Learning Disability and Autistic Spectrum Disorder Health Needs Assessment

Authors: Nick Germain, Carys Williams

Acknowledgments: Karen Bielby, Natasha Mercier, Victor Joseph, Bronwynn Slater.

Version

Date

Comments

1.0

Oct 2014

Final draft for submission to the core group

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Contents Executive Summary ...................................................................................................................................5 Recommendations .....................................................................................................................................8 1 Introduction ........................................................................................................................................... 10 1.1

Objectives ....................................................................................................................... 10

1.2

Background .................................................................................................................... 10

1.3

National Policies and Strategy..................................................................................... 10

1.4 Local Policies and Strategy ................................................................................................ 11 2 Methods ................................................................................................................................................. 12 2.1 Methods in this needs assessment ................................................................................... 12 2.2 Limitations of this needs assessment ............................................................................... 12 3 Local Demography and Context ........................................................................................................ 14 3.1 Age structure of the population .......................................................................................... 14 3.2 Future Age Trends ............................................................................................................... 14 3.3 Life Expectancy .................................................................................................................... 14 3.4 Healthy Life Expectancy ..................................................................................................... 15 3.5 Ethnicity ................................................................................................................................. 15 3.5.1 Language in Doncaster....................................................................................... 16 3.6 Deprivation ............................................................................................................................ 16 4 Prevalence of Learning Disabilities and Autistic Spectrum Disorders ......................................... 18 4.1 Children known to schools ................................................................................................. 18 4.2 Young people transitioning into adult services ................................................................ 19 4.3 Adults known to NHS primary care ................................................................................... 20 4.3.1 Gap between known and estimated numbers ................................................. 20 4.3.2 Adults known to NHS primary care with co-morbidities ................................. 21 4.4 Adults known to acute and community NHS services .................................................... 21 4.4.1 People known to RDaSH Learning Disability services .................................. 21 4.4.2 People with learning disabilities admitted to hospital ..................................... 22 4.5 Adults in receipt of NHS Continuing Healthcare Funding.............................................. 22 4.6 Adults known to social care services ................................................................................ 23 4.7 Hospital Passport / ‘My Traffic Light’ ................................................................................ 23 5 Screening for ill-health and diseases ................................................................................................ 25 5.1 Annual Health Check........................................................................................................... 25 5.2 Disease specific screening programmes ......................................................................... 25 6 Mortality in people with learning disabilities ..................................................................................... 27 Page | 2

7 Community supports, Housing and Employment ............................................................................ 28 7.1 Community-based services ................................................................................................ 28 7.2 Personalised care ................................................................................................................ 28 7.3 Housing and accommodation ............................................................................................ 28 7.3.1 Placements ........................................................................................................... 28 7.4 Employment and Day Opportunities ................................................................................. 29 8 Carers .................................................................................................................................................... 31 8.1 Overall number of carers .................................................................................................... 31 8.2 Age of person cared for ...................................................................................................... 31 8.3 Age of the carer.................................................................................................................... 31 8.4 Assessment of carer need .................................................................................................. 31 8.5 Carer health in the 2011 Census....................................................................................... 31 9 Expenditure on services...................................................................................................................... 33 9.1 NHS Programme spend ...................................................................................................... 33 9.2 Adult Social Care spend ..................................................................................................... 33 10 Service User and Stakeholder Voice .............................................................................................. 34 10.1 The voice of service users ............................................................................................... 34 10.2 The voice of professionals ............................................................................................... 35 10.2.1 Placements ......................................................................................................... 35 10.2.2 Continuing healthcare ....................................................................................... 36 10.2.3 Data ..................................................................................................................... 36 10.2.4 Funding ............................................................................................................... 37 10.2.5 Transition ............................................................................................................ 37 10.2.6 Employability ...................................................................................................... 37 10.2.7 Training ............................................................................................................... 38 10.2.8 Community Services ......................................................................................... 38 10.2.9 Primary care ....................................................................................................... 38 Appendix ................................................................................................................................................... 39 References ............................................................................................................................................... 50

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Abbreviations AMHS

Child & Adolescent Mental Health Services

CCG

Clinical Commissioning Group

CHAD

Choice for All Doncaster

CHC

Continuing Health Care

DCCG

Doncaster Clinical Commissioning Group

DH

Department of Health

DMBC

Doncaster Metropolitan Borough Council

DVTU

Doncaster Vocational Training Unit

EHC Plan

Education Health & Care Plan

GP

General Practitioner

HLE

Healthy Life Expectancy

HSCIC

Health & Social Care Information Centre

ICD10

International Classification of Disease Version 10

IHAL

Improving Health and Lives (the Learning Disability Observatory)

IPC

Institute for Public Care

LSOA

Lower Super Output Area

NEET

Not in Education Employment or Training

ONS

Office for National Statistics

SEC

Social Education Centre

SEN

Special Educational Need

TLA

Traffic Light Assessment

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Executive Summary

Definition of Learning Disability The Department of Health (DH) has defined a Learning Disability as the presence of a significantly reduced ability to understand new or complex information and to learn new skills (impaired intelligence), along with a reduced ability to cope independently (i.e. impaired social functioning) which started before adulthood and has a lasting effect on development (DH, 2001). Someone is also classed as having a Learning Disability if their IQ score is less than 70 (DMBC/NHS Doncaster, 2010). It should be noted that Learning Disability does not include all those who have a 'learning difficulty' which is more broadly defined in education legislation.

Population and Epidemiology Doncaster is a diverse and vibrant Borough, with a population of 302,500 at the 2011 Census. Compared to the England average, Doncaster has a smaller proportion of adults aged 20 to 44 and a higher proportion of older people aged 50 and above.

In January 2013, 1,350 pupils in Doncaster had a statement for an Autistic Spectrum Disorder or a learning disability (Department for Education, 2014). Of the 474 pupils with autism, 47% were in primary schools, 33% in secondary schools and 20% in special schools. Combining all 876 pupils with a learning disability, 34% were in primary schools, 28% in secondary schools and 37% in special schools.

The number of patients registered for a learning disability stands at 1,313 patients, or 5.4 per 1,000 patients aged 18 years and above. This is significantly higher than the England average (4.7 per 1,000) (HSCIC, 2013). An estimate of the true number of people with a learning disability is available (IPC, 2014), calculated by applying rates from an academic study (Emerson & Hatton, 2004) to the population aged 18 years and above. The diagnosis rate for people with learning disabilities is 23% (1,313 registered patients out of an estimated total of 5, 610).

Service utilisation On the 11/07/2014 nearly 200 patients within DCCG were in receipt of funding (DCCG, 2014). This equates to 10% of patients known to NHS Primary Care. Around three quarters of these people are fully funded by the NHS, with the remaining quarter jointly funded by health and social care. Approximately a quarter of these recipients were located outside the Doncaster area. At March 2013, the number of people funded either fully or jointly stood at 155 (DMBC, 2013). Page | 5

A low proportion of patients with learning disabilities are registered for coronary heart disease compared to all patients (12 per 1,000 compared to 52 per 1,000 for all patients). Recorded prevalence of diabetes is roughly the same (75 per 1,000 compared to 72 per 1,000 for all patients), while identification of asthma is actually higher in people registered for a learning disability (99 per 1,000 compared to 69 per 1,000 in all patients).

In the last year, 81% of eligible patients received a health check (IHAL, 2014) which is significantly above the England average of 52%. At the end of 2012/13, coverage for cervical smears was especially low for people with learning disabilities compared to the general population (DMBC, 2013). Coverage for breast cancer screening was slightly lower than for the general population, and comparable for bowel cancer screening.

Data on elective and emergency hospital admissions were supplied by DCCG. The numbers were very low suggesting that people with learning disabilities are not reliably identified through the use of ICD 10 codes.

Approximately 900 people with learning disabilities are receiving services or support through Adult Social Care (HSCIC, 2014a). In the last 5 years there has been a marked shift towards community based services over residential and nursing care.

Service User and Stakeholder Voice Consultation with service users highlighted a number of services and sources of support which included peers, family, friends, support groups and staff, and health professionals. During transition, an initial loss of routine and lack of support were identified as some of the bigger changes associated with leaving school. Access to employment and training opportunities were viewed as important, gave a sense of independence and helped people to feel valued.

One of the key issues highlighted in consultation with professionals was the need to continue work to increase local provision to keep more people with learning disabilities in Doncaster, although some progress has already been made. Issues with data sharing across organisations were discussed in length as a barrier to providing key support in some cases, such as when patients with learning disabilities are referred to hospital. Work to address this will enable care to be adapted as appropriate to better meet their needs. Page | 6

Threats to funding and a government reduction in spending were identified as having a large impact on care, whilst the need to increase some training provision with staff groups such as GPs was also highlighted. Some current training provision and work with professionals was acknowledged as a positive and opportunities to develop this further were discussed. Employment opportunities were again seen as a key priority and an opportunity to continue to build on current work and models was also identified.

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Recommendations The following recommendations are intended to inform strategic development, future commissioning priorities and working practice.

Recommendation 1 – Education professionals require the skills to screen and refer children where necessary, and health organisations need to participate fully in the implementation of Education, Health and Care Plans.

Recommendation 2 – There is a need for case finding of patients with learning disabilities and Coronary Heart Disease.

Recommendation 3 – Acute hospitals require an effective system to flag people presenting or referred to hospitals with learning disabilities.

Recommendation 4 – Efforts to provide Health and Social Care professionals with the skills to screen for learning disabilities need to be continued.

Recommendation 5 – Work should be carried out to clarify whether there is benefit to conducting an audit of ‘primary care needs’ for patients receiving Continuing Health Care to identify trends and possible prevention.

Recommendation 6 – There is a need to differentiate between learning disabilities and Autistic Spectrum Disorders in adults during data collection and recording.

Recommendation 7 – Work should continue to increase the number of people with learning disabilities participating in voluntary activities and paid employment. Evaluate initiatives such as Project Search, expanding these where possible and engaging new employers.

Recommendation 8 – Establish a carers’ forum and raise awareness of the formal and informal services available to people caring for someone with a learning disability.

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Recommendation 9 – Continue work to increase local provision to keep more people with learning disabilities in Doncaster.

Recommendation 10 - There is a need to explore options related to linking up IT systems across the health and social care sector to enable data sharing where possible to improve service provision and planning.

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1 Introduction

1.1 Objectives The aim of this Health Needs Assessment is to understand the profile of those in Doncaster with Learning Disability and Autistic Spectrum Disorder, identify current gaps in service provision and to inform local strategy. Specifically the objectives are: i.

ii. iii. iv.

To review literature on the health needs of those with learning disabilities, including an overview of the policy context and definitions of Learning Disability and Autistic Spectrum Disorder; To describe the local epidemiology of Learning Disability; To consider and review current service provision; To make recommendations to inform/influence local strategy and commissioning needs.

1.2 Background Definitions of Learning Disability are broad and encompass those with range of disabilities. The Department of Health (DH) has defined a Learning Disability as the presence of a significantly reduced ability to understand new or complex information and to learn new skills (impaired intelligence), along with a reduced ability to cope independently (i.e. impaired social functioning) which started before adulthood and has a lasting effect on development (DH, 2001). Someone is also classed as having a Learning Disability if their IQ score is less than 70 (DMBC/NHS Doncaster, 2010). It should be noted that Learning Disability does not include all those who have a 'learning difficulty' which is more broadly defined in education legislation.

1.3 National Policies and Strategy ‘Valuing People’ (DH, 2001) set out a new commitment by Government to improving the lives of those with Learning Disabilities by working with Local Authorities, health services, voluntary organisations, people with Learning Disabilities and their families. This new vision for people with Learning Disabilities focussed on four key principles: Rights, Independence, Choice and Inclusion. It set out a new national objective for services for people with Learning Disabilities, supported by new targets and performance indicators, to provide clear direction for local agencies. It also highlighted problems including poorly co-ordinated services, transition to adulthood, insufficient support for carers, unmet health needs, limited housing choice and employment opportunities. This focussed priorities for local agencies in delivery.

‘Valuing People Now’ (DH, 2009) maintained the vision set out in 2001 and set the challenge for public services and everyone working with people with Learning Page | 10

Disabilities to take a personal approach. This approach starts with each individual, their wishes, aspirations and needs, and which seeks to give them control and choice over the support they need and the lives they lead. By delivering a personalised approach, the priorities are to enable people to take control of their lives, have employment and educational opportunities, have choice over what they do during the day, have better health and have improved access for housing. The priorities set out in this strategy take account of the responses to wide consultation.

1.4 Local Policies and Strategy This Health Needs Assessment will help inform a refreshed local strategy and commissioning needs. The previous strategy ‘Being Valuable, Being Valued’ (DMBC/NHS Doncaster, 2010) set out the plans for 2010-2013 and covered some key priorities including:    

Continuing work on the development of ‘supported living’ priorities; Continuing to create more work opportunities for people with Learning Disabilities (both paid and voluntary) Improving quality and experience of Health Care services; Ensuring people with Learning Disabilities have a greater say in how support services are organised.

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2 Methods 2.1 Methods in this needs assessment This assessment identifies need using quantitative (numeric) and qualitative (consultative) methods. The numeric data describes the demography of Doncaster, the number of people with learning disabilities and their use of services, comparing Doncaster against other areas. Supporting tables and charts are located in the appendices.

The numeric data is from a variety of local and national sources including;        

Census 2011 (Office for National Statistics) Public Health Outcomes (Public Health England web-based tool) Department for Education Statistical Release 2013 (Department for Education) NHS Quality Outcomes Framework 2012/13 (Health and Social Care Information Centre) National Adult Social Care Intelligence Service (Health and Social Care Information Centre) Self-Assessment Framework for Learning Disabilities 2012/13 (Doncaster MBC) Health Check and Screening Projects (Improving Health and Lives, Learning Disabilities Observatory) Projecting Adult Needs and Service Information (Institute of Public Care)

These data sources have been aligned with consultations to capture the views of service users and professionals. The consultation took the form of a workshop with professionals and a focus group with service users through Choice for All Doncaster (CHAD). The questions for the focus group were also sent electronically to groups working with people with learning disabilities. The consultation methods are described in more detail in section 10.

2.2 Limitations of this needs assessment The number of people known to services does not reflect the true number of people with learning disabilities. Estimates have been used where possible but readers should be mindful of the significant population that are not captured by the data, numbering in the thousands.

Some systems rely on paper records, or were not able to aggregate and report data – therefore some stakeholders were not able to provide data when requested.

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Local NHS systems do not flag whether a person has a learning disability, i.e. when a person presents or is referred to hospital. Hospital admissions were only identifiable where the person had an explicit diagnosis with an ICD10 code (and these numbers were very low).

Databases for adult services do not differentiate between autism and learning disabilities – much of the analysis had to consider these issues in unison.

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3 Local Demography and Context Doncaster is a diverse and vibrant Borough. It is of medium size compared to other Boroughs in Yorkshire & Humber, with a population of 302,500 at the 2011 Census. Some areas within the Borough are relatively affluent compared to the national average, though other areas are amongst the most deprived in the country. No Doncaster communities are free of lifestyle or social problems but some areas have multiple and persistent issues afflicting people across the life course.

3.1 Age structure of the population Compared to the England average, Doncaster has a smaller proportion of adults aged 20 to 44 and a higher proportion of older people aged 50 and above. The number of children and teenagers are similar to the national trend. Since 2001, Doncaster’s population has increased by 5.4% (or 15,600 people) and is now estimated to be around 302,500. The population is presented as a pyramid by gender and five year age band in Chart 1 in the appendices (ONS, 2012).

3.2 Future Age Trends Doncaster`s population is expected to grow by approximately 3% (up to 312,500) by 2020 according to estimates based on the last Census. Notably, there are predicted to be increases in all age groups from 55 years and above. The largest increase is expected to be in the population aged 75 years and above, by 16% or an additional 4,000 people. Population projections are presented in Table 1 and Chart 2 in the appendices (IPC, 2014).

People with learning disabilities experience poorer health and die at an earlier age (see section 4) though their longevity may increase alongside trends for the general population. This would have implications for health and social care services striving to maintain people in community settings.

3.3 Life Expectancy For the general population in Doncaster, life expectancy at birth is 77.5 years for men and 81.7 years for women. Both are significantly lower than the national average though life expectancy has increased over the last decade. These increases in life expectancy means more people in Doncaster will reach very old age and extreme old age, resulting in the ageing population identified in section 3.2. Chart 3 in the appendices details the increase in life expectancy for Doncaster and England over the last 10 years (PHE, 2014).

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These inequalities between local and national life expectancy are a result of local socioeconomic determinants and lifestyle behaviours. People with learning disabilities within Doncaster may experience similar inequalities, having poorer health compared to people with learning disabilities in other parts of the country.

There is variation in life expectancy within Doncaster. For males, there is a 7 year range from 73.4 years in Central Ward to 80.4 years in Edenthorpe, Kirk Sandall & Barnby Dun. For females, there is a 7 year range from 78.2 years in Adwick to 85.2 years in Torne Valley. Life expectancy for people with learning disabilities may also differ within the Borough, so that some areas have greater need than others. Chart 4 in the appendices details life expectancy by the 21 Electoral Wards (Doncaster Data Observatory, 2012).

3.4 Healthy Life Expectancy Both males and females have significantly low healthy life expectancy (HLE) compared to England. On average, males in Doncaster experience ill-health from the age of 58.0 years and females from the age of 59.6 years. This means that people in Doncaster typically spend the latter 20 years of their life without good health. It is reasonable to assume that people with learning disabilities experience even lower healthy life expectancy. Chart 5 in the appendices compares HLE in Doncaster to Upper Tier Manufacturing Towns. Other similar areas, such as North East Lincolnshire and Dudley, have a HLE that is 4 to 5 years higher (PHE, 2014).

3.5 Ethnicity In the 2011 Census, the Doncaster population was 91.8% White British compared with 85.5% for Yorkshire & Humber and 79.8% for England. Though less ethnically diverse than the regional and national average, the proportion has increased in recent years – in 2001 the population was 96.5% White British. The minority ethnic groups in Doncaster are detailed in the table below;

Table 2 - Minority ethnic groups within Doncaster (ONS, 2013a) Count White: Other White Asian/Asian British Asian/Asian British: Indian Asian/Asian British: Pakistani Asian/Asian British: Bangladeshi

8,556 7,614 1,865 2,728 117

% of the population 2.8% 2.5% 0.6% 0.9% 0.0% Page | 15

Asian/Asian British: Chinese Asian/Asian British: Other Asian Black/African/Caribbean/Black British Black/African/Caribbean/Black British: African Black/African/Caribbean/Black British: Caribbean Black/African/Caribbean/Black British: Other Black Other ethnic group Other ethnic group: Arab Other ethnic group: Any other ethnic group

1,121 1,783 2,337 1,309 778 250 1,064 231 833

0.4% 0.6% 0.8% 0.4% 0.3% 0.1% 0.4% 0.1% 0.3%

Doncaster has low ethnic diversity though there are concentrated areas of diversity with the Borough. There are significant non-white British populations in the urban centre and surrounding areas, namely Balby (16%), Belle Vue (26%), Bennethorpe (18%), Hexthorpe (24%), Hyde Park (46%), Intake (16%), Lower Wheatley (37%), Town Moor (20%), and Wheatley Park (20%).

3.5.1 Language in Doncaster 96% of Doncaster’s population (aged >3 years) speaks English as their first or preferred language – compared to 94% across Yorkshire & Humber and 92% across England & Wales (ONS, 2013b). 2.1% (approx. 6,300) speak ‘Other European’ languages as a first or preferred language, of which 1.6% (approx. 4,800) speak Polish. No other language accounts for half a percentage in Doncaster though 0.3% (approx. 900) speak Urdu and 0.2% (approx. 600) speak Punjabi. There will be low numbers of people with learning disabilities that have an alternate preference to English, though health and social care services need to cater for these through translation services.

3.6 Deprivation The Index of Multiple Deprivation 2010 provides a composite measure of deprivation across multiple domains including income, employment, health and disability, education, skills and training, housing, crime and living environment. Doncaster is ranked the 39th most deprived of the 326 Local Authorities in England. This measure is available down to Lower Super Output Area (LSOA) and can be mapped within Doncaster.

Map 1 – Indices of Multiple Deprivation by Doncaster by LSOAs (DCLG, 2011)

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There are concentrated areas of deprivation around the urban centre but also in all four corners of the Borough. Forty one LSOAs in Doncaster are in the 10% most deprived in England – areas of particular note include Balby (5 LSOAs), Mexborough (4 LSOAs), Stainforth (4 LSOAs), Bentley (3 LSOAs), Denaby Main (3 LSOAs) and Dunscroft (3 LSOAs). People with learning disabilities in Doncaster may experience a disproportionate level of deprivation compared to other parts of the country.

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4 Prevalence of Learning Disabilities and Autistic Spectrum Disorders

4.1 Children known to schools All children with a learning disability or Autistic Spectrum Disorder should, if additional support is required, receive a statement of Special Educational Need (SEN). It is important that these needs are properly identified; according to a report for the Learning Disabilities Observatory, ‘89% of children with moderate learning disabilities, 24% of children with severe learning disabilities and 18% of children with profound and multiple learning disabilities are education in mainstream schools’ (Emerson et al, 2011, p.40).

Analysis by the Department of Education found the most common primary need for those with statements of SEN was autistic spectrum disorders and moderate learning disabilities. It also found that boys were 2.5 times more likely to have a statement in primary school and 3 times more likely in secondary school (Foundation for People with Learning Disabilities, 2011)

In January 2013, 1,350 pupils in Doncaster had a statement for an Autistic Spectrum Disorder or a learning disability (Department for Education, 2014). Of the 474 pupils with autism, 47% were in primary schools, 33% in secondary schools and 20% in special schools. Combining all 876 pupils with a learning disability, 34% were in primary schools, 28% in secondary schools and 37% in special schools.

Table 3 – Pupils with a School Action Plus or Statement level need in Primary, Secondary and Special schools (Department for Education, 2014)

Autism Spectrum Disorders Specific Learning Disability Moderate Learning Disability Severe Learning Disability Profound & multiple Learning Disabilities Grand total

Total number

Primary school

Secondary school

Special school

474

224

154

96

140

70

68

2

598

274

238

86

232

24

8

200

46

4

0

42

1,490

596

468

426

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Converting the number to a rate per 1,000 pupils allows for a comparison against England. According to this comparison, presented in Chart 6 in the appendix, Doncaster has;  

A significantly high number of pupils with autism and severe learning disabilities. A significantly low number of pupils with moderate learning disabilities and overall number of pupils with learning disabilities

Note - the Department for Education is transferring from a statement of SEN to an Education, Health & Care (EHC) plan. From September 2014 young people in further education will be able to request an EHC plan, and by September 2016 all those in further education should have transitioned. By April 2018 all children will also have moved to EHC plans following a transfer review.

4.2 Young people transitioning into adult services The table below details children and young people statemented for learning disabilities and autism in each year of Secondary school. The younger cohorts contain fewer statements - if the figures are accurate and most children receive a statement in the first few years of Secondary school, then it could be predicted that fewer people will be transitioning from education into adult services in five to ten years’ time. Table 4 – Number of children statemented for learning disabilities and autism in each school year in mainstream and special schools 2014/15 Year 7 (11-12 years) Year 8 (12-13 years) Year 9 (13-14 years) Year 10 (14-15 years) Year 11 (15-16 years) Year 12 (16-17 years) Year 13 (17-18 years) Year 14 (18-19 years)

50 58 53 64 72 111 141 109

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Fewer statements in the younger cohorts may reflect a general decrease in the number of children being statemented for learning disabilities and autism. There has been a year on year decrease from 1,605 in 2010 to 1,443 in 2014, a decrease of 10% over 5 years. In turn, this may be a result of demographic changes. Chart 1 in the appendices shows there are fewer children and young people compared with previous decades there were 53,400 people aged 5-19 years in the 2011 Census compared to 57,400 in 2001.

In reality it is likely that the table above also reflects that some young people receiving a late diagnosis – especially where the figures jump between Years 11 and 12. There is anecdotal evidence that autism is underreported and that some young people receive a late diagnosis in Doncaster.

The new EHC Plans require a more explicit consideration of the health of a child or young person. The Plans will introduce new thresholds and processes which may help address underreporting.

Recommendation 1 – Education professionals require the skills to screen and refer children where necessary, and health organisations need to participate fully in the implementation of Education, Health and Care Plans.

4.3 Adults known to NHS primary care The number of patients registered for a learning disability has increased year on year. The latest figure stands at 1,313 patients, or 5.4 per 1,000 patients aged 18 years and above. This is significantly higher than the England average (4.7 per 1,000). This trend is presented in Chart 7 and Table 4 in the appendices (HSCIC, 2013).

4.3.1 Gap between known and estimated numbers An estimate of the true number of people with a learning disability is available (IPC, 2014), calculated by applying rates from an academic study (Emerson & Hatton, 2004) to the population aged 18 years and above. The diagnosis rate for people with learning disabilities is 23% (1,313 registered patients out of an estimated total of 5,610)

Doncaster sits in the middle of the range of upper tier manufacturing towns as presented in Chart 8 in the appendices. The diagnosis gap does not need to be closed entirely as people with a milder disability may not want or need support, but the rate is Page | 20

significantly lower than five of the other authorities in Barnsley, Rotherham, North East Lincolnshire, Wakefield and Stockton-on-Tees.

4.3.2 Adults known to NHS primary care with co-morbidities Doncaster’s Joint Self-Assessment Framework for Learning Disabilities captures the number of people on GP disease registers (DMBC, 2013). This gives an indication of co-morbidities and/or the under-identification of diseases in people with learning disabilities.

A low proportion of patients with learning disabilities are registered for coronary heart disease compared to the all patients (12 per 1,000 compared to 52 per 1,000 for all patients). Recorded prevalence of diabetes is roughly the same (75 per 1,000 compared to 72 per 1,000 for all patients), while identification of asthma is actually higher in people registered for a learning disability (99 per 1,000 compared to 68 per 1,000 in all patients). These rates are compared in Chart 9 in the appendices.

Recommendation 2 – There is a need for case finding for patients with learning disabilities and Coronary Heart Disease.

4.4 Adults known to acute and community NHS services 4.4.1 People known to RDaSH Learning Disability services The Solar Centre is a day service for adult with learning disabilities and associated health needs. The sessions deliver sociable experiences and develop an individual’s specific skills and interests. Access is via a single point of access through referral and assessment by a multidisciplinary team.

In November 2014 the Centre had 82 service users with an even gender split. In terms of health needs, 11 have Autism, 22 have Epilepsy, 36 use a wheelchair, 61 have Dysphagia (including the need for meal support) and 6 are fed through a PEG system. Trend analysis is not possible due to difficulties combining data from two previous units that merged.

Referrals are largely for adults with profound and multiple learning disabilities, complex epilepsy requiring nurse oversight, or adults with a history of challenging behaviour who have not been successful within the Social Education Centres. Page | 21

The Community Health Team provides healthcare professionals such as Community Nurses and Occupation Therapists. Most work is with people with high individual support needs. The numbers using the Community Health Team has increased consistently from 47 new referrals in 2010 to 135 in 2013. In 2014 there have been 316 new referrals up to November. See Chart 10 in the appendix.

4.4.2 People with learning disabilities admitted to hospital Data on elective and emergency hospital admissions were supplied by Doncaster Clinical Commissioning Group. The numbers were very low suggesting that people with learning disabilities are not reliably identified through the use of ICD 10 codes (International Classification of Disease 10).

Recommendation 3 – Acute hospitals require an effective system to flag people presenting or referred to hospitals with learning disabilities.

Recommendation 4 –Efforts to provide Health and Social Care professionals with the skills to screen for learning disabilities need to be continued.

4.5 Adults in receipt of NHS Continuing Healthcare Funding Records for Continuing Healthcare are reported at a point in time. On the 11/07/2014 nearly 200 patients within NHS Doncaster CCG were in receipt of funding (DCCG, 2014) – this equates to 10% of patients known to NHS Primary Care.

Around three quarters of these people are fully funded by the NHS, with the remaining quarter jointly funded by health and social care. Overall, approximately a quarter of the recipients were located outside the Doncaster area.

Table 6 – People with a learning disability in receipt of Continuing Healthcare funding (DCCG, 2014)

Total number of patients with learning disabilities receiving Continuing

Within Doncaster

Out of Area

Total

144

54

198

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Healthcare Number with a Primary Health Need (fully funded)

101

42

143

Number with Joint Funding (Health & Social Care)

43

12

55

There has been little change on last year, though this number is liable to fluctuation as people are assessed and added or removed from the programme. At the 31st March 2013 the number of people funded either fully or jointly stood at 155 (DMBC, 2013).

It would be useful to identify the domain of people’s ‘Primary Care Need’, e.g. continence, psychological needs, breathing et cetera. However, this is not possible with the system held by NHS Doncaster CCG – it would require the interrogation of paper records which is not possible at this time.

Recommendation 5 – Work should be carried out to clarify whether there is benefit to conducting an audit of ‘primary care needs’ for patients receiving CHC to identify trends and possible prevention.

4.6 Adults known to social care services The number of people with a learning disability receiving services or support through Adult Social Care has remained fairly consistent over the last 6 years – approximately 900 per year (HSCIC, 2014a). However, there has been a change in the type of support with a shift towards community-based services over residential and nursing care. Five years ago 65% of people received community-based care, in recent years this has increased to 85%. The trends in community and residential and nursing care are presented in Chart 11 in the appendices.

Recommendation 6 – There is a need to differentiate between learning disabilities and Autistic Spectrum Disorders in adults during data collection and recording.

4.7 Hospital Passport / ‘My Traffic Light’ The Hospital Traffic Light Assessment (TLA) was devised by Gloucestershire NHS Trust and has been adapted and used by many acute trusts in England. This document should be brought to hospital on all occasions, and remains the property of the patient, so should go home with them on discharge. It assists people by providing staff with Page | 23

important information about them and their health. ‘My Traffic Light’ can be kept at home in case of an emergency admission or deterioration in the individual’s health, or can be completed prior to a planned admission when it may also be used to aid assessment and planning.

Hospital Passports are available to people with learning disabilities in Doncaster. It has not been possible to quantify the number though there is a consensus that they should be expanded. It would also be beneficial to communicate a person’s learning disability status to the Yorkshire Ambulance Service.

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5 Screening for ill-health and diseases

5.1 Annual Health Check People with learning disabilities typically experience poorer physical and mental health, often because they have difficulty recognising illness and communicating their needs. Since 2009 GPs have received extra payments, through a Direct Enhanced Service, to provide health checks to eligible patients – broadly speaking eligibility requires that the person is registered with primary care for a learning disability and is known to social services primarily for their learning disability.

Chart 12 in the appendices details patients with a learning disability that received a GP health check as a % of those eligible for a health check. In the most recent year, 81% of eligible patients received a health check (IHAL, 2014). This is significantly above the figure for England (52%) and places Doncaster in the top 1/5th of Primary Care Trusts (future updates will align with CCG geographies).

5.2 Disease specific screening programmes Screening programmes for people with learning disabilities are reported as part of the Joint Health & Social Care Self-Assessment Framework. At the end of 2012/13, coverage of cervical smears was especially low for people with learning disabilities compared to the general population (DMBC, 2013). Coverage of breast cancer screening was slightly lower than the general population while bowel cancer screening was comparable.

Table 7 – Coverage of screening programmes for people with learning disabilities (DMBC, 2013) Number with learning disabilities eligible

Number with learning disabilities screened

Coverage in the Learning Disabilities population

Coverage in the general population

454

125

28%

72%

Breast cancer screening

192

127

66%

75%

Bowel cancer screening

114

29

25%

24%

Cervical smear

Page | 25

Administering a cervical smear to women with learning disabilities can be a sensitive issue and a higher proportion may be exempt, but reasonable adjustments should be made to make the programmes as accessible as possible. Chart 13 in the appendices presents the coverage of people with a learning disability alongside the national rates for people with a learning disability. In fact coverage for cervical and bowel cancers are comparable to the England average, and coverage of breast cancer is significantly higher.

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6 Mortality in people with learning disabilities Research shows that over half the mortality in people with a learning disability can be attributed to respiratory diseases - 52% compared to just 25% in the general population (see Chart 14 in the appendices). Within these respiratory diseases, the specific causes included pneumonia, pneumonitis (inflammation of the lung tissue) due to solids and liquid, and other unspecified infections.

Other conditions that differ notably from the general population include nervous system diseases (5.3% versus 1.3%) and congenital and chromosomal conditions (4.0% versus >1%). People with learning disabilities are less likely to die from circulatory diseases (12.1% versus 28.9%) and cancer (3.8% versus 22.0%), perhaps because people with learning disabilities die at a younger age. These rates are presented in Chart 15 in the appendices.

These figures are from a report by Learning Disability Observatory - How people with learning disabilities die (Glover & Ayub, 2010), analysing all deaths in England from 2004 to 2008. The authors highlight that only half of death certificates include learning disability relative to the probable true number based on research and expert opinion. This data quality impacts the validity of the research but it still provides a useful basis for this assessment.

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7 Community supports, Housing and Employment 7.1 Community-based services Specific community-based services can be identified from a snap shot reported on the 31st March each year (HSCIC, 2014b). Most of these services comprise home care and day care. The increase in community services identified in section 4.5 can be attributed to increases in home care and, to a lesser extent, direct payments. The trends in these community-based services are presented in Chart 16 in the appendices.

7.2 Personalised care There has been a significant increase in personal budgets over the last 5 years, reaching 355 clients in 2013/14 (HSCIC, 2014c). This increase mirrors the trend in personal budgets for England as a whole. However the figure as a rate per population is lower in Doncaster – approximately 150 budgets per 100,000 compared to 210 per 100,000 across England. The increase in numbers is presented in Chart 17 and the comparison of rates is presented in Chart 18, both in the appendices.

7.3 Housing and accommodation The number of working age adults in settled accommodation has increased consistently in Doncaster from a low of 32% in 2008/09 (HSCIC, 2014d). Last year eight in ten people with a learning disability were in settled accommodation - 615 out of the 755 known to adult services. Those in settled accommodation reside in diverse settings though the majority live with friends/family (315, 51%) or in supported accommodation (220, 36%). This trend is presented in Chart 19 in the appendices.

The non-settled figure, equating to 110 people, is probably inflated by those in residential care. These may be long term or permanent arrangements but for reporting purposes, and a standardised definition, these are counted as unsettled. Around 140 people (combining settled and unsettled definitions) are located within residential care each year (HSCIC, 2014e). Nearly all of these are a permanent arrangement, and there are around 10 new permanent admissions each year. The trend of those in residential and nursing care is presented in Chart 20 in the appendices.

7.3.1 Placements There are 32 residential homes in Doncaster for adults with learning disabilities, including 7 provided by RDaSH and the South Yorkshire Housing Association. These homes provide 371 beds which are purchased by Doncaster Council and other Local Authorities. There has been an increase in residential care beds – at any one time half

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of beds are funded locally, 40-45% are funded by other Local Authorities and 5-10% are void.

Doncaster Council fully or part funds 23 adults with learning disabilities out of the area (as at August 2014) – a figure subject to change depending on CCG funding. The topic of placements featured prominently in the consultation with health and social care professionals in section 10.2.1.

7.4 Employment and Day Opportunities Employment for people with learning disabilities increased from 4.1% in 2008/09 to 7.3% in 2011/12 and has remained at this level for the last few years (HSCIC, 2014f). This trend and rate is comparable to that of England and is presented in Chart 21 in the appendices. Converting these rates to numbers, 2013/14 equates to 55 people out of the 1,300 known to NHS Primary Care and 900 known to Adult Social Care. The breakdown of hours (Chart 22) shows that the majority are working a handful of hours per week – often an intentional decision to ensure other benefits are not affected. The number of young people with learning disabilities Not in Education, Employment or Training (NEET) is comparable to that of the general population – both at 6-7% of young people aged 16 to 18 years. A high proportion of young people with learning disabilities are retained in education beyond 16 years.

A higher number of adults work as unpaid volunteers, around 70-80 per year in recent years (HSCIC, 2014f), but the numbers are low compared to total known to Adult Social Care and NHS Primary Care.

Employment was important to the participants of the consultation (sections 10.1 and 10.2.6) but this is dependent on the infrastructure to facilitate volunteering, training and employment. Many people receive support from the Doncaster Vocational Training Unit and this service will continue. A reduction in Social Education Centres (SECs) and a general reduction in the Council workforce will limit direct employment by the Council alternative options needs to be developed outside the structure of the SECs. Doncaster Council has established Project Search with Next Distribution Centre. 8 young people in the last year of college have an internship with Next to learn new skills and aid their employability. Feedback from the host organisation has been positive though no formal evaluation has taken place yet.

Recommendation 7 – Work should continue to increase the number of people with learning disabilities participating in voluntary activities and paid Page | 29

employment. Evaluate initiatives such as Project Search, expanding these where possible and engaging new employers.

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8 Carers

8.1 Overall number of carers The number of carers receiving support has increased in recent years from 90 in 2008/09 to 185 in 2013/14 (HSCIC, 2014g). The majority of carers (175 / 185 carers) accessed a specific service as opposed to just seeking information (HSCIC, 2014h). The numbers are low compared to the likely number of family and friends caring for the people registered across Adult Social Care and NHS Primary Care – though some carers may prefer less formal peer networks and other forms of support.

8.2 Age of person cared for The vast majority of carers in 2013/14 supported someone of working age between 18 and 64 years (HSCIC, 2014g). Only a handful of known carers support older people aged 65yrs and above. This may be linked to premature mortality in people with learning disabilities or because people with learning disabilities are more likely to enter residential or nursing care in older age.

8.3 Age of the carer The National Adult Social Care Intelligence Service cannot quote the age of carers specific to people with learning disabilities, but in the general terms there has been an increase in older carers aged 75yrs and above (HSCIC, 2014g)(see Chart 23 in the appendices). However this is more likely a result of caring for physical and sensory impairments, and mental health conditions such as dementia, rather than older people with learning disabilities.

8.4 Assessment of carer need All the known people caring for someone with a learning disability received an assessment/review in 2013/14 (HSCIC, 2014g). The vast majority (165 / 185 carer) were carried out jointly alongside the needs of the dependent, which is recognised as good practice.

8.5 Carer health in the 2011 Census Carers often experience poorer health themselves. In Doncaster, the 2011 Census showed that 14% of people providing intensive unpaid care (above 50hrs per week) reported bad or very bad health (ONS, 2014). This compares with just 7% of people who do not provide unpaid care.

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Recommendation 8 – Establish a carer’s forum and raise awareness of the formal and informal services available to people caring for someone with a learning disability.

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9 Expenditure on services

9.1 NHS Programme spend In Doncaster NHS spend per head of population has decreased year on year - in 2011/12 (£55 per head) it was nearly half the level in 2009/10 (£106 per head)(HSCIC, 2014i). However spend in Doncaster is still above the rate for Manufacturing Towns and England as a whole, which are both around £30 to £40 per head. These figures are presented in Chart 24 in the appendices.

9.2 Adult Social Care spend Expenditure on adults with learning disabilities aged under 65 years has increased markedly over the last eight years, exceeding £29m in 2012/13 (HSCIC, 2014j). In the last couple of years, spend per head of population has been similar to England at approximately £1,200 per 10,000 people. These figures and trends are presented in Chart 25 in the appendices.

The National Adult Social Care Intelligence Service provides a breakdown of these figures. Spend per person per week is lower in Doncaster than England across all types or care – nursing and residential care, home care, day care and direct payments. These figures are presented in Chart 26 in the appendices. However this may be due to the lower cost of supplying these services relative to other areas (e.g. staffing costs) rather than a comparable difference in the amount spent.

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10 Service User and Stakeholder Voice

10.1 The voice of service users A total of Ninety seven people with learning disabilities such as Mild/moderate learning disabilities, Downs syndrome, Cornelia De Lange Syndrome, Autism, Asperger’s and Prader-Willi took part in the consultation. Consultation with service users took two forms:  

Focus group with members of the Choice for All Doncaster (CHAD) group; Questionnaires sent out via email to support groups for people with learning disabilities.

All service users were asked the same set out questions which focussed on five key questions: 1. 2. 3. 4. 5.

What does ‘healthy’ mean to you? What do you think helps people to be healthy? Who keeps you healthy? What changed for you when you left school? Tell us which groups you go to.

The key themes to come out of consultation with service users are summarised below: Perception of health

Support/services

Transition

People were able to identify healthy eating/5 a day, weight control, physical activity and personal cleanliness/appearance as elements of ‘being healthy.’ A positive attitude, feeling happy, keeping busy and being independent were also linked to ‘being healthy.’ Attending health checks and other check-ups (e.g. dental, opticians) was also seen as an important part of staying healthy. A number of services and sources of support for people staying healthy were identified. These included peers, family, friends, support groups and social networks. Key people seen to help keep healthy were both support staff and health professionals, notably Doctors, Nurses, Dentists and Opticians. Having a Wellness Recovery Action Plan was also seen by some participants as aids to keeping healthy. A personal responsibility to staying healthy was also identified by a number of service users. An initial loss of routine and lack of support were identified as some of the bigger changes associated with leaving school. Some also identified that they missed the social aspects that school brought, although for others leaving Page | 34

Employment/training

Information

school was seen as more positive if they were no longer bullied or were moving onto further training or employment. Working and access to employment opportunities were seen to give a sense of independence, and allowed people to save for things such as holidays which were linked to happiness. Volunteering, training and employment opportunities were also seen as important in helping people to feel valued. Key sources of information on how to be healthy included various media sources such as TV, and reading. Access to easy read materials were viewed as important, and pictures were also identified to be useful for those that had reading difficulties.

10.2 The voice of professionals Consultation with health and social care professionals working with those with learning disabilities took the form of a workshop where activities and discussion were centred around four key areas: I. II. III. IV.

Current strengths and assets; Weaknesses or gaps; Opportunities for improvement; Current and potential risks.

Attendees were asked to note their thoughts on these areas in relation to the current local picture in Doncaster in small groups. These areas were then discussed in more detail as a wider group. Further one to one discussions were carried out with some learning disabilities professionals that were unable to attend the workshop and have been added into the themes.

Nine key themes were identified from consultation with professionals, which are summarised in the following sections.

10.2.1 Placements Professionals at the workshop were able to identify that parents appeared to find the experience of private providers positive. Progress had also been highlighted where the number of people placed in supported living has increased, which has helped to keep people local.

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A number of areas for development and current gaps were discussed. These mainly centred on the need to keep more people local. For example, it was identified that commissioners need to work more closely with providers to reduce costs to be able to respond to more complex needs locally and that although there have been marked improvements, there are still too many people placed in residential care. Learning from other Local Authority areas that have pathways in place to keep those with more challenging behaviours out of residential care and within the local area, was also identified as an area of future development.

Recommendation 9 - Continue work to increase local provision to keep more people with learning disabilities in Doncaster.

10.2.2 Continuing healthcare Changes to eligibility for funding and government reductions in spending have been identified to have caused issues and increasing pressures to continuing healthcare. This is also believed to have caused disruptions to work patterns. Continuing with joint working between DMBC, Doncaster CCG and other relevant partners was identified as an element to rectifying current issues in relation to continuing healthcare.

10.2.3 Data Data quality and data sharing were discussed as significant current barriers. The quality of currently available data means there is a poor understanding of the needs and number of people with learning disabilities in Doncaster. Issues with data sharing across organisations were discussed in length as a barrier to providing essential key support in some cases. Examples of this include needing to be able to ‘flag’ patients with learning disabilities when they are referred to hospital so that approaches can be adapted to better meet their needs e.g. by issuing easy read letters for appointments. Sharing details of patients that did not attend appointments was also thought to be important in order for these to be appropriately followed up, and it was discussed that IT systems across the sector would need to link up to ensure data can be shared.

See Recommendation 3.

Recommendation 10 – There is a need to explore options related to linking up IT systems across the sector to enable data sharing where possible to improve service provision and planning. Page | 36

10.2.4 Funding Current threats to funding and a government reduction in spending were identified as having a large impact on care. This includes losses of independent living fund and funding of specialised packages in the home, and loss of funding for some patients due to changes in classifications. Lack of clarity over who is responsible for funding when someone is placed out of area was also identified, along with increased demands on services with funding being reduced and an increase of people with challenging/complex forensic issues.

10.2.5 Transition Positive aspects to transition were discussed and identified which included the ability of residential providers to give continuity from childhood through to adult life. Family support such as increasing numbers of short breaks to support families, accessibility in the mainstream were identified and the positive effect and opportunities for employment in transition were also noted.

Current areas for development were discussed. These included the Education Health and Care (EHC) plan which was implemented in September 2014, although more information and knowledge is required for both professionals and parents in order to develop these further. An increase in educational psychologist involvement in supporting early intervention with robust outcomes monitoring was also discussed as an area for improvement, along with a lack of Autistic Spectrum Disorder specific services and support, especially for Asperger’s, at transition. The need to tie up school leavers with opportunities for training and employment, and the need to be more aspirational for young people using employment as a goal, was also highlighted as an area for development.

10.2.6 Employability Doncaster Vocational Training Unit was noted as accessible and continuously developing and improving. A further strength in this area was the strong momentum behind employment through partnerships groups and boards and more is starting to be achieved as a result of this. ‘Project Search’ is currently providing internships with local employers and feedback so far appears positive. It was however noted that this needs to be expanded and pursued with the current model being replicated with other companies to provide more opportunities. The need to increase the delivery of employment outside of Social Education Centres was also highlighted as these centres are currently reducing in numbers which will affect the number of opportunities available.

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See Recommendation 7.

10.2.7 Training Good support for professionals and parents through courses and training was identified as a current strength, along with the strong knowledge and skills of those professionals providing specialist learning disability services. Some gaps however were also discussed. These included the need to increase training provision with GPs, particularly around identifying patients with learning disabilities in referral letters, and some unavailability of training in CAMHS when it’s required. Changes in funding that could impact on the resources and training opportunities going forward was also identified as a risk.

10.2.8 Community Services That there are now many people placed in supported living was identified as a current strength in community services. Additional support and work with communities were also noted as needing attention. This included the idea that aging carers in the community are no longer able to provide the same level of support, and therefore additional support would be required. The need to ensure a clear health action plan is completed in the early stages was also noted as being beneficial to reducing the number of emergency admissions in those with learning disabilities. Community culture was discussed in relation to having a reactive or proactive approach to health and care. Work with communities and carers to take a more proactive approach to health were noted as a development.

10.2.9 Primary care A number of strengths to primary care services were discussed which included the high number of annual health checks being completed and the specialist training that is currently offered to GP practice staff. The continuous improvement in the links between GPs and specialist learning disability support was also noted, although there is further work to be done in this area to continue to develop.

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Appendix Chart 1 – Population pyramid for Doncaster by five year band (ONS, 2012) 85+ 80-84 75-79 70-74 65-69 60-64 55-59 50-54 45-49 40-44 35-39 30-34 25-29 20-24 15-19 10-14 5-9 0-4 10

8

6

4

2 0 2 4 6 Percentage of the population Eng & Wales Male Eng & Wales Female Doncaster Male Doncaster Female

8

10

Chart 2 -Population Projections to the year 2020 by age bands (IPC, 2014) 350,000 300,000 250,000 200,000 150,000 100,000

24,500

25,400

26,200

27,000

28,500

28,500

30,200

31,400

32,300

32,700

75+

36,800

37,000

38,100

39,500

41,000

65-74

43,800

43,800

43,900

43,700

40,600

38,900

37,100

36,300

36,200

37,100

39,100

40,600

41,500

41,700

41,500

26,400

25,400

24,100

22,900

21,900

65,400

66,100

66,400

66,900

69,200

2012

2014

2016

2018

2020

55-64

50,000

45-54 35-44 25-34 18-24 0-17

0

Page | 39

Table 1– Percentage change between 2012 and 2020 Age band

Change 2012 to 2020 +6% increase -17% decrease +6% increase -5% decrease -7% decrease +11% increase +15% increase +16% increase

0-17 18-24 25-34 35-44 45-54 55-64 65-74 75+

Chart 3 - Life expectancy gap for males and females (PHE, 2014) 84 82 80 78 76 74 72

Doncaster Male Doncaster Female

2010 - 12

2009 - 11

2008 - 10

2007 - 09

2006 - 08

2005 - 07

2004 - 06

2003 - 05

2002 - 04

2001 - 03

2000 - 02

70

England Male England Female

Chart 4 –Life expectancy for males and females by Doncaster Electoral Wards (Doncaster Data Observatory, 2012)

Page | 40

82

86

80

84 LE in years

LE in years

78 76 74 72

82 80 78

70

76

68

74

Chart 5 – Comparison of healthy life expectancy between Doncaster and other Upper Tier Manufacturing Towns (PHE, 2014)

N.E Lincs

Dudley

North Lincs

Stockton-on-Tees

Wakefield

N.E. Lincs

Dudley

North Lincs

Stockton-on-Tees

Telford and Wrekin

Wigan

Wakefield

52 Rotherham

52 Doncaster

54 Rotherham

56

54

Doncaster

56

Wigan

58.058.258.3 58 57.3

64.1 63.063.6 61.061.5 62 59.459.659.9 60 58.7 58 57.1 64

Telford and Wrekin

60

Barnsley

HLE in years

62

66

Barnsley

61.862.162.1 61.2 59.659.9

HLE in years

64

Chart 6 – Rate per 1,000 pupils with a School Action Plus or Statement level need comparing Doncaster and England (Department for Education, 2014)

Page | 41

Per 1,000 pupils

25

22

20

18

17

15

12 10

10

9 5

5

4 1

1

0 Autism

Moderate LD

Severe LD

Doncaster

Profound LD

All LD

England

Chart 7 – Patients registered for a learning disability with a Doncaster GP (HSCIC, 2013)

Learning Disability patients per 1,000

6 5 4 3 2 1 0 2007-08

2008-09

2009-10

Doncaster CCG

2010-11

2011-12

2012-13

England

Table 4 –Number and rate of patients registered for a learning disability with a Doncaster GP (combining HSCIC, 2013 and IPC, 2014)

2007-08 2008-09 2009-10 2010-11 2011-12 2012-13

Number of patients registered for Learning Disabilities 1,046 1,128 1,213 1,240 1,295 1,313

Number per 1,000 patients aged 18+ 4.3 4.7 5.0 5.1 5.3 5.4

Chart 8 – Learning disability diagnosis rate for upper tier manufacturing towns (combining HSCIC, 2013 and IPC, 2014). Page | 42

40% 32% 27%

30%

27%

26%

26%

23%

23%

22%

20%

20%

18%

10% 0%

Chart 9 – Rate of people with learning disabilities on other disease registers with NHS Primary Care (combining DMBC, 2013 and HSCIC, 2013). 120 99 75

No. per 1,000

80

72

68

52 40 12 0 CHD (>18yrs)

Diabetes (>17yrs)

Patients registered with LD

Asthma (All age) All patients

Chart 10 – Patients registered with the RDaSH Community Health Team (RDaSH, 2014) 400 Number of patients

316 300 200 100

47

132

135

2012

2013

66

0 2010

2011

2014 (to November)

Page | 43

Chart 11 – Learning disability clients aged 18 and above by Adult Social Care service type (NASCIS, 2014a)

Number of clients

800 600 400 200 0 2008/09

2009/10

2010/11

2011/12

Community-based services

2012/13

2013/14

Resitential & Nursing Care

Chart 12 – Coverage of the GP Annual Health Check (IHAL, 2014) 100

%

75 50 25 0 2009/10

2010/11

2011/12

Doncaster (% eligible)

2012/13

England (% eligible)

Chart 13 – Coverage of cancer screening for people with learning disabilities, comparing Doncaster to the England (DMBC, 2013). 80% 66% 60% 38%

40% 28%

27%

25%

26%

20% 0% Cervical smear

Breast cancer screening Doncaster

Bowel cancer screening

England

Page | 44

Chart 14 - Top causes of death for people with and without a learning disability (Glover & Ayub, 2010) 60%

40%

20%

Learning disability population

Digestive

Injury

Genito-urinary

Cancers

Congenital

Other symptoms

Nervous system

Infectious disease

Circulatory

Respiratory

0%

General population

Chart 15 – Median age at death for people with and without a learning disability (Glover & Ayub, 2010) No learning disability

80

None specific condition

65

Down's syndrome

56

Nerofibromatosis

53

Hydrocephalus / Spina bifida

38

Cerebral palsy

35

Microcephaly

10 0

10

20

30

40

50

60

70

80

90

Median age a death in years

Chart 16 – Community-based services used by learning disability clients (HSCIC, 2014b)

Page | 45

Number of service users

600

400

200

0

Day Care

Direct Payments

Professional Support

Mar-14

Mar-13

Mar-12

Mar-11

Mar-10

Mar-09

Mar-08

Mar-07

Mar-06

Home Care

Chart 17 – Clients receiving self-directed support or direct payments during the year (HSCIC, 2014c)

Learning Disabilities direct payments

400 300 200 100 0 2009/10

2010/11

2011/12

2012/13

2013/14

Chart 18 – Clients receiving self-directed support or direct payments per head of population (HSCIC, 2014c)

Budgets per 100,000

250 200 150 100 50 0 2009/10

2010/11 Doncaster

2011/12 2012/13 England

2013/14

Page | 46

% of people known to LA services

Chart 19 – Accommodation status of working age adults (18-64yrs) with a learning disability known to services at the time of their last review (HSCIC, 2014d) 100% 75% 50% 25% 0% 2008/09

2009/10

2010/11

Settled

2011/12

2012/13

Non-settled

2013/14

Unknown

180

90

Residential Care

2013/14

2012/13

2011/12

2010/11

2009/10

2008/09

2007/08

2006/07

0 2005/06

Number of residents with learning disabilities

Chart 20 – Residents supported by the Local Authority in residential care and nursing care at the 31st March each year (HSCIC, 2014e)

Nursing Care

Chart 21 – People with a learning disability known to Adult Social Care and in paid employment at least weekly (HSCIC, 2014f)

% of those in employment

8% 6% 4% 2% 0% 2008/09

2009/10

2010/11 Doncaster

2011/12

2012/13 England

2013/14

Page | 47

Chart 22 – Number of working age clients with a learning disability known to Adult Social Care, by the number of hours worked (HSCIC, 2014f)

5 5

0 to