Stroke Helpline 0303 3033 100 stroke.org.uk Your experience of stroke treatment, care and support Your experiences and stories are vital to the Stroke Association as they enable us to tell the government what it is like for strokes survivors so that we can call for improvements to stroke care and support. We will use the data, quotes and stories from the survey in our ongoing campaigning work. When doing this we will include your first name and a broad geographical are e.g London or Yorkshire. If you do not want us to use your name please do not include it in the survey. The closing date for the survey is 31 March 2016. If you would like more copies of this survey please ring 020 7566 0315. Please send you completed survey back to us putting it in an envelope and writing FREEPOST STROKE ASSOCIATION (in block capitals) on it. It doesn t need a stamp. Thank you for your time Section 1: This section of the survey is about you 1. Are you Male? Female? 2. What is your name? 3. Please give your year of birth 4. Where do you live: England Scotland Wales Northern Ireland Please give your postcode 5. Please describe your ethnicity? (Please tick one) White/European African/Caribbean Asian Mixed Hispanic/Latino Other 1
If you are a stroke survivor please go to section 2 If you are a carer please go to section 6 If you are neither a stroke survivor or a carer please go to section 7 Section 2: This section is about your stroke 6. When did you have your first stroke? 7. Please give details about any other strokes you have had. 8. About the impact of your stroke (please tick all that apply) Severe Moderate Minor None I have physical disabilities as a result of my stroke I have problems with speech and communication as a result of my stroke I have problems with swallowing as a result of my stroke I have problems with continence as a result of my stroke I have problems with depression or low mood as a result of my stroke I have problems with fatigue as a result of my stroke I have problems with my memory as a result of my stroke I have problems with confusion as a result of my stroke 2 I have problems with confidence as a result of my stroke
9. What has been the most difficult aspect of stroke to cope with? (Please tick one only) Physical Effects Cognitive or hidden effects Emotional effects Practical effects This box is for you to give more information about the impact of your stroke Section 3: This section is about your care in hospital 10. Thinking about your most recent stay in hospital as a result of a stroke. Please tick one that applies to your care after you left A&E. I spent all of my time in hospital in a stroke unit I spent most of my time in hospital in a stroke unit I spent a little of my time in hospital in a stroke unit I spent none of my time in hospital in a stroke unit Other If other, please explain 11. Quality of care during your stay in hospital. (please tick all that apply) Very good Good Adequate Poor Very poor N/A The care I received in the stroke unit was The care I received in the other wards was The care I received in A&E was 3
Please tell us more about your stay in hospital. What was good about your stay? What should have been better? 12. When you were in hospital how much understanding of the effects of your stroke did the hospital staff have? Completely A lot A little Very little None N/A Consultant Other doctors Nursing staff Care assistants Therapists Other staff (please specify) This box is for you to give more information about the staff in the hospital. What did you most appreciate about the support that you recieved? Was there any support you would have liked but did not recieve? 4
Section 4: This section is about what happened when you went home from hospital 13. When you went home from hospital was there a care plan in place setting out how your care needs would be met at home? Yes No Don t know Please give us more information about your transfer home from hospital. What went well and what could have been done better? 14. if you needed care when you went home did you feel that your carer had enough help or support to care for you properly? Yes No Don t know 15. When you went home from hospital is there anything that would have helped you that you didn't get? 5
Section 5: This section is about the care and support you received at home from people paid to care for you (i.e. not family or friends) 16. This questions is about whether you received enough therapy or support for the problems you had as a result of your stroke. Very good Good Adequate Poor Very poor N/A I had physical disabilities as a result of my stroke and the therapy I received was I had problems with speech and communication as a result of my stroke and the therapy I received was I had problems with swallowing as a result of my stroke and the therapy I received was I had problems with continence as a result of my stroke and the therapy I received was I had problems with depression or low mood as a result of my stroke and the therapy I received was I had problems with fatigue as a result of my stroke and the therapy I received was I had problems with my memory as a result of my stroke and the therapy or support I received was I had problems with confusion as a result of my stroke and the therapy or support I received was I had problems with confidence as a result of my stroke and the therapy or support I received was 17. Overall the care and support I received at home after my stroke was 6 Very good Good Acceptable Poor Very poor
18. Please give us more information about the support you have received at home. What has gone well and what could have been done better? 19. Please tell us how much you agree or disagree with the following statements Strongly Agreed Disagree agreed I had enough information about what was happening when I was in hospital Neither agree or disagree Strongly disagree N/A When I was in hospital I felt well supported by hospital staff I felt prepared when it was time to go home from hospital When I went home from hospital I felt abandoned I have enough care and support now that I am at home The therapy I received was effective Sometimes it is difficult to cope financially after my stroke Sometimes it is difficult to cope emotionally after my stroke My relationship with my carer is under strain If I need more help because of my stroke I know who to contact 7
20. Were you contacted after you went home to check how you were progressing and to see if you needed any more treatment or support? Yes No This box is for if you want to give more information 21. This question is for stroke survivors and is about the long term effect of stroke. Please pick three things from the following list that you are most concerned about and rank them 1, 2 and 3. (1 is the thing you are most concerned about) The effect on my family The effect on my health long term Navigating the health system for the support I need Understanding what benefits I m entitled to and how the benefits system works The cost for rehabilitation The availability of rehabilitation/treatment The possibility of returning to work Being able to progress in my career Being able to take care of myself Being able to live in my own home Finances and loss of income due to time off Other (please specify) 22. Stroke survivors should have a review, six months after their stroke, to see if they need more care or support. Did you get a review? Yes No Don t know If you had a review please describe what happened. If your review showed that you required further support did you recieve this? 8 Please go to section 7
Section 6: This section is for carers or friends and family who look after someone who has had a stroke 23. What year did you first start caring for the person who has had a stroke? 24. This question is about the impact of the stroke on the person you care for. The person I care for Severe Moderate Minor None Has a physical disabilities as a result of their stroke Has problems with speech and communication as a result of their stroke Has problems with swallowing as a result of their stroke Has problems with continence as a result of their stroke Has problems with depression or low mood as a result of their stroke Has problems with fatigue as a result of their stroke Has problems with my memory as a result of their stroke Has problems with confusion as a result of their stroke Has problems with confidence as a result of their stroke 25. Have you ever had a carer's assessment? 26. This question is about when the person you care for was in hospital after their stroke. Please tell us how much you agree or disagree with the following statements. Strongly agreed Agreed Neither agree or disagree Disagree I had enough information when the person I care for was in hospital Strongly disagree I felt prepared when the person I care for was discharged from hospital I have enough care and support now that the person I care for is at home? Sometimes it is difficult to cope as a carer If I need more help I know who to contact 9
27. This question is about the long term effect of stroke. Please pick three things from the following list that you are most concerned about and rank them 1, 2 and 3. (1 is the thing you are most concerned about) The effect on my family The effect on my health long term Navigating the health system for the support I need Understanding what benefits I m entitled to and how the benefits system works The cost for rehabilitation The availability of rehabilitation/treatment The possibility of returning to work Being able to progress in my career Being able to take care of myself Being able to live in my own home Finances and loss of income due to time off Other (please specify) 28. Please give us more information about the support you have had as a carer. What has been good about your experience? What support would have helped you as a carer? 29. Thinking about the impact of stroke on individuals and their families and on the cost of treatment and support, do you agree or disagree with the following statments? Strongly Agreed Neither Disagree agreed agree or disagree Stroke gets the attention it deserves Strongly disagree Many people do not understand the impact of stroke Stroke survivors don't get enough rehabilitation to help them recover 10
Section 7: Your views on what should happen now In 2016 we will be talking to the government about stroke. We will use the information in this survey to help us persuade the Government to work with us to improve stroke care, treatment and support. 30. This question is only for people who live in England. If you live in Scotland, Wales or Northern Ireland please go to the next question. One way we will use the information in this survey is to help us persuade the Government to work with us to improve stroke care and support. In 2007 the Government wrote a plan for stroke, the English National Stroke Strategy, and that has led to many improvements in care, treatment and support. The plan is coming to an end in 2017. What would you like to see happen? The plan is fine as it is and just needs to be extended We need a new plan for stroke We don t need a new plan just some key guidelines and goals This box is for anything else you would like to tell us about your experience of stroke care, treatment and support. 31. What one thing do you think the government should do to improve stroke care, treatment and support? Thank you for completing our survey. 11
Are you interested in finding out more about how you can help us campaign for improved stroke care treatment and support for everyone affected by stroke? Yes No Would you be interested to find out more about our media work and about telling your story? Yes No If you answered yes to either question please tell us how to contact you Name Postcode Telephone Email The information you have provided will be handled and held in accordance with the Data Protection Act 1998. We will keep the completed questionnaires for 3 years and then destroy them. Analysis of the responses will be done by the Stroke Association and by a third party who has been contracted to analyse the questionnaires. Item Code: A07M04 Stroke Association is a Company Limited by Guarantee, registered in England and Wales (No 61274). Registered office: Stroke Association House, 240 City Road, London EC1V 2PR. Registered as a Charity in England and Wales (No 211015) and in Scotland (SC037789). Also registered in Northern Ireland (XT33805) Isle of Man (No 945) and Jersey (NPO 369). 12