Struggling to recover Life after stroke in

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Developed in partnership with Dr Niamh Kennedy, Ulster University

Together we can conquer stroke

JN 1819.259 - Long Term Support Report_v3.indd 1 12/02/2019 13:53 Foreword We believe that every stroke survivor Stroke is a brain attack and can happen at any age, from birth to old has the right to make the best possible age, causing lifelong impacts. However, with the right treatment, care and support stroke survivors can make a good recovery and maintain recovery they can after stroke their independence and quality of life. Coping with life after stroke can be challenging More than a decade has passed since the 2008 Northern in many ways. Many people leave hospital feeling Ireland stroke strategy. However, too many stroke survivors A decade of frightened, confused and having to face physical, and their carers still tell us they feel abandoned when they psychological, financial and practical challenges. leave hospital. They struggle to access the rehabilitation unmet needs Too many stroke survivors struggle to access and support they need to recover. Our highly skilled appropriate support once they leave hospital and dedicated stroke workforce say they don’t have the 2008 including physiotherapy, speech therapy, emotional of all stroke resources and time they need to help people make the best Stroke strategy support and help to get back to work and family life. survivors recovery they can. This needs to change. Every stroke patient should 45% have access to appropriate Best practice guidelines recommend at least feel abandoned when they leave hospital. Over the last ten years there have been significant advances community rehabilitation 45 minutes a day of each type of rehabilitation in hospital stroke treatment in Northern Ireland with access services and psychological and therapy needed by stroke survivors for as long as They tell us that there is a big-drop in care from to lifesaving clot removal treatment Thrombectomy – emotional support. it’s of benefit to them1. However, the reality is that, hospital to home and that they are not getting the amongst the best in the UK. But we can still do better. on average, stroke survivors in Northern Ireland support they need which puts their recoveries at 2014 only receive around a third of that. According to the risk. For too many the support comes too late, The Bengoa Report stated that radically reorganising RQIA review of stroke services latest Sentinel Stroke National Audit Programme stops too soon, or they are not offered all the hospital stroke services should be a priority and that this Communication with stroke (SSNAP) report for 2016-17, stroke survivors in specialist therapy they need. would help save lives and reduce disability. We agree. But survivors about treatment and Northern Ireland received2: it is equally important that there is urgent investment and support needs to be improved. This needs to change. reform of stroke services across the entire pathway – from prevention through to long term support. between 10 and 20 While it is great that more people are surviving 2017 stroke it is vital that everyone affected by stroke Rehabilitation services and post-hospital support have Pre-consultation on reshaping minutes of receives the right support, at the right time when long been identified as the ‘Cinderella’ services of stroke stroke services physiotherapy per day they leave hospital so they can make the best services. The 2008 stroke strategy recommended all stroke Long-term support and recovery possible. patients should have access to specialist community psychological and emotional stroke care including physiotherapy, speech and language support for those affected by Northern Ireland needs a new stroke pathway therapy, counselling as well as more support for carers. stroke identified as particular between 9 and 13 which is properly resourced to provide the But unfortunately there hasn’t been adequate investment areas of need. lifelong support stroke survivors need. in these important services and many people affected by minutes of occupational stroke still struggle to recover. 2019 therapy per day Key juncture of the future of “I’m so grateful for the great care I received in We are at now at a key juncture for stroke services in stroke services hospital but I felt very lost when I was sent home. Northern Ireland. We call on everyone involved to seize this Many of the recommendations My brain had just had the biggest shock of its opportunity to work together to make the best possible of the 2008 Strategy and 2014 between 4 and 7 life and I was feeling shell shocked. I didn’t know recovery from stroke a priority. Review have still not been where to turn and felt a bit abandoned for few implemented fully. minutes of speech weeks. When I was sent home from hospital I Thanks to Dr Niamh Kennedy from Ulster University who and language therapy was given a few leaflets but I don’t think my brain conducted research in 2018 which informs this report. could really process that information at the time. We need action to be taken now to per day. It was just all too much.” Barry Macaulay, improve stroke care and support for -stroke survivor NI Director, Stroke Association people affected by stroke.

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JN 1819.259 - Long Term Support Report_v3.indd 2-3 12/02/2019 13:53 Our key findings The right rehab, at the right time Over the past year, the Stroke Association have undertaken a number There is good evidence linking the quality, intensity and of engagement activities across Northern Ireland with people promptness of rehabilitation with improved outcomes affected by stroke, carers and professionals about current stroke and reduced long term costs. services and opportunities to develop them in the future.

“After hospital I received 78% of stroke survivors We spoke to: very little support” said that the care and - stroke survivor support they received at home was poor or very poor.

305stroke carers75 of stroke professionals101 who individuals142 from survivors survivors work in stroke our voluntary Rehabilitation therapies, such as speech and language therapy and physiotherapy, are vital in services stroke support helping stroke survivors to manage and recover from any communication, physical or other groups disabilities as a result of their stroke.

However, many told us that they just did not receive enough rehabilitation, particularly when they went home, and that this made their recovery from stroke very difficult or impossible in some In particular there are gaps in: cases. Not having adequate rehabilitation undermines improvements in acute treatments.

•• the length and intensity of post-hospital rehabilitation Recommendation 1: The right therapy and support should be provided for people •• the provision of information to stroke survivors and their families when and where they need it and for as long as they need it. •• emotional support ✓ •• support for carers •• help getting back to work •• public awareness of stroke. We don’t have enough staff A third of stroke to provide the recommended In 2019 the Department of Health will consult with the public on the future of stroke services in survivors have problems Northern Ireland. It is vital that, as well as reshaping how acute stroke services are delivered, we amount of daily therapy” seize the opportunity to develop and implement a new system of long-term support for those with communication - speech therapist affected by stroke. This must address the areas of unmet need identified here and take action on following their stroke. the recommendations made in this report.

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JN 1819.259 - Long Term Support Report_v3.indd 4-5 12/02/2019 13:53 Better access to stroke Increase psychological and emotional information and support support for people affected by stroke

Leaving hospital and returning home was identified by many A shocking 90% of stroke survivors in Northern Ireland stroke survivors as a period of uncertainty. They told us that told us that their emotional and cognitive needs were one of the main reasons they feel abandoned when they not met once they left hospital. leave hospital is because they don’t know where to turn to for information or support. 54% of stroke 50% ‘often’ Many say they are not even told basic things about how a stroke could affect them or about how to prevent another stroke. Some need signposting to peer support or other services to help survivors said they or ‘always’ feel their recovery. Others need help in navigating the benefits system which can be confusing and ‘often’ or ‘always’ feel depressed or complicated for a stroke survivor with communication difficulties such as aphasia. anxious and worried have a low mood. following their stroke.

Recommendation 2: We encourage everyone involved in supporting people affected by stroke to use and share the information and Many stroke survivors told us that the focus We know that psychology services in Northern support provided by Stroke Association and other charities so that was often on their physical recovery, with little, Ireland are under pressure. While it is vital that ✓ no one affected by stroke feels abandoned. if any, attention paid to the emotional and there is increased investment in statutory psychological impact of their stroke. This is services, we also believe that the voluntary worrying given that many stroke survivors sector is ideally placed to help support people talk about a sense of loss and grief following through services such as the Stroke Helpline, their stroke and many experience depression counselling services and peer support groups. 67% of stroke survivors do not and anxiety. feel their physical needs are

well met after hospital. Recommendation 3: Increase investment in statutory services and commission the ✓ voluntary sector to meet unmet emotional and psychological needs “When I was sent home from hospital I was given “I was discharged from hospital Stroke Association with no emotional support to help a few leaflets but I don’t think my brain could Emotional Support Service really process that information at the time. But me deal with the after-effects of my stroke” when I was referred to the charities later for help The Stroke Association Emotional Support Service has been operating successfully in - stroke survivor with speech therapy and exercise, it made a really . It provides counselling and emotional positive impact on my recovery” support for stroke survivors, their carers and families. With the help of a qualified counsellor, “Everyone underestimates the - stroke survivor attendees explore issues arising from a difficulty and frustration of not stroke such as loss, adjustment, depression, relationship issues, anger and how to build being able to communicate” confidence. We are piloting this service in - stroke survivor Northern Ireland in 2019.

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JN 1819.259 - Long Term Support Report_v3.indd 6-7 12/02/2019 13:53 More support for carers More support for people who wish Caring for someone affected by stroke can be physically and to return to work emotionally demanding. In some cases, the lives of carers can be radically changed with some having to give up their jobs and spend most of their time at home. This can have a detrimental impact on The average age of stroke is falling, however younger stroke survivors their social lives and mental well-being. have told us there isn’t enough specific support for them. In some cases, younger stroke survivors require support with returning to work or coping with family life, as many may have young children. Recommendation 4: The rights of carers do not feel of family carers must be put on a prepared for their loved Health professionals we spoke to also feel that there is a legal footing, as outlined in Power 85% ✓ to People and all carers must one to come home from lack of community services to meet the needs of younger receive the support they need. hospital following a stroke. stroke survivors. We support Carers NI’s call for an appropriately funded cross- government plan which sets out of carers say they find “No consideration given that I how improved support for carers 98% it sometimes difficult was young, had kids and needed Around 1 in 4 strokes will be achieved. to cope. to return to work” happen to people under - stroke survivor the age of 65. “As a close family, this was of carers know who to our families’ stroke - it has 28% contact if they need affected us all” more help. “I was young and this was not Recommendation 5: The new stroke pathway must be designed - stroke survivor taken into consideration - I felt I became an 80 year old overnight” and resourced to meet the needs of ✓ younger stroke survivors and those Caring and you - stroke survivor who wish to return to work.

The Stroke Association Caring and You programme supports carers in a role that can often be emotionally and physically demanding. “Fatigue is a massive problem - Through the weekly sessions, carers will learn about: no one could help me” - stroke survivor •• stroke and the hidden effects •• how to safely support someone who has had a stroke •• where to go for support and advice •• practical tips on caring with confidence “We’re not staffed to provide the •• the importance of looking after their own health and well-being. degree of intensity required for The goal of the programme is for carers to be equipped in providing appropriate and optimal some patients. I feel they need care to their loved ones, whilst also being able to look after their own emotional and physical longer term input, particularly health. We are piloting this programme in Northern Ireland in 2019. to deal with issues such as return to driving or work.”

- health professional Young stroke survivors Lisa, Laura and Clodagh at the Stroke Association’s Step Out for Stroke event in Antrim.

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JN 1819.259 - Long Term Support Report_v3.indd 8-9 12/02/2019 13:53 Increase public understanding of What Next ? the hidden effects of stroke

Stroke causes more of stroke survivors The long awaited public disabilities than any other experience some level consultation on reshaping stroke conditions. Almost two 96% of fatigue following services in Northern Ireland will thirds of stroke survivors their stroke. begin in the coming months. in Northern Ireland leave hospital with a disability. People affected by stroke in Northern Ireland Recommendation 6: Enhance public deserve the best possible treatment and care. “No one should feel abandoned at the awareness and understanding of This will improve their quality of life and support Many of the people affected by stroke and them to make the best recovery possible. hospital gate. Let’s work together carers that we spoke to highlighted that ✓ stroke and its effects. to seize this golden opportunity to there is often low public awareness and We cannot have another decade of unmet needs create world class stroke services understanding of stroke, particularly the and underfunding of community based stroke which save lives, reduce disabilities hidden effects such as emotional issues and “Everyone thought I’d had a miracle care. While hospital stroke services are developed and support better life after stroke” fatigue. Many people also stated that these and improved, it is vital that rehabilitation and invisible effects can be a barrier to them recovery because I wasn’t in a wheelchair long term support for stroke survivors is not left carrying out day-to-day tasks independently and I “looked fine”. But every day is a behind and we invest in community based stroke #strugglingtorecover or returning to work. struggle. My speech is still badly effected care. Not receiving appropriate rehabilitation undermines the improvements in acute care. As well as raising awareness of ways to lower and I feel trapped and lonely” your risk of stroke, we believe it is important We’re calling for the development and - stroke survivor References for everyone working in stroke to enhance implementation of a regional stroke pathway, public understanding of the range, severity 1 Royal College of Physicians. (2016). National Clinical Guideline for Stroke. Available at: https:// which is appropriately funded, and meets www.strokeaudit.org/SupportFiles/Documents/Guidelines/2016-National-Clinical-Guideline- and long lasting impacts of stroke. This for-Stroke-5t-(1).aspx the needs of people affected by stroke from 2 Royal College of Physicians. (2017). Rising to the Challenge: The Fourth SSNAP Annual Report. will help more people affected by stroke to Memory and thinking Available at: https://www.strokeaudit.org/Documents/AnnualReport/2016-17-SSNAP-Annual- prevention to acute care through to long Report.aspx feel supported and empowered to become term support. 3 Stroke Association. (2016). A New Era for Stroke Campaign Report. Available at: https://www. socially active in their communities Vision stroke.org.uk/sites/default/files/anefs_report_web.pdf Speech Swallowing We need greater awareness of aphasia and recognition of stroke as a long term chronic condition Arm and hand weakness which requires support” Bowel and bladder control - health professional Pins and needles

Muscle and joint pain Numb skin Leg weakness and balance

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JN 1819.259 - Long Term Support Report_v3.indd 10-11 12/02/2019 13:53 For more information contact: Cathy Brolly JN 1819.259 Policy and Public Affairs Officer Email: [email protected] Telephone: 02890 508057

We are the Stroke Association.

We believe in life after stroke. That’s why we support stroke survivors to make the best recovery they can. It’s why we campaign for better stroke care. And it’s why we fund research to develop new treatments and ways of preventing stroke.

We’re here for you. Together we can conquer stroke. If you’d like to know more please get in touch.

Stroke Helpline: 0303 3033 100 Website: stroke.org.uk Email: [email protected] From a textphone: 18001 0303 3033 100

We are a charity and we rely on your support to change the lives of people affected by stroke and reduce the number of people who are struck down by this devastating condition. Please help us to make a difference today.

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Together we can conquer stroke

© Stroke Association 2018 Stroke Association is a Company Limited by Guarantee, registered in England and (No 61274). Registered office: Stroke Association House, 240 City Road, EC1V 2PR. Registered as a Charity in England and Wales (No 211015) and in Scotland (SC037789). Also registered in Northern Ireland (XT33805) (No 945) and (NPO 369).

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