"Nobody told me..." further information

When the "Nobody told me..." campaign was launched we contacted every hospital and Primary Care Trust in England, and every hospital and Local Health Board in Wales with our recommendations. 

We believe that all stroke patients should receive the information that they need throughout their care pathway, including when they leave hospital. Don't just take our word for it - The Department of Health's very own National Service Framework for Long Term Conditions, published in 2005, states that people with long-term neurological conditions should be offered integrated assessment and planning of their health and social care needs, and the information to make informed decisions. It goes on to state that families and carers should also be offered information.

There are a number of areas where information for patients is crucial. Our research has found that the most important are:

• information on their condition, including what happened and why, what is likely to happen in the future, details of outpatient appointments, explanations of what tests are for, what medication is being prescribed and why, how to take it and copies of letters to their GP
• how to reduce the risk of further strokes through healthy eating, exercise and giving up smoking, for example
• services available, with a named contact and telephone number. This should cover NHS services including rehabilitation services, such as physiotherapy and speech and language therapy, community care services, such as help with personal care and meals on wheels, equipment services including mobility equipment and adaptations to the home, support for carers and their right to assessment, financial advice and employment advice, peer group and long-term support and The Stroke Association helpline and website.

Download our briefing papers below:

Nobody told me Briefing paper (515 kb)  

Nobody told me Welsh Briefing paper (523 kb)  

As part of the campaign we commissioned Ipsos MORI to carry out research on stroke patients' and their carers experience of the information provided when they leave hospital. Download a copy of Ipsos MORI's research below:

Nobody told me... MORI report (451 kb)

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