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condition factsheets
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The information on this page provides a brief description of various neurological conditions, including incidence and prevalence, the likely impact on health and social care services and details of organisations providing further information and support. Please visit the contacts page if you require additional information about a specific condition. You can download a copy of the SWANO directory here
The condition Ataxia means ‘lack of order' and is the name given to a group of neurological conditions affecting balance, speech, and coordination. There are many different types of ataxia and it can affect people of any age. Symptoms Ataxia affects the brain, causing problems with balance and coordination. The first symptoms are often feeling ‘wobbly', stumbling, or dropping things. Over time the condition usually gets worse. Most people with ataxia experience dysarthia, or slurred speech, and in some forms people also experience vision problems, difficulties with hearing, and complications such as diabetes or scoliosis. Causes Ataxia is usually inherited and can be caused by many different genes. In some cases the gene is faulty, causing low levels of vital proteins, leading to neurological damage. Many forms of ataxia can now be diagnosed by genetic testing. Ataxia can also be caused by exposure to toxins such as medication or alcohol, and it can be a side-effect of a stroke, MS, or even a brain tumour. In some cases ataxia can be caused by a virus and the symptoms will go away again. For many people no cause is found; this is called ‘idiopathic ataxia'. Treatment There is no cure for ataxia but a range of treatments may help to ease the symptoms, including physiotherapy, speech therapy, and in some types of ataxia, taking supplements. Promising new research is underway for several types of ataxia, which may produce new drugs that can treat and slow down ataxia. Incidence and Prevalence Over 10,000 adults and an estimated 5,000 children have ataxia in the UK . Impact on Health & Social Care Ataxia can have a devastating effect on individuals, slowly taking away their ability to get about, communicate, and even see and hear. As there are many different types the severity of symptoms does vary from person to person, but in most cases it is a serious life-limiting condition that gets worse over time. People with ataxia are recommended to see a neurologist regularly and Ataxia UK has to date established three specialist Ataxia Centres in London, Sheffield and Oxford, with more in the future. People with ataxia may also benefit from referral to a speech therapist, physiotherapist or OT, counsellor, cardiologist, or opthamologist. Ataxia has produced clinical guidelines for the management of the ataxias and these are available free of charge on our website or from our offices (see below) Ataxia UK Ataxia UK is the national charity for everyone affected by ataxia and their families and carers. The chariry funds research into treatments and a cure for ataxia, as well as providing a range of dedicated support services and free membership. Charity number 1102391 Ataxia UK has a network of local support groups including in the South West; contact head office for details. Ataxia UK , Lincoln House, 1-3 Brixton Road , London SW9 6DE www.ataxia.org.uk Helpline: 0845 644 0606
The condition
Symptoms
Causes
Treatment
Incidence and Prevalence
Impact on Health & Social Care
The National Society for Epilepsy (NSE) The National Society for Epilepsy's mission is to enhance the quality of life of people affected by epilepsy, by promoting research, education and public awareness and by delivering specialist medical care and support services. Charity number 206186 South West Contact: Brenda Willis, EIN (Epilepsy Information Network) Regional Manager, covering: Cornwall, Devon, Somerset, Wiltshire and the Bristol area
The condition
Incidence and prevalence
The impact on health and social care services Over the course of their disease, people with MS are likely to require input from a large number of health and social care professionals. The list of professions below links in places to additional 'case for' factsheets, where information is provided on the benefits of specific services to patients and professionals, including potential cost savings.
People affected by MS may need a range of equipment to maintain their independence, such as specialised wheelchairs and other mobility aids, bathing equipment, environmental controls, communication aids and others. The MS Society The MS Society funds MS research, runs respite care centres, provides financial assistance, education and training on MS. It produces a wide range of publications on MS and runs a free phone specialist helpline (0808 800 8000) The Society is committed to bringing high standards of quality health and social care within reach of everyone affected by MS and to encouraging and supporting medical and applied research into its cause and control. The MS Society has salaried service development officers and local support development officers working in the NHS South West area. They are supported by regional managers, covering wider areas and with additional responsibilities There are over twenty branches in the South West providing information and support for people affected by MS and their families and carers. Details of local contacts can be found on the MS Society's website at www.mssociety.org.uk and additional information about local MS services can be found on SWANO's 'MS services in the South West' page.
The condition
Incidence and prevalence
The impact on health and social care services Over the course of their disease, people with MND are likely to require input from a large number of health and social care professionals including:
A large number of pieces of specialist equipment is likely to be required (eg. specialised wheelchairs, non-invasive ventilators, environmental controls, communication aids). In the latter stages, funding is frequently required from Continuing Health Care budgets. The organisation The MND Association funds and provides research to bring about an end to MND. In the meantime, it aims to do all it can to enable everyone with MND to receive the best care, achieve the highest quality of life possible and die with dignity. The Association also does all that it can to support the families and carers of people with MND. The MND Association has three salaried Regional Care Development Advisers working in the NHS South West area plus a Volunteering Development Co-ordinator and 41 Association Visitors, who are trained volunteers. Other Unlike many other parts of the country, there is no MND Care Centre within the South West. It is a priority of the Association to develop two MND Care Centres in the region. MND Care Centres provide:
Details of all local contacts can be found on the Association's website at www.mndassociation.org
The condition
Prevalence According to recent research the prevalence is thought to be 6 per 100,000 which would relate to approx 303 people living with PSP in the Southwest but leading neurologists believe this number to be seriously understated as many are mis-diagnosed or not diagnosed at all. The impact on health and social care services Any person living with this disease- whether diagnosed or not- will need to have call on many and varied members of the health and social care professions including:
In latter stages of the disease there will probably be a requirement for funding from the Continuous Care budget which needs to be better accessed. The organisation The PSP Association is an advocacy organisation promoting research worldwide into PSP and providing information and support to afflicted families. Local support groups are organised wherever there are enough patients. There are currently 24 such groups across the UK - with more in the process of being organised. There are currently 6 groups in the South West. The PSP Association is a small charity but has recently funded 6 Regional Development Officers across the country - 1 of which has responsibility for the Southwest and is committed to raising awareness of this disease amongst the Health and Caring professions to facilitate earlier diagnosis and relevant treatment of the condition. It has also funded 4 specialist nurses across the UK with one dedicated to the South West who are available for advice and support on dedicated helplines and also provide in-depth training sessions when required. The PSP Association also supports people with Cortico Basal Degeneration ( CBD ) a much rarer but linked condition. Further information is available on the Associations website - www.pspeur.org or by phone: 01327 322410 or email psp@pspeur.org
The condition
Prevalence
The impact on social care services Over the course of their lives, people with an ABI are likely to require input from many health and social care professionals including:
The Organisation Headway - the UK's leading brain injury charity - provides support, services and information to brain injury survivors, their families and carers as well as professionals (health, legal etc). Headway UK is an umbrella organisation (with office bases in Nottingham, London and Scotland) with a network of affiliated Headway Groups that run Headway Centres with employed staff and Headway Branches that are run on a voluntary basis throughout the UK. The organisation offers information and support to people with brain injuries, their families and carers by operating a National Helpline, publishing numerous publications and fact sheets and a quarterly magazine. Further details of services and the network of Groups and Branches can be obtained from our website: www.headway.org.uk. Headway currently provides training courses in understanding brain injury, cognitive rehabilitation and sex and sexuality following brain injury. (1) House of Commons: Head Injury Rehabilitation, Health Committee Third Report. London: The Stationery Office: 2001
The Condition
Incidence and Prevalence
The Impact on health and social care services Organised stroke care is shown to be beneficial to outcome. Therefore stroke survivors and their carers are likely to require input from a large number of core health and social care professionals during their rehabilitation and the long term. Those involved include:
People who have survived a stroke may require a range of equipment to maintain their independence such wheelchairs and other mobility aids, bathing equipment, communication aids and others. The Stroke Association We want a world where there are fewer strokes and all those touched by stroke get the help they need. Our mission is to prevent strokes, and reduce their effect through providing services, campaigning, education and research. It funds research, provides commissioned services, welfare grants, education and training on stroke.
In the south west there are regional centres in Bristol and Exeter administered by a regional manager, two assistant regional managers and a regional information officer. Currently there are 12 Communications Support Services, 9 Life After Stroke Advice and Support Services, 9 Community Stroke Support Services and an Exercise & Lifestyle programme operating in the region.
The Condition
Incidence and prevalence
The impact on health and social care services In addition to the core team of health and social care professionals, as the illness progresses people living with PD are likely to require support from:
The Parkinson's Disease Society The aims of the Parkinson's Disease Society are to provide information, support and advice to people living with PD and fund research into the condition.There are 42 Branches and Support Groups in the South-west offering mutual support and a network of 8 Community Support Workers who provide a "signposting" and information service. The South-west Staff Team is managed by a Regional Manager and includes Branch and Volunteers Support Officers, Education and Training Officer, Service Development Officer and Information and Support Manager. Details of local Regional contacts, Branch and Support Groups etc can be found on our website www.parkinsons.org.uk or by contacting our free & confidential National PDS Helpline telephone: 0808-800-0303
The condition Cerebral Palsy is a condition that affects movement, posture and co-ordination caused by the immature brain receiving an injury or not developing properly. Causes can be multiple and complex and sometimes there is no obvious single reason as to the cause of cp. Possible causes include:
Incidence and prevalence The widely accepted figure for people with cerebral palsy (cp) in the general population is one in four hundred (1:400) or 2 - 2.5 per thousand live births. This equates to approximately 113,510 people with cp in the UK, based on approximately 1800 children being born with cp each year and a UK projected population (in the 2001 census) of 61,269000. It is generally accepted that cp is the most prevalent physical impairment amongst children. Extreme caution has to be applied to any data on cerebral palsy. Impact on health and social care services Cerebral Palsy cannot be 'cured' but early support and therapeutic intervention can help with development and the effects of cp upon the muscles and motor control. Most people with cp will require intervention from a number of professionals throughout life including:
Scope's services include creating early years, education, independent
living and employment opportunities for disabled people. To find
out more about Scope's work, visit www.scope.org.uk.
Scope's mission is to drive the change to make society the first
where disabled people achieve equality. Scope
Response is the first point of contact for information, support
and advice on all aspects of cerebral palsy and disability issues.
The Condition
Incidence and Prevalence
The impact on health and social care services In addition to the 'core' team, people living with HD may require support from:
The Huntington's Disease Association This organisation exists to support people affected by Huntington's
Disease. It has a central information service, a regional care
advisory service, local branches and groups throughout the country
and a research programme. It offers a helpline service, a twice-yearly
newsletter, publications and information, a welfare grant fund
and a respite and residential care fund. Details of all services
can be found on the website: www.hda.org.uk
or by phoning the head office on 0151 298 3298.
The conditions
Incidence
The impact on health and social care services In addition to the 'core' team, people with a Muscular Dystrophy may need input from:
The Muscular Dystrophy Campaign MDC is the only UK charity focusing on all the muscular dystrophies and allied conditions and has pioneered the search for treatments and cures for over 45 years. The organisation campaigns to increase government spending on research, services and equipment. MDC organizes fund-raising and condition-specific training days, working through its nationwide grass-roots network of Branches. It also produces a wide range of information on the conditions and related topics. Details
of local and national contacts plus allied support groups for
the different types of Muscular Dystrophy can be found on www.muscular-dystrophy.org and the MDC Helpline can be contacted on 020 7803 4800 or info@muscular-dystrophy.org.
Across
the NHS South West, there are estimated to be nearly one million people living
with some type of neurological condition. Check out the figures here: |
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Use of condition factsheets 
Progressive
Supranuclear Palsy (PSP)
