Stroke survivors miss out on vital communication therapy and support

People who survive stroke are not receiving the vital speech and language therapy and other communication support services they need to help them cope with their severe communication problems and get Back to a Life after their stroke.

This is the disturbing finding of a survey of stroke survivors run by the Royal College of Speech and Language Therapists (RCSLT), Chest, Heart & Stroke Scotland (CHSS), The Stroke Association and Speakability, carried out across Scotland in September 2008.

Nearly 300 stroke survivors with communication problems following their stroke responded to the survey and described how speech and language therapy and voluntary communication support services had improved their lives.

More than three-quarters of those surveyed have difficulties speaking, explaining things, talking on the phone, using the internet and writing.  One third have difficulties understanding what people are saying. They experience significant problems accessing public services including healthcare, shops and public transport.  One stroke survivor said, “It is difficult to become part of anything when you cannot communicate and in the end you become isolated.”

90% of people said speech and language therapy was important both in hospital and the community. However more than one in four of respondents said they did not receive speech and language therapy in hospital following their stroke. Of those that did one third said they had to wait for their therapy to begin. On average, one third said they did not receive speech and language therapy after leaving hospital and in some parts of Scotland this rose to nearly two thirds.

Over half of those who received speech and language therapy in the community said that they did not get enough and want more.

More than three-quarters said the voluntary sector communication services they have received are important, have allowed them to remain independent and have had a positive impact on their confidence and relationships with family and friends. Nearly two-thirds of those who received voluntary communication support in the community said that they would like more of these services to be provided.

RCSLT Policy Officer Scotland Kim Hartley said, “This survey means, at last, the government can now hear some of the voices of the 4,000 plus people silenced every year by stroke in Scotland. The survey clearly tells us what these people want to say – they want more and better integrated statutory speech and language therapy and voluntary communication support services in hospital and the community. Beyond that direct support, they want communication accessible public services.”

Chest, Heart & Stroke Scotland’s Chief Executive, David Clark, said, “Speech and language problems, or aphasia, are the real hidden disabilities after stroke. Being unable to communicate normally is incredibly frustrating and often affects whole families. This survey demonstrates the need for increased provision of long-term voluntary communication support services in the community.

“CHSS communication support groups provide a lifeline for people affected by stroke in Scotland.  We know that they provide real and lasting benefits, including improving communication skills, restoring self-confidence, helping re-integration into families and the wider community and reducing social isolation. We provide these services across 85% of Scotland from the inner cities to the most remote island areas.”

The Stroke Association Director Scotland Maddy Halliday said, “We hope that in addition to the Scottish Government acting upon these survey recommendations, it will look closely at collecting data on the needs of stroke survivors with a communication disability and of the current provision of services.  We anticipate the Back To A Life campaign will put stroke related communication disability firmly on the map, so that it can be given the attention it deserves.”

Melanie Derbyshire, Chief Executive of Speakability, said, “The ability to communicate is part of what makes us human. To lose speech and the ability to use language without warning is absolutely devastating. Since its foundation nearly 30 years ago, Speakability has been the national ‘voice’ of people with Aphasia in the campaign for better understanding of communication disability and the need for people with Aphasia to have access to effective therapy and support services.

“Community based self-help groups play a vital role in enabling people with aphasia to rebuild communication and their zest for life. As an empowering charity, Speakability is delighted to acknowledge the excellent contribution of members of our aphasia self-help groups in Scotland to this survey. These people know what it is like to live with aphasia – their views are absolutely essential if future services are to meet the true needs.”

The Back to a Life After Stroke Survey partners (RCSLT, Chest, Heart & Stroke Scotland, The Stroke Association and Speakability) call on the Scottish Government:

• To improve provision of both speech and language therapy and voluntary communication support services in hospital and in the community.

• To raise healthcare professionals’ awareness of the impact stroke can have on communication and how to support people with communication difficulties.

• To improve the communication accessibility of all public services and the information they provide.

• To collect local incidence and prevalence figures of people who have communication difficulties after a stroke as well as data on their needs and the current provision of communication support services. This data should be used to inform service development and planning.

 - ENDS -

Notes to editor

1.  The Royal College of Speech and Language Therapists (RCSLT), Chest, Heart & Stroke Scotland (CHSS), The Stroke Association and Speakability carried out the survey in Scotland between June and September 2008 to find out the views of people with communication support needs following stroke on communication support services they receive.  280 responses came from people living in every Scottish Health Board; from across age groups (29-93) and equal numbers came from men and women. You can download a copy from the RCSLT website.

2.  The RCSLT is the professional body for speech and language therapists in the UK and has over 13,000 members, 1,000 practising in Scotland. It is responsible for setting, promoting and maintaining high standards in education, clinical practice and ethical conduct.

3.  The RCSLT says that Government should implement the RCSLT's workforce resource planning guidelines on the level of service

• One in 10: in an acute ward there must be one speech and language therapist for every 10 people who have had a stroke.

• Communication lifelines: every stroke survivor must have prompt referral to speech and language therapy to allow the rapid development of methods of communication in the immediate days following their stroke.

• Community service: every community service team must have a least one speech and language therapist

4.  Chest, Heart and Stroke Scotland is the only independent Scottish charity providing support for people who have had a stroke and their families in Scotland through its vital community services. These include communication groups, outreach services, stroke support nurses, welfare grants, a specialist nurse-led advice line and information. The charity also funds research into the prevention, rehabilitation and treatment of stroke illness at Scottish hospitals and universities as well as running a Scotland-wide education and training service for health professionals and those caring for people with stroke illness.

5.  The Stroke Association is the only UK 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, information services including its website and a range of 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.  

6.  Speakability (Action for Dysphasic Adults) is the UK-wide charity supporting and empowering people with aphasia, and their relatives and carers. Speakability offers impartial information and support through its Helpline, website and training courses, and distributes its own fact-sheets, low-cost publications and videos. Throughout England, Scotland and Wales, Speakability is also developing a network of Aphasia Self-Help Groups - run by people with Aphasia for people with Aphasia. Each Self-Help Group offers individuals real empowerment, the chance to share experiences, grow in self-confidence, rebuild communication skills and make new friends in a supportive environment. As the UK ‘voice' of people with Aphasia, Speakability has a campaigning role and works to improve services for people with Aphasia by influencing individuals, organisations and statutory bodies.

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