Part of: Ill Health and Disability

Related to:Children and Young People, Special Educational Needs, Autism, People with Multiple Needs, Attention Deficit Hyperactivity Disorder (ADHD), Child Health and Wellbeing Survey

Key Facts

  • Nearly 3,500 residents are estimated to have a learning disabilility, of whom just over 700 are known to services. This is roughly in line with national expectations.
  • There were 733 (2012/13 financial year) people 18 years and over registered with learning disabilities in GP practises in Bath and North East Somerset.
  • It is estimated that in B&NES in 2014 there was a total of 592 primary, secondary and special school children identified as having a learning disability (2.02% of pupils), slightly lower than the proportion in the South West as a whole (2.37%) and England (2.87%).
  • People with learning disabilities experience a range of additional clinical and social needs and have considerably shorter life expectancy than the population as a whole.
  • Consultation with residents with learning disabilities showed that there were many positive aspects of life in B&NES, although issues emerged surrounding harassment, criminal victimisation and holding on to long-term employment.

Definition

 A Learning disability includes the presence of:

  • a significantly reduced ability to understand new or complex information, to learn new skills (impaired intelligence), with;
  • a reduced ability to cope independently (impaired social functioning) which started before adulthood, with a lasting effect on development

What does the data say?

Prevalence

Estimates suggest that there are likely to be 3433 people aged 18+ in B&NES with a learning disability (2014 estimates) 1, approximately 2% of the population. National figures suggest that local services will probably only be aware of about 1 in 4 of these people 2 which would equal around 858 people in Bath and North East Somerset, with over 2,500 unknown to services. This figure is expected to increase to approximately 3,696 by 2030, an increase of 7.6%. 3

There were 733 (2012/13 financial year) people 18 years and over registered with learning disabilities in GP practises in Bath and North East Somerset.* 4

The prevalence of learning disabilities in those aged 18 and over in the B&NES registered GP population has increased slightly from 0.4% in 2008/09 - 2011/12, to 0.5% in 2012/13 (financial years). This rate is virtually the same as the rate nationally.* 5

learning_disabilities_18_rate_for_the_bnes_and_england_gp_populations_2008-13_-_line_graph.

Figure 1: Learning disabilities prevalence (ages 18+) in B&NES and England GP 18 years + registered populations (2008/09 – 2012/13 financial years)* 6

*It is important to note that the above prevalence rates are based on the GP registered population of Bath and North East Somerset and so some of these people may not be residents of Bath North East Somerset. Nevertheless, the vast majority of people will be registered with a GP in their county of residence.

For more up to date prevalence figures for learning disabilities recorded as part of the NHS Quality and Outcomes Framework (QOF), see the Ill Health and Disability section. 

GPs have a similar level of caseload for people with learning disabilities when compared to national levels 7

It is estimated that in B&NES in 2014 there was a total of 592 primary, secondary and special school children identified as having a learning disability (2.02% of pupils), slightly lower than the proportion in the South West as a whole (2.37%) and England (2.87%). 8

Life Expectancy and Mortality

People with learning disabilities have a shorter life expectancy than other people. They also have poorer physical and mental health. These things are not inevitable and can be avoided 9;

  • Mean life expectancy is estimated to be 74, 67 and 58 for those with mild, moderate and severe learning disabilities respectively
  • The mean life-expectancy of people with Down’s syndrome, which has been estimated at 55 years
  • Life expectancy is increasing, in particular for people with Down’s syndrome, with some evidence to suggest that for people with mild learning disabilities it may be approaching that of the general population

All-cause mortality rates among people with moderate to severe learning disabilities are three times higher than in the general population, with mortality being particularly high for young adults, women and people with Down’s syndrome 10

People with learning disabilities also have poorer physical and mental health and can experience issues with wider health determinants 11

  • Respiratory disease is possibly the leading cause of death for people with learning disabilities (46%-52%), with rates much higher than for the general population (15%-17%)
  • Coronary heart disease is a leading cause of death amongst people with learning disabilities (14%-20%), with rates expected to increase due to increased longevity and lifestyle changes associated with community living 12
  • The key lifestyle issues of smoking and obesity are also issues for many people with learning difficulties. 13
  • The prevalence of psychiatric disorders is 36% among children with learning disabilities, compared to 8% among children without learning disabilities nationally.  Increased prevalence of psychiatric disorder is particularly marked for people with autistic spectrum disorder.

Accommodation and Employment

65.1% of adults with learning disabilities lived in their own home or with family in B&NES in 2012-13, this is an increase from 2010-11 (35%), but was lower than the comparator group of local authorities (73.1%) and England (73.5%). Comparable councils are selected according to the Chartered Institute of Public Finance and Accountancy (CIPFA) Nearest Neighbour Model, which identifies similarities between authorities based upon a range of socio-economic indicators. 14 15

Paid employment has also increased recently from 2% in 2008/9 to 7.7% in 2012/13, in-line nationally (increase thought to be from more people getting jobs and also improved performance in relation to the number of people who have been assessed or reviewed) 16 17

Multiple Needs/Co-morbidity

  • About 30% of people with learning disabilities have significant sight impairment and 40% have significant hearing problems
  • Up to 30% of people with learning disabilities also have physical disabilities, most often owing to cerebral palsy
  • 13–24% of people with a learning disability are affected by epilepsy 18
  • There is a high prevalence of helicobacter pylori, a class 1 carcinogen linked to stomach cancer, gastric ulcer and lymphoma, among people with learning disabilities
  • Children with Down’s syndrome are at particularly high risk of leukaemia compared to the general population, although the risk of solid tumours, including breast cancer, is lower and almost half of all people with Down’s syndrome are affected by congenital heart defects.
  • People with asthma and learning disabilities were found to be twice more likely to be smokers than patients with learning disabilities who do not have asthma. More than half of women with learning disabilities and asthma are also obese
  • There is a high prevalence of helicobacter pylori, a class 1 carcinogen linked to stomach cancer, gastric ulcer and lymphoma, among people with learning disabilities
  • There is a high prevalence of helicobacter pylori, a class 1 carcinogen linked to stomach cancer, gastric ulcer and lymphoma, among people with learning disabilities
  • Children with Down’s syndrome are at particularly high risk of leukaemia compared to the general population, although the risk of solid tumours, including breast cancer, is lower and almost half of all people with Down’s syndrome are affected by congenital heart defects.
  • People with asthma and learning disabilities were found to be twice more likely to be smokers than patients with learning disabilities who do not have asthma. More than half of women with learning disabilities and asthma are also obese

Mental health 19: The prevalence of psychiatric disorders is 36% among children with learning disabilities, compared to 8% among children without learning disabilities, with children with learning disabilities accounting for 14% of all British children with a diagnosable psychiatric disorder. Increased prevalence of psychiatric disorder is particularly marked for autistic spectrum disorder

  • There is some evidence to suggest that the prevalence rates for schizophrenia in people with learning disabilities are approximately three times greater than for the general population, with higher prevalence rates for South Asian adults with learning disabilities compared to White adults with learning disabilities.

The prevalence of dementia is higher amongst older adults with learning disabilities compared to the general population (22% vs 6% aged 65+), and is associated with a range of potentially challenging behaviours and health problems.  People with Down’s syndrome are at particularly high risk of developing dementia, with the age of onset being 30-40 years younger than that for the general population

  • Amongst people with moderate to profound learning disabilities, deaths from dementia are more common in men than women
  • Rates for dementia, of whatever cause, using DSM-IV criteria were 13.1% in those 60 years and over and 18.3% in those 65 years or over. This compares to prevalence rates in the general population, quoted by the Eurodem Consortium of 1 per cent for 60- to 65-year-olds to 13 per cent for 80- to 85-year-olds and 32 per cent for 90 to 95-year-olds

Epilepsy 20.The prevalence rate of epilepsy amongst people with learning disabilities has been reported as at least twenty times higher than for the general population, with seizures commonly multiple and resistant to drug treatment

Service Demand

Of adults (age 20+) with learning disabilities who are known to learning disability services 21:

  • 57% have significant levels of health/social care needs and
  • 56% receive some form of out-of-home residential support, with this figure rising to 76% in the 50+ age group

People with learning disabilities who are not known to specialist services may still have some significant support needs. People with mild learning disabilities are significantly more likely than their peers to be still living with their parents, be unemployed, have literacy and numeracy problems and to experience high levels of psychological distress 22

What does the community say?

Child Health and Wellbeing Survey

For the results of the Child Health and Wellbeing Survey see the Child Health and Wellbeing Survey section.

Learning disabilities focus groups 23

In late 2012, YourSay advocacy conducted 5 focus groups with local residents with learing difficulties to discover more about their experiences of living in B&NES.

Crime

All the participants that lived independently had experienced crime in one form or another. Living on a higher floor, double door entry systems and video intercoms were all thought to help with feelings of safety in the home. On the streets many participants had been verbally or physically abused and people were confused about the correct number to call for the emergency services. Transport costs were seen as a problem, the participants were often faced with the choice to not go out or to risk walking home alone in the dark as taxi’s were too expensive. The effects of crime were long lasting with participants citing serious long lasting issues coping with the fear and distress when they had been victims of crime.

Social Lives

Having friends and social groups to spend time with was valued but not everyone had the social life they wanted. In particular, organised network groups, charity groups and churches were valuable social outlets. Barriers to having an active social life included time off work, lack of money, transport constraints, staffing costs, residential living area and frequent changes in circumstances.

Health Services

People were generally positive about the health services they used, GP’s were considered friendly and explained instructions thoroughly. It was sometimes difficult to see your own GP (but this wasn’t normally considered a problem). However, appointments were sometimes hard to book and frequently delayed. If it was difficult to get an appointment then people would use the walk in centre or A&E. People were also happy with the service from pharmacies.

Housing

Some participants felt their current housing situation was appropriate, stable and in a good area but everyone had some periods of unstable accommodation and most had spent at least some time in a hostel and/or moved in with family. Other reasons for being dissatisfied included house and/or local area being inappropriate for their needs, bullying or harassment in their neighbourhood, lack of/poor choice of housing/area. In addition, all participants voiced fears about the forthcoming changes to benefits and none were entirely clear how it would affect them. Most housing was housing association one person used a private landlord. Some of the participants were very positive about their current living arrangements, saying that they felt safe had the freedom to do what they wanted and people were generally happy with the maintenance service provided by housing association Curo and with the service provided by private landlords.

Employment

All participants had worked at some point in their lives although secure, paid employment was difficult for people with learning disabilities to find. Barriers to finding employment include anxiety, poor health, discrimination, and application forms. Some people lacked confidence about working due to previous bad experiences which included feeling out of their depth, communication issues, prejudice and bullying. Participants felt that the employment issues were twofold and that both getting and keeping a job was difficult.

CIPOLD report summary 24

  • The Confidential Inquiry into premature deaths of people with learning disabilities (CIPOLD) took place from 2010 to 2013 and reviewed the deaths of 247 people with learning disabilities within 5 primary care trusts in the South West of England. The following summary describes the reports key findings and recommendations.
  • The most common underlying cause of death for people with learning disabilities was respiratory infections.
  • 43% of deaths deaths in people with learning disabilities were unexpected, this is not significantly different from the general population.
  • 42% of deaths were assessed as being premature, with the main reasons being delays or problems with diagnosis (29%) or treatment (30%), and problems with identifying needs.
  • Significantly more patients with learning disabilities (17%) were underweight than the general population (2%) and 97% had one or more long-term or treatable health conditions in addition to their learning disability (including 43% with epilepsy).
  • 12% of patients who died had never had an annual health check.
  • While more than a third reported difficulties communicating pain, only 4 were given a pain assessment such as DisDAT.
  • 64% lived in residential care homes with 24-hour paid carer support at the time of their deaths and 20% had safeguarding concerns raised previously (as well as a further 8% raised retrospectively)
  • GP referrals generally commonly did not mention learning disabilities.
  • There was a lack of coordination of care across and between the different disease pathways and service providers.
  • Professionals in both health and social care commonly showed a lack of adherence to and understanding of the Mental Capacity Act 2005, along with deficient record-keeping.

Recommendations

  • Communications within and between agencies must be improved and a named health professional should coordinate the care of those with multiple health conditions.
  • Proactive use of annual health checks to develop and implement health action plans.
  • Identification of advocates to help people with learning disabilities to access healthcare services.
  • Health and social care providers should not make rapid assumptions about quality of life or the appropriateness of interventions.
  • People having problems using recognised care pathways must be referred to specialist expertise.
  • Providers must make sure that all professionals understand the Mental Capacity Act and act in accordance with it.
  • Routine collection and review of data that provides intelligence about the mortality of people with learning disabilities and the establishment of a National Learning Disabiltiy Mortality Review.

For the full list of recommendations see the CIPOLD report executive summary

Are we meeting the needs?

  • This is the lowest rate amongst local authorities in the South West (Bristol 215 per 100,000, Gloucestershire 250 per 100,000)25
  • 271 people with learning disability in B&NES accessed community based support in 2010/11 (this is 40% of people on GP learning disabilities register) 26
  • GPs in B&NES have about the same percentage of people with learning disabilities on their registered lists as the England average. This may just tell us that local GPs are roughly as good as the national average at recognising or recording people with a learning disability. The number of people with a learning disability who are registered with GPs is B&NES has increased from 3.3 in 1000 people in 2007/8 to 4.2 in 1000 people in 2010/11. This may reflect better recognition than an increase in prevalence 27
  • The percentage of adults (aged 18 and over) with learning disabilities who have access to social care & residential care is in the lowest quintile nationally and the third lowest in the South West region 28
  • In-line with average spending on residential care on in-house provision 29