Progress in Improving Stroke Care: Patient Survey. February 2010

Transcription

1 Progress in Improving Stroke Care: Patient Survey February

2 Contents Contents... 2 Summary of findings... 4 Methodology... 4 y Table: All respondents... 6 Profiling questions... 6 Question 1. For each of the following risk factors associated with stroke, please indicate whether you became aware of them before your stroke, after your stroke, or not at all? Question 2. Below is a list of some of the different places that you can get INFORMATION ABOUT STROKE. Can you please indicate whether you have found these places to be USEFUL sources of information? Question 3. Have you seen the current government campaign on stroke, 'Stroke: Act F.A.S.T'? Question 4. If you HAVE seen 'Stroke: Act F.A.S.T', to what extent do you agree or disagree with the two following statements? Question 5. When you were in hospital for your (most recent) stroke, did any of the following experiences happen to you? Question 6. How would you rate the treatment you received in hospital for your (most recent) stroke? Question 7. Before you were discharged from hospital, or shortly afterwards, were you provided with information on the following subjects? [If you are a carer, please provide your own personal opinion on the information you received.] - 24-hour helpline Question 8. Once you were discharged from hospital, how long was it before you had your first appointment with a rehabilitation worker (such as a physiotherapist, occupational therapist or a speech therapist)? Question 9. How do you rate the following services you might have received during your rehabilitation period? Question 10. How would you rate the care/treatment you received in the period immediately after hospital discharge and during your rehabilitation? Question 11. After you were discharged from hospital, and any intensive rehabilitation appointments had ended, how did you find the quality of your long-term care? Question 12. How would you rate the following services that your carer might have received? Question 13. How do you or your carer rate the level of coordination over the longterm between health care (for instance, the doctor and rehabilitation therapy) and social care (for instance, personal care)? Question 14. To what extent do you feel that your views were taken into account within your care plan? Question 15. How would you rate the quality of information ON STROKE PREVENTION that you have received from either the NHS or social services since your stroke? Question 16. If you are currently in employment, how understanding is your employer about your medical condition?

3 y Table: Comparing pre- and post- stroke responses Profiling questions Question Question Question Question Question Question Question Question Question Question Question Question Question Question Question

4 Summary of findings An online and postal survey, conducted between June to September 2009, gathered the views of 760 people with stroke or cared for people with The aim of the survey was to obtain up-to-date feedback on standards and quality of NHS and social care stroke services from a patient/ carer perspective. In addition by comparing the responses of patients / carers with experiences of stroke before and after, an assessment of how these services have changed since the National Audit Office (NAO) conducted its last review is made possible. Methodology The survey was conducted by PatientView. They used a two-stage survey methodology that overcomes this problem to ensure that patients opinions were explored before the questionnaire was designed. The process is designed to create patient-friendly surveys that allow patient groups to contribute their viewpoints during the period of survey design. Details about the approach were published in a July 2008 article in a peerreviewed journal [Alexandra Wyke, et al, What is Quality of Life for Patients?, The British Journal of Healthcare Management, July 2008, volume 4, issue 7, pages ]. Following the template described above, the study was undertaken in two parts: (1) During May-June 2009, an online and postal survey was conducted among 46 patient groups with an interest in stroke and an English geographical remit. The total number of people with stroke (mainly the groups members) represented by the respondents is at least 10,576. Through a series of open-ended questions, the respondent groups were asked to give their views about NHS services for people with The contributions made by the 46 patient groups helped in the drafting of a second questionnaire this time, for people with stroke (and their carers). (2) The second survey was undertaken between June 2009 and end-september An online/postal survey was conducted of 760 people with stroke (and their carers). Respondent patients and carers were recruited with the support of relevant patient groups notably Connect, Different Strokes, Speakability, and the Stroke Association, plus numerous local groups with an interest in Efforts were made to include the views of people from across the whole of England, and people from ethnic minorities. 4

5 The main subject areas considered in both the patient group and the patient survey were: Prevention. Access to diagnosis, acute care and treatment. Hospital discharge and rehabilitation. Longer-term care. Suggested improvements to NHS services for This document sets out the raw summary statistics, and we hope to replace this with a more accessible report on the patient survey in due course. The percentages in the following table are those of the entire sample (760) rather than the valid responses (i.e. excluding null responses) and therefore will differ slightly from the figures quoted in the our main value for money report. 5

6 y Table: All respondents Profiling questions Question a.) Have you had a stroke (or are you the carer of a person who has had a stroke)? - Response I care for someone who has had a y I have had a Question b.) Which of the following types of stroke was your most recent stroke? [If you are a carer, please answer on behalf of the person for whom you care.] - Response y Bleed Clot Do not know Transient ischaemic attack (TIA), or 'ministroke' Question c.) If you had to grade your most recent stroke, which of the following categories would you select? [If you are a carer, please answer on behalf of the person for whom you care.] - Response y Do not know I have had a mild stroke (or strokes) I have had a moderate stroke (or strokes). I have had a severe stroke (or strokes)

7 Question d.) Can you note the year when you had your first stroke (and, if you have had more than one stroke, the year of your most recent stroke)? [If you are a carer, please answer on behalf of the person for whom you care.] The year of your first - Response y Earlier The year of your most recent stroke (if you have had more than one stroke). - Response y Earlier

8 Not applicable to me because I have only had one Question e.) Are you male or female? [If you are a carer, please answer on behalf of the person for whom you care.] - Response y Female Male Question f.) Which age range do you fall into? [If you are a carer, please answer on behalf of the person for whom you care.] - Response y to or older Under Or write your age. y yrs old at time of both strokes in feb years old, but I had the stroke when I was

9 in September age 57 at time of stroke Iwas 63 when i had my stroke Now 61, Stroke happened when I was sixty five strokes at age Though I was 49 when I had the stroke! Question g.) Which of the following broad categories of ethnic origin best describes you? [If you are a carer, please answer on behalf of the person for whom you care.] - Response Black (including black British, African or Caribbean). y Do not wish to say East Asian (including Chinese British, Chinese, or other East Asian) Mixed Other South Asian (including Asian British, Bangladeshi, Indian, Pakistani, or Sri Lankan). White (including British, Irish or other European) Question h.) Would you describe the area in which you live as generally urban or generally rural? [If you are a carer, please answer on behalf of the person for whom 9

10 you care.] - Response y Rural (country) Urban (town) Question i.) In which county of England did you receive most of your stroke care? [If you are a carer, please answer on behalf of the person for whom you care.] - Response y Avon Bedfordshire Berkshire Buckinghamshire Cambridgeshire Cheshire Cleveland Cornwall Cumbria Derbyshire Devon Dorset Durham East Sussex Essex Gloucestershire Greater Manchester Hampshire Herefordshire Hertfordshire Humberside Kent Lancashire Leicestershire Lincolnshire London London (central) London (Central) Merseyside Norfolk North Yorkshire Northamptonshir

11 e Northumberland Nottinghamshire Oxfordshire Shropshire Somerset South Yorkshire Staffordshire Suffolk Surrey Tyne and Wear Warwickshire West midlands West Midlands West Sussex West Yorkshire Wiltshire Worcestershire Question j.) What is your employment status now? [You may tick more than one category, if relevant.] [If you are a carer, please answer on behalf of the person for whom you care.] - Working full-ti y Working fullti Working part-ti y Working partti Doing voluntary work. - Doing voluntary work. y

12 - Unemployed, looking for work. Unemployed, looking for work. y Unemployed, not looking for work. Unemployed, not looking for work. y On leave from current job. y On leave from current job Student. y Student Retired. y Retired

13 Question k.) Where do you currently live? [If you are a carer, please answer on behalf of the person for whom you care.] - Response y In a care home or nursing ho In my own house (or flat) on my own. In my own house (or flat) with my family, or with a friend. In sheltered housing Question 1. For each of the following risk factors associated with stroke, please indicate whether you became aware of them before your stroke, after your stroke, or not at all? [If you are a carer, could you please refer to YOUR OWN PERSONAL AWARENESS.] - Alcohol consumption. I have not been aware that this is a risk factor for y Atrial fibrillation (AF), or 'irregular heartbeat'. y 13

14 I have not been aware that this is a risk factor for Diabetes. I have not been aware that this is a risk factor for y I have not been aware that this is a risk factor for - Ethnic origins. y

15 - Family history of I have not been aware that this is a risk factor for y Heart disease. I have not been aware that this is a risk factor for y High blood pressure (hypertension). y

16 I have not been aware that this is a risk factor for High cholesterol. I have not been aware that this is a risk factor for y I have not been aware that this is a risk factor for - Genetic factors. y

17 - Lack of physical activity. I have not been aware that this is a risk factor for y Poor diet. I have not been aware that this is a risk factor for y Smoking. y

18 I have not been aware that this is a risk factor for Transient ischaemic attack (TIA), or 'mini-stroke'. I have not been aware that this is a risk factor for y Question 2. Below is a list of some of the different places that you can get INFORMATION ABOUT STROKE. Can you please indicate whether you have found these places to be USEFUL sources of information? [If you are a carer, could you please refer to YOUR OWN PERSONAL SITUATION.] - Speakability y Fairly useful I have received no information from here. Not at all useful Not very useful Very useful My GP. 18

19 y Fairly useful I have received no information from here. Not at all useful Not very useful Very useful The hospital. y Fairly useful I have received no information from here. Not at all useful Not very useful Very useful Rehabilitation workers (such as physiotherapists, or speech therapists). y Fairly useful I have received no information from here. Not at all useful Not very useful Very useful The media (newspapers, TV, etc). y Fairly useful I have received no information from

20 here. Not at all useful Not very useful Very useful The Stroke Association. y Fairly useful I have received no information from here. Not at all useful Not very useful Very useful Different Strokes. y Fairly useful I have received no information from here. Not at all useful Not very useful Very useful Connect. y Fairly useful I have received no information from here. Not at all useful Not very useful Very useful

21 - Other patient groups. y Fairly useful I have received no information from here. Not at all useful Not very useful Very useful NHS Choices website. y Fairly useful I have received no information from here. Not at all useful Not very useful Very useful NHS Direct. y Fairly useful I have received no information from here. Not at all useful Not very useful Very useful Other websites. y 21

22 Fairly useful I have received no information from here. Not at all useful Not very useful Very useful Question 3. Act F.A.S.T'? Have you seen the current government campaign on stroke, 'Stroke: - Response Do not know. [If you are ticking "Do not know", please skip question 4.] No. [If you are ticking "No", please skip question 4, and move onto question 5.] y Yes Question 4. If you HAVE seen 'Stroke: Act F.A.S.T', to what extent do you agree or disagree with the two following statements? [If you are a carer, could you please provide YOUR OWN PERSONAL OPINION.] - The FAST campaign accurately depicts the symptoms of y Agree Disagree Do not know Neither agree nor disagree Strongly Agree Strongly disagree The FAST campaign is effective at raising awareness about the symptoms of 22

23 y Agree Disagree Do not know Neither agree nor disagree Strongly Agree Strongly disagree Question 5. When you were in hospital for your (most recent) stroke, did any of the following experiences happen to you? [If you are a carer, please answer on behalf of the person for whom you care.] - When I arrived at hospital, a doctor or nurse conducted swallowing tests to see if I needed help eating. y Did NOT happen to Do not know This DID happen to While in hospital, I was mainly treated on a specialist stroke unit. y Did NOT happen to Do not know This DID happen to I was given a brain scan within 24 hours. Did NOT happen to y

24 Do not know This DID happen to I (or the person with me) was regularly asked by the hospital staff about my wants and needs. y Did NOT happen to Do not know This DID happen to The hospital staff let me (or the person with me) know what was happening to me, and what I should expect next. y Did NOT happen to Do not know This DID happen to My family/friends were given support by the hospital staff, to prepare them for the difficulties that lay ahead. y Did NOT happen to Do not know This DID happen to Question 6. How would you rate the treatment you received in hospital for your (most recent) stroke? [If you are a carer, please answer on behalf of the person for whom you care.] - Response 24

25 y Do not know Fair Good No treatment Poor Very good Very poor Question 7. Before you were discharged from hospital, or shortly afterwards, were you provided with information on the following subjects? [If you are a carer, please provide your own personal opinion on the information you received.] - 24-hour helpline. y Do not know No Yes Advice on further stroke prevention. y Do not know No Yes The contact details of the care team who helped in rehabilitation. y Do not know No

26 Yes Contact details of the nearest stroke club (support group). y Do not know No Yes Contact details about where carers can get support/training. y Do not know No Yes Contact details about where to get transport for the disabled (in rural areas). y Do not know No Yes Information about the benefits system. y Do not know No Yes

27 - Advice and guidance about practical matters (such as driving, returning to work, long-term effects of stroke, etc). y Do not know No Yes Advice about diet and nutrition. y Do not know No Yes Advice on where to obtain care from the private sector. y Do not know No Yes Advice following a social service assessment. y Do not know No Yes Question 8. Once you were discharged from hospital, how long was it before you 27

28 had your first appointment with a rehabilitation worker (such as a physiotherapist, occupational therapist or a speech therapist)? [If you are a carer, please answer on behalf of the person for whom you care.] - Response y weeks weeks Do not know More than 12 weeks Within 2 weeks Question 9. How do you rate the following services you might have received during your rehabilitation period? [If you are a carer, please answer on behalf of the person for whom you care.] If the service was not provided you, can you tick the appropriate column. - Exercise instructors / leisure centres. y Do not know Fair Good Poor Very good Very poor Financial support. y Do not know Fair Good Poor Very good Very poor

29 - Help with driving. y Do not know Fair Good Poor Very good Very poor Home visits to check for suitability of living conditions. y Do not know Fair Good Poor Very good Very poor Occupational therapy (advice about going back to work). y Do not know Fair Good Poor Very good Very poor Patient support groups. 29

30 y Do not know Fair Good Poor Very good Very poor Physiotherapy. y Do not know Fair Good Poor Very good Very poor Psychological support. y Do not know Fair Good Poor Very good Very poor Respite services and other support for your carer/family. y 30

31 Do not know Fair Good Poor Very good Very poor Speech and language therapy. y Do not know Fair Good Poor Very good Very poor Social services / adult care services. y Do not know Fair Good Poor Very good Very poor Support from your GP. y Do not know Fair

32 Good Poor Very good Very poor Other medical care. y Do not know Fair Good Poor Very good Very poor Question 10. How would you rate the care/treatment you received in the period immediately after hospital discharge and during your rehabilitation? [If you are a carer, please answer on behalf of the person for whom you care.] - Response y Do not know Fair Good Poor Very good Very poor Question 11. After you were discharged from hospital, and any intensive rehabilitation appointments had ended, how did you find the quality of your longterm care? [If you are a carer, please answer on behalf of the person for whom you care.] - Regular monitoring of my condition by the GP, or primary care nurse, to prevent further strokes. y

33 Fair Good Not needed by Poor Very good Very poor Out-patient appointments with the hospital stroke doctor. y Fair Good Not needed by Poor Very good Very poor Regular review of my personal care plan with a social care provider/stroke coordinator. y Fair Good Not needed by Poor Very good Very poor Personal care support in my ho y 33

34 Fair Good Not needed by Poor Very good Very poor Help returning to work. y Fair Good Not needed by Poor Very good Very poor Psychological support eg. emotional support/counselling. y Fair Good Not needed by Poor Very good Very poor Ongoing physiotherapy. y 34

35 Fair Good Not needed by Poor Very good Very poor Ongoing speech therapy. y Fair Good Not needed by Poor Very good Very poor Question 12. How would you rate the following services that your carer might have received? [If you do not have a carer, please skip this question and move onto question 13.] [If you are a carer, please provide your own personal opinion.] - Access to respite care. y Fair Good Not needed by my carer my carer Poor Very good Very poor Emotional support (such as counselling). 35

36 y Fair Good Not needed by my carer my carer Poor Very good Very poor Information about y Fair Good Not needed by my carer my carer Poor Very good Very poor Training in how to support me at ho y Fair Good Not needed by my carer my carer Poor Very good Very poor Separate social-care needs assessment. 36

37 y Fair Good Not needed by my carer my carer Poor Very good Very poor Question 13. How do you or your carer rate the level of coordination over the longterm between health care (for instance, the doctor and rehabilitation therapy) and social care (for instance, personal care)? [If you are a carer, please provide your own personal opinion.] - Response y Do not know Fair Good Poor Very good Very poor Question 14. To what extent do you feel that your views were taken into account within your care plan? [If you are a carer, please provide your own personal opinion.] - Response y A little A lot I do not have a care plan Not at all Question 15. How would you rate the quality of information ON STROKE 37

38 PREVENTION that you have received from either the NHS or social services since your stroke? (This information might be printed, or it might be verbal information from doctors, nurses, therapists, etc.) [If you are a carer, please answer on behalf of the person for whom you care.] - Response y Do not know Fair Good Poor Very good Very poor Question 16. If you are currently in employment, how understanding is your employer about your medical condition? [If you are a carer in employment, please answer about your own employer's understanding of your own situation.] - Response Do not know (or this question is not relevant to me). y Fairly understanding Not at all understanding Not very understanding Very understanding

39 y Table: Comparing pre- and post- stroke responses Profiling questions Question a.) Have you had a stroke (or are you the carer of a person who has had a stroke)? - Response pre I care for someone who has had a y I have had a I care for someone who has had a I have had a I care for someone who has had a I have had a Question b.) Which of the following types of stroke was your most recent stroke? [If you are a carer, please answer on behalf of the person for whom you care.] - Response y Bleed Clot Do not know Transient ischaemic attack (TIA), or 'ministroke' Bleed Clot Do not know Transient ischaemic attack

40 pre (TIA), or 'ministroke' Bleed Clot Do not know Transient ischaemic attack (TIA), or 'ministroke' Question e.) Are you male or female? [If you are a carer, please answer on behalf of the person for whom you care.] - Response pre y Female Male Female Male Female Male Question f.) Which age range do you fall into? [If you are a carer, please answer on behalf of the person for whom you care.] - Response y Under to or older

41 pre Under to or older Under Question g.) Which of the following broad categories of ethnic origin best describes you? [If you are a carer, please answer on behalf of the person for whom you care.] - Response pre South Asian (including Asian British, Bangladeshi, Indian, Pakistani, or Sri Lankan). White (including British, Irish or other y European) Black (including black British, African or Caribbean) Do not wish to say East Asian (including Chinese British, Chinese, or other East Asian) Mixed Other South Asian (including Asian British, Bangladeshi, Indian, Pakistani, or Sri Lankan). White (including British, Irish or other European) Black (including black British, African or

42 Caribbean). Do not wish to say Mixed Other South Asian (including Asian British, Bangladeshi, Indian, Pakistani, or Sri Lankan). White (including British, Irish or other European). Question h.) Would you describe the area in which you live as generally urban or generally rural? [If you are a carer, please answer on behalf of the person for whom you care.] - Response pre y Rural (country) Urban (town) Rural (country) Urban (town) Rural (country) Urban (town) Question j.) What is your employment status now? [You may tick more than one category, if relevant.] [If you are a carer, please answer on behalf of the person for whom you care.] - Working full-ti pre y Working fullti Working fullti

43 - Working part-ti pre y Working partti Working partti pre - Doing voluntary work. y Doing voluntary work Doing voluntary work Doing voluntary work Unemployed, looking for work. pre y Unemployed, looking for work Unemployed, looking for work. 43

44 pre - Unemployed, not looking for work. Unemployed, not looking for work. y Unemployed, not looking for work Unemployed, not looking for work pre - On leave from current job. y On leave from current job On leave from current job On leave from current job Student. pre y Student Student

45 pre - Retired. y Retired Retired Retired Question k.) Where do you currently live? [If you are a carer, please answer on behalf of the person for whom you care.] - Response pre In my own house (or flat) with my family, or with a friend. y In a care home or nursing ho In my own house (or flat) on my own. In my own house (or flat) with my family, or with a friend In sheltered housing In a care home or nursing ho In my own house (or flat) on my own. In my own house (or flat) with my family, or with a

46 friend. In sheltered housing Question 1. For each of the following risk factors associated with stroke, please indicate whether you became aware of them before your stroke, after your stroke, or not at all? [If you are a carer, could you please refer to YOUR OWN PERSONAL AWARENESS.] - Alcohol consumption. pre y I have not been aware that this is a risk factor for I have not been aware that this is a risk factor for

47 pre - Atrial fibrillation (AF), or 'irregular heartbeat'. I have not been aware that this is a risk factor for y I have not been aware that this is a risk factor for I have not been aware that this is a risk factor for Diabetes. y

48 pre I have not been aware that this is a risk factor for I have not been aware that this is a risk factor for Ethnic origins. y

49 pre I have not been aware that this is a risk factor for I have not been aware that this is a risk factor for Family history of y I have not been aware that this is a risk factor for

50 pre I have not been aware that this is a risk factor for pre I have not been aware that this is a risk factor for - Heart disease. y I have not been aware that this is a risk factor for

51 I have not been aware that this is a risk factor for pre - High blood pressure (hypertension). y I have not been aware that this is a risk factor for I have not been aware that this is a risk factor for

52 pre - High cholesterol. y I have not been aware that this is a risk factor for I have not been aware that this is a risk factor for Genetic factors. y

53 pre I have not been aware that this is a risk factor for I have not been aware that this is a risk factor for Lack of physical activity. y

54 pre I have not been aware that this is a risk factor for I have not been aware that this is a risk factor for Poor diet. y I have not been aware that this is a risk factor for

55 pre I have not been aware that this is a risk factor for pre - Smoking. y I have not been aware that this is a risk factor for

56 I have not been aware that this is a risk factor for pre - Transient ischaemic attack (TIA), or 'mini-stroke'. y I have not been aware that this is a risk factor for I have not been aware that this is a risk factor for

57 Question 2. Below is a list of some of the different places that you can get INFORMATION ABOUT STROKE. Can you please indicate whether you have found these places to be USEFUL sources of information? [If you are a carer, could you please refer to YOUR OWN PERSONAL SITUATION.] - Speakability pre y Fairly useful I have received no information from here Fairly useful I have received no information from here Not at all useful Not very useful Very useful Fairly useful I have received no information from here Not at all useful Not very useful Very useful pre - My GP. y Fairly useful Very useful Fairly useful I have received no information from here Not at all useful Not very useful Very useful Fairly useful

58 I have received no information from here. Not at all useful Not very useful Very useful pre - The hospital. y Fairly useful Not very useful Very useful Fairly useful I have received no information from here Not at all useful Not very useful Very useful Fairly useful I have received no information from here Not at all useful Not very useful Very useful Rehabilitation workers (such as physiotherapists, or speech therapists). y Fairly useful Not very useful Very useful Fairly useful I have received no information from here. 58

59 pre Not at all useful Not very useful Very useful Fairly useful I have received no information from here. Not at all useful Not very useful Very useful pre - The media (newspapers, TV, etc). y Fairly useful Not very useful Very useful Fairly useful I have received no information from here Not at all useful Not very useful Very useful Fairly useful I have received no information from here Not at all useful Not very useful Very useful The Stroke Association. y Fairly useful Not very useful Very useful

60 pre Fairly useful I have received no information from here. Not at all useful Not very useful Very useful Fairly useful I have received no information from here Not at all useful Not very useful Very useful pre - Different Strokes. y Fairly useful I have received no information from here. Not very useful Very useful Fairly useful I have received no information from here Not at all useful Not very useful Very useful Fairly useful I have received no information from here Not at all useful Not very useful Very useful

61 pre - Connect. y Fairly useful I have received no information from here. Not very useful Very useful Fairly useful I have received no information from here Not at all useful Not very useful Very useful Fairly useful I have received no information from here Not at all useful Not very useful Very useful Other patient groups. y Fairly useful I have received no information from here Very useful Fairly useful I have received no information from here Not at all useful Not very useful Very useful

62 pre Fairly useful I have received no information from here. Not at all useful Not very useful Very useful pre I have received no information from here. - NHS Choices website. y Not very useful Fairly useful I have received no information from here Not at all useful Not very useful Very useful Fairly useful I have received no information from here Not at all useful Not very useful Very useful NHS Direct. y Fairly useful I have received no information from here

63 pre Fairly useful I have received no information from here. Not at all useful Not very useful Very useful Fairly useful I have received no information from here Not at all useful Not very useful Very useful pre - Other websites. y Not very useful Very useful Fairly useful I have received no information from here Not at all useful Not very useful Very useful Fairly useful I have received no information from here Not at all useful Not very useful Very useful Question 3. Have you seen the current government campaign on stroke, 'Stroke: Act F.A.S.T'? - Response 63