Brent JSNA 2014/15 Refresh. Learning Disabilities information sheet NHS Brent CCG and LB Brent

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1 JSNA Refresh 2014/15 March 2015 Learning Disabilities Summary Nationally, 2.2% of the population currently have a learning disability. In Brent, this equates to 6,980 people when applied to the current population estimate of 317,264 In Brent, 2.6% of school children had a learning disability in This was slightly lower than the England average of 2.9% In NHS Brent CCG, a total of 1,166 people aged 18 years and over were registered as having a learning disability in 2013/14. This equates to 0.4% of NHS Brent CCG s practice population aged 18 years and over In Brent, the proportion of eligible adults aged 18 years and over with a learning disability who received a GP health check in was 80.5%. This was significantly above the England average of 52.7% Around 2% of adults with a learning disability were in paid employment in Brent in 2013/14. This was significantly below the England average of 6.7%. Background A learning disability is recognised as the presence of a significantly reduced ability to understand new or complex information, to learn new skills, with a reduced ability to cope independently. The definition incorporates people who have a broad range of disabilities, but does not include all those people who have a learning difficulty 1. Nationally, 2.2% of the population have a learning disability. In Brent, this equates to 6,980 people when applied to the current population estimate of 317, Of those people who have a learning disability, approximately 20% will generally be known to specialist services, or will be registered as having a learning disability. As such, the remaining 80% will be accessing universal services and may require reasonable adjustments to be put in place to accommodate their needs. Learning disabilities are associated with: Infections, accidents or traumas before birth Genetically related factors Complications during birth especially if the baby is starved of oxygen or is born prematurely Childhood illness, such as meningitis Transforming health and social care services and improving the quality of care offered is key in ensuring better care and outcomes for adults and children with learning disabilities. Past events, including the physical and psychological abuse of patients which took place at Winterbourne View hospital in South Gloucestershire have highlighted the importance of good quality commissioning for people with learning disabilities and challenging behaviour. 1 HSCIC ASCOF 2 ONS 2013 mid-year population estimates

2 Following the Winterbourne View review 3, developing pathway for people with learning disabilities, behaviour that challenges, complex needs or mental health issues is seen as a commissioning priority of 4. A strong understanding of our communities is required to ensure that the needs of people with learning disabilities are identified and fully met. Some of the issues and challenges facing people with learning disabilities in Brent, both now, and in the future, are discussed below. Children with learning disabilities Learning disabilities among children and adults may be categorised as mild, moderate or severe. Children and young people with a learning disability may also have special educational needs (SEN). In Brent, 2.6%, or 1,259 pupils in primary, secondary, or special school had a learning disability in This is slightly lower than the England average of 2.9% 5. In January 2012, 24.5 children had a learning disability known to schools for every 1,000 pupils in Brent. This was the same as the average in England. The rate of children with moderate learning difficulties known to schools in Brent was 19.3 per 1,000 pupils. This was similar to the England average which was 19.7 per 1,000 pupils 6. The rate of children with a severe learning difficulty known to schools was 4.16 per 1,000 pupils for the same period. The England average rate was similar at 3.65 per 1,000 pupils 7. The rate of children with profound and multiple learning difficulties known to schools was 0.99 per 1,000 pupils. This was not significantly different to the England average of 1.23 per 1,000 pupils 8. Children with Autistic spectrum disorders (ASDs) Children with an ASD don t tend to acquire the usual ways to communicate using verbal or non-verbal skills that other children of the same age develop. Some children may be very mildly affected and require little support, whereas other children are more severely affected and need a lifetime of special support. In January 2012, the rate of children with ASD known to schools in Brent was 6.86 per 1,000 pupils. This was lower than the England average, which was 8.17 per 1,000 pupils 9. 3 Department of Health, Transforming care, a national response to Winterbourne View Hospital (final report) 4 NHS Brent CCG, Final Commissioning Intentions, Department of Education, special educational needs statistics 6 PHE, Learning Disabilities Profile for Brent, Department for Education, Special Educational Needs in England, Statistical First Release, January PHE, Learning Disabilities Profile for Brent, Department for Education, Special Educational Needs in England, Statistical First Release, January 2012

3 Adults with learning disabilities In NHS Brent CCG, a total of 1,166 people aged 18 years and over were registered as having a learning disability in 2013/14. This equates to 0.4% of NHS Brent CCG s practice population aged 18 years and over. The England average prevalence was 0.5% 10. Variations at practice level among adults in NHS Brent CCG aged 18 years and over who have a learning disability show that the prevalence ranged from 0.08% to 1.3% in 2013/14. The prevalence of adults with learning disabilities in Brent is predicted to increase in response to a number of factors over the next 15 years. Factors contributing to this projected rise include increasing life expectancy, especially among adults with Down s syndrome. A growing number of children and young people with complex and multiple disabilities are also continuing to survive into adulthood. Adults with ASDs Nationally, estimates are that approximately 1% of the adult population are predicted to have an ASD 11. Rates of ASD are higher in adult males (1.8%) than in females (0.2%) at a national level 12. Current estimates are that 2,175 adults aged 18 to 64 years in Brent have an ASD. Forecasts show that between 2015 and 2030, the number of adults aged 18 to 64 years with an ASD in Brent is predicted to rise by 9%, with males accounting for the majority of these cases (figure 1). Years Total population aged 18 to 64 predicted to have 2,175 2,254 2,310 2,369 autistic spectrum disorders Total males aged predicted to have autistic 1,967 2,043 2,097 2,153 spectrum disorders Total females aged predicted to have autistic spectrum disorders Figure 1: Adults aged 18 to 64 in Brent predicted to have an ASD. Source: PANSI. The prevalence rates have been applied to ONS population projections of the 18 to 64 population to give estimated numbers predicted to have an ASD up to Although autism is a development disorder and not a learning disability, some people with autism may have an associated learning disability or mental health problem. Nationally, it is estimated that 7.5% of adults with a learning disability may also be autistic 13. Furthermore, only 15% of adults with autism in the UK are in full-time paid employment PHE, National General Practice Profiles, QOF, 2012/13 11 Emerson & Baines: The Estimated Prevalence of Autism among Adults with Learning Disabilities in England, Autism Spectrum Disorders in adults living in households throughout England - report from the Adult Psychiatric Morbidity Survey The Adult Psychiatric Morbidity Survey on autism and adulthood, Redman, S et al (2009), Don t Write Me Off. Make the system fair for people with autism. London. The National Autistic Society, pg 8

4 Health issues and inequalities Evidence shows that people with learning disabilities die earlier at younger ages than the general population 15. Furthermore, certain health issues are more prevalent among people with learning disabilities compared to the general population. These include the following: Respiratory disease Respiratory disease is a significant cause of death among people with learning disabilities (46% to 52%) and is much higher than for the general population (15% to 17%). Heart problems People with learning disabilities are at greater risk of coronary heart disease (CHD) compared to the general population. CHD is the second highest cause of death among people with learning disabilities generally. Some children with congenital heart disease also have learning difficulties. Epilepsy People with learning disabilities are at a much greater risk of developing epilepsy, particularly in cases of severe learning disability. The prevalence of epilepsy amongst people with learning disabilities has been reported as 22%, compared to prevalence rates for the general population of 0.4%-1%. Seizures are commonly multiple and refractory to drug treatment. Mental illness Reported prevalence for anxiety and depression among people with learning disabilities varies widely, but are generally reported to be at least as prevalent as the general population 16. Furthermore, rates of schizophrenia in people with learning disabilities are around three times higher than for the general population (3% versus 1%) 17 with prevalence rates being greater among South Asian adults compared to the White adult population 18. Dementia Dementia is a leading cause of disability in later life, ahead of some cancers, cardiovascular disease and stroke 19. Several types of dementia exist, with Alzheimer s disease the most common. 15 Hollins, S., Attard, M.T., von Fraunhofer, N. & Sedgwick, P. (1998). Mortality in people with learning disability: risks, causes, and death certification findings in London. Developmental Medicine & Child Neurology, 40, Stavrakaki, C. (1999). Depression, anxiety and adjustment disorders in people with developmental disabilities. In N. Bouras (ed.), Psychiatric & Behavioural Disorders in Developmental Disabilities & Mental Retardation (pp ). Cambridge: Cambridge University Press 17 Doody et al, Pfropfschizophrenie revisited: schizophrenia in people with mild learning disability. British Journal of Psychiatry, 173, Chaplin et al, Psychiatric disorder in Asian adults with learning disabilities: patterns of service use. Journal of Intellectual Disability Research, 40, Department of Health, press release 5, November 2009

5 The prevalence of dementia is significantly higher among older adults with learning disabilities compared to the general population (21.6% compared to 5.7% aged 65+) 20. Furthermore, people with Down s syndrome have particularly high risk of developing dementia, with an age of onset years younger than the general population 21. Visual impairment Visual impairment is more prevalent among people with learning disabilities compared to the general population. People with learning disabilities are between 8.5 and 200 times more likely to have a visual impairment compared to the general population. Obesity People with learning disabilities are more likely to be either underweight or obese than the general population 22. Furthermore, people with learning disabilities who are at risk of being overweight or obese are likely to be at an increased risk of diabetes 23. Access to health services People with learning disabilities have lower rates of access to some health services such as screening and immunisation. Interventions which have been made available at a national level to tackle some of the inequalities identified above include the provision of health checks on an annual basis for people aged 18 years and over with a learning disability. In Brent, the proportion of eligible adults aged 18 years and over with a learning disability who received a GP health check in was 80.5%. This was significantly above the England average, which was 52.7% 24. A health passport scheme was launched by NHS Brent CCG in 2014 to help residents aged 14 years and over with a learning disability to access better health care when they are in hospital or visiting a GP. The passport is used to determine the type and level of support the patient may require and how best to communicate with the person based on their needs. Accommodation and employment Accommodation Accommodation is a key factor for people with learning disabilities and settled accommodation can have a strong impact on their overall quality of life, safety, and social inclusion. However, according to figures reported nationally, at least half of all adults with a learning disability live in the family home. This suggests that these people don t have the same opportunities as other people to gain independence, learn new skills and make choices about their own lives Cooper, S.A. (1997a). High prevalence of dementia among people with learning disabilities not attributable to Down s syndrome. Psychological Medicine, 27, Holland et al, Population based study of the prevalence and presentation of dementia in adults with Down s syndrome. British Journal of Psychiatry, 172, Emerson et al (2012). Health inequalities and People with Learning Disabilties in the UK. Learning Disabilities Observatory 23 NHS Health Scotland. People with Learning Disabilities in Scotland: Health Needs Assessment Report, Glasgow: NHS Health Scotland, HSCIC 25 Figures reported by Mencap:

6 In 2013/14, 60% of adults (or 405 adults) with a learning disability were living in stable and appropriate accommodation in Brent. This was lower than the England average which was 74.8% and the London average, 68.5% 26. Employment Less than 1 in 5 people with a learning disability work. In comparison, 1 in 2 disabled people are in work generally. However, at least 65% of people with a learning disability want to work. Of those individuals with a learning disability who do work, most tend to work part-time and are in low paid jobs 27. Furthermore, just 1 in 3 people with a learning disability take part in some form of education or training 28. Paid employment is generally associated with improved health outcomes for people with learning disabilities and an enhanced quality of life, while giving the individual an income and greater independence. In 2013/14, 2.1% of adults with a learning disability were in paid employment in Brent (figure 2). This was worse than the England average of 6.7% and the comparator group average of 8.2% HSCIC 27 Figures reported by Mencap: 28 Figures reported by Mencap: 29 HSCIC, National Adult Social Care Intelligence Service (NASCIS). Measures from the Adult Social Care Outcomes Framework (ASCOF) Comparator Report, The comparator group average is based on Brent council and 15 comparator councils

7 Figure 2. Adults with a learning disability in paid employment. Source: HSCIC, NASCIS Report, 2013/14