People with disabilities and long term health conditions


A disability may be physical, cognitive, mental, sensory, emotional, and developmental, or any combination of these. Disability is an umbrella term, covering impairments, activity limitations, and participation restrictions.

A Long term physical health condition (also known as a chronic condition) is a health
problem that requires ongoing management over a period of years. It is one that
cannot currently be cured but can be controlled with the use of medication and/or
other therapies.

The aim of a JSNA is to improve the health and wellbeing of the local community and reduce inequalities for all ages.

Some geographical areas and disadvantaged groups experience much poorer health and greatly reduced life expectancy, and to reduce these health inequalities requires tackling the wider determinants of health.

This enables people in vulnerable groups to have greater control and increased ability to make decisions about improving their lifestyle.

Please click on the ducuments below to view full topics

Autism is a lifelong developmental disorder which affects the way people interact with the world around them.

National

  • 400,000 people are estimated to have autistic spectrum conditions in the UK. Of these 160,000 are estimated to have Asperger Syndrome. 70,000 are estimated to have a severe learning disability.
  • Adults with a more severe learning disability have a greater likelihood of having autism according to a report published in 2012 by the NHS information centre. The report combines data from the adult psychiatric morbidity survey (APMS) 2007 with findings from a more recent study based on a sample of people with learning disabilities living in private households and communal care establishments.

The report estimates that the prevalence of autism:

  • is 1% in the general population
  • is approximately 35% among adults with severe learning disabilities living in private households
  • is approximately 31% among adults with mild or severe learning disabilities living in communal care establishments
  • increases with greater severity of learning disability or lower verbal IQ
While the study comprised a relatively small sample with limited geographical coverage (Leicestershire, Lambeth and Sheffield) and did not include the institutional population, it did include two distinct populations (people in communal care establishments and people with learning disabilities), which were not covered by the APMS 2007.
  • Information on the number and nature of autistic spectrum conditions is highlighted by specialist organisations as a serious issue in its own right.
  • A long-standing problem has been people with autism being refused support because they do not fit easily into mental health or learning disability services.
  • To improve access to and responsiveness of services, there needs to be:
    • improved diagnostic services and clear pathways to care and support
    • better access to mental health services where required, and the provision of adjustments to meet individual needs
    • greater awareness of autism among healthcare and social care professionals
According to the National Autistic Society 'I exist report' (2008), only 15% of adults with autism are in full-time paid employment and 49% of adults with autism still live at home with their parents. Of those adults who live on their own, 44% say that their families provide most of their support.

Northumberland (2012 data)

Based on national prevalence rates, it would be expected that approximately 3,120 Northumberland residents would have an ASD, 2,770 of whom would be aged 18 and over.

From local authority data, approximately 400 adults (over 18 years) are known to services (250 in community learning disability teams and 150 known to mental health teams). This suggests that there are many more people living in the community with Autism Spectrum Disorder (ASD) who are not receiving formal help.

The number of adults in Northumberland who have a learning disability and Autism Spectrum Disorder known to social care is 250. 149 of these people have a formal diagnosis, 105 of whom receive services in addition to a care manager. Out of the 101 people who have suspected Autism Spectrum Disorder but no formal diagnosis, only 19 have no other social care services other than a care manager. The majority require additional services.

The number of children and young people (aged 16-20 years) in Northumberland with Autism Spectrum Disorder completing the transition process to adult services is thought to be about 105. The number going through transition is likely to increase in future years as the effect of consistent diagnostic guidelines is felt.

Related pages:

Regional

Data collected from GP systems as part of the quality and outcomes framework indicate that almost 10,300 people aged 18 and over across the North East have been diagnosed with learning disability.

Local

Northumberland has significantly more people with learning disabilities than the national and regional averages (NEPHO 2012).
Data collected from GP systems as part of the quality and outcomes framework indicate that almost 1,500 people aged 18 and over across Northumberland have been diagnosed with learning disability.
  • 34% of people with a learning disability known to services are over 50 years of age, 12% over 65 years
  • There are 100 people with Down’s syndrome known to services
  • At the end of March 2012, 1328 adults with learning disabilities were supported by care managers in Northumberland (SWIFT)
  • 856 people were receiving services commissioned from the social care budget at the end of March 2012. Of these people:
    • 113 were arranging some or all of their support themselves using a direct payment.
    • 218 were supported by home carers, many of them receiving very substantial support – on average 48 hours of home care per week
    • 184 were attending day care services, on average for three and a half days per week.
    • 241 were living in care homes
    • An estimated 505 people took delivery of items of disability equipment supplied by the joint equipment store
    • 131 people received housing-related support was provided to 131 people
    • 38 people received funding for a short-break
    • 62 other people received funding for other services
  • there are 32 shared lives (adult placement) carers offering long term family based support to 43 people with a learning disability (3% of people known to services)
There are currently 951 people of working age recorded as living in settled accommodation (e.g. holding their own tenancies). This equates to 76% of working age people known to services and compares to 22% of people living in residential care.
Community resource centres have been developed to focus on the needs of those people who have complex needs or challenging behaviour. Alternative opportunities include outreach projects, supported employment and further education and leisure activities.

Statistical information

Adults with visual impairments:

  • The prevalence of sight loss increases with age. One in five people aged 75 and over and one in two people aged 90 and over is living with sight loss in the UK.
  • The direct and indirect costs of sight loss are estimated to have risen from £6.5 billion in 2008 to £7.9 billion in 2013 (RNIB 2009).
  • Figures for Northumberland in April 2013 showed a total of over 1,474 people registered as severely sight impaired, blind, sight impaired or partially sighted.
  • There were 2,438 cataract operations for Northumberland residents between Apr 2007 and March 2008 (the latest available ONS data, 2009). This represents 12% of the cataract operations that were carried out in the North East. Please note, it is not uncommon for the same person to undergo two treatments in the same year.
  • Visual impairment increases significantly with age. 44% of those registered with sight impairment are either severe sight impaired or blind.
  • 54% of those registered with a sight impairment (803 people) are aged over 80 years old.
  • 126 adults aged 18-64 who do not fall in other need groups are also registered with severe sight impairments, and 115 with other sight impairments.
 

Adults with hearing impairments

Statistical information:

Additional data to follow

National

  • At least one in four people will experience a mental health problem at some point in their life and one in six adults has a mental health problem at any one time.
  • Almost half of all adults will experience at least one episode of depression during their lifetime.
  • One in ten new mothers experience post-natal depression.
  • About one in 100 people has a severe mental health problem.

Northumberland

  • The number of working age adults in Northumberland with a diagnosable mental illness may be approaching 20,000 – though commonly less than one in four require treatment from specialist mental health services, and less than one in four of these have a psychotic illness.
  • 644 working age adults in Northumberland were on the caseloads of community mental health teams at the end of March 2017.
  • Community mental health teams report that 8-15% of the people they work with have alcohol, drug or other substance misuse problems in addition to their mental illness.
  • Community mental health services in Northumberland generally find that rather under 1% of their caseloads are from non-white ethnic groups – broadly in line with the overall population. There is a little evidence that these groups may be over-represented among those admitted for in-patient care or compulsorily detained in hospital, though the numbers are very small. There is national evidence that black and minority ethnic groups have varying rates of psychosis and can be treated differently from the white population by mental health services.
At the end of March 2017, 362 people with mental health problems were receiving services commissioned from the social care budget. Of these people:
  • 70 people were attending day care and outreach services providing a range of statutory and non-statutory opportunities in different areas of the county with a focus on vocational skills or employment opportunities
  • 53 were arranging some or all of their support themselves using a direct payment
  • 215 were supported by home carers, for an average of 10 hours per week
  • housing-related support was being provided to 60 people
  • 74 were living in care homes, of whom 16 were in care homes providing nursing care. 26 of the 74 people were living in care homes outside Northumberland.
  • 6 people had short breaks in care homes arranged by the adult care directorate

Statistical information:

National data from the 2011 Census:

  • The 2011 Census figures for the UK show an 11% rise in the number of carers since the last Census in 2001 - increasing by over 620,000 to 6.5 million in just 10 years.
  • Carers UK estimates that we will see a 40% rise in the number of carers needed by 2037 – an extra 2.6 million carers, meaning the carer population in the UK will reach 9 million. The care they provide is worth an estimated £119bn per year.
  • Every year over 2.1 million adults become carers and almost as many people find that their caring responsibilities come to an end. 3 in 5 people will be carers at some point in their lives (Carers UK 2014).
  • About 3.4 million (58%) of carers are women and 42% are male.
  • One in five people aged 50-64 are carers, which equates to over 2 million people in this age bracket.
  • Almost 1.3 million people aged 65 or older are carers and the number of carers over the age of 65 is increasing more rapidly than the general carer population. Whilst the total number of carers has risen by 11% since 2001, the number of older carers rose by 35%.
  • Of the estimated 662,000 carers who combine part-time work with caring, 89% are female and women are more likely to give up work in order to care. (equality and human rights commission 2010).
  • A demographic group, sometimes referred to as the 'sandwich generation', typically care for older or disabled parents as well as their own young children. The peak age for such dual-caring is 40-44 for women, and 45-49 for men. Women are more likely to be dual-carers than men.
  • The 2011 Census showed that there were just under 600,000 Black, Asian and minority ethnic (BAME) carers in England. 2011 data indicates that a smaller proportion of the BAME population provides care than the white British population. However the BAME population is much younger and therefore less likely to have older parents or other relatives needing care.

Across all carers:

  • 93% said they provide practical help such as preparing meals, doing laundry or shopping
  • 87% provide emotional support, motivation or keeping an eye on someone either in person or by phone
  • 85% said they arranged or co-ordinated care services or medical appointments
  • 83% said they manage paperwork or financial matters for the person they care for
  • 71% of carers provide personal care like help with washing, dressing, eating or using the toilet
  • 57% carers were helping the person they care for with their mobility – getting in and out of bed, moving around or getting out of the house

According to an NHS information centre survey:

  • most carers (40%) care for their parents or parents-in-law
  • over a quarter (26%) care for their spouse or partner
  • people caring for disabled children under 18 account for 8% of carers and 5% of carers are looking after adult children
  • a further 4% care for their grandparents and 7% care for another relative
  • one in ten carers (9%) care for a friend or neighbour
  • most carers care for just one person (83%), but 14% care for two people and 3% are caring for at least three people
  • 58% of carers look after someone with a physical disability
  • 20% look after someone with a sensory impairment
  • 13% care for someone with a mental health problem
  • 10% care for someone with dementia
Further information can be found in this policy briefing from Carers UK: facts about carers 2014.

Carers UK has produced extensive research on issues affecting carers. Research reports can be accessed via the following link: https://professionals.carers.org/
Analysis from the latest (2011) census shows that the number of people in Northumberland providing unpaid care has increased in the last 10 years from 33,609 to 35,697. The percentage of the population who are unpaid carers has slightly increased from 10.9% to 11.3%. The percentage of the population who are providing more than 20 hours unpaid care has increased slightly from 3.6% to 4.2%.

The recorded number of people providing unpaid care fewer than 20 hours per week has fallen over the past 10 years (a decrease of 356 carers). The recorded number of people providing more than 20 hours care continues to rise (an increase of almost 2.5 thousand in the last ten years).

More than 20 hours is the point at which caring starts to significantly impact on the health and wellbeing of the carer, and their ability to hold down paid employment alongside their caring responsibilities.
  • more than 13,000 people provide more than 20 hours of care, which is an increase of 22% in 10 years
  • nearly 9,000 people provide over 50 hours of care, which is an increase of 17% in 10 years

Young carers - 2011 census

The 2001 census found 175,000 young carers in the UK. Some 13,000 are providing more than 50 hours of help a week. Recent estimates are nearer to 700,000 young carers. The vast majority (85%) of all children providing care are caring for one to 19 hours per week. This is a wide range which means caring will affect these young people in different ways.

The 2001 census identified 806 young carers in Northumberland aged 5-18 who provided care, some up to 50 hours or more per week.
The National Society for the Prevention of Cruelty to Children, concludes that 4% of children will be young carers at some point in their childhood. 57% of known young carers are girls and 43% are boys.

This amounts to at least 2,000 children and young people of school age in Northumberland, but this is still considered a conservative estimate. This figure is more than doubled taking into account the transition into adulthood and young adults up to 25 who take on the caring role instead of higher education/work.

More detailed figures showing the profile of carers in Northumberland by location and age will be available soon.
pilepsy is a long-term condition affecting the brain which causes repeated seizures.
It is estimated to affect more than 500,000 (1)  people in the UK and some 1,800 people
in Northumberland(2) .

Estimates are difficult as the condition is often misdiagnosed -
20-31 per cent of diagnoses according to one source(3) are misdiagnosed.
The severity of seizures differs significantly from person to person, with some people
simply experiencing no more than an odd feeling with no loss of awareness while
others lose consciousness and have convulsions. 

Some people only have a one-off epileptic seizure during their lifetime. Better treatment and diagnosis can also
potentially make a big difference. The Joint Epilepsy Council has estimated that
over half of those diagnosed with epilepsy are completely seizure-free, but that with
better treatment and diagnosis this proportion could be as high as 70 Per cent. (4)
Epilepsy is a condition that can start at any age, but prevalence increases generally
with age 5 : an estimated 1 in 509 children under 4 have epilepsy; 1 in 140 children
under 16; 1 in 67 people aged over 65. 

There is a correlation between epilepsy and learning disability as more than one in five people with epilepsy have a learning
disability. People in more socially deprived areas are more likely to have the
condition, with prevalence 25 per cent higher in most socially deprived areas than in
the least deprived areas.

Further information:

Further information is available from the Epilepsy Society and Young Epilepsy 


1 NHS Choices (http://www.nhs.uk/Conditions/Epilepsy/Pages/Introduction.aspx)
2 Northumberland County Council estimate based on prevalence rate of 6.2 @ 100,000, and ONS mid-year
population estimates (Northumberland County Council, February 2017:
http://www.northumberland.gov.uk/NorthumberlandCountyCouncil/media/Northumberland-
Knowledge/Know%20bulletins/Population-and- Health-Bulletin- Jan-2017.pdf
3 Joint Epilepsy Council September 2011:
http://www.epilepsyscotland.org.uk/pdf/Joint_Epilepsy_Council_Prevalence_and_Incidence_September_11_
%283%29.pdf
4 Joint Epilepsy Council 2011.
5 Joint Epilepsy Council 2011.