Neuro numbers a brief review of the numbersof people in the UK with aneurological condition

There are 10 million people in the UKliving with a neurological condition whichhas a significant impact on their lives

Of the 10 millionpeople living witha neurologicalcondition:

Approximately 350,000people (0.6% of the UKpopulation) require help formost of their daily activities

Over one million people (2% of the UK population)are disabled by theirneurological condition

Over eight million peopleare affected by aneurological condition, butare able to manage theirlives on a day-to-day basis

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Neurological conditions affect all ages and people mayexperience the onset of a neurological condition at any time intheir lives. There is increased prevalence of neurologicalconditions in older people as some conditions particularly affectolder people and others are life long conditions. The numbers ofpeople with neurological conditions will grow sharply in the nexttwo decades due to improved survival rates, improved generalhealth care and infection control, increased longevity andimproved diagnostic techniques.

People with neurological conditions can experience difficultiesranging from living with a condition which may weaken ordisable them for periods of time through to needing help formost everyday tasks.

Who can be affected and whatdifficulties can they experience?

10,000,000

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Approximately 350,000 people require help for most of their daily activities

Over one million people are disabled by theirneurological condition

Over eight million people areaffected by a neurologicalcondition, but are able tomanage their lives on a day-to-day basis

350,000 1,000,000+ 8,000,000+

This will include most people with motorneurone disease (MND), many of thosewith primary and secondary progressivemultiple sclerosis (MS) and otherprogressive neurodegenerative conditions,those with severe brain injuries, peoplewho have had a serious stroke (includingbrain haemorrhage) or those who haveadvanced dementia.

They may need help with some dailytasks and are likely to be out of full timeemployment. This figure includes mostpeople with congenital conditions, such ascerebral palsy, those who have recentlyhad a brain injury or illness, those whohave had a stroke, some people livingwith MND, MS, Parkinson’s disease andforms of dementia. It also includes someof those with epilepsy or migraine.

This figure includes a number of peopleliving with MS, Parkinson’s disease andmany more rarely diagnosed conditions,people recovering from stroke or headinjury, people with essential tremor andother motor difficulties. It also includesmany people living with migraine andchronic tension-type headache and manyof those managing their epilepsy.

Many of the people affected in this waywill already have experienced an acutephase of their illness and often live withpain, the side effects of medication andthe possibility that their condition couldworsen, in some cases catastrophically orfatally, at any time. They will often needto adapt their lifestyle which can have anadverse effect on their quality of life.Though these people will often be inemployment and with caringresponsibilities of their own, there will be

periods of time when they may need tobe cared for or require help to carry outtheir daily activities; when they areunable to work or to carry out their livesto the full.

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Mostly stroke, epilepsy, dementia,headache, head injury and MS.

Each year 600,000 people (1% of the UK population) are newly diagnosed with aneurological condition

10% of visits to Accident andEmergency Departments are for a neurological problem

17% of GP consultations are for neurological symptoms

19% of hospital admissions arefor a neurological problemrequiring treatment from aneurologist or neurosurgeon

1% 10% 17% 19%

Neurological conditions are the most common cause of seriousdisability and have a major, but often unrecognised, impact onhealth and social services

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Each year 200,000 childrenhave an acquired brain injury

About one quarter of peopleaged between 16 and 64 withchronic disability have aneurological condition

Approximately one third ofdisabled people living inresidential care have aneurological condition

Approximately 850,000 peoplein the UK care for someonewith a neurological condition

30% 25% 33%

30% of the people attending accidentand emergency departments for headinjury are children of 15 years and under

However, most neurologically disabledpeople are not in residential care, but liveat home, usually cared for by relatives.

Carers often have to sacrifice their ownwork or leisure time. For example, familycaregivers provide on average betweenfive and 12 hours of care per day topeople with moderate and severe MS.

Partners caring for someone withParkinson’s disease are 40% less likely toget out of the house at least once a weekor to take a holiday than their peers. Carers’health is often compromised – about halfsuffer physical injuries such as a strainedback and half experience stress-relatedillness. Carers may be all ages. Whilst manycarers are elderly, a significant number ofchildren and young people are carers ofpeople with neurological conditions.

There is little systematic collection of dataon the numbers of people with neurologicalconditions in the UK. It is likely that thesefigures, being based on verifiable data,are an underestimate and show merelythe tip of the iceberg. There is an urgentneed for systematic collection of data,and further research into the needs ofpeople living with neurological conditions.

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Incidence and prevalence of some neurological conditions

Condition

Alzheimer’s disease / dementia

Ataxia (including Friedrich’s ataxia)

Ataxia-Telangiectasia

Brain injury: Problems can occur following any head injury and areexperienced by most people who surviveafter a severe injury.

Brain tumour

Cerebral Palsy

Charcot-Marie-Tooth Disease

C JD

vC JD

Dystonia (primary idiopathic i.e. notassociated with another condition)

Incidence: number of new cases thatdevelop each year

25,000 per 100,000 in over 65 year olds

Severe injury 10-15Moderate injury 15-20Mild injury 250-300New and sustained disability amongstadults resulting from head injury 100-150

20 per 100,000 (12,000)

0.1 per 100,000 (50-70 approximately)

27 new cases in year 2000 (Presently increasing year on year)

Prevalence: total number of people per100,000 (and number with the conditionin UK)

1,000 (700,000)

5,000 (at least)

0.3 (200 approximately)

228 with long term problems (135,000)

186 (110,000)

40 (23,600)

127 cases since 1995

65 (38,000)

Source

Alzheimer’s Society based on ONSpopulation estimate 1996

Estimate from Ataxia Group of GreatBritain and Northern Ireland

Ataxia-Telangiectasia Society.

Headway, the Brain Injury Association andSociety of British Neurological Surgeons.Incidence figures from Powell T HeadInjury – A practical guide, 1994. WinslowPress Ltd. Also Thornhill S and TeasdaleGM et al Disability in young people andadults one year after head injury:prospective cohort study BMJ 2000; 320:1631-1635. Prevalence estimate usingdata from study by McMillan T andGreenwood R Rehabilitation programmesfor the brain injured adult: current practiceand future options in the UK, 1991.Department of Health

Hopkins A Clinical Neurology, a modernapproach, 1993. OUP

Scope – based on population studies

Estimate from Charcot Marie Tooth UK

Alzheimer’s Society

C JD – a guide for patients and carersBrain and Spine Foundation, 2002Alzheimer’s Society

Dystonia Society – estimate

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Condition

Encephalitis

Epilepsy

Essential tremor

Guillain Barré syndrome

Headache

Huntington’s disease

Intracerebral haemorrhage

Motor neurone disease

Multiple sclerosis

Multiple system atrophy

Muscular dystrophy

Incidence: number of new cases thatdevelop each year

7.4 per 100,000

80 per 100,000

2.5 per 100,000 (1,500)

Migraine 400 per 100,0001

Cluster Headache 4 per 100,0002

Paroxysmal Hemicrania3

Chronic Migraine4

Chronic tension-type headache4

2-5 per 100,000

2 per 100,000

4 per 100,000 (2,500)

Prevalence: total number of people per100,000 (and number with the conditionin UK)

500 (300,000 approximately)

850 (500,000)

15,000 (8,000,000) 100103,0002,000

13.5 approximately (6-10,000)

7 per 100,000 (4,000 approximately)

144 (85,000)

1 (600)

50 (30,000)

Source

Beghi E et al. Encephalitis and asepticmeningitis, Olstead County, Minnesota1950 – 1981, Annals of Neurology 1984;283-394

Kilson A, Shorvon S. Clinical StandardsAdvisory Group Services for people withepilepsy: a report of a CSAG committee.London: DoH, 2000Sander JWAS, Hart YM, Johnson A, ShorvonSD, National General Practice study ofepilepsy: newly diagnosed epilepticseizures in a general population.Lancet 1990; 336:1267-1271

Estimate from National Tremor Foundation– Professor Leslie Finley

Estimate from Guillain Barré SyndromeSupport Group

1 Steiner TJ et al, Epidemiology of migrainein England. Cephalalgia 1999; 19:305-6.2 Olesen J, Goadsby PJ, Cluster Headache andrelated conditions in Olesen J (Ed) Frontiersin Headache Research Vol 9 1999. OUP3 Goadsby PJ, Lipton RB, A review ofparoxysmal hemicaranias, Brain 1997;120:193-2094 Silberstein SD et al, Headaches in PrimaryCare. Oxford/Isis Medical Media

Huntington's Disease Association

Society of British Neurological Surgeons

Motor Neurone Disease Association

MS Society and MS Research Trust –estimates based on UK area studies andinternational data

Estimate from Sarah Matheson Trust

Muscular Dystrophy Campaign – estimate

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Condition

Myalgic encephalomyelitis (ME)

Myasthenia gravis

Narcolepsy

Neurofibromatosis

Parkinson’s disease

Progressive supranuclear palsy

Post-polio syndrome

Rett syndrome

Spina Bifida and Hydrocephalus

Spinal cord injury

Spinal cord problems leading to surgery

Spinal tumour

Stroke

Incidence: number of new cases thatdevelop each year

17 per 100,000 (10,000 approximately)

(500-700)

53 per 100,000

1.25 per 100,000 primary spinal tumours(750 approximately)

240 per 100,000 (100,000)

Prevalence: total number of people per100,000 (and number with the conditionin UK)

300-500 (240,000 approximately)

30 approximately (10,000-30,000)

50 (30,000)

40 (24,000)

200 (120,000)

6 per 100,000 (3,600)

Estimates range from 100-300(120,000 approximately)

0.1 per 100,000 females at age 14 years(2,500 females in UK)

24 per 100,000 (14,000 approximately)

500 (300,000)

Source

Dowsett E G, Richardson J The Epidemiologyof Myalgic Encephalomyelitis (ME) in theUK 1919-1999 Evidence submitted to theAll Party Parliamentary Group of MPs onME 23.11.99

Myasthenia Gravis Association – estimatebased on their database

Narcolepsy Association – estimate basedon patient counts in Europe and America

Neurofibromatosis Association

Parkinson’s Disease Society – based onadvice from medical adviser

Nath A et al, The prevalence of PSP in theUK. Brain 2001; 124:1438-1449

Lincolnshire post polio network

Rett Syndrome Association UK – figures fromDr Alison Kerr, medical adviser to RSAUK.

Estimate from Association for Spina Bifidaand Hydrocephalus – from their databaseof contacts

The First 48 Hours (2000), Spinal InjuriesAssociation

Society of British Neurological Surgeons

Spinal tumours – A guide for patients andcarers Brain and Spine Foundation 2002

Oxford Community Stroke Project.Incidence of stroke in Oxfordshire: firstyears experience of a community strokeregister BMJ 1983:287:713-7Geddes JM et al. Prevalence of selfreported stroke in a population in northernEngland. J Epidemiol Community Health1996; 50:140-143

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Condition

Subarachnoid haemorrhage (aneurysm)

Tourette syndrome

Transverse myelitis

Tuberous sclerosis

Incidence: number of new cases per100,000 that develop each year

10 per 100,000

0.5 per 100,000 (300 approximately)

Prevalence: total number of people per100,000 (and number with the conditionin UK)

40 (20,000-30,000)

14 (8,000)

Source

Society of British Neurological Surgeons

Tourette Syndrome (UK) Association –Brian Robertson, Pub. 2000

Transverse myelitis – A guide for patientsand carers Brain and Spine Foundation 2000

Tuberous Sclerosis Association – based onvarious published studies

Association of British Neurologists.Neurological Rehabilitation in the UnitedKingdom: Report of a working party.London: ABN, 1992

Brain and Spine Foundation. The scope forreduction of death and disability causedby neurological disorders. London: Brainand Spine Foundation, 1998

Carton H, Loos R, Pacolet J, Versieck K,Vlietinck R. A quantitative study of unpaidcaregiving in multiple sclerosis. MultipleSclerosis 2000; 6:274-9

Donaghy M, Compston A, Rossor M,Warlow C. Clinical Diagnosis. In: MDonaghy (Ed.) Brain’s diseases of thenervous system (11th ed.). New York:Oxford University Press; 2001 p.2-59

Gloucestershire Health Authority andDepartment of Social services The Hiddenthree thousand: a joint study of servicesfor physically handicapped people inGloucestershire, 1986

Henwood M, Ignored and invisible? Carers’Experience of the NHS. London: CarersNational Association (now Carers UK),1998

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 andlifetime prevalence of neurologicaldisorders in a prospective community-based study in the UK. Brain 2000; 123:665-676

Morrow J I , Patterson VH. The neurologicalpractice of a district general hospital.Journal of Neurology, Neurosurgery andPsychiatry 1987; 50:1397-1401

O’Reilly F, Finnan F, Allwright S, Smith GD,Ben-Shlomo Y. The effects of caring for aspouse with Parkinson’s disease on social,psychological and physical well-being.British Journal of General Practice 1996;46:507-12

Playford ED, Crawford P, Munro PS. A survey of neurological disability at adistrict general hospital. British Journal ofClinical Practice 1994; 48:304-306

The Neurological Alliance. Levelling Up:Standards of Care for people with aneurological condition. London: TheNeurological Alliance, 2002

References 11

Members of the Neurological Alliance

Produced by the Neurological Alliancein conjunction with the Association ofBritish Neurologists (ABN), Society ofBritish Neurological Surgeons and theRoyal College of Nursing (RCN).

© Neurological Alliance April 2003ISBN 1 901893 32 4

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Alzheimer’s SocietyAnn’s Neurological Trust Society (ANTS) Arachnoiditis Trust Association for Spina Bifida andHydrocephalus (ASBAH)Ataxia UKAtaxia-Telangiectasia SocietyBASIC (Brain & Spinal Injury Charity)Brain and Spine FoundationBritish Acoustic Neuroma AssociationBritish Polio Fellowship Child Brain Injury TrustCharcot Marie Tooth UKDementia Relief TrustDifferent StrokesEncephalitis Support Group Epilepsy Action (formerly British EpilepsyAssociation)Mersey Neurological TrustGreater Manchester Regional Neuro AllianceGuillain Barré Syndrome Support GroupHeadway – The Brain Injury AssociationHemiHelpHIRE (Head Injury Re-education) Huntington’s Disease SocietyJoint Epilepsy Council

Lincolnshire Post Polio NetworkME AssociationMotor Neurone Disease AssociationMultiple Sclerosis Society of Great BritainMultiple Sclerosis Society – NorthernIrelandMultiple Sclerosis TrustMuscular Dystrophy CampaignNarcolepsy Association (UK)National ME CentreNational Meningitis TrustNational Society for EpilepsyNational Tremor FoundationPain ConcernRett Syndrome AssociationSandwell Neurological AllianceSarah Matheson Trust (group for peoplewith Multiple System Atrophy)ScopeSpeakabilityThe Dystonia SocietyThe Migraine TrustThe Myasthenia Gravis AssociationThe Neurofibromatosis AssociationThe Parkinson’s Disease SocietyThe Progressive Supranuclear Palsy (PSPEurope) Association

The Stroke AssociationTourette Syndrome (UK) AssociationTuberous Sclerosis AssociationUK Acquired Brain Injury Forum (UKABIF)West Berkshire Neurological Alliance