosing dosing and and management. management. They They write write to toyour your integratedintegrated into into its its existing existing provision provision GPGP to toadvise advise of ofthis this plan plan

18 UKXAR02170074a April 2017 BARRIER 2: BEING DENIED ACCESS TO AN INR SELF-TESTING SERVICE

While using the HealthUnlocked online Your doctor advises that whilst You ask to speak, or write, Your friend is currently prescribed You hear about a self-testing service for people 1 forum you have heard about new 2 the new treatments are licenced 3 to the Practice Manager to 1 warfarin but they are struggling to 2 on warfarin and suggest that your friend writes anticoagulants and you discuss with and recommended for your discuss the decision, ask attend clinic at least every four to their GP about local availability. However, the your doctor the opportunity to condition, and that you meet for advice on how you can weeks for a blood test, due to work GP Practice Manager advises that there is no consider changing your medication eligibility criteria for the access the treatments, and and family commitments local funding for a warfarin self-testing service medicines, they are reluctant ask for the decision to be as the CCG has made provision and to authorise their use due to put in writing commissioned for all anticoagulated patients funding directives to be managed in dedicated clinic settings

Following on from the information provided, you look at the The Practice Manager You also ask for At the Healthwatch meeting, Anticoagulation UK has also You go online and find the Anticoagulation 6 Clinical Commissioning Group website and: 5 responds by advising that 4 information around the 5 you raise your issue and ask for 4 advised that you contact your 3 UK website, call the helpline and are told you need to contact the NICE guidelines referred advice. You are made aware of local Healthwatch meeting raising about the NICE guidelines in place for See that there is a Patient Participation Group in your area Clincal Commissioning to by your GP and where the NHS complaints procedure the case and with information self-monitoring. The Anticoagulation UK which holds monthly meetings for the public to attend. Group, to raise the matter you can find the NHS and are told that your provided by Anticoagulation UK, representative suggests that you contact You attend the next meeting, raising the issue and ask for with the team responsible complaints procedure Healthwatch representative will demonstrate that a postcode your hospital consultant to gain support, the Clinical Commissioning Group’s Patient and Public for prescribing decisions present this at the next Clinical lottery for support for self- or if you do not have a consultant, to get Involvement representative to advise you on how your Commissioning Group meeting monitoring is evident across in touch with the Clinical Commissioning individual situation can be escalated they attend the UK Group’s Patient Involvement Group to raise this issue

You contact the Clinical Commissioning Group directly and they ask for you The actions lead to your GP Anticoagulation UK is You write to your MP and You speak with OR to put your concerns in writing. The Clinical Commissioning Group responds 7 reviewing your medication 6 supporting you and suggests 7 receive a reply asking for 8 Anticoagulation UK to your letter acknowledging that you have concerns that you are being denied and they confirm that they are that you contact your local MP more information around the which provides you with access to new treatments and outline their prescribing rationale for the new able to discuss all treatment and provide some template inequalities for access to comprehensive details around treatments. It is aware that the new treatments are being considered for newly options going forward letters to help you. You are also self-monitoring and any data the benefits of self-monitoring, diagnosed patients in secondary care and therefore it will need to incorporate referred to a campaign group – or statistics you have the NICE guidelines references existing patients’ access for the future. You are asked if you would consider Anticoagulation Self-Monitoring and related information to talking or making your representations, at the CCG prescribing committee with Alliance (ACSMA), of which support your case support from the Patient and Public Involvement representatives Anticoagulation UK is a partner

In the interim, your consultant has written to advise that On receipt, the MP writes to the Clinical 10 the benefits of self-testing and enabling you to manage 9 Commissioning Group which has also been your own INR blood tests are significant for your health contacted by Healthwatch. The Clinical and wellbeing and with the necessary arrangements Commissioning Group advises that it needs in place is happy to recommend commencement of to go out to consultation to establish how self-testing, either through a dedicated provider or with many people may benefit from a self- support from the existing anticoagulation specialist monitoring service and how this could be nurse for dosing and management. They write to your integrated into its existing provision GP to advise of this plan

UKXAR02170074a April 2017 19 MORE INFORMATION ABOUT ANTICOAGULATION

This section contains some headline facts and statistics that demonstrate the importance of improving local clot prevention services – messages you can use to explain why this campaign is so important.

Within this section you will find: a) Some useful information about the importance of preventing blood clots b) Key statistics to show the scale of the problem c) Facts to bring to life the impact of blood clots on people and the health service

THE IMPORTANCE OF PREVENTING BLOOD CLOTS

A blood clot is a thickened mass in the blood The NHS could avoid an additional 11,600 strokes formed by tiny substances called platelets. Clots and save £124m a year through better prescribing form to stop bleeding, such as at the site of a cut. of anticoagulants for patients with atrial fibrillation, But clots should not form when blood is moving a heart rhythm disorder that causes strokes.11 through the body; when clots form inside blood Deep vein thrombosis (DVT), a condition where a vessels or when blood has a tendency to clot too blood clot forms in one of your deep veins, usually much, serious health problems can occur. in your leg, affects about one in 1,000 people every year in the UK.16 80 per cent of DVT are ‘silent’ and A blood clot can travel through the bloodstream do not have any symptoms.13 and block an artery to the brain, which can cause a stroke. If the clot blocks blood flow to the lungs The number of cases of DVT and PE being listed a pulmonary embolism (PE) can occur, and a as the primary cause of death reached over 12,200 blood clot that blocks a coronary artery can cause in 2010.10 a heart attack.

Blood clots may be avoided by lifestyle THE IMPACT OF BLOOD CLOTS changes such as not smoking, and by not taking medications that add to the risk. Clotting Telling a story of how blood clots can affect people can also be prevented by following physician can be a very powerful way of helping others recommendations concerning medications. understand the impact this condition can have. Sometimes, physicians will prescribe an anticoagulant, which discourages the formation Many patients are left permanently disabled of blood clots within a blood vessel. following a stroke. Of patients admitted to hospital with a stroke from June 2014 to June 2015, around 40 per cent were discharged needing help with THE SCALE OF THE PROBLEM daily activities and 85 per cent of patients required physiotherapy.17 There are approximately 152,000 strokes each year in the UK and stroke is the fourth single largest Approximately 25 to 30 per cent of patients who cause of death in the UK and second in the world.1 have in the past had DVT go on to suffer severe In 2014, 39,284 people died of stroke; 16,224 men post thrombotic syndrome, a medical condition and 23,060 women.1 where the veins cannot pump enough oxygen- depleted blood back to the heart.10

20 UKXAR02170074a April 2017 Below you can read Valerie’s experience of asking the appointment. I explained my objection to taking her doctor to change to a difference anticoagulant warfarin and it was clear that he would not entertain treatment. prescribing me the newer oral anticoagulants as he said “that he would not prescribe them to a dog”. It I was diagnosed with Atrial Fibrillation with a was obvious to me then that if I carried on under his CHA2DS2-VASc score of 3 in December 2013 care it was warfarin or nothing. making me a high risk for a stroke. The heart consultant at the hospital suggested I go on I wrote to my GP saying I was not happy with the warfarin and I asked if there was any alternative as situation and asking that I have a second opinion I explained that I feel ill and faint every time I have with another consultant at a different hospital. The a blood test. He said that there were some new GP was in agreement and wrote a letter so I could drugs available but there was no antidote for them see another heart consultant at another hospital. if I should have a bleed. Whereas there was one for This I did and once again I explained why it would warfarin and it was tried and tested. I said I would be difficult for me to take warfarin and that I knew like to think about it. The consultant said he could there were new anticoagulation drugs available. not prescribe any medication and I would have to He said that I seemed a candidate for these and see a consultant for the blood who could prescribe would arrange an appointment with the consultant medication. dealing with this side of treatment. I had this appointment in August last year and the tone of the An appointment was made and I saw this meeting was completely different. There was much consultant in March 2014. During the intervening more discussion about treatments and I was very period, I contacted the Heart Foundation specialist much involved in deciding the best way forward nurse who pointed me to Anticoagulation UK and for me. The outcome was that I was put on new the Atrial Fibrillation Association and both were a anticoagulant and I am still on this medication. So great help in giving me guidance and information my experience was that I had to fight for the new regarding warfarin and the three new oral oral anticoagulation drugs with a lot of time wasted anticoagulation drugs. Consequently I had a lot of from the diagnosis of Atrial Fibrillation to receiving questions to ask the consultant when I saw him at the new drugs.

This Case Study is also available on the Anticoagulation UK website. CLICK HERE to visit the site.

UKXAR02170074a April 2017 21 GLOSSARY

Anticoagulant — a medication that reduces the Healthwatch — is a statutory watchdog, their role risk of stroke by decreasing the chances of blood is to ensure that health and social care services, clot formation and the Government, put people at the heart of their care Anticoagulation — use of an anticoagulant medication, frequently called a blood thinner, Ischemic stroke — is a stroke that occurs when to prevent an atrial fibrillation-related stroke blood flow to the brain is blocked by a clot or other obstruction. An ischemic stroke typically occurs Antiplatelet drugs — is medication used to when a blood clot from elsewhere in the body decrease the risk of heart attacks and certain travels to the brain, blocking the blood flow and strokes, and to treat artery blockages in the legs. oxygen supply to part of the brain and causing These drugs work by preventing a part of the brain cells in that region to die blood called platelets from clumping together to form clots and thus help prevent heart attacks The Kings Fund — The King’s Fund is an English and strokes health charity that shapes health and social care policy and practice, provides NHS leadership Atrial Fibrillation — is a quivering or irregular development, and hosts health care events heartbeat that can lead to blood clots, stroke, heart failure and other heart-related complications Nonvalvular atrial fibrillation — is atrial fibrillation that is not caused by underlying heart valve Blood clot — a clot that forms inside the body disease or issues when blood flow is slowed or stopped long enough to allow coagulation, it can travel through the Post Thrombotic Syndrome — is a medical bloodstream to the heart, where it can cause condition where the veins cannot pump enough a heart attack, or to the brain, where it can cause oxygen-depleted blood back to the heart a stroke Pulmonary embolism — is a blockage in the Clinical Commissioning Groups — are clinically- pulmonary artery, the blood vessel that carries led statutory NHS bodies responsible for the blood from the heart to the lungs planning and commissioning of health care services for their local area Stroke — is a disruption of blood flow to the brain that deprives the brain of oxygen. Without oxygen, Coagulation — the formation of a blood clot brain cells can die, causing permanent disability in the affected parts of the brain Deep Vein Thrombosis — a blood clot in a vein. Blood clots in veins most often occur in the legs Sustainability and Transformation Plans — NHS but can occur elsewhere in the body, including organisations and local authorities in different parts the arms of England have come together to develop ‘place- based plans’ for the future of health and care Health and Wellbeing Board — Health and services in their area Wellbeing Boards were established under the Health and Social Care Act 2012 to act as a forum Thrombus — is a clot that forms inside the body in which key leaders from the local health and care when blood flow is slowed or stopped long enough system could work together to improve the health to allow coagulation and wellbeing of their local population

22 UKXAR02170074a April 2017 USEFUL LINKS ABOUT THE ORGANISATIONS INVOLVED

Anticoagulation UK: Anticoagulation UK is a UK registered charity http://www.anticoagulationeurope.org/ founded in the year 2000. It works with patients, publications/from-prevention-to-treatment-deep- healthcare professionals, NHS trusts, Industry, vein-thrombosis-and-pulmonary-embolism Governments, other charities and patient groups, and a wide range of other organisations. A guide on how to engage your Clinical Commissioning Group: Anticoagulation UK’s stated aims include: www.compactvoice.org.uk/sites/default/files/ the prevention of thrombosis; the provision of engaging_with_clinical_commissioning_ information, education and support; the promotion groups.pdf of independence - supporting people to take an active part in their own healthcare. A guide on how to engage your Health and Wellbeing Board: You can learn more about Anticoagulation UK www.compactvoice.org.uk/sites/default/files/ on its website: engaging_with_health_and_wellbeing_ www.anticoagulationeurope.org/about-us boards.pdf or by calling 020 8289 6875.

Clinical Commissioning Group directory: Support for Anticoagulation UK with this project www.nhs.uk/ServiceDirectories/Pages/ has been provided by MHP Health, whose CCGListing.aspx services are paid for by Bayer. Bayer has checked the content of materials for factual accuracy Directors of Public Health directory: and compliance with the ABPI code of practice. www.gov.uk/government/publications/directors Editorial control rests with Anticoagulation UK. -of-public-health-in-england--2

Find your MP (using your postcode): http://www.parliament.uk/mps-lords-and- offices/mps/

Find your local Councillor(s) (using your postcode): www.writetothem.com

HealthUnlocked online forum: https://healthunlocked.com/

Healthwatch directory: www.healthwatch.co.uk/find-local-healthwatch

Health and Wellbeing Board directory: https://www.kingsfund.org.uk/projects/health -and-wellbeing-boards/hwb-map

Sustainability and Transformation Plan directory: https://www.england.nhs.uk/stps/view-stps/

UKXAR02170074a April 2017 23 APPENDIX: TEMPLATE LETTER TO MPS C AD HA O M L P (ATRIAL FIBRILLATION) I N O

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Dear [insert MP’s name]

I am writing to you, as my local MP in [insert constituency name], to request a meeting to discuss the local anticoagulation service. [I am currently a patient there / I am a carer of a current patient there / A family member is currently a patient there], and I would be grateful for your support in ensuring that everyone using these services has access to the best quality care and treatment.

Atrial fibrillation (AF) increases the risk of stroke by a factor of five1 and strokes caused by AF are often more severe with higher mortality and greater disability.2 The condition affects over one million people in the UK.3 Anticoagulation substantially reduces the risk of stroke in people with AF. Despite this, AF is underdiagnosed and under treated: about one third of people with AF are unaware they have the condition4 and even when diagnosed, large numbers do not receive anticoagulants or have poor anticoagulant control.

[As a patient / carer of a current patient / family member of a patient] with atrial fibrillation, my experience with anticoagulation is a particularly personal one. [Insert personal experience]

There are a number of challenges that face people affected by atrial fibrillation. More needs to be done to raise awareness and improve diagnosis, particularly given that so many are unaware of their condition. Additionally, anticoagulation services must be more patient-friendly; levels of information and support for patients vary, a lack of access to the full range of NICE recommended treatments can be frustrating and follow up and review can be inconsistent.

As a result of my own experiences, I am now an Anticoagulation Champion for Anticoagulation UK, a charity which supports patients who have anticoagulation needs.

I write to you to ask for your support in ensuring that all people with anticoagulation needs are being diagnosed and receive the most appropriate treatment and personalised care. I would be delighted if you could let me know a suitable date to meet with you, to further discuss what more can be done to deliver patient-centred anticoagulation services.

I look forward to hearing from you. Yours sincerely [Your name]

1 Stroke, Atrial fibrillation as content/22/8/983.long http://www.preventaf-strokecrisis. Atrial Fibrillation, 2017. Available and Care Excellence, Atrial thousands-of-strokes-in-people- an independent risk factor for 2 Atrial Fibrillation Association org/files/files/The%20AF%20 online via: https://www.bhf.org. Fibrillation Clinical Guideline 180, with-common-heart-rhythm- stroke: the Framingham Study, and Anticoagulation UK, The AF Report%2014%20April%20 uk/heart-health/conditions/atrial- August 2014. Available online disorder-are-avoidable-says-nice 1991. Available online via: Report: Chapter 1 What is AF? , 2012.pdf fibrillation via: https://www.nice.org.uk/ http://stroke.ahajournals.org/ April 2012. Available online via: 3 British Heart Foundation, 4 National Institute for Health guidance/cg180/documents/

24 UKXAR02170074a April 2017 APPENDIX: TEMPLATE LETTER TO MPS C AD HA O M L P (DEEP VEIN THROMBOSIS AND PULMONARY EMBOLISM) I N O

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Dear [insert MP’s name]

A deep vein thrombosis (DVT) is a blood clot in a vein (usually a leg vein). DVT can block the flow of blood partially or completely and this causes the symptoms of DVT. If the clot lodges in the lungs a potentially serious and sometimes fatal condition, pulmonary embolism (PE), occurs. In 2013 estimates showed that more than one in 1,000 adults were potentially affected by DVT in England, with 86 in 100,000 potentially affected by PE.1

[As a patient / carer of a current patient / family member of a patient] who has had [deep vein thrombosis / a pulmonary embolism], my experience with anticoagulation is a particularly personal one. [Insert personal experience]

There are a number of challenges that face people affected by deep vein thrombosis. More needs to be done to raise awareness, prevent and improve diagnosis of the condition, particularly as 80 per cent of DVT incidents are ‘silent’ and do not show any symptoms.2 Additionally, anticoagulation services must be more patient-friendly; levels of information and support for patients vary, a lack of access to the full range of medicines can be frustrating and follow up and review can be inconsistent.

As a result of my own experiences, I am now an Anticoagulation Champion for Anticoagulation UK, a charity which supports patients who have anticoagulation needs.

I look forward to hearing from you. Yours sincerely [Your name]

1 Anticoagulation Europe, to%20Treatment%20Deep%20 Information Leaflet. Available pdfthousands-of-strokes-in- From Prevention to Treatment. Veing%20thrombosis%20 online via: http://www. people-with-common-heart- Available online via: http://www. and%20Plumonary%20 thrombosis-charity.org.uk/ rhythm-disorder-are-avoidable- anticoagulationeurope.org/files/ Embolism.pdf assets/leaflets/thrombosisuk- says-nice files/From%20Prevention%20 2 Thrombosis UK, General general-information-leaflet.

UKXAR02170074a April 2017 25 APPENDIX: TEMPLATE LETTER TO COUNCILLORS C AD HA O M L P (ATRIAL FIBRILLATION) I N O

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Dear [insert Councillor’s name]

I am writing to you, as my local councillor in [insert ward or council name], to request a meeting to discuss the local anticoagulation service at. [I am currently a patient there / I am a carer of a current patient there / A family member is currently a patient there], and I would be grateful for your support in working towards securing improvements to the service provided.

[As a patient / carer of a current patient / family member of a patient] with atrial fibrillation, my experience with anticoagulation is a particularly personal one. [Insert personal experience]

There are a number of challenges that face people affected by atrial fibrillation. More needs to be done to raise awareness and improve diagnosis, particularly given that so many are unaware of their condition. Additionally, anticoagulation services must be more patient-friendly; levels of information and support for patients vary, a lack of access to the full range of medicines can be frustrating and follow up and review can be inconsistent.

As a result of my own experiences, I am now an Anticoagulation Champion for Anticoagulation UK, a charity which supports patients who have anticoagulation needs. I am writing to understand what steps your organisation is taking to ensure that all people with anticoagulation needs are being diagnosed and receive the most appropriate treatment and personalised care.

I would be delighted if you could let me know a suitable date to meet with you, to further discuss what more can be done to deliver patient- centred anticoagulation services.

I look forward to hearing from you. Yours sincerely [Your name]

26 UKXAR02170074a April 2017 APPENDIX: TEMPLATE LETTER TO CLINICAL COMMISSIONING GROUP C AD HA O M L P (ATRIAL FIBRILLATION) I N O

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Dear [insert name of cardiovascular lead at CCG]

I am writing to you to request further information on [insert name of CCG] Clinical Commissioning Group’s efforts to improve local anticoagulation services.

[As a patient / carer of a current patient / family member of a patient] with atrial fibrillation, my experience with anticoagulation is a particularly personal one. [Insert personal experience]

There are a number of challenges that face people affected by atrial fibrillation. More needs to be done to raise awareness and improve diagnosis, particularly given that so many are unaware of their condition. Additionally, anticoagulation services must be more patient-friendly; levels of available information and support vary, a lack of access to the full range of medicines can be frustrating and follow up and review of treatment is inconsistent.

In November 2016 Public Health England (PHE) published a plan to reduce the incidence of avoidable AF-related strokes by 5,000 nationally over the next five years. The aim is to increase the number of people with AF who are diagnosed and optimally managed, through the use of NHS Health Checks.5

As a result of my own experiences, I am now an Anticoagulation Champion for Anticoagulation UK, a charity which supports patients who have anticoagulation needs.

I would be grateful if you could write to me outlining actions the CCG is taking to address the important issues of under-diagnosis and under-treatment and to improve local anticoagulation services.

Yours sincerely [Your name]

1 Stroke, Atrial fibrillation as 2 Atrial Fibrillation Association Report%2014%20April%20 4 National Institute for Health with-common-heart-rhythm- online via: https://www.gov.uk/ an independent risk factor for and Anticoagulation UK, The AF 2012.pdf and Care Excellence, Atrial disorder-are-avoidable-says-nice government/uploads/system/ stroke: the Framingham Study, Report: Chapter 1 What is AF? , 3 British Heart Foundation, Fibrillation Clinical Guideline 180, 5 Public Health England, Local uploads/attachment_data/ 1991. Available online via: April 2012. Available online via: Atrial Fibrillation, 2017. Available August 2014. Available online Health and Care Planning: Menu file/565944/Local_health_ http://stroke.ahajournals.org/ http://www.preventaf-strokecrisis. online via: https://www.bhf.org. via: https://www.nice.org.uk/ of preventative interventions, and_care_planning_menu_of_ content/22/8/983.long org/files/files/The%20AF%20 uk/heart-health/conditions/atrial- guidance/cg180/documents/ November 2016. Available preventative_interventions.pdf fibrillation thousands-of-strokes-in-people- UKXAR02170074a April 2017 27 APPENDIX: TEMPLATE LETTER TO CLINICAL COMMISSIONING GROUP C AD HA O M L P (DEEP VEIN THROMBOSIS AND PULMONARY EMBOLISM) N I O

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Dear [insert name of cardiovascular lead at CCG]

I am writing to you to request further information on [insert name of CCG] Clinical Commissioning Group’s efforts to improve local anticoagulation services.

As [patient / carer of a current patient / family member of a patient] who has had [deep vein thrombosis/a pulmonary embolism], my experience with anticoagulation is a particularly personal one. [Insert personal experience]

The NHS has identified improving the prevention and treatment of cardiovascular disease as a major priority.

Anticoagulation UK, a charity which works to support patients living with DVT, has identified five key areas for improvement to ensure that patients have access to the best possible support for their anticoagulation needs: — Data collection — Patient experience — Ensuring access to all appropriate treatments — Commissioning effective anticoagulation services — Managing risk and improving outcomes As a result of my own experiences, I am now an Anticoagulation Champion for Anticoagulation UK, a charity which supports patients who have anticoagulation needs.

I would be grateful if you could write to me outlining actions the CCG will be taking to tackle DVT and PE, and to promote patient-centred anticoagulation services.

Yours sincerely [Your name]

1 Anticoagulation Europe, to%20Treatment%20Deep%20 From Prevention to Treatment. Veing%20thrombosis%20 Available online via: http://www. and%20Plumonary%20 anticoagulationeurope.org/files/ Embolism.pdf files/From%20Prevention%20

28 UKXAR02170074a April 2017 APPENDIX: TEMPLATE LETTER TO SECRETARY OF STATE FOR HEALTH C AD HA O M L P (ATRIAL FIBRILLATION) N I O

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Dear Secretary of State

I am writing to you regarding the quality of care being provided through anticoagulation services through the National Health Service.

I recently met with my constituent [insert name] who described their experience with anticoagulation treatments in some detail. Following this meeting I have decided to seek more detail on the Government’s efforts to improve anticoagulation services, both in my [insert constituency] and more broadly across England.

The NHS has identified improving the prevention and treatment of cardiovascular disease as a major priority.

Anticoagulation UK, a charity which works to support patients living with DVT, has previously stated that to continue to tackle the burden of AF-related stroke on patients, their families and the NHS, more must be done to improve rates of diagnosis and effective treatment of patients with AF.

I would be grateful if you could write to me outlining the actions which the Department of Health and NHS are taking to diagnose AF, prevent AF-related stroke, and to promote patient-centred anticoagulation services, including whether there are any plans to develop a national cardiovascular disease and/or stroke strategy.

I look forward to hearing from you. Yours sincerely [Your name]

1 Stroke, Atrial fibrillation as 2 Atrial Fibrillation Association Report%2014%20April%20 4 National Institute for Health thousands-of-strokes-in-people- of people with common heart an independent risk factor for and Anticoagulation UK, The AF 2012.pdf and Care Excellence, Atrial with-common-heart-rhythm- rhythm disorder’, October 2014. stroke: the Framingham Study, Report: Chapter 1 What is AF? , 3 British Heart Foundation, Fibrillation Clinical Guideline 180, disorder-are-avoidable-says-nice Available online via: 1991. Available online via: April 2012. Available online via: Atrial Fibrillation, 2017. Available August 2014. Available online 5 NHS Improving Quality, ‘NHS http://www.nhsiq.nhs.uk/news- http://stroke.ahajournals.org/ http://www.preventaf-strokecrisis. online via: https://www.bhf.org. via: https://www.nice.org.uk/ could avoid 11,600 strokes and events/news/costs-and-benefits- content/22/8/983.long org/files/files/The%20AF%20 uk/heart-health/conditions/atrial- guidance/cg180/documents/ save £124m through better care of-antithrombotic-therapy.aspx fibrillation UKXAR02170074a April 2017 29 APPENDIX: TEMPLATE LETTER TO SECRETARY OF STATE FOR HEALTH C AD HA O M L P (DEEP VEIN THROMBOSIS AND PULMONARY EMBOLISM) N I O

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TEMPLATE R

Dear Secretary of State

I am writing to you regarding the quality of care being provided through anticoagulation services by the National Health Service.

The NHS has identified improving the prevention and treatment of cardiovascular disease as a major priority.

Anticoagulation UK, a charity which works to support patients living with DVT, has identified five key areas for improvement to ensure that patients have access to the best possible support for their anticoagulation needs: — Data collection — Patient experience — Ensuring access to all appropriate treatments — Commissioning effective anticoagulation services — Managing risk and improving outcomes I would be grateful if you could write to me outlining the actions the Department of Health and National Health Service are taking to tackle DVT and PE, and to promote patient-centred anticoagulation services.

I look forward to hearing from you. Yours sincerely [Your name]

30 UKXAR02170074a April 2017 REFERENCES

1 Stroke Association, State of the Nation, January 2016

2 Stroke Association, State of the nation – one pager, January 2017. Available online via: https://www.stroke.org.uk/sites/default/files/state_of_the_nation_2017_one_pager.pdf

3 Royal College of Physicians, SSNAP data period 15 April 2015-March 2016 annual results portfolio, June 2016. Available online via: https://www.strokeaudit.org/Documents/National/Clinical/Apr2015Mar2016/Apr2015Mar2016-AnnualResultsPortfolio.aspx

4 National Institute for Health and Care Excellence, NICE greenlights clot removal procedure for use on NHS, February 2016. Available online via: https://www.nice.org.uk/news/article/nice-greenlights-clot-removal-procedure-for-use-on-nhs

5 Derek Twigg MP, parliamentary question 61544 – atrial fibrillation: strokes, January 2017. Available online via: https://www.parliament.uk/business/publications/written-questions-answers-statements/written-question/Commons/2017-01-25/61544/

6 Public Health England, Atrial fibrillation prevalence estimates in England: application of recent population estimates of AF in Sweden, March 2015. Available online via: http://www.yhpho.org.uk//resource/view.aspx?RID=207902

7 Stroke Association, State of the nation stroke statistics, January 2017. Available online via: https://www.stroke.org.uk/sites/default/files/state_of_the_nation_2017_final_1.pdf

8 NHS Improving Quality, NHS could avoid 11,600 strokes and save £124m through better care of people with common heart rhythm disorder, October 2014. Available online via: http://www.nhsiq.nhs.uk/news-events/news/costs-and-benefits-of-antithrombotic-therapy.aspx

9 Rand, The future of anticoagulation: facts and figures, May 2015. Available online via: http://www.rand.org/content/dam/rand/pubs/infographics/IG100/IG122/RAND_IG122.pdf

10 Bayer, From prevention to treatment deep vein thrombosis and pulmonary embolism, November 2013

11 NHS England, Official statistics for venous thromboembolism risk assessment in England Q1 2016/17, September 2016. Available online via: https://www.england.nhs.uk/statistics/wp-content/uploads/sites/2/2016/09/VTE-Press-Notice-Q1-2016-17.pdf

12 NHS Choices, Deep Vein Thrombosis, April 2016. Available online via: http://www.nhs.uk/conditions/Deep-vein-thrombosis/Pages/Introduction.aspx

13 Thrombosis UK, General Information Leaflet. Available online via: http://www.thrombosis-charity.org.uk/assets/leaflets/thrombosisuk-general-information-leaflet.pdf

14 NHS Choices, Atrial fibrillation, May 2015. Available online via: http://www.nhs.uk/conditions/atrial-fibrillation/Pages/Introduction.aspx

15 NHS Choices, Pulmonary Embolism, July 2015. Available online via: http://www.nhs.uk/Conditions/pulmonary-embolism/Pages/Introduction.aspx

16 BUPA, Deep vein thrombosis (DVT), Available online via: http://www.bupa.co.uk/health-information/directory/d/deep-vein-thrombosis-dvt

17 ABPI, One year on: Why are patients still having unnecessary AF-related strokes?, Available online via: http://www.abpi.org.uk/media-centre/newsreleases/2016/Documents/Embargo9May_ABPI_OneYearOn_FINALREPORT.pdf

UKXAR02170074a April 2017 31 NOTES

32 UKXAR02170074a April 2017 NOTES

UKXAR02170074a April 2017 33 UKXAR02170074a April 2017

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020 8289 6875 [email protected] www.anticoagulationeurope.org

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