Health: Stroke Care

Baroness Gould of Potternewton Excerpts

Monday 30th January 2012 Lords Chamber

[Baroness Gould of Potternewton]

My Lords, there is no question that the 2010 national stroke strategy has heightened the knowledge of stroke across the country, but there is still evidence of gaps in long-term provision.

I will concentrate on aphasia, which is an outcome, among others, that my daughter still suffers from 15 years after having a stroke. Aphasia can take the form of people not being able to speak at all or having only a few words; others can no longer read, write or use numbers. All the evidence shows that services are not planned with the needs of people with aphasia in mind.

There are currently about 250,000 people in the UK with aphasia. However, statistics are notoriously difficult to collect. This is illustrated by the findings of the Care Quality Commission. Only 7 per cent of adult social services departments reported including people with aphasia in designing stroke information. Eighty-one per cent of PCTs have not tried to estimate how many people with aphasia live in their area. All this is further compounded by the fact that communications disability is not a recognised disability and so is not monitored. People with aphasia are invisible. A simple solution would be to monitor how many people have aphasia at the time of the stroke, at discharge from hospital and when under the care of social services.

Key to the provision of services for people with aphasia are the voluntary bodies, and I want to refer to one specific organisation, Connect, of which my daughter is a board member. Connect is a charity for people living with aphasia, which offers information and support for carers and health professionals. Crucially, it recognises people with aphasia as experts and as such has pioneered innovative ways of working in partnership with people with aphasia. It aspires to enhance and extend statutory service provision once statutory services end and offer the opportunity to re-engage with life beyond services. This is in addition to the provision of a statutory workforce and a passionate and highly skilled workforce of volunteers supporting service development and delivery. At the same time it aims to reduce costs for national services by reduced visits to the GP as a result of improved mood, greater self-esteem and increased social participation as well as reduced dependency on speech and language therapy, enabling earlier discharge from statutory services.

It is not all about specialist rehabilitation, important as that is, but sometimes about low-cost, accessible, creative, peer-led activities such as drop-in, befriending and awareness provided by a third sector organisation. However, real support is required to help organisations such as Connect and the Stroke Association continue to provide these vital services in the long term. Stroke is not a one-off event but a life with complex disabilities.