condition factsheets

Ataxia
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Encephalitis
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Epilepsy
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Dystonia
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Multiple sclerosis
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Motor neurone disease
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Progressive supranuclear palsy
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Brain injury
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Stroke
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Parkinson's
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Cerebral palsy
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Huntington's disease
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Muscular dystrophy
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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


Use of condition factsheets
SWANO has received several requests from other alliances to use the condition factsheets displayed on this page for their own websites. Regional alliances are free to do so but only after the factsheet has been presented to the national organisation working with each condition for approval. This condition has been applied to ensure that material is up to date and accredited.


 

Ataxia

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 Top of page

 


The Encephalitis SocietyEncephalitis (The Encephalitis Society)

The Condition

Encephalitis is an inflammation of the brain. The inflammation is caused either by an infection invading the brain (Infectious Encephalitis); or through the immune system attacking the brain in error (Post-infectious or Autoimmune Encephalitis).

Symptoms

Infectious Encephalitis frequently begins with a ‘flu-like illness or headache. Typically more serious symptoms follow hours to days, or sometimes weeks later. The most serious finding is an alteration in the level of consciousness. This can range from mild confusion or drowsiness, to loss of consciousness and coma. Other symptoms include a high temperature, seizures (fits), aversion to bright lights, inability to speak or control movement, sensory changes, neck stiffness, or uncharacteristic behaviour.

Autoimmune Encephalitis often has a long onset. Symptoms will vary depending on the cause but may include: confusion, altered personality or behaviour, psychosis, movement disorders, seizures, hallucinations, memory loss, or sleep disturbances

Causes

Viruses are the most common cause of Infectious Encephalitis. Within the British Isles herpes simplex virus (the cold sore virus) is the virus most frequently identified. Worldwide other viruses are responsible; many of which are transmitted by mosquitos or ticks. In some patients, the identity of the infecting virus is not conclusively determined despite extensive laboratory testing.

Autoimmune Encephalitis in some people is triggered by infection in which case the term “Post-Infectious Encephalitis” is used. Acute Disseminated Encephalomyelitis (ADEM) is a Post- Infectious Encephalitis in which the spinal cord may also be involved. There are other types of Autoimmune Encephalitis. Some of these are identified by detecting a specific antibody in blood that target the brain. These conditions include Potassium Channel Complex Antibody-associated Encephalitis and N-Methyl-D-Aspartate-Receptor- associated Encephalitis.

Treatment

Treatment of patients with Encephalitis has two aims.

The first aim is to ensure that the patient receives specific treatment for the cause of their Encephalitis. Where the Encephalitis is caused by infection, patients are treated with anti-viral and/or antibiotic drugs. It is important that these drugs are started promptly, and hence they will often be started before a definite cause is found. Acyclovir is the most frequently used anti-viral drug (effective against herpes simplex virus). Unfortunately for many viral infections there are no specific treatments at present.

Because Autoimmune Encephalitis is due to the immune system acting inappropriately treatment aims to modify the function of the immune system. These include drugs, such as steroids; intravenous immunoglobulin (IVIG) which is antibodies collected from blood donors; or plasma exchange which is the filtering of antibodies from blood.

The second aim is to treat the complications arising from Encephalitis and to support the patient whilst they are not able to perform their usual bodily functions. Treatments with anti- convulsants to control seizures, or sedatives to reduce agitation may be required. Sometimes patients require Intensive Care treatment including ventilation (mechanical help with breathing)

Incidence and Prevalence

There are up to 6,000 cases of Encephalitis in England and potentially hundreds of thousands worldwide each year. Anyone can become ill with Encephalitis, at any age. Encephalitis has a variable mortality rate depending on the underlying cause.

Impact on Health and Social Care

No two cases of Encephalitis will have an identical outcome. Outcomes vary between those who are able to return to their former work and lifestyle (with perhaps only a slight change in their cognitive ability) to those left profoundly disabled, physically, cognitively or both (the resulting damage is termed an Acquired Brain Injury - ABI). The loss of brain function can range from very minor impairment, such as some loss in speed of thinking, to more significant impairments. The degree and type of damage will vary according to the underlying cause, the severity of the inflammation and the parts of the brain affected. Significant changes may occur in personality and in the ability to function day- to -day even if there is a complete physical recovery. Coming to terms with these problems can be potentially distressing and challenging for everyone concerned.

People who have had Encephalitis may require, at different steps throughout their recovery input from various professionals such as Neurologist, Neuropsychologist, Physiotherapist, Psychiatrist, Neurophysiologist, Speech and Language Therapist, Occupation Therapist or Epilepsy Nurse. A multidisciplinary approach is most of the time highly recommended.

The Encephalitis Society has been involved in developing guidelines for diagnosis of Encephalitis ( Management of Suspected Viral Encephalitis in Adults and Children ) which are available on our website or from our office (see below).

The Encephalitis Society-who we are and how we can help

The Encephalitis Society is an international charity and the only resource of our kind in the world, dedicated to supporting those affected by Encephalitis and their families.

It fulfils this aim by:

• Supporting adults, children, families and carers of those affected by Encephalitis.

• Producing evidence based, quality information on all aspects of the condition in various formats

• Raising awareness about the condition, its consequences and the need for improved services

• Conducting research and working in partnership with other researchers.

The Encephalitis Society has a network of Regional Representative Volunteers including in the South-West. Please contact the office for details.

Contact Details

The Encephalitis Society, 32 Castlegate, Malton, YO17 7DT
Admin Line: 01653 692583 Support Line: 01653 699599
Website: www.encephalitis.info

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Epilepsy

The condition

  • Epilepsy is a group of conditions that have epileptic seizures as a symptom. Although the correct term is ‘the epilepsies', more often it is known simply as ‘epilepsy'.
  • Epilepsy is a neurological condition where there is a tendency for people to have repeated seizures that start in the brain. Anyone can develop epilepsy and although it can start at any age, it is more common in children and people over 65.

Symptoms

  • The symptom of epilepsy is epileptic seizures.
  • An epileptic seizure is a sudden, short-lived event that causes a change in a person's awareness of where they are, what they are doing, their behaviour or their feelings.
  • There are many different types of epileptic seizure.
  • Seizures are divided into partial (or focal) seizures and generalised seizures.
    • Partial seizures affect just part of the brain. What happens depends on which part of the brain the seizure affects, and what that part of the brain does. In simple partial seizures the person is aware and alert, and will usually know that something is happening. These seizures can include an unusual smell or taste, a ‘rising' feeling in the stomach, or stiffness or twitching in part of the body (such as the arm or hand). In complex partial seizures the person's consciousness is affected, they are confused, and afterwards may not remember the seizure. They may be able to hear you, but may not understand or be able to respond to you. These seizures can include fiddling with clothing, making lip-smacking movements, muttering, or wandering around in a confused way.
    • Generalised seizure affects the whole of the brain. The person becomes unconscious and will not remember the seizure. These seizures include absences and tonic clonic seizures. In absences, the person becomes blank and unresponsive for a few seconds and will not respond to what is happening around them. In tonic clonic seizures the person goes stiff, falls down (if standing) and shakes (convulses). Their breathing may be affected and they may become very pale, and they may wet themselves. After the convulsions stop their breathing usually goes back to normal. Afterwards they are often very tired, confused and may want to sleep.
  • Most seizures happen without warning and stop by themselves. Although injuries can happen, most people do not hurt themselves and do not need any medical help.

Causes

  • Epilepsy is the symptom of an underlying cause but the reasons why some people develop it are not straightforward.
  • There are many possible causes and the cause is not always found. Epilepsy can be the result of a genetic tendency towards seizures (called ‘idiopathic epilepsy'), or as a result of a known cause such as a head injury or infection (called ‘symptomatic epilepsy').

Treatment

  • Up to 70% of people with epilepsy could be seizure-free with the right anti-epileptic drug (‘AEDs') treatment. Currently only around 52% are seizure free.
  • For people who do not respond to AEDs, there are other treatment options, such as epilepsy surgery or vagus nerve stimulation, but these are not suitable for everyone.

Incidence and Prevalence

  • Epilepsy is the most common serious neurological condition in the UK.
  • Around 456,000 people in the UK have epilepsy – that is 1 in 131 people. 1 in 242 children under 18 years of age, and 1 in 91 adults aged 65 and over has epilepsy.
  • Around 75 new cases of epilepsy are diagnosed every day in the UK.
  • Epilepsy is thought to affect around 50 million people worldwide.

Impact on Health & Social Care

  • The affect of epilepsy is very individual. For some, whose seizures are fully controlled, it may have little impact on their life. For others, whose epilepsy is not controlled, it may have a far-reaching impact, including on work, driving, relationships, overall health, mental wellbeing and social and leisure activities. Some people with epilepsy and co-existing conditions or disabilities need supported or residential care.
  • Epilepsy is normally managed by neurologists ( a doctor specialising in conditions of the brain) or a neurologist with a specialism in epilepsy. Children usually have their epilepsy managed by a paediatrician until around 17 years of age.
  • Other specialists involved in the epilepsy management include: learning disability specialists, epilepsy specialist nurses, psychologist or psychiatrist, and occupational health and social services teams.
  • There are NICE clinical guidelines for epilepsy: ‘ The diagnosis and management of the epilepsies in adults and children in primary and secondary 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

Phone: 01803 882535 | Mobile : 07791 546217 | Email: brenda.willis@epilepsysociety.org.uk

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Dystonia

Introduction to dystonia
Dystonia is a neurological movement disorder involving uncontrollable and sometimes painful muscle spasms caused by incorrect signals from the brain. This forces the body into twisting, repetitive movements or abnormal postures. It is not curable but in the vast majority of cases, dystonia does not impact intelligence or shorten a person's life span. It is estimated to affect around 70,000 in the UK.

Dystonia which starts in adult life usually remains focal to one part of the body. If dystonia starts in childhood, it tends to spread across multiple parts of the body.

Focal dystonias
These dystonias are limited to specific parts of the body. Symptoms generally appear between the ages of 30 and 50 (except eye dystonia where they usually start between ages 50 and 70) although sometimes symptoms can appear earlier or later. Generally, focal dystonias starting in adulthood affect only one part of the body. If they spread at all, which is unlikely, it is usually only to one other area.
  • Neck dystonia (the medical term is cervical dystonia or spasmodic torticollis)
  • Eye dystonia (the medical term is blepharospasm)
  • Mouth, tongue or jaw dystonia (the medical term is oromandibular)
  • Voice dystonia (the medical term is laryngeal dystonia or spasmodic dysphonia)
  • Focal hand dystonia (which includes task-specific dystonias such as writer's cramp and musician's cramp).
Dystonias affecting multiple parts of the body
There are a number of different types of dystonia that affect more than one part of the body. These usually start in childhood or early adulthood and include:
  • Generalised dystonia: which affects most of the body frequently involving the limbs and/or trunk
  • Myoclonus dystonia: where jerking movements occur with dystonia
  • Paroxysmal dystonia: which affects the whole or part of the body in brief episodes
  • Dopa responsive dystonia: which is a rare form of dystonia that responds to treatment with levadopa
  • Hemidystonia: where only one side of the body is affected
Secondary dystonias
Secondary dystonias are dystonias caused by damage or degeneration of the brain or abnormal response to certain medications. There are more than 50 causes of secondary dystonia which include:
  • Tardive dystonia: is the result of an abnormal response to certain medications
  • Dystonic cerebral palsy: is a dystonia caused by damage to the developing foetal or infant brain

Common Symptoms

  • Neck dystonia
    Muscle spasms causing neck/head to be pulled to one side, backwards or forwards. Often accompanied by pain and/or tremor.
  • Eye dystonia
    Symptoms can include excessive or uncontrollable blinking, eye twitching that doesn't go away and sensitivity to bright lights and sunshine. Sometimes the eyelid closure can be prolonged causing functional blindness.
  • Mouth, tongue or jaw dystonia
    Can cause difficulty opening or closing the mouth, often affecting chewing and speech.
  • Voice dystonia
    Can cause the voice to be strained sometimes with a tremor making speech difficult. The voice usually either has a strangled quality or it can be breathy, whispering or very quiet.
  • Focal hand dystonia
    Can cause involuntary movement, cramps or tremor in the hand or arm muscles usually when making highly practiced hand movements such as writing or playing a musical instrument.
  • Generalised dystonia
    Symptoms can include any of the above and also frequently involve twisting of the limbs and trunk.

Causes
The cause of dystonia is not fully understood. There appears to be a problem with the region of the brain called the basal ganglia. In most cases where dystonia appears in adults and some case where it appears in children, there is no clear explanation for why this problem arises.

However, in a minority of cases, the dystonia does have a clear cause. These can include another medical condition and reaction to certain drugs (especially dopamine blocking drugs used to treat psychiatric disorders). A minority of cases have been shown to have a genetic cause.

Treatments
Although there is currently no cure for dystonia, there are several widely used treatments. Many treatments are very successful but depend particularly on the type of dystonia and the age of onset. Because dystonia is such a complex and ‘individual' condition, the usefulness of all these treatment options can vary widely between patients. Treatment regimes should be determined by a consultant familiar with dystonia.

Focal dystonia
The usual treatment regime for common forms of focal dystonia is regular injections of botulinum toxin, which are usually repeated every three months. Various oral medications drug treatments are available to assist in the management of some types of dystonia. However, not all medications are suitable for all people with dystonia.

In rare cases where neck dystonia does not respond to botulinum toxin, Deep Brain Stimulation (DBS) brain surgery may be considered. Sometimes other surgical interventions are also used to treat focal dystonias.

Young-onset dystonia
Many physicians will prescribe an initial trial of Levodopa for young patients as it can be highly effective in cases of dopa-responsive dystonia. A range of other oral drugs are also used.

DBS brain surgery, especially in cases of generalised dystonia, can be of sustained benefit to certain young patients. Assessment will be required to determine whether DBS is suitable for individual cases. Botulinum toxin has limited use in the case of generalised dystonia as there are too many diverse muscle groups to treat successfully.

Secondary dystonia
Treatment of dystonia secondary to brain injury is often similar to that of young-onset dystonia. DBS is reported to be less successful in managing cases of secondary dystonia, as is botulinum toxin, although it can be useful when targeting specific small areas of muscle.

For people with tardive dystonia (i.e. dystonia, which is a side effect to certain medications), the use of further medications to treat the symptoms of dystonia needs to be managed very carefully.

The Dystonia Society
The society provides support, advocacy and information for anyone affected by the neurological movement condition known as dystonia. The Dystonia Society is managed by its board of trustees. Currently there are eight trustees and all are affected by dystonia.

The trustees plan the strategic development of the Society and are responsible for policies and work of the organisation. They have a range of business, financial and management experience.

Trustees are elected by the members of the Dystonia Society and serve a maximum of three years after which time they must be re-elected. The society currently has eleven office-based staff and three home-based staff.

Dystonia Society
2nd Floor
89 Albert Embankment
Vauxhall
London
SE1 7TP

Helpline: 020 7793 3650
Office: 020 7793 3651
Email: info@dystonia.org.uk
Website: www.dystonia.org.uk
Magazine:
Dystonia Matters

Last reviewed July 2013

Watch a short You Tube video about the effects of dystonia, featuring SWANO member, David Lowe

Disclaimer
The Dystonia Society provides the information on this page as general information only. It is not intended to provide instruction and you should not rely on this information to determine diagnosis, prognosis or a course of treatment. It should not be used in place of a professional consultation with a doctor.  
The Dystonia Society is not responsible for the consequences of your decisions resulting from the use of this information, including, but not limited to, your choosing to seek or not to seek professional medical care, or from choosing or not choosing specific treatment based on the information. You should not disregard the advice of your physician or other qualified health care provider because of any information you receive from us. If you have any health care questions, please consult the relevant medical practitioner.

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Link to MS Society websiteMultiple sclerosis (MS)

The condition

  • Multiple Sclerosis (MS) is the most common disabling neurological condition affecting young adults
  • Women are almost twice as likely as men to develop MS
  • Most people are diagnosed with MS between the ages of 20 to 40
  • For some people, MS is characterised by periods of relapse and remission while for others it has a progressive pattern. For everyone, it makes life unpredictable.

Download a useful guide to Implementating the Care Act for people with fluctuating, long-term conditions via this link.

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 regional external relations and local network officers working in the NHS South West, the latter working mainly with branches.

There are over twenty branches in the South West providing information and support for people affected by MS and their families and carers.

For further information about local contacts please visit the MS Society's website at www.mssociety.org.uk/contact-us#england.

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Link to MND Association websiteMotor Neurone Disease (MND)

The condition

  • MND is a rapidly progressive, fatal disease
  • The cause of MND is unknown and there is no known cure
  • It is most common after the age of 50
  • More men than women have the condition (3:2)
  • 50% of all people die within 14 months of diagnosis
  • It is characterised by progressive muscle weakness which may leave a person unable to walk, use their arms, or talk, whilst their intellect frequently remains intact.

Incidence and prevalence

  • The incidence of MND is approximately two per 100,000, which suggests that there will be 101 new cases of MND diagnosed each year in the South West.
  • The prevalence of MND is approximately seven per 100,000, which would result in 353 currently living with MND in the South West.

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:

  • Neurology consultant, specialist nurse, specialist therapists
  • Occupational therapists
  • Physiotherapists
  • Dietitians
  • Speech and Language Therapists
  • Gastro-enterology/endoscopy team
  • Respiratory team
  • Palliative care services
  • Paid carers - for direct care and also for carer respite

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:

  • a specialist resource for people living with MND
  • access to a multidisciplinary team
  • strong links with the local community services and the MND Association sharing of good practice through education and Special Interest Groups
  • a focus for clinical research and a centre for clinical drug trials.

Details of all local contacts can be found on the Association's website at www.mndassociation.org

 

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PSP Association logoProgressive Supranuclear Palsy (PSP)

The condition

  • PSP is a progressive neurological and inevitably fatal disease
  • There is currently no known cure or viable medication
  • It generally affects people over the age of 60 but has been known to occur at a younger age
  • Lifespan after onset of symptoms is approx 5-7yrs but early diagnosis is rare and many patients die within 2-3yrs after correct diagnosis
  • Symptoms are varied and in early stages tend to generate falls (usually backwards), progressing to difficulties with speech and swallowing, vision, continence and mobility whilst the intellect generally remains intact.

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:

  • Neurology consultant, specialist nurse
  • Occupational therapist
  • Physiotherapist
  • Speech and Language therapist
  • Dietician
  • Continence advisor
  • Palliative Care services
  • Paid carers - for direct care or respite
  • Social service provision of mobility equipment and home-safety equipment

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

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Link to Headway Brain injury (Headway)

The condition

  • Head injury is the foremost cause of death and disability in young people (1)
  • An Acquired Brain Injury is an injury caused to the brain since birth.
  • There are many possible causes, including a fall, assaults, a road accident, tumour and stroke.
  • Every year approximately two-hundred thousand people sustain a brain injury of some sort.
  • The effects of the injuries are usually for life, therefore the number of people living with brain injury will rise year on year.
  • The effects of brain injury are often devastating and can include physical disability, memory loss, speech problems and rapid mood changes but have no impact on life expectancy.
  • For many, it is parents and relatives who will become the main carers

Prevalence

  • Men are three times more likely to have a brain injury than women and men aged between 15-29 are FIVE times more likely to suffer brain injury.
  • Across the UK, around 135,000 people are admitted to hospital each year as a consequence of brain injury - Tennant 2005

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:

  • Neuropsychiatrists
  • Neuropsychologists
  • Consultant neurologists (and all other neurologists)
  • Consultant radiographers (not directly, but indirectly to interpret results of scans)
  • Occupational therapists
  • Physiotherapists/OTs etc.
  • Social workers
  • Speech and Language Therapists
  • Dietician
  • Psychotherapist
  • Cognitive Behavioural Therapist
  • Nurses (hopefully more specialist nurses in future)

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

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Link to the Stroke AssociationStroke (The Stroke Association)

The Condition

  • Stroke is the largest cause of severe disability
  • Stroke affects people of all ages including children
  • Stroke is a ‘brain attack' that occurs ‘in a stroke' giving a sudden onset of symptoms
  • About one third of people who have a stroke will die, one third will make an almost complete recovery and one third will be left with a disability.

Incidence and Prevalence

  • Around 150,000 in the UK have a stroke annually. 95,000 will be a first stroke, 24,000 will be under retirement age and 1,000 will be children.
  • About 20,000 people in the south west will have a stroke or TIA (or mini stroke) each year (ASSET for Commissioners DOH) and the total prevalence of stroke is estimated to be 105,000 of whom 36,000 will have moderate or severe disability.

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:

  • Stroke clinicians. Specialist stroke nurses/consultant nurses
  • Clinical Psychologists
  • Paid Carers
  • Speech and language therapists.
  • Dieticians
  • Occupational therapists
  • Physiotherapists
  • Communication Support Groups

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.

  • It produces a wide range of publications on all aspects of stroke and its effects.
  • It runs a helpline on 0303 303 3100, and a website at www.stroke.org.uk.
  • It campaigns to raise awareness of stroke at all levels of society.

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.

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Parkinson's UKParkinson's (Parkinson's UK )

The Condition

  • Parkinson's is a progressive neurological disorder affecting learned voluntary movements such as walking, talking, writing and swallowing - caused by a loss of a chemical messenger (dopamine) in the brain.
  • There are three main symptoms: tremor, rigidity and slowness of movement, but not everyone will experience all three.
  • The cause is as yet unknown and there is no known cure.

Incidence and prevalence

  • Parkinson's affects 1 in 500 of the general population
  • The figures from our research show that there are currently 127,000 people with Parkinson's in the UK .
  • In addition, by 2020 the number of people with Parkinson's will rise to 162,000, an increase of 28%.
  • This is based on population estimates - the UK has an ageing population so it's likely that there will be more people living with the condition in the future.

The impact on health and social care services

In addition to the core team of health and social care professionals, as the condition progresses people living with Parkinson's are likely to require support from:

  • Geriatrician and Physician Teams
  • Parkinson's Specialist Nurses and Support Nurses
  • Respite care services
  • Domiciliary care services
  • Palliative care services
  • Care Manager and Care Packages

Parkinson's UK

The aims of Parkinson's UK are to provide information, support and advice to people living with Parkinson's and fund research into the condition. There is a local network of 48 Branches and Support Groups in the South-west offering mutual support for people with Parkinson's and their carers. We also have 12 Information & 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, Volunteer Educators, Influence & 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 Parkinson's Helpline telephone: 0808-800-0303

 

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Link to SCOPE websiteCerebral Palsy (SCOPE)

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:

  • The mother or the baby having an infection in early pregnancy
  • Difficult or premature birth
  • Cerebral (brain) bleed or abnormal development of baby's brain
  • A genetic link (however, this is quite rare)There are three main types of cp, although most people will have a combination of the different types
  • Spastic cerebral palsy - most common form. The muscles are stiff and have limited range of movements
  • Athetoid or Dyskinetic cerebral palsy - involuntary movements as muscle tone changes from floppy to tense. May also experience difficulty with hearing and speech.
  • Ataxic cerebral palsy - balance is difficult with unco-ordinated movements affecting the whole body. May have shaky hands and irregular speech. In some people, cerebral palsy is barely noticeable. Others will be more severely affected. No two people with cerebral palsy are the same.

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:

  • Social Services
  • GP
  • Paediatricians and specialist consultants e.g.
    • Orthopaedic Surgeons,
    • Neurologists,
    • Physiotherapists,
    • Occupational Therapy
    • Speech and Language Therapists
  • Respite and Domiciliary Care
  • Specialist Carers
  • Scope

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.
Tel: 0808 800 3333
Email: response@scope.org.uk
Text: Send a text message to SCOPE followed by your message to 80039

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Link to websiteHuntington's Disease
(Huntington's Disease Association)

The Condition

  • HD is a progressive, hereditary neurological disorder which used to be known as Huntington's Chorea.
  • Symptoms are wide ranging and usually begin in middle adulthood, but can occur at any age.
  • HD is caused by a faulty gene on chromosome 4, which leads to damage of nerve cells in specific areas of the brain. Each person whose parent has HD is born with a 50:50 chance of inheriting the faulty gene. Anyone who inherits the faulty gene will, at some stage, develop the disease.
  • The course of the disease is unpredictable and involves a triad of movement, thinking and emotional symptoms, which vary even within the same family.
  • Early symptoms might include involuntary movements, clumsiness, lack of concentration, short term memory lapses, depression, mood change, irritability and aggressive outbursts. Symptoms gradually deteriorate over approximately 10 - 20 years.
  • In the later stages there tends to be a more global dementia, a continuation of psychological symptoms, an inability to communicate verbally, impaired swallow, complete physical dependence.
  • There is no known cure for HD and effective treatment of symptoms remains in the experimental stage.

Incidence and Prevalence

  • I in 20,000 of the population are symptomatic at any one time in the UK.3 times this number are pre-symptomatic.
  • Many more than this are living with being at risk, but have not been tested.

The impact on health and social care services

In addition to the 'core' team, people living with HD may require support from:

  • Genetic Services
  • Mental Health Services
  • Domiciliary and Palliative Care Services
  • Respite Services
  • Specialist equipment is likely to be required (e.g. specialised beds, chairs and wheelchairs, communication aids).

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.

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Link to websiteMuscular Dystrophy

The conditions

  • Muscular Dystrophies and related conditions are genetic conditions affecting the muscles. Some Spinal Muscular Atrophies and Hereditary Motor and Sensory Neuropathies affect the nerves and in turn affect muscle strength.
  • There are more than twenty types of Muscular Dystrophy and they cause progressive muscle weakness because muscle cells break down and are gradually lost.
  • Duchenne Muscular Dystrophy is the most common in childhood usually affecting boys, and is usually diagnosed between 1-5 years of age.
  • Myotonic dystrophy is the most represented in the adult population.
  • For some people their Muscular Dystrophy is seriously disabling and for others may be life limiting. Some people may be more mildly affected.

Incidence

  • The prevalence of these conditions is 50 per 100,000.Of the 30,000 people in the UK who have muscular dystrophy or a related condition, 4000 are children.
  • Duchenne Muscular Dystrophy affects 1 in 3,500 live male births.

The impact on health and social care services

In addition to the 'core' team, people with a Muscular Dystrophy may need input from:

  • Specialist neurologists, adult and paediatric
  • Spinal surgeons
  • Pain management
  • Specialist advisors/Nurses
  • Clinical psychologists
  • Palliative care services
  • Respiratory services
  • Cardiac services
  • Wheelchair services
  • Paid carers
  • Specialist equipment, housing adaptation and specialist accessible transport may all be required to maintain or develop independence.
  • Other aids for mobility, bathing, independent living, communication and respiration may be required.

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.

See also:

The South West Neuromuscular Operational Delivery Network (SWNODN)
Covers a particular definition set of neuromuscular conditions specified by NHS England. Please refer to the website for local contacts and services:


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: The number of people living with a long term condition in the NHS South West area

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