Name First para Other paras 2010 2015 The Association Manifesto 2010 to 2015 Working for a world where there are fewer and all those touched by stroke get the help they need 2010 A stroke is a brain attack 2015

A stroke is what Types of stroke happens when the • An ischaemic stroke, the most common type of stroke, blood supply to the happens when a clot blocks an artery that supplies blood brain is cut and brain to the brain. cells die. Because • A haemorrhagic stroke is caused by a bleed in the brain. the brain controls • A transient ischaemic attack (TIA), often called a mini-stroke, happens when the brain’s blood supply is everything we do, briefly interrupted. Although the symptoms of a TIA, which think and feel – things are very similar to a full stroke, are temporary and disappear within 24 hours, having a TIA indicates an increased risk of we take for granted, a more serious stroke in the future. like being able to Common symptoms of stroke move, balance, speak, understand, The first signs that someone has had a stroke can include: remember, see and • sudden numbness, weakness or paralysis of the face, arm hear – the brain or leg on one side of the body damage caused by • sudden difficulty in speaking or understanding speech a stroke can be • sudden loss or blurring of vision, in one or both eyes devastating. • sudden severe headache with no apparent reason • sudden confusion, dizziness, unsteadiness or a sudden fall, especially with any of the other signs listed above. The FAST stroke recognition test

F – Facial weakness Can the person smile? Has their mouth or eyelid drooped? A – Arm weakness Can the person raise both arms? S – Speech problems Can the person speak clearly and understand what you say? T – Time to call 999 If you see any of these signs call 999 because stroke is a medical emergency.

2 The Stroke Association Contents

Our vision Introduction 4 We want a world where there are fewer strokes and all those touched by stroke Stroke prevention 6 get the help they need. Our mission Emergency and acute stroke care 8 Our mission is to prevent strokes and Life after stroke – from the achieve life after stroke by providing services, campaigning, education hospital into the community 10 and research. Our values Life after stroke – long-term support 12 Our core values are based on Children and stroke 14 professionalism, passion for our cause, innovation, respect and openness, and working together to Conclusions 16 build successful partnerships in pursuit of common goals. References 18 Our services As well as campaigning for better stroke care across the whole of the stroke care pathway, we provide direct help to stroke survivors and their carers and families through our own range of Life After Stroke Services.

3 2010 Introduction 2015

Every year in the UK Stroke is the biggest single cause of severe disability2 and the UK’s third biggest killer.3 Stroke cost the economy an over 150,000 people estimated £8 billion in 2008/09 in alone4 and it is have a stroke or mini likely that it costs proportionate amounts in the other three stroke, a transient countries of the UK.* There is widespread public misunderstanding about stroke ischaemic attack which may lead people to underestimate the impact of stroke (TIA).1 That’s one on their own families, on health and social services and on society as a whole. And people don’t realise that there is a stroke every five huge amount that could be done to transform the prospects minutes. for people affected by stroke. There is a wealth of evidence to show how, as a society, we could prevent tens of thousands of strokes each year, save thousands from dying from stroke, dramatically reduce the number of people with severe disabilities due to stroke, and maximise the independence of many thousands more.5 In 2005 we published The Stroke Association Manifesto, with ambitious objectives based on that evidence. Since then, our campaigning efforts, collaboration with others and the consensus for change that we have spearheaded, have all supported progress on stroke care across the UK. Virtually all of our 2005 demands are now, at least, policy commitments for the NHS in all four countries of the UK. Each of the four countries now has a strategy or action plan for stroke. In England stroke is defined as a national priority in the NHS Operating Framework. In Scotland stroke continues to be a clinical priority for the NHS and in Northern Ireland it is a key health priority. We would like to see this continue and for a similar commitment to be put in place in Wales. We welcome the inclusion of time bound targets in the Northern Ireland strategy and in Wales and would like to see similar commitments across the UK.

* This manifesto addresses issues of relevance to all four administrations of the UK – England, Northern Ireland, Scotland and Wales – as we strive to encourage improvements in stroke care across the UK. Whilst examples of existing stroke policy and practice are cited, we recognise that responsibility for change rests with each devolved administration, with the exception of reserved matters such as welfare benefits. The word country is used in this manifesto to mean a devolved administration as this reflects common usage of the term, even though devolved administrations are not countries or nations in the legal sense. 4 We have started to see real improvements in stroke care in Funding We believe that a many places but we now need to see those policy continuation of ring-fenced funding commitments translated into action in every part of the UK for stroke in England and the so that everyone has speedy and equitable access to introduction of ring-fenced funding in excellent stroke services. Progress is uneven and many stroke Wales, Northern Ireland and Scotland survivors are still not spending the majority of their stay in is vital to maintain momentum and hospital on a stroke unit ensure full implementation of stroke strategies. The amounts required are So there is still a long way to go. We must not be complacent tiny considered against overall and we all need to increase our efforts. Responsibility for budgets, and the fact that stroke is implementation lies with local health and social care bodies. the number one cause of long-term We want to see them all take up this challenge and deliver the severe disability. high quality services that stroke survivors and their carers need. We would like to see the guidelines in each country on Awareness We believe that 6 the management of stroke and TIAs fully implemented. national and local FAST advertising The Stroke Association’s call to action campaigns should be used in all four countries of the UK, building on the This manifesto sets out our ambitions for stroke care. We campaigns that have already been believe that over the next five years we can and should aim to: developed by the Department of • reduce the incidence of stroke Health in England and that are being proposed in Scotland7 and Northern • reduce stroke mortality rates, and Ireland. Continued funding is needed • reduce the levels of impairment and disability caused by in order to maintain awareness of stroke to that of the best in Europe. stroke symptoms. These awareness raising campaigns should also We have identified some of the key services within the care signpost people who require more pathway where we would like to see significant improvements, information and support to but there are three key issues that will need to be addressed The Stroke Association and other if these improvements are to become a reality. sources of support.

Research Funding for stroke research lags dangerously behind that for and heart disease. The Stroke Association is committed to increasing its funding for research over We have started to see real the next five years. We call on government and other funding bodies improvements in stroke care in many to similarly increase the amount of places but we now need to see those funding available for stroke research with a particular focus on increasing policy commitments translated into stroke research capacity across the action in every part of the UK so that full care pathway. We would like to see everyone has speedy and equitable a continued commitment to and expansion of funding for the UK access to excellent stroke services. Stroke Research Network.8 5 2010 Stroke prevention 2015

Stroke is the number The Stroke Association’s call to action one cause of long-term Raising awareness severe disability and Much more needs to be done to raise public and professional the third biggest killer awareness of risk factors for stroke and effective primary in the UK, but it is prevention measures at individual, family, community and societal levels.11 preventable. Health promotion measures Greater attention must be given More effective government funded public health measures are to prevention. required to significantly reduce people’s exposure to risk factors for stroke.12 Stroke should be included more • We could prevent 40 per cent prominently in existing government public health and health of strokes by controlling high promotion policy and activity.13 14 15 blood pressure across the UK.9 Stroke prevention services • We could reduce strokes by a quarter if everyone ate at least Community based stroke prevention services should be five pieces of fruit and developed in partnerships between the voluntary sector the vegetables every day.10 NHS and local authorities – an example being the Stroke Prevention Service provided by The Stroke Association.16 • Up to 15,000 strokes might be prevented every year if we Implementation of guidelines diagnosed and treated TIA and We need to see rapid progress in the implementation of the atrial fibrillation quickly. NICE guidelines for diagnosis and treatment of TIA and minor • Prevention of stroke will reduce stroke as these measures have the potential to prevent up to the incidence of vascular 10,000 strokes per year in the UK17 and are highly cost because between effective.18 We also want to see continued progress on the 20 and 40 per cent of dementia implementation of other country-specific guidelines such as is stroke related. the Scottish Intercollegiate Guidance on Risk Estimation and Prevention of .19

6 Diagnosis and treatment of atrial fibrillation We would like to see improvements in the diagnosis and treatment of atrial fibrillation (AF) because appropriate anti- coagulation of AF patients with a CHADS2 score of 2 or more20 would prevent approximately 4,500 strokes per year.21 The role of GPs in helping people reduce their risk of stroke We would like to see GPs encouraged to monitor and manage all those at risk of stroke and refer as appropriate to smoking cessation services, alcohol services, walking for health schemes, exercise referral schemes, and any other relevant local lifestyle initiatives - as has been proposed in the Welsh Assembly Government’s Improving Stroke 22 Marion Webster Services: a Programme of Work. A stroke survivor benefiting from a secondary stroke prevention service. ‘The stroke was very frightening; it’s such a disabling illness. From hospital I went to a nursing home for intensive rehabilitation and was walking again after a month. Then I was referred to The Stroke Association’s Stroke Prevention Service in Hull – it’s been fantastic! ‘At the group we spend the first hour doing exercises – it’s so important in stroke recovery. We then talk about food and nutrition and how to make healthy food interesting. The Stroke Prevention Service has helped me understand about food. My husband Ted and I used to snack on pork pies. Nowadays, we eat mainly chicken and vegetables. I’ve also stopped smoking and joined a gym. ‘Without talking to other members of the group, I wouldn’t have known Up to 15,000 strokes might be prevented what stroke risk factors I had. It’s every year if we diagnosed and treated hard to believe how much more I’ve recovered.’ TIA and atrial fibrillation quickly. 7 2010 Emergency and 2015 acute stroke care

Stroke costs around The Stroke Association’s call to action £8 billion a year in Emergency care England alone, but we All ambulance services should have agreed stroke protocols believe those costs with hospitals with acute and hyper-acute stroke units.23 24 could be reduced and Hyper-acute stroke care outcomes improved. Stroke should be treated as an emergency, with immediate access to brain scanning and thrombolysis where appropriate, Treating stroke as an emergency and immediate admission to an acute stroke unit.25 26 27 28 and making sure that everyone Acute care who has a stroke is treated in a specialised stroke unit would Everyone who has a stroke should be treated in a high quality reap savings in terms of bed stroke unit for all of their stay in hospital.29 30 31 days in hospital and reduced Stroke units mortality rates. All stroke units should meet the criteria set out in clinical stroke Crucially, it would also help to guidelines and by the British Association of Stroke reduce the level of stroke-related Physicians.32 33 34 disability, allowing thousands of people to lead more independent Skills development and training lives after stroke. Improvements All staff working in emergency and acute care should have have been made but we would appropriate knowledge and skills around stroke, supported like to see more, particularly in through appropriate training.35 36 37 38 39 the provision of a 24/7 service for hyper-acute response.

8 Treating stroke as an emergency and making sure that everyone who has a stroke is treated in a specialised stroke unit would reap savings in terms of bed days in hospital and reduced mortality rates.

Nikki Camp A stroke survivor who benefited from timely hyper-acute stroke care. Daniel, Nikki’s husband, spotted her stroke and called 999 immediately. Nikki received thrombolysis and was back to work within months. ‘We were on our way back home from dropping our children at nursery. I had a headache and a kind of a fuzzy feeling in my head, I felt nauseous and a funny feeling down my left side. By the time we got home I couldn’t form words, I could barely mumble and just slumped in the corner of the car. Daniel recognised the symptoms and called 999 immediately. ‘I was taken to Good Hope Hospital where the stroke unit had been alerted, I was given a CT scan and then a clot busting drug. Very quickly after I was given that drug I was able to speak and could begin answering questions. ‘Without the clot busting drug, I wouldn’t be able to care for my children, work or enjoy our family life.’

9 2010 Life after stroke – from 2015 hospital into the community

Stroke can wreck The Stroke Association’s call to action people’s lives, and Discharge planning that of their families We believe that everyone who has a stroke should be offered a and friends, but with care plan43 44 45 that is co-ordinated by a stroke specialist46 and better support people have their discharge from hospital planned and implemented, preferably with ongoing support and advocacy in the can overcome more community for at least the first year. We would like to see early of the barriers caused supported discharge services encouraged in all areas. by stroke. Rehabilitation and support It is essential that stroke survivors have appropriate Making sure that every stroke assessment of their rehabilitation and support needs at an survivor gets a planned discharge early stage, including physical, psychological, sensory and from hospital with all of the social needs and that rehabilitation for relatively neglected rehabilitation and support issues such as visual and cognitive impairment is improved. services already in place is the The English Stroke Strategy states that everyone should get very least that is required. the intensity of rehabilitation they need for as long as they need Integrating health and social care it.47 The Northern Ireland Stroke Strategy states that by April services is critical in achieving a 2010 everyone will have access to appropriate acute and smooth transition from hospital community multi-disciplinary rehabilitation services.48 In Wales, into the community. Improving Stroke Services calls for a national protocol on the People should get as many referral of stroke patients to social services for community rehabilitation services as they support including home adaptations to be in place by March need for as long as they need 2010.49 We would like to see substantial progress towards them.40 41 Many will need these goals across the UK. continuing support for years after Secondary prevention their stroke to meet a wide variety of urgent, long-term needs.42 We would like secondary stroke prevention to be given a higher priority and for information and advice about risk factors and life style management to be given to all those who have had a stroke or TIA as this can prevent further strokes.50 GPs have a role to play in ensuring that regular assessments take place and appropriate medication is taken. GP practices should also ensure contact is made with voluntary sector organisations to establish support and continuity of secondary prevention measures for their patients and their families. Rehabilitation research We want to see more research into the benefits of different models of rehabilitation and care in the longer-term post-stroke.

10

Involvement in decisions about care We believe that stroke survivors and their carers should be involved in all decisions about their own care and support.51 This includes providing information to stroke survivors and carers in a manner tailored to their individual need.52 In addition, we would like to see appropriate structures in place to ensure that stroke survivors and carers can have an effective say in the design and delivery of local services.53 Self management We want stroke survivors and their carers to have access to appropriate self management programmes to help them recover and adjust to life after stroke.54 The Scottish Government has established a Self Management Fund to support progress for long-term conditions, including stroke, and we would like to Valerie Upton see similar developments across the UK.55 56 Valerie has been the main carer for Carers’ needs her husband Geoff since he had his We want to see carers encouraged to have their own needs stroke in 2001. assessed and, where agreed, the identified support should ‘When Geoff first left hospital I didn’t be put in place.57 58 59 60 know what to expect. It was all new Support and training for carers to me. I accepted all the information and rehabilitation we were given We would like to see additional stroke specific support and without question, it was only when I training for carers to help them cope with the physical, spoke to other people that I realised communication and cognitive impairments experienced by how much more help I needed. I felt stroke survivors,61 62 such as that provided by isolated and it was very much down The Stroke Association. to me to get any help or information we required. ‘I was so shocked by what had happened to Geoff that I suffered panic attacks, I had to give up my job at the Post Office and looking after our grandchildren twice a week. ‘It was literally a life changing experience for both of us. Day in, day out, it does get to you. But it’s got better over the years and we just try to make the best of things.’ People should get as many rehabilitation services as they need for as long as they need them. 11 2010 Life after stroke – 2015 long-term support

Meeting the long-term The Stroke Association’s call to action needs of stroke survivors is vital to A holistic approach to long-term support maximise their Holistic, needs-based services should be available to support independence and stroke survivors and their carers in the long-term. We would