1. Stroke helplineWebsite 0845 3033 100www.stroke.org.uk The Stroke Association Needs Survey UK Stroke Assembly Birmingham 27 June 2011 Jon Barrick CEO

2. Stroke helplineWebsite 0845 3033 100www.stroke.org.uk Stroke helplineWebsite 0845 3033 100www.stroke.org.uk Who are we? Not for Profit Charity Work in Scotland, Wales, England, N Ireland Around 340 services 780 staff 5000 trained volunteers, Around 9000 other people help us each year Work with around 45,000 stroke survivors and carers each year

3. Stroke helplineWebsite 0845 3033 100www.stroke.org.uk Stroke helplineWebsite 0845 3033 100www.stroke.org.uk We are service providers People for last 20 years have said After discharge from hospital…“It was like falling off a cliff edge – suddenly everything stopped” So have been building services primarily after hospital in longer term support for many years- particularly communication support for people with aphasia, and family and carer support

4. Stroke helplineWebsite 0845 3033 100www.stroke.org.uk Stroke helplineWebsite 0845 3033 100www.stroke.org.uk Stroke survivors needs come first Needs and wants of stroke survivors paramount Also give great importance to needs of the family, as these are people affected by stroke too!

5. Stroke helplineWebsite 0845 3033 100www.stroke.org.uk Stroke helplineWebsite 0845 3033 100www.stroke.org.uk Why a Needs Survey? Evidence about the needs of stroke survivors gets thinner and thinner the further from the stroke you go. Through our helpline and our community based services we have plenty of anecdotal stories about needs. But we had no systematic knowledge of the extent of people’s needs or whether they are being met.

6. Stroke helplineWebsite 0845 3033 100www.stroke.org.uk Stroke helplineWebsite 0845 3033 100www.stroke.org.uk Why a Needs Survey? In 2005 the NAO report stated that there are almost half a million stroke survivors in England with long term disabilities. Until we commissioned the Needs Survey we had very little proven evidence about long term health or social care needs. We had knowledge but no data This survey comes at a crucial moment - when we are going to have to demonstrate the vital importance for the Life After Stroke services that help to meet those needs.

7. Stroke helplineWebsite 0845 3033 100www.stroke.org.uk Stroke helplineWebsite 0845 3033 100www.stroke.org.uk

8. Stroke helplineWebsite 0845 3033 100www.stroke.org.uk Stroke helplineWebsite 0845 3033 100www.stroke.org.uk

9. Stroke helplineWebsite 0845 3033 100www.stroke.org.uk Stroke helplineWebsite 0845 3033 100www.stroke.org.uk

10. Stroke helplineWebsite 0845 3033 100www.stroke.org.uk Stroke helplineWebsite 0845 3033 100www.stroke.org.uk Stroke Association needs survey 49% of stroke survivors report unmet needs over time Ranging from health related to work, family, friendships' break down, and awful financial hardship. MORE then half report unmet needs for information Fatigue a problem reported by staggering 79% 59% suffer unmet or partially met pain needs

11. Stroke helplineWebsite 0845 3033 100www.stroke.org.uk Stroke helplineWebsite 0845 3033 100www.stroke.org.uk Are generic services meeting needs? Politically, there is a drive for commissioners to focus on generic service provision as a way to save money. The Needs Survey indicates that for a significant proportion of stroke survivors, generic services are failing to meet needs.

12. Stroke helplineWebsite 0845 3033 100www.stroke.org.uk Stroke helplineWebsite 0845 3033 100www.stroke.org.uk Are generic services meeting needs?

13. Stroke helplineWebsite 0845 3033 100www.stroke.org.uk Stroke helplineWebsite 0845 3033 100www.stroke.org.uk Are generic services meeting needs? We need to see significant improvement in a range of generic services if stroke survivors’ needs are to be met. But we also need better co-ordination and care planning for stroke survivors to ensure they get a complete package of specialist and generic services to meet their needs.

14. Stroke helplineWebsite 0845 3033 100www.stroke.org.uk Stroke helplineWebsite 0845 3033 100www.stroke.org.uk Specialised stroke services So, what about stroke specific services? We have seen dramatic improvement in acute services and we are starting to see attention being focussed on supported discharge and community based rehabilitation. But this research reveals that we urgently need to make progress in improving long term stroke services.

15. Stroke helplineWebsite 0845 3033 100www.stroke.org.uk Stroke helplineWebsite 0845 3033 100www.stroke.org.uk Specialised stroke services Long-term, stroke specific needs have been neglected. Part of the problem is the lack of interest, and therefore evidence about whether (or what) specific interventions might effectively address needs after the acute and rehabilitation phases, from researchers. However, it is unacceptable to have such high proportions of stroke survivors living with needs for which there is little or no support.

16. Stroke helplineWebsite 0845 3033 100www.stroke.org.uk Stroke helplineWebsite 0845 3033 100www.stroke.org.uk Specialised stroke services At a time of cuts and dramatic changes in commissioning, we must push hard to defend our grow services in these areas. We must use this data, together with stroke survivors’ personal stories, to argue strongly for full stroke provision across the whole stroke care pathway and especially in the longer term.

17. Stroke helplineWebsite 0845 3033 100www.stroke.org.uk Stroke helplineWebsite 0845 3033 100www.stroke.org.uk Financial impact of stroke 31% faced extra expenses following their stroke. 18% experienced a drop in their income. And the more deprived a stroke survivor is, the more they are likely to experience a drop in income.

18. Stroke helplineWebsite 0845 3033 100www.stroke.org.uk Stroke helplineWebsite 0845 3033 100www.stroke.org.uk Financial impact of stroke We have seen a big increase in the number of people applying to The Stroke Association for grants to buy basic things such as a bed, or an appropriate washing machine. Changes to Incapacity benefit and Disability Living Allowance will impact on stroke survivors – so while we are not experts in the welfare system, we will need to advocate on behalf of stroke survivors. And the paucity of support to help stroke survivors back into work needs to be addressed.

19. Stroke helplineWebsite 0845 3033 100www.stroke.org.uk Stroke helplineWebsite 0845 3033 100www.stroke.org.uk Social impact of stroke Mobility problems affect ability to maintain relationships 50% reported problems with getting out and about 46% of the people who had a partner at the time of their stroke said it had a negative impact on their relationship. A quarter said the stroke had had a negative impact on their family relationships.

20. Stroke helplineWebsite 0845 3033 100www.stroke.org.uk Stroke helplineWebsite 0845 3033 100www.stroke.org.uk Relationships Emotional problems 73% unmet needs, or needs only partially met 67% report change for the worse in leisure activities Social isolation, mental health consequences

21. Stroke helplineWebsite 0845 3033 100www.stroke.org.uk Stroke helplineWebsite 0845 3033 100www.stroke.org.uk Social impact of stroke The social isolation that results from this can have a profound impact on someone’s general well being, their mental health and their long term chances of regaining independence. That’s why we believe that our services are so crucial – not because you can always measure a specific health improvement amongst our service users, but because of the outcomes they report to us: the enhancement in their well being that our services can facilitate. “The Stroke Association gave me back my life. A lady came to see us to offer me things I could do – without that I would still be sitting in my home with no new hobbies or friends who could understand what it is like.” Michael Bell, stroke survivor.

22. Stroke helplineWebsite 0845 3033 100www.stroke.org.uk Stroke helplineWebsite 0845 3033 100www.stroke.org.uk A bleak picture long term Fifth of people had a loss of income after stroke Third with higher personal living costs as a result of their stroke Each person had around 3 unmet needs Those with communication disabilities were significantly more likely to suffer negative problems

23. Stroke helplineWebsite 0845 3033 100www.stroke.org.uk Stroke helplineWebsite 0845 3033 100www.stroke.org.uk Stroke Information Over half of respondents said they wanted more information about their stroke. It is depressing that despite the wealth of good information that exists; despite the inclusion of information in national guidelines and strategies, that so many stroke survivors still need basic information about their stroke. It is also alarming that 37% wanted information about diet, a prerequisite for secondary prevention.

24. Stroke helplineWebsite 0845 3033 100www.stroke.org.uk Stroke helplineWebsite 0845 3033 100www.stroke.org.uk Information services Website over 5 million hits per year Telephone and email helpline 23,000 enquiries per annum 1.8 million pieces of information distributed per annum Works to quality control system ratified by NHS on medical information

25. Stroke helplineWebsite 0845 3033 100www.stroke.org.uk Stroke helplineWebsite 0845 3033 100www.stroke.org.uk Stroke Information We know that more and more stroke units are providing information to stroke patients. At The Stroke Association we have seen dramatic increases in demand for our accredited literature and the information pages of our website. Perhaps the most important message to take home from this part of the Needs Survey is to re- iterate that information provision must be seen as a process. People’s information needs need to addressed and re-addressed at every stage of the pathway.

26. Stroke helplineWebsite 0845 3033 100www.stroke.org.uk Stroke helplineWebsite 0845 3033 100www.stroke.org.uk Needs survey is a wake up call In the last decade attitudes about stroke have changed dramatically. We no longer think there is nothing you can do about stroke. Stroke units, thrombolysis, stem cell research all demonstrate that there are existing and possible future treatments for stroke. When it comes to peoples attitudes about the needs of stroke survivors one, two or five years after their stroke, many still have a view that there’s nothing we can do. The Needs Survey is a wake up call – the needs of stroke survivors are real, they are measurable and they can and should be met.

27. Stroke helplineWebsite 0845 3033 100www.stroke.org.uk Stroke helplineWebsite 0845 3033 100www.stroke.org.uk Support Groups 61% of people who had had a stroke said they didn’t want to join one. 25% didn’t know of the existence of a local group Of those who had participated ; 66% found it helpful or helpful to some extent 33% not helpful

28. Stroke helplineWebsite 0845 3033 100www.stroke.org.uk Stroke helplineWebsite 0845 3033 100www.stroke.org.uk The worry is not that we aim too high and fall short, but rather that we set our sights too low and achieve too little progress Michaelangelo

29. Stroke helplineWebsite 0845 3033 100www.stroke.org.uk Stroke helplineWebsite 0845 3033 100www.stroke.org.uk Thank you to; Many thanks to the study team and all of the other collaborators in this research who have done a fantastic piece of work: Siobhan Crichton, Nina Fudge, Eva Gordon, Chris McKevitt, Judith Redfern, Tony Rudd, Anita Sheldenkar, Charles Wolf, Anne Forster, John Young, Nicky Fasey, Irwin Nazareth, Louise Silver, Peter Rothwell.

30. Stroke helplineWebsite 0845 3033 100www.stroke.org.uk