Information gap puts stroke survivors at greater risk

Stroke survivors are not getting the vital information they need on leaving hospital which is severely jeopardising their future health, claims a new study from The Stroke Association.

The study launches a national campaign 'Nobody Told Me' and draws on current research and new evidence highlighting the important health advice that stroke survivors need on discharge from hospital. The Stroke Association calls on healthcare commissioners to underline who is responsible for providing this information, ensuring that stroke survivors, their carers and families are fully supported.

The study found that vital health information on how to prevent further strokes as well as signposting to relevant rehabilitation services, access to benefits and even details on prescribed medication was severely lacking. Stroke survivors are left feeling abandoned on discharge with much lower prospects of a good long-term recovery.

Joe Korner, Director of Communications at The Stroke Association said:

"After the trauma of stroke getting the right information is vital for the best recovery. And some of that information can quite literally save your life. It is scandalous that people can be leaving hospital after a stroke without the vital information they need to help prevent another one occurring. This basic, yet life-saving information provides a safety net to thousands of stroke survivors who can easily fall through the gaps on leaving hospital - a time when they most need support.

"Stroke can have a devastating impact on peoples' lives. Failure to provide stroke patients with appropriate information about the services and support they will need in the community when they leave hospital creates a black hole. Too often we hear from stroke survivors and their families that they felt abandoned and lost after leaving hospital. This can lead to slower recovery, increased disability, loss of independence and self esteem, increased depression and mental health problems, reduced employment prospects, the spectre of poverty and a huge burden on careers."

• Despite the fact that advice on simple lifestyle changes like healthy eating, exercise and stopping smoking can significantly cut the risk of a second stroke, the study found that nearly 50 per cent of stroke patients were not given any information about dietary changes. Moreover, one third of stroke survivors said they were not given any information about physical exercise.

• The risk of a recurrent stroke is 30-43 per cent within five years. Even moderate physical activity can reduce the risk of stroke by up to 27 per cent and eating five portions of fruit and vegetables a day can cut the risk of stroke by 25 per cent.

• The study also found that around a quarter of stroke patients leave hospital without a clear understanding of the purpose of the medication they have been given to take at home. Information from hospital staff about local and voluntary support groups for people who have had a stroke also falls short with over half not receiving any.

• When people are given information on discharge it is often in a format that they struggle to understand due to cognitive or sensory impairments as a result of their stroke. Only half of stroke survivors said that they were able to understand the information they were given in hospital about their condition.


Stroke survivor Greg Baynham, 32, said:
"I was not given any information or leaflets when I left hospital. At the very least, they could have given me leaflets about The Stroke Association or a leaflet to tell me what it was that had happened to me; what I could or could not do and whether I was going to have another stroke."

The Stroke Association is calling for a core 'checklist' of basic information to assist healthcare professionals in providing the information needed by stroke survivors, their families and carers. This should be treated as an integral part of the stroke care pathway.

Information must be explained to stroke survivors and their carers at an appropriate time and not just handed out. Stroke survivors need to be able to ask questions and have access to someone who can help them understand and use the information in hospital and in their own home if necessary.

The study confirmed that over a third of stroke patients questioned thought it necessary to have the name of somebody to contact and talk to after leaving hospital.

Joe Korner concluded:

"The government has recently recognised the importance of information to patients but this does not focus on what is needed at discharge. Our research has highlighted how something as simple as a leaflet containing relevant advice and support can make a real difference to stroke survivors and help them back on the often long and complex road to recovery."

ENDS

For further information please contact the Media Team at The Stroke Association on 020 7566 1500 or email the Press Office

Notes to editor

1. 'Nobody Told Me...' draws on current evidence contained within the Health Commission 'Stroke survey of patients' 2005, Ipsos MORI study for The Stroke Association and research conducted by The Stroke Association

2. The Stroke Association has created a variety of resources on how to support the campaign and urge local hospitals to make these changes and provide information for stroke survivors, including a postcard and A4 poster available from The Stroke Association on www.stroke.org.uk

3. There are 87,000 first strokes and 53,700 recurrent strokes in England and Wales each year. This is equivalent to someone having a stroke every five minutes.

4. There are more than 900,000 people who have had a stroke living in England, around half of them are left dependent on others for everyday activities.

5. The cost of stroke to the NHS is estimated to be: £2.8 billion a year in direct care costs, £1.8 billion in lost productivity and disability £2.4 billion and informal care cost. A total of around £7 billion per year. This accounts for 6 per cent of total NHS and Social Services expenditure and it is nearly twice the cost of coronary heart disease.

6. The Stroke Association is the only national charity solely concerned with combating stroke in people of all ages. The charity funds research into prevention, treatment, better methods of rehabilitation and helps stroke patients and their families directly through its community services which include dysphasia support, family support, information services, welfare grants, publications and leaflets. The Stroke Association also campaigns, educates and informs to increase knowledge of stroke at all levels of society acting as a voice for everyone affected by stroke.

7. A stroke is a brain equivalent of a heart attack. There are two main types of stroke Ischaemic - caused by a blood clot in the brain and Haemorrhagic - caused by a bleed in the brain. A stroke can be diagnosed by using FAST - Facial weakness, Arm weakness, Speech problems, Test all three. If these symptoms are present call an ambulance straight away.

8. The Stroke Helpline provides information on stroke to the general public and is open between 9am - 5pm Monday to Friday on 0845 3033 100.

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