Neuro numbers
a brief review of the numbers
of people in the UK with a
neurological condition
There are 10 million people in the UK
living with a neurological condition which
has a significant impact on their lives
Approximately 350,000
people (0.6% of the UK
population) require help for
most of their daily activities
Of the 10 million
people living with
a neurological
condition:
Over one million people
(2% of the UK population)
are disabled by their
neurological condition
3
Over eight million people
are affected by a
neurological condition, but
are able to manage their
lives on a day-to-day basis
Who can be affected and what
difficulties can they experience?
10,000,000
4
Neurological conditions affect all ages and people may
experience the onset of a neurological condition at any time in
their lives. There is increased prevalence of neurological
conditions in older people as some conditions particularly affect
older people and others are life long conditions. The numbers of
people with neurological conditions will grow sharply in the next
two decades due to improved survival rates, improved general
health care and infection control, increased longevity and
improved diagnostic techniques.
People with neurological conditions can experience difficulties
ranging from living with a condition which may weaken or
disable them for periods of time through to needing help for
most everyday tasks.
Approximately 350,000
people require help for most
of their daily activities
Over one million people
are disabled by their
neurological condition
Over eight million people are
affected by a neurological
condition, but are able to
manage their lives on a dayto-day basis
350,000
1,000,000+ 8,000,000+
This will include most people with motor
neurone disease (MND), many of those
with primary and secondary progressive
multiple sclerosis (MS) and other
progressive neurodegenerative conditions,
those with severe brain injuries, people
who have had a serious stroke (including
brain haemorrhage) or those who have
advanced dementia.
They may need help with some daily
tasks and are likely to be out of full time
employment. This figure includes most
people with congenital conditions, such as
cerebral palsy, those who have recently
had a brain injury or illness, those who
have had a stroke, some people living
with MND, MS, Parkinson’s disease and
forms of dementia. It also includes some
of those with epilepsy or migraine.
This figure includes a number of people
living with MS, Parkinson’s disease and
many more rarely diagnosed conditions,
people recovering from stroke or head
injury, people with essential tremor and
other motor difficulties. It also includes
many people living with migraine and
chronic tension-type headache and many
of those managing their epilepsy.
Many of the people affected in this way
will already have experienced an acute
phase of their illness and often live with
pain, the side effects of medication and
the possibility that their condition could
worsen, in some cases catastrophically or
fatally, at any time. They will often need
to adapt their lifestyle which can have an
adverse effect on their quality of life.
Though these people will often be in
employment and with caring
responsibilities of their own, there will be
periods of time when they may need to
be cared for or require help to carry out
their daily activities; when they are
unable to work or to carry out their lives
to the full.
5
Neurological conditions are the most common cause of serious
disability and have a major, but often unrecognised, impact on
health and social services
6
1%
10%
17%
19%
Each year 600,000 people
(1% of the UK population)
are newly diagnosed with a
neurological condition
10% of visits to Accident and
Emergency Departments are
for a neurological problem
17% of GP consultations are
for neurological symptoms
19% of hospital admissions are
for a neurological problem
requiring treatment from a
neurologist or neurosurgeon
Mostly stroke, epilepsy, dementia,
headache, head injury and MS.
There is little systematic collection of data
on the numbers of people with neurological
conditions in the UK. It is likely that these
figures, being based on verifiable data,
are an underestimate and show merely
the tip of the iceberg. There is an urgent
need for systematic collection of data,
and further research into the needs of
people living with neurological conditions.
30%
25%
33%
Each year 200,000 children
have an acquired brain injury
About one quarter of people
aged between 16 and 64 with
chronic disability have a
neurological condition
Approximately one third of
disabled people living in
residential care have a
neurological condition
Approximately 850,000 people
in the UK care for someone
with a neurological condition
However, most neurologically disabled
people are not in residential care, but live
at home, usually cared for by relatives.
Carers often have to sacrifice their own
work or leisure time. For example, family
caregivers provide on average between
five and 12 hours of care per day to
people with moderate and severe MS.
30% of the people attending accident
and emergency departments for head
injury are children of 15 years and under
Partners caring for someone with
Parkinson’s disease are 40% less likely to
get out of the house at least once a week
or to take a holiday than their peers. Carers’
health is often compromised – about half
suffer physical injuries such as a strained
back and half experience stress-related
illness. Carers may be all ages. Whilst many
carers are elderly, a significant number of
children and young people are carers of
people with neurological conditions.
7
Incidence and prevalence of some neurological conditions
8
Condition
Incidence: number of new cases that
develop each year
Prevalence: total number of people per
100,000 (and number with the condition
in UK)
Source
Alzheimer’s disease / dementia
25,000 per 100,000 in over 65 year olds
1,000 (700,000)
Alzheimer’s Society based on ONS
population estimate 1996
Ataxia (including Friedrich’s ataxia)
5,000 (at least)
Estimate from Ataxia Group of Great
Britain and Northern Ireland
Ataxia-Telangiectasia
0.3 (200 approximately)
Ataxia-Telangiectasia Society.
228 with long term problems (135,000)
Headway, the Brain Injury Association and
Society of British Neurological Surgeons.
Incidence figures from Powell T Head
Injury – A practical guide, 1994. Winslow
Press Ltd. Also Thornhill S and Teasdale
GM et al Disability in young people and
adults one year after head injury:
prospective cohort study BMJ 2000; 320:
1631-1635. Prevalence estimate using
data from study by McMillan T and
Greenwood R Rehabilitation programmes
for the brain injured adult: current practice
and future options in the UK, 1991.
Department of Health
Brain injury: Problems can occur
following any head injury and are
experienced by most people who survive
after a severe injury.
Severe injury 10-15
Moderate injury 15-20
Mild injury 250-300
New and sustained disability amongst
adults resulting from head injury 100-150
Brain tumour
20 per 100,000 (12,000)
Hopkins A Clinical Neurology, a modern
approach, 1993. OUP
Cerebral Palsy
186 (110,000)
Scope – based on population studies
Charcot-Marie-Tooth Disease
40 (23,600)
Estimate from Charcot Marie Tooth UK
CJD
0.1 per 100,000 (50-70 approximately)
vCJD
27 new cases in year 2000
(Presently increasing year on year)
Dystonia (primary idiopathic i.e. not
associated with another condition)
Alzheimer’s Society
127 cases since 1995
C J D – a guide for patients and carers
Brain and Spine Foundation, 2002
Alzheimer’s Society
65 (38,000)
Dystonia Society – estimate
Condition
Incidence: number of new cases that
develop each year
Encephalitis
7.4 per 100,000
Epilepsy
80 per 100,000
Essential tremor
Guillain Barré syndrome
2.5 per 100,000 (1,500)
Headache
Migraine 400 per 100,0001
Cluster Headache 4 per 100,0002
Paroxysmal Hemicrania3
Chronic Migraine4
Chronic tension-type headache4
Huntington’s disease
Prevalence: total number of people per
100,000 (and number with the condition
in UK)
Source
Beghi E et al. Encephalitis and aseptic
meningitis, Olstead County, Minnesota
1950 – 1981, Annals of Neurology 1984;
283-394
500 (300,000 approximately)
Kilson A, Shorvon S. Clinical Standards
Advisory Group Services for people with
epilepsy: a report of a CSAG committee.
London: DoH, 2000
Sander JWAS, Hart YM, Johnson A, Shorvon
SD, National General Practice study of
epilepsy: newly diagnosed epileptic
seizures in a general population.
Lancet 1990; 336:1267-1271
850 (500,000)
Estimate from National Tremor Foundation
– Professor Leslie Finley
Estimate from Guillain Barré Syndrome
Support Group
15,000 (8,000,000)
100
10
3,000
2,000
Steiner TJ et al, Epidemiology of migraine
in England. Cephalalgia 1999; 19:305-6.
2
Olesen J, Goadsby PJ, Cluster Headache and
related conditions in Olesen J (Ed) Frontiers
in Headache Research Vol 9 1999. OUP
3
Goadsby PJ, Lipton RB, A review of
paroxysmal hemicaranias, Brain 1997;
120:193-209
4
Silberstein SD et al, Headaches in Primary
Care. Oxford/Isis Medical Media
13.5 approximately (6-10,000)
Huntington's Disease Association
1
Intracerebral haemorrhage
2-5 per 100,000
Motor neurone disease
2 per 100,000
7 per 100,000 (4,000 approximately)
Motor Neurone Disease Association
Multiple sclerosis
4 per 100,000 (2,500)
144 (85,000)
MS Society and MS Research Trust –
estimates based on UK area studies and
international data
Multiple system atrophy
1 (600)
Estimate from Sarah Matheson Trust
Muscular dystrophy
50 (30,000)
Muscular Dystrophy Campaign – estimate
Society of British Neurological Surgeons
9
Condition
Prevalence: total number of people per
100,000 (and number with the condition
in UK)
Source
Myalgic encephalomyelitis (ME)
300-500 (240,000 approximately)
Dowsett E G, Richardson J The Epidemiology
of Myalgic Encephalomyelitis (ME) in the
UK 1919-1999 Evidence submitted to the
All Party Parliamentary Group of MPs on
ME 23.11.99
Myasthenia gravis
30 approximately (10,000-30,000)
Myasthenia Gravis Association – estimate
based on their database
Narcolepsy
50 (30,000)
Narcolepsy Association – estimate based
on patient counts in Europe and America
Neurofibromatosis
40 (24,000)
Neurofibromatosis Association
200 (120,000)
Parkinson’s Disease Society – based on
advice from medical adviser
Progressive supranuclear palsy
6 per 100,000 (3,600)
Nath A et al, The prevalence of PSP in the
UK. Brain 2001; 124:1438-1449
Post-polio syndrome
Estimates range from 100-300
(120,000 approximately)
Lincolnshire post polio network
Rett syndrome
0.1 per 100,000 females at age 14 years
(2,500 females in UK)
Rett Syndrome Association UK – figures from
Dr Alison Kerr, medical adviser to RSAUK.
Spina Bifida and Hydrocephalus
24 per 100,000 (14,000 approximately)
Estimate from Association for Spina Bifida
and Hydrocephalus – from their database
of contacts
Parkinson’s disease
10
Incidence: number of new cases that
develop each year
17 per 100,000 (10,000 approximately)
Spinal cord injury
(500-700)
The First 48 Hours (2000), Spinal Injuries
Association
Spinal cord problems leading to surgery
53 per 100,000
Society of British Neurological Surgeons
Spinal tumour
1.25 per 100,000 primary spinal tumours
(750 approximately)
Spinal tumours – A guide for patients and
carers Brain and Spine Foundation 2002
Stroke
240 per 100,000 (100,000)
500 (300,000)
Oxford Community Stroke Project.
Incidence of stroke in Oxfordshire: first
years experience of a community stroke
register BMJ 1983:287:713-7
Geddes JM et al. Prevalence of self
reported stroke in a population in northern
England. J Epidemiol Community Health
1996; 50:140-143
Condition
Incidence: number of new cases per
100,000 that develop each year
Subarachnoid haemorrhage (aneurysm)
10 per 100,000
Tourette syndrome
Transverse myelitis
0.5 per 100,000 (300 approximately)
Association of British Neurologists.
Neurological Rehabilitation in the United
Kingdom: Report of a working party.
London: ABN, 1992
Brain and Spine Foundation. The scope for
reduction of death and disability caused
by neurological disorders. London: Brain
and Spine Foundation, 1998
Carton H, Loos R, Pacolet J, Versieck K,
Vlietinck R. A quantitative study of unpaid
caregiving in multiple sclerosis. Multiple
Sclerosis 2000; 6:274-9
Donaghy M, Compston A, Rossor M,
Warlow C. Clinical Diagnosis. In: M
Donaghy (Ed.) Brain’s diseases of the
nervous system (11th ed.). New York:
Oxford University Press; 2001 p.2-59
Gloucestershire Health Authority and
Department of Social services The Hidden
three thousand: a joint study of services
for physically handicapped people in
Gloucestershire, 1986
Source
Society of British Neurological Surgeons
40 (20,000-30,000)
Tuberous sclerosis
References
Prevalence: total number of people per
100,000 (and number with the condition
in UK)
Tourette Syndrome (UK) Association –
Brian Robertson, Pub. 2000
Transverse myelitis – A guide for patients
and carers Brain and Spine Foundation 2000
14 (8,000)
Tuberous Sclerosis Association – based on
various published studies
Henwood M, Ignored and invisible? Carers’
Experience of the NHS. London: Carers
National Association (now Carers UK),1998
Playford ED, Crawford P, Munro PS.
A survey of neurological disability at a
district general hospital. British Journal of
Clinical Practice 1994; 48:304-306
McCormick A, Fleming D, Charlton J.
Morbidity statistics from general practice:
fourth national study: 1991-1992. MBS no.
3. London: HMSO; 1995
MacDonald BK, Cockerell, OC, JWAS,
Sander, Shorvon SD. The incidence and
lifetime prevalence of neurological
disorders in a prospective communitybased study in the UK. Brain 2000; 123:
665-676
Morrow J I , Patterson VH. The neurological
practice of a district general hospital.
Journal of Neurology, Neurosurgery and
Psychiatry 1987; 50:1397-1401
O’Reilly F, Finnan F, Allwright S, Smith GD,
Ben-Shlomo Y. The effects of caring for a
spouse with Parkinson’s disease on social,
psychological and physical well-being.
British Journal of General Practice 1996;
46:507-12
The Neurological Alliance. Levelling Up:
Standards of Care for people with a
neurological condition. London: The
Neurological Alliance, 2002
11
Produced by the Neurological Alliance
in conjunction with the Association of
British Neurologists (ABN), Society of
British Neurological Surgeons and the
Royal College of Nursing (RCN).
© Neurological Alliance April 2003
ISBN 1 901893 32 4
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BASIC (Brain & Spinal Injury Charity)
Brain and Spine Foundation
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Charcot Marie Tooth UK
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Association)
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Lincolnshire Post Polio Network
ME Association
Motor Neurone Disease Association
Multiple Sclerosis Society of Great Britain
Multiple Sclerosis Society – Northern
Ireland
Multiple Sclerosis Trust
Muscular Dystrophy Campaign
Narcolepsy Association (UK)
National ME Centre
National Meningitis Trust
National Society for Epilepsy
National Tremor Foundation
Pain Concern
Rett Syndrome Association
Sandwell Neurological Alliance
Sarah Matheson Trust (group for people
with Multiple System Atrophy)
Scope
Speakability
The Dystonia Society
The Migraine Trust
The Myasthenia Gravis Association
The Neurofibromatosis Association
The Parkinson’s Disease Society
The Progressive Supranuclear Palsy (PSP
Europe) Association
The Stroke Association
Tourette Syndrome (UK) Association
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