Embargoed until 00.01 28 May 2008

The Lost Without Words campaign:

Call to Assess the Needs of Stroke Survivors with a Communication Disability

Voluntary and professional bodies in Scotland are today calling on The Scottish Government to give greater attention to stroke survivors with a communication disability and recognise ongoing communications support as a service that must be fully integrated into the stroke care pathway. This call is informed by The Stroke Association's UK Lost Without Words report which is of direct relevance to Scotland.

The Stroke Association, Chest, Heart and Stroke Scotland, Speakability and The Royal College of Speech and Language Therapists in Scotland are joining forces to urge for incidence of stroke-related communication disabilities to be reliably collected through for example, The Scottish Stroke Care Audit. We are also calling for clear referral procedures into communications support services to ensure stroke survivors with a communication disability are receiving the service as and when they need it for as long as they need it.

Maddy Halliday, Director Scotland of The Stroke Association said, "Experiencing a stroke can have many severe consequences. One of the most common and devastating effects can be the onset of a communication disability. Aphasia is by far the most common communication disability and this can affect the ability to speak and understand language as well as the serious related effects such as distress, difficulties with day to day life and for some, the inability to get back to work."

" Chest, Heart and Stroke Scotland and Speakability provide communication support services across Scotland and this support is greatly valued by people affected by aphasia. Because we don't know the numbers of people affected by a communication disability, we don't know if

everyone who needs a service is getting one. Lost Without Words is a call to action to address need and catch those who may be falling through the gaps in receiving this vital support."

"Although Stroke survivors in Scotland are much more likely to have a local communication support group to go to than their counterparts in England, Wales and Northern Ireland, the lack of information on actual need means it is not clear if what's currently available is meeting that need for communication support."

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.

CHSS communication support groups provide a lifeline for people affected by stroke in Scotland. We know from independent research1 that they provide real and lasting benefits, including:

Ø Improving communication skills

Ø Restoring self-confidence

Ø Helping re-integration into families and the wider community

Ø Reducing social isolation

We've been operating on the ground in Scotland for more than 30 years and provide these services (The Volunteer Stroke Service) across 85% of Scotland, from the inner cities to the most remote island areas."

Melanie Derbyshire, Chief Executive of Speakability said, "As an empowering charity, Speakability is delighted that people with aphasia in Scotland are benefiting from our six existing self-help groups. These groups have facilitated the active engagement of people with aphasia in a wide range of initiatives. These include the Scottish Executive Quality Improvement Scotland Report - Aphasia in Scotland (Nov 2007) and the Communication Forum (Scotland) - Communication Toolkit (May 2008).

Speakability plans to initiate more self-help groups in Scotland and wants to ensure that people with aphasia are able to contribute their ‘voice' in discussions about the future of services for people who have acquired communication disability. 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."

Lost Without Words also recommends a clear and consistent referral procedure into communication support services. These procedures are presently not consistent amongst Stroke Managed Clinical Networks across Scotland.

The Scottish Government's Scottish Coronary Heart Disease (CHD) and Stroke Strategy recognises the need for more long-term care and support for stroke survivors with aphasia and recommends that social services, hospitals and primary care teams should develop a strategy to provide appropriate follow up and treatment to improve the patients' and families' quality of life.

Kim Hartley, Scotland Officer at The Royal College of Speech and Language Therapists in Scotland commenting on the current policy environment and the needs of stroke survivors with aphasia said,

"The Royal College of Speech and Language Therapists hope that the current review of Scotland's Stroke Strategy results in vastly improved communication support services in the community. People need both significantly increased NHS Speech and Language Therapy and Chest, Heart and Stroke Scotland and Speakability communication support services to work in partnership so they can get back to a life after stroke. The Royal College of Speech and Language Therapists wholly support the Stroke Association Scotland's call for action."

The Scottish Coronary Heart Disease (CHD) and Stroke Strategy is currently being updated by The National Advisory Committees for CHD and Stroke and is expected to be published later on this year. It is hoped the strategy will focus attention towards the needs of stroke survivors with a communication disability.

-ENDS-

For a copy of the Lost Without Words Campaign report, and general media enquiries, please contact Angela Macleod, Communications Manager at The Stroke Association on Tel: 0131 555 7244 or Email: angela.macleod@stroke.org.uk.

Alternatively you can download a copy of the report from www.stroke.org.uk

Stroke

1. A stroke happens when the blood supply to part of the brain is disrupted. Most strokes occur when a blood clot blocks the flow of blood to the brain. Some strokes are caused by bleeding in or around the brain from a burst blood vessel. When the blood supply is disrupted, parts of the brain become damaged or destroyed. Some strokes are fatal whist others can cause permanent or temporary disabilities such as paralysis to one side of the body and loss of the ability to speak, read or write. Recovery may be slow and can vary from person to person.

1. A stroke is a brain attack which causes brain damage. A stroke can be diagnosed by using FAST - Facial weakness, Arm weakness, Speech problems, Test all three. If any of these symptoms are present call an ambulance straight away.
2. The risk of having a stroke can be reduced through lifestyle factors such as a healthy diet - particularly reducing salt intake, drinking alcohol in moderation, not smoking and taking regular exercise.

Scottish stroke statistics

• Each year about 12,500 people will have a stroke in Scotland2.
• Whilst Stroke mostly affects people over 65, 20% of strokes are experienced by people under 65.
• In Scotland there are 100,000 individuals living with stroke and its consequences.
• Stroke is the leading cause of severe disability amongst adults.
• Stroke is the third most common cause of death killing three times as many women, for example, as breast cancer.
• Whilst about 40% of people experiencing a stroke will recover quite well, another 40% will survive with considerable disability - both physical and cognitive.

The Stroke Association

1. 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 services which include 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.

2. More information on The Stroke Association can be found at www.stroke.org.uk

Chest, Heart & Stroke Scotland

Chest, Heart & 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. For advice or information about stroke please call the CHSS Advice Line on 0845 077 6000.

Speakability (Action for Dysphasic Adults)

Speakability is the UK-wide charity supporting and empowering people with aphasia, and their relatives and carers. It was founded by Diana Law (who experienced Aphasia) in 1979 as ‘Action for Dysphasic Adults' and adopted the working name ‘Speakability' in 2000.

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.

Website: www.speakability.org.uk

Helpline: 080 8808 9572

The Royal College of Speech and Language Therapists.

The Royal College of Speech and Language Therapists is the professional body for speech and language therapists in the UK and has over 13,000 members. It is responsible for setting, promoting and maintaining high standards in education, clinical practice and ethical conduct. Visit: www.rcslt.org

References

1. Volunteer Stroke Service (VSS) groups for patients with communication difficulties after stroke: a qualitative analysis of the value of groups to their users.

Lynn Legg, David Stott, Academic Section of Geriatric Medicine, Glasgow Royal Infirmary University NHS Trust, Graham Ellis, Monklands Hospital, Airdrie and Cameron Sellars Dept of Speech and Language Therapy, Glasgow Royal Infirmary 2006

Published In Clinical Rehabilitation Journal 2007; 21:794-804

2. ISD 2007