The Stroke Association conducted the largest ever survey of stroke survivors undertaken in the UK to get a better understanding of the issues facing stroke survivors in their daily lives. Joe Korner looks at the responses.

There has been rapid progress in the acute treatment of stroke over the last five years. The National Stroke Strategy in England and similar plans in the other three UK nations have ensured that the majority of stroke patients spend most of their hospital stay on a stroke unit. And the proportion having brain imaging and thrombolysis treatment within three hours has risen. 

As a result stroke mortality rates are falling, and this is most dramatic in London where a total reorganisation in acute stroke care across the capital has seen a marked and fast improvement in outcomes and is also producing significant savings in the cost of acute stroke care.

However, anecdotal evidence from our daily interactions with stroke survivors has clearly indicated that progress in improving post hospital stroke care has been lagging behind.

Therefore the Stroke Association conducted a survey of stroke survivors and carers in the UK to get a better understanding of the issues facing stroke survivors in their daily lives. With 2,200 responses, this is the largest ever survey of stroke survivors undertaken in the UK.

The evidence from the survey supports what stroke survivors and their families have been telling us anecdotally.  Of particular concern is that a large proportion of people are not having their needs assessed and an even larger percentage do not have a care plan.

  • In England 39 per cent of stroke survivors had not been assessed for services; the comparative figures for Northern Ireland were 24 per cent; in Scotland 45 per cent had not has an assessment; and in Wales it was 44 per cent.
  • In England 60 per cent of stroke survivors had not received a care plan. In Northern Ireland, 46 per cent had not received one, while in Scotland and Wales the figures were 71 per cent and 64 per cent respectively.

Assessments and care plans are crucial to making sure that health and social care services are joined up; that the ongoing needs of stroke survivors and their carers are noted and addressed; and that stroke survivors are supported to reach as much independence as possible.

In addition, on-going reviews of survivors’ health and social care needs are not happening.  Best practice in each of the four nations states that stroke survivors should have their health and social care needs regularly reviewed at six weeks after leaving hospital, six months and then annually.

However, in England 47 per cent of respondents had only ever had one review, in Northern Ireland this was 40 per cent while in Scotland and Wales the figures were 39 per cent and 54 per cent respectively.

And these problems were not confined to stroke survivors. 39 per cent of carers said they had not had an assessment of their needs, perhaps because they were unaware they had a right to one.

This lack of assessment, care planning and on-going reviews needs to be addressed if the barriers between health and social care support are to be bridged. Across the UK, 34 per cent of survivors and their carers reported problems with either poor or non-existent co-working between health and social care providers.

The Daily Life Survey has also revealed worrying reductions in the provision of long term support services for stroke survivors. 18 per cent of respondents in England reported that the services they relied upon had been withdrawn in the previous 12 months, even though their needs had remained the same or had increased.  

In Scotland the figure was 10 per cent and 18 per cent in Wales. 15 per cent said that this had slowed down their rehabilitation and over 10 per cent reported that reduction of services had led to more work for their carers. Over a quarter (27 per cent) also reported that this had had an impact on their personal finances.

The Stroke Association’s Daily Life Survey provides a snapshot of the challenges stroke survivors are facing and demonstrates a sharp contrast to the tremendous progress that has been made in improving acute stroke care. The key challenge for local providers and commissioners of health and social care is to maximise the recovery of all stroke survivors though providing seamless continuation of care from hospital into the community and long term support. 

The full report can be downloaded from www.stroke.org.uk/campaigns.

Case study: Lafrance Gordon’s story

Former welder, music promoter and fitness enthusiast Lafrance Gordon had a stroke in 2001, aged just 41. “One night I was feeling unusually tired and decided to sleep on the floor, because of a chronic back condition. Early the next morning, I tried to get up and found I couldn’t,” recalls Lafrance. “My partner Veresteen told me she thought I had had a stroke and she called the doctor immediately.”

For Lafrance, formerly the opening batsman with the Bristol West Indies Cricket Club, recovery has been slow but steady, and he gives full credit to the NHS for the care he received. He had physiotherapy and occupational therapy on discharge, and was given dietary advice, especially about salt.

“When I first got back home it was awful. I felt isolated as I had to be downstairs. I remember creeping out of bed, putting my feet on the ground and trying to walk. I made it to the hallway and looked up the staircase. I knew with sheer determination I could get up there. I had a really good therapist who worked with me for six months, took me to the gym and on my first walk. I wanted to walk to the cricket ground where I used to play. I practiced every day and would go 10 yards, 20 yards, 30 yards and then stop less each time.

“Through the Stroke Association, I became involved in the Bristol half-marathon and then went on to climb Pen Y Fan in the Brecon Beacons. I fell in love with the mountains and decided that would be my motivation to recover even more. In May 2008, I reached the summit of Snowdon.”

Lafrance has since become a volunteer for the Stroke Association, appearing on TV and radio. After a course in journalism, he began working on a radio station and hosted a popular programme. “I also help run a service called Gordon House Project which helps stroke survivors in the Bristol area to understand what stroke is, and offer tips to help them recover.”

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