Health and Social Care Needs Assessment for. Adults in Norfolk, Great Yarmouth and Waveney. with. Learning Disabilities, Autism or Asperger syndrome

Transcription

1 Health and Social Care Needs Assessment for Adults in Norfolk, Great Yarmouth and Waveney with Learning Disabilities, Autism or Asperger syndrome March

2 Statement This health needs assessment recognises all people with learning disabilities and their carers, not only the traditional customers of specialised learning disability health services. The NHS and partner organisations operate within the Equality Act 2010, which states that all citizens must have equal opportunities and access to services, according to need, requiring reasonable adjustments to be made for individuals, taking account their individual needs. It is clear that many mainstream services by the way they are organised can inadvertently discriminate against people with a wide range of learning issues, including those with mild learning disability and those with high functioning autism or Asperger Syndrome. 2

3 Summary The government supports and promotes the fundamental principle that everyone has the same right to treatment and services to help maintain a good quality of life. The social model of learning disability assumes that disability is generated by social barriers rather than the individual themselves. Strategic and operational policy and practice create barriers for those with learning disabilities and their carers that has resulted in institutional discrimination. There is legislation to protect vulnerable members of society including the Human Rights Act 1998, the Disability Discrimination Act and the Mental Capacity Act, 2005, the Autism Act, 2009 and the Equality Act 2010, the last of which requires reasonable adjustments to be made within services to meet the needs of vulnerable people. A series of policy documents and reports highlighting issues and actions required over the last decade culminated in Valuing People Now Reports include the Mencap report Death by Indifference, Healthcare for all 2008 and Six Lives; the provision of public services to people with learning disabilities, For those in the criminal justice system, Lord Bradley recommended a cross government approach alongside national and regional delivery plans. The agenda for personalised care is set out in Putting People First, 2007 and for those with autism in England, Fulfilling and rewarding lives, A Learning Disabilities Observatory (and website), Improving health and lives was launched nationally in 2010 to provide data, evidence and other information on learning disabilities. Local developments should be informed by a joint assessment of need through the Joint Strategic Needs Assessment process that provides a balanced and shared evidence base. Need can mean different things to different people. Representatives of local providers and commissioners, plus service users, were engaged in defining information that could be collected to inform planning for those with learning disabilities, autism or Asperger syndrome and how it should be presented. Differences in definition and data capture make it hard to estimate true prevalence of learning disabilities but it is expected to rise by around 1% per annum over the next decade, with an increasing complexity of conditions. In England, about a million people have a mild learning disability (many not formally identified by society) and a further have moderate to severe disabilities. Not only are people with learning disability more likely to suffer co morbidities such as epilepsy or congenital heart disease, but overall, rates of general, 3

4 preventable ill health are likely to be higher than average for the wider population, for example obesity, coronary heart disease, respiratory disease, hearing impairment, dementia and osteoporosis. Causes of learning disability may be genetic or occur in the pre or perinatal period. Some causes are preventable through genetic counselling and good antenatal and post natal care (including advice on diet and alcohol, smoking cessation advice and good medical management, immunisations and tests). For at least 30% of people, the cause of learning disability is unknown. There is evidence that there is a relationship between learning disabilities and inequality. People with learning disability have increased exposure to social determinants of poor health. Preschool diagnosis and supportive intervention can hugely improve the individual s capacity to develop, preventing or reducing emotional and behavioural difficulties later on. Some differences in health are avoidable where the diseases are preventable. Leading causes of death amongst people with learning disabilities are coronary heart disease (14 20%), respiratory disease (46 52%, compared to a rate for the general population of 15 17%). People with asthma and learning disabilities have been found to be more likely to smoke and over half of women with learning disabilities and asthma were obese. Communication difficulties and reduced health literacy impact upon health. People with learning disability may be exposed to, or unwittingly take health risks or behaviours. Health inequality can be exacerbated by deficiencies in access to and quality of healthcare provision. Autistic Spectrum Disorder (ASD), its causes not fully understood, includes Asperger syndrome. Approximately half of all people with autism also have a learning disability, sometimes called low functioning autism. Those without learning disability, including those with Asperger syndrome may be described as having high functioning autism. They all experience three main areas of difficulty: social communication, social interaction and social imagination. Asperger syndrome is seen primarily as a social disability rather than an illness and only a minority need specialist health or social care services. Recent estimates suggest about people with autism in England, of whom are adults. It is more common in men than women. There is an estimated economic cost of 28.2 Billion split between service costs and lost employment opportunity. Prevention of morbidity amongst those with learning disabilities includes health protection (vaccination and regular monitoring for existing conditions and weight, help with smoking cessation, sexual health advice, screening for cancers), plus optical and dental care and hearing tests. Women need gynaecological care. At least half of adults with learning disabilities suffer from dysphagia which if left unmanaged, can result in serious health complications including poor nutrition, dehydration, aspirating on food or liquid, choking, respiratory tract infections and reduced quality of life. Communication difficulty affects 90% people with learning disabilities and as they live longer, diseases of aging have more significance, eg dementia which can have a much earlier onset. 4

5 Health checks have been demonstrated as effective and there is a mechanism now in place such that these can be provided in primary care medical settings. People with learning disabilities can find it more difficult to identify and describe symptoms or to navigate the health system. Doctors and nurses often lack specialist knowledge about learning disabilities and communication skills and confidence. Diagnostic overshadowing is where physical or psychological symptoms are inappropriately attributed to the learning disability or mental health problem. NICE guidelines on best practice in care for patients with autism is expected next year, for both children and adults. In Norfolk, national estimates predict adults with learning disability in 2010, 3315 of whom were counted as having severe or moderate disabilities and 5136 with ASD. In contrast, local service data records a total of 2627 people with learning disability. Local registers for children show 1522 males and 597 females, with identified prevalence rising to peak within teenage years, as the condition becomes apparent during the child s development. Knowing the numbers within their last five years of children s services is important to inform planning for transition into adult hood. In December 2010 there were 624 children registered aged 15 and above. It is likely that people with learning disability within the criminal justice system are unrecognised, especially those with mild learning disability. National research indicates 20 30% of the offender population has some difficulty that will interfere with their ability to cope with the system, making them at risk of re offending, unlikely to benefit from conventional programmes to address offending behaviour and be targeted by other prisoners. There is a high risk of mental health problems, 88% having depression. Low IQ can have a co morbidity with personality disorder. Information has been collated on services in Norfolk, including advocacy, GP services health promotion services (dietetics, stop smoking services, services to support alcohol misuse, sexual health services, immunisation and screening programmes). Community based services such as communication, speech and language therapy services, dysphagia, epilepsy and dental care services are documented, along with general information on mental health and secondary healthcare services, dementia services and special services for people with ASD, ADHD and for people with challenging behaviour. Health services in prisons are discussed, with an outline of work to establish and offender mental health pathway. How the views of clients captured and incorporated into planning is described, and sources of information including easy read material on services, consent and on common conditions are given. Needs of carers are recognised and the link made to the Strategy of Carers in Norfolk There is a continuing need to collate and review local information and particular areas for more detailed work have been identified by planners are transition, analysis by age and types of need/complex needs, complex needs, challenging behaviour and multiple needs amongst those with autism, ADHD and prescribing 5

6 issues, parents with learning disabilities, people with older carers, housing needs by locality, qualitative data and views of people, take up of personal budget and the types of services people would like to see, support that carers want, liaison with the county psychologist to better understand met and unmet needs, epilepsy, dementia and hate crime. In conclusion, understanding the prevalence of people with learning disability and how this translates into need is complex. Across all tiers of service provision there are many cross cutting themes identified by health professionals, voluntary organisations and service users. Making reasonable adjustments is a key theme, with a shared goal of fair access to preventive, general and specialised health services across community, acute and custodial settings. 6

7 Recommendations Commissioners and service providers must ensure reasonable adjustments are made for people with learning disabilities or high functioning autism. should be aware of national information and evidence for good practice from the learning Disabilities Observatory, Improving health and lives Services need to be planned for increases of people with learning disability of around 1% per year over the next decade, with increasing complexity of conditions including co morbidities such as epilepsy or congenital heart disease, plus general preventable ill health such as obesity, coronary heart disease, respiratory disease, hearing impairment, dementia and osteoporosis. Antenatal and post natal care must include advice on immunisations and tests, diet, alcohol, smoking cessation advice, sound medical management plus genetic counselling where appropriate. It is particularly important that these services are promoted amongst lower socio-demographic groups and those with learning disability. For adults with a learning disability, routine care should include monitoring of weight, smoking status, sexual health advice, screening, optical and dental care, and hearing tests. Dysphagia, where present, must be diagnosed and managed. Gynaecological needs for women should be met. Plans must be in place to deal with the communication needs that 90% of people with learning disability have, particularly recognising that as people live longer, diseases of aging have more significance, for example dementia, that can have a much earlier onset. Link should be made with the Norfolk End of Life Strategy. Training for healthcare staff should include helping people with learning disability to identify and described symptoms, or to navigate the health system. Prevention of diagnostic overshadowing, where physical or psychological symptoms are inappropriately attributed to the learning disability or mental health problem Meeting NICE guidelines on best practice in care for patients with autism. Health services for people within the criminal justice system must be particularly sensitive to the needs of those with learning disability in recognition of national evidence that 20 30% of the offender population has a disability severe enough to prevent them coping with the system. Specific adjustments for healthcare services include capturing and 7

8 responding to client views, and clear information such as easy read material on services, consent and on common conditions. Links across to the Norfolk Carer s Strategy need to be made. There is a very wide range of issues not covered in this needs assessment, and further topics should be explored as an ongoing programme. 8

9 Contents Statement Summary Recommendations Introduction 1. Background 1.1 legislative background 1.2 national policy 1.3 local strategies 2. Aims and objectives of health needs assessment 3. Process of the review and key data sources 3.1 Process of the review 3.2 Key data and reference sources 4. Learning disability and Autism Spectrum Disorders: prevalence, causes and evidence on health issues and inequality 4.1 Prevalence 4.2 Causes 4.3 Inequality 4.4 Autistic Spectrum disorder (including Asperger syndrome) 4.5 Learning disabilities and mortality 4.6 Learning disabilities and morbidity 4.7 Effectiveness of health checks 4.8 Improving access to healthcare 4.9 Prevention: healthy weight, smoking, sexual health, immunisation, screening for cancer 4.10 Learning disabilities and social care needs 5. National and local data 5.1 The general population of Norfolk 5.2 Prevalence of learning disabilities and Autism Spectrum Disorder 5.3 Social care 5.4 Prison populations 6. Access to healthcare in Norfolk 6.1 Advocacy 6.2 GP services 9

10 6.3 Health promotion services: dietetics services, stop smoking services, services to support alcohol misusers, sexual health services, immunisation and screening programmes 6.4 Community based health services: communication, the speech and language therapy service, dysphagia, epilepsy services, dental care, 6.5 Mental health services 6.6 Secondary healthcare 6.7 Dementia services 6.8 Health services for people with autistic spectrum disorder 6.9 Health services for people with Asperger Syndrome 6.10 Health services for people with ADHD 6.11 Health services for people with challenging behaviour 6.12 Special packages of care 6.13 Health services in prisons for people with learning disability 6.14 Establishing an offender mental health pathway 7. Access to social care in Norfolk 8. Support for carers 8.1 How people with learning disabilities access social care services 8.2 Young people making the transition to adult services 8.3 Changing demand for adult services 7.4 The ethnicity of people with learning disabilities in social care services 7.5 How access to social care services ini Norfolk is changing 7.6 The views of people with learning disabilties and implications for futhre social care 7.7 Access for people with learning disabilities who are not eligible for statutory social care support 9. Conclusions and recommendations 9.1 Conclusion 9.2 Topics where further information is needed Appendices Appendix 1: examples of services provided by Voluntary organisations, NHS and Norfolk County Services Appendix 2: further contacts in needs assessment for other areas of LD services Appendix 3: Datasets for Norfolk and Waveney 3.1 population (Norfolk) with learning disability aged years and projections poplualtion (Norfolk) with learning disability aged 65 and over and projections Appendix 4: establishing needs of people in Norfolk and Waveney with Autistic spectrum disorder References 10

11 Introduction i The health and strength of a society can be measured by how well it cares for its most vulnerable members. For a variety of reasons, including the way society behaves towards them, adults with learning disabilities, especially those with severe disability and the most complex needs are some of the most vulnerable members of our society today and they have significantly worse health than others ii. For at least 20 years the Government has promoted the need to improve health services for people with learning disabilities iii, recognising that these people find it much harder than others to access assessment and treatment for general health problems (ie nothing directly to do with their disability). They have the same right as everyone else to treatment and services to help them maintain a good quality of life. Furthermore, people with learning disabilities often have health needs that are greater, or different from, the general health issues common to all and these needs are often unmet is because they go unrecognised. Social exclusion within communities is common; high unemployment, restricted living conditions, relationships and life opportunities. The social model of learning disability assumes that disability is generated by social barriers, rather than the individual themselves, that is, impairment may lead to a disability through the lack of societal efforts. Institutional discrimination is often cited as an implicit barrier and can lead to inequalities in treatment. 11

12 1 1.1 Legislative background The most fundamental legislation is the Human Rights Act (HRA), Monitoring of compliance is currently undertaken by the Commission for Equality and Human Rights. The Joint Committee on Human Rights (JCHR) concluded in its report (March 2008) that it is still necessary to point out that adults with learning disability have the same rights as everyone else because currently their rights to humanity, dignity, equality, respect and autonomy are still not being met and the experiences of people with learning disabilities mirror closely those of older people and, in so doing, fall far short of good practice. Other legislation such as the Disability Discrimination Act (DDA) (2005) and the Mental Capacity Act iv, governs public bodies and hence has a direct bearing on care for people with learning disabilities in the NHS. There can be problems in applying legislation. For example, the DDA defines a disabled person as a person with a physical or mental impairment that has a substantial and long-term adverse effect on his ability to carry out normal day-to-day activities. The Act specifies a series of criteria on the nature of the impairment, that it should have serious adverse effects long term and affect normal day to day activity. This has been criticised by the Disability Rights Commission as it can still lead to unfair and unequal outcomes for people who face disability discrimination and make it difficult for employers and others with responsibilities under the act to understand and comply with their duties because the definition can result in uncertainty and further, it offers no protection for those with short-term, but severe conditions or those with long-term conditions which do not have substantial adverse impacts on day-to-day activities. The Mental Capacity Act (MCA) (2005) was fully implemented in October It introduced a new criminal offence of ill treatment or neglect of a person lacking capacity and it enables people to create lasting powers of attorney. It put into statute the principle that everything must be done in the best interests of the patient. The Act states that a person must be assumed to have capacity to make a decision regarding his or her care or treatment unless proved otherwise. The aim is to protect people with learning disabilities and other conditions associated with cognitive impairment, by providing guidelines for carers and professionals about who can take decisions in which situations. The Act requires all practicable steps to present information in a way that is appropriate to the person s circumstances. The Carers (Recognition and Services) Act 1995 gives people who provide substantial care on a regular basis the right to request an assessment of their needs from social services. 12

13 The Special Educational Needs and Disability Act sets out the responsibilities of schools and local authorities in the context of pupils with special educational needs. The Autism Act 2009 v, expressed commitment to improve the lives of people with autism and their families and it has been backed by a range of actions across government to boost the profile of autism across public services. The Equality Act 2010 replaced most of the Disability discrimination Act and aims to protect disabled people and their carers, providing legal rights. 13

14 1.2 National policy A Government White Paper, Valuing People (2001) sought to improve care for people with learning disability through a range of objectives guided by four key principles: rights, independence, choice and inclusion. Other publications including Building on the Best (2003), the National Service Framework for Children, (2004), and Our Health Our Care Our Say (Department of Health 2006) embraced the issues, including for example that people with learning disability needed to be identified and that there should be regular health checks. However a series of major reports over the last few years has raised awareness that people with learning disabilities remained effectively invisible to mainstream NHS services. These include Emerson s first national survey of people with learning disability (2005), the Disability Rights Commission Closing the Gap (2006), the Mencap report, Death by Indifference (2007), Healthcare for All, independent Inquiry into access to healthcare for people with learning disabilities 2008 (Sir Jonathan Michael, 2008) and the government response to this, Valuing People Now (DH 2008). That problems persisted is also documented in audits published by the Healthcare Commission (2007 and 2009) and a joint commissioning review from the Healthcare Commission and the Commission for Social Care Inspection and Mental Health Act Commission (2009) also saw an Ombudsman s report: Six Lives: the provision of public services to people with learning disabilities (Parliamentary and Health Service Ombudsman and Local Government Ombudsman, 2009). A report by Mansell (2007) raised issues relating to care for people with seriously challenging behaviour, that there were gaps in care planning and monitoring such that there was lack of resources, huge burdens on family carers and hence high risks of crises. Continuing problems included breakdown of community placements, increasing use of out of area placements and poor quality institutional solutions. As Sir Jonathan Michael s report had stated, that people with learning disabilities continue to have higher levels of unmet need and receive less effective treatment, contravenes the Disability Discrimination Act and Mental Capacity Act which set out a clear legal framework for the delivery of equal treatment vi. Institutional discrimination remained prevalent in healthcare. The Bradley Report: Lord Bradley s review of people with mental health problems or learning disabilities in the criminal justice system (2009) vii recognised issues for people with learning disabilities in prison. The government s response supported its recommendations for a cross government approach alongside national and regional delivery plans. 14

15 Current policy, actions and future developments Valuing People Now: A new 3-year strategy for people with learning disabilities (DH, January 2009) viii was launched with around 100 national, regional and local actions to be achieved by 2012 within the following areas: Inclusion to include people with complex needs, people with Autistic Spectrum Disorder, offenders and BME groups with local partnership boards ensuring a comprehensive approach. Personalisation the transformation agenda for person-centred care set out in Putting People First ix to be applied to people with learning disabilities, with local partnership boards reviewing their personcentred planning strategies in light of guidance and ensuring that local approaches to personalised care, such as self-directed support and direct payments are robust Having a life the health of people with learning disabilities is a key priority and the strategy sets out a programme of action to meet the10 key recommendations of Healthcare for All. It reinforces the responsibility of the NHS to include people with learning disabilities in mainstream health services and to provide high quality specialist support The World Class Commissioning agenda, the National Performance Framework and the annual operating plan of the NHS all embedded this strategy, to be quality monitored by the Care Quality Commission over the next five years ( ) in accordance with their strategic plan. With particular reference to services for adults with autistic spectrum conditions (ASC), a good practice guide for primary care trusts and local authority commissioners was published in April 2009 followed by a National Strategy in March 2010 x and statutory guidance in December xi, designed to improve lives of adults with autism experience, starting from correct, early diagnosis and then services, mainstream as far as possible, with more support for families and carers. There is acknowledgement that successful outcome of the strategy would not occur without service transformation and changing attitudes across society and at least twenty five other policy documents are named that are instrumental in or support this process, particularly Valuing People Now for the 50% of people with ASD (autistic spectrum disorders) who also have learning disabilities. The Guidance expected imminently aims to bring into focus the 50% of sufferers without learning disabilities and for health purposes there is a strong emphasis on improving information and training within services and increasing accessibility. Improving health services for adults with learning disability begins with medical practices keeping registers of them, monitored through the Quality Outcomes Framework (QOF), in recognition of the fact that lack of information about people with learning disabilities is a major obstacle to delivery and evaluation of health services for this group. However, current policy is focussed only on people with severe disabilities including those receiving social care support, rather than a much wider group including those with mild to moderate disabilities or those that don t receive social support. It is argued 15

16 in the Michael Report that people at the milder end of the spectrum of learning disability prefer not to be identified as having a learning disability. Medical practices have other registers including those with coronary heart disease or diabetes, to underpin long term monitoring and support that can be given systematically to patients identified with these conditions. The introduction of the annual health check for a person with a learning disability on a register heralds a systematic approach to supporting these people and ensuring they not only get onto these other registers if they need to, to receive the right care, but that extra care can be taken to ensure they are not excluded from population based health promotion services including screening tests vaccination programmes or that they don t miss out on other health promotion information or services that might be useful to them, such as weight management or sexual health services. In the secondary care setting, learning disability facilitators have been established with a role to assist staff in recognising and understanding these patients if they or their carer arrives at A&E departments or are admitted, and to provide training for staff. A further strategic element nationally has been the launch in 2010 of a new public health observatory named Improving Health and Lives Learning Disabilities Observatory. where information can be both collated and shared, with material in easy access formats more suited to people who have difficulties with reading. A report on this website summarises aspects of health where people with learning disabilities fare poorly and causes of these inequalities and emphasises that reducing these health inequalities still requires action in multiple areas, primarily reducing the chances that people with learning disabilities will be exposed to things that we know damages health (e.g., poverty, poor housing conditions, unemployment, discrimination), areas not covered by this needs assessment increasing the uptake of annual health checks, and for women, cervical and breast screening among people with learning disabilities; helping unpaid and paid carers to better understand the health needs of people with learning disabilities; making reasonable adjustments to health services in light of the specific needs of people with learning disabilities (e.g., through providing more accessible information and longer appointment times); monitoring progress towards the elimination of avoidable health inequalities faced by people with learning disabilities. A report on progress implementing Valuing People Now was published in December 2010 xii and The Operating Framework for the NHS in England, 2011/12 xiii dedicates paragraphs 4.44 and 4.45 to Learning disabilities, under areas for improvement as follows: The NHS should ensure momentum is maintained in improving care and outcomes for people with learning disabilities, in the light of the Six 16

17 Lives Progress Report xiv, the Government s response to the 2009 report of the Parliamentary and Health Service Ombudsman and Local Government Ombudsman on health for this group. Using information gathered locally in partnership with people with learning disabilities and their families, PCTs should ensure they are taking action to improve healthcare and health outcomes. Findings presented to the Ombudsman suggest particular emphasis should be given to ensuring staff are trained to make reasonable adjustments, communicate effectively and follow the Mental Capacity Act (2005) Code of Practice xv in all their interactions with patients with learning disabilities to ensure full compliance with the law in respect of capacity, consent and best interest decision making. Annual health checks for people with learning disabilities remain an important means of ensuring improved access to health services. Under Autism it says (paragraph 4.18) NHS commissioners and trusts will be required by new guidance, to be issued in December 2010, to take action to assess the needs of people with autism in their areas, then plan and commission services as appropriate to address those needs. This guidance, which is intended to give effect to the Adult Autism Strategy Fulfilling and rewarding lives: the strategy for adults with autism in England will be issued under Section 2 of the Autism Act

18 1.3 Local strategies The Joint Strategic Needs Assessment (JSNA) is a duty that came into effect in April 2008 and describes a process of gathering intelligence (information) to help Local Authorities and Primary Care Trusts to commission services effectively and efficiently. The aim is to identify the bigger picture in terms of the health and well-being and inequalities of the whole community.. In Norfolk, information is available via a website called Norfolk Insight The Joint Commissioning Strategy: Services for people with Learning Disabilities Norfolk County Council, NHS Norfolk and NHS Great Yarmouth and Waveney was published in September 2010, and is based on a needs assessment linked to data within the JSNA Better Health and Wellbeing for people with a learning disability and their families. The vision for achieving the best, together in the east of England. NHS East of England sets out a regional vision as a consultation that captures Valuing People Now in the Regional context. Importantly It is it is intended to influence developments over the coming ten years. The strategy for carers Norfolk County Council, NHS Norfolk and NHS Great Yarmouth and Waveney was published in November 2010 Needs and health needs This current needs assessment should be read in conjunction with the local strategy xvi as it is designed to complement the data that supports it. Both pieces of work have been used to identify areas where further needs assessment work should be focussed. Findings must be used in conjunction with views of users and other stakeholders to inform the development of future strategic commissioning intentions for the local authority and the PCT. Need can be defined as the capacity to benefit from an intervention xvii. Needs can further be broken down into what Bradshaw describes as normative, felt, expressed and comparative. A normative need is distinguished by professionals; a felt need reflects people s wants; expressed needs are essentially how people use services; and comparative needs refer to the way in which the needs arising in one location may be similar for people with similar socio-demographic characteristics living in another location. Assessed needs are described within the framework of the NHS and Community Care Act (1990) and which are the minimum necessary to maintain a standard of independence and quality of life that would deteriorate without support. Health needs for an individual are defined by a continuing care assessment and social care needs by a social care assessment. Health services are free at the point of delivery whereas social care services are means tested. 18

19 2 Aim and objectives of health needs assessment Aim To assess, using published information, current and future health needs of adults in Norfolk with learning disabilities, autism and Asperger syndrome, excluding comprehensive work in relation to the criminal justice system. Objectives To consult with commissioners to obtain their current perceptions of local needs To provide demographic data and epidemiological information on the prevalence of learning disabilities, autism and Asperger syndrome in adults To examine the size and severity of health issues and inequalities within the area to provide an assessment of needs To examine current service utilisation and identify unmet needs To make recommendations for further work to provide insight into issues affecting outcomes for adults with learning disabilities, autism and Asperger syndrome It is not intended, for the purposes of this report, to explore or provide further analysis on views of users, carers and others involved in care, other than to reference what is already known and work taking place currently in Norfolk. The learning disabilities team works closely with users and carers and the findings from their surveys and workshops should be posted on the JSNA website, Norfolk Insight, so that this work can complement it. This needs assessment does not cover in great detail health needs in the criminal justice system but it is planned to explore this further in a sequel report. Likewise, separate analysis of local data for ethnicity has not been possible (due to its scarcity) and hence a different sort of study will be required to investigate whether there is equality of access to assessment and healthcare for people from different ethnic backgrounds when they have learning disabilities. 19

20 3 3.1 Process of the review A group of stakeholders was identified mainly among commissioning/public health staff in order to agree and construct a report draft, containing key information, using a project management approach co ordinated by the facilitator of the Norfolk Joint Strategic Needs Assessment. Initially, a service user had been identified to attend the group, but it was decided that owing to the technical nature of this stage, involvement of users and carers would be introduced at a later stage. It was agreed at the first meeting that the report would have a primary focus on Norfolk, with additional data, where available from Waveney, being added. NHS Norfolk Public health Epidemiologist commissioner lead LD Pooled fund lead NHS Great Yarmouth and Waveney commissioner public health epidemiologist/ analyst Norfolk county council Commission ers Information services JSNA group Terms of reference Project plan Roles and responsibilities Timescales Action plan Liason with other stakeholders eg LD specialist providers, related services managers Draft report: December 2010 Further engagement with and review by users and carers 20

21 3.2 Key data and reference sources Improving Health and Lives Learning Disabilities Observatory Demographics, epidemiology Nationally published ONS population and deprivation data Databases of POPPI and PANSI Local information already in County Strategy The nature of learning disabilities and common diseases and disorders associated with it Foresight report xviii and development of mental health and wellbeing Health Inequalities and People with Learning Disabilities in the UK 2010, Emerson and Bains http/ Policy context and standards of care Valuing People Now: A new three- year strategy for people with learning disabilities, DH 2009 CQC 5 year strategy for Learning Disability NICE guidance Fulfilling and rewarding lives The strategy for adults with autism in England (2010), Department of Health Lord Bradley s report on people with mental health problems or learning disabilties in the Criminial Justice System, and the Government s response. Better Health and Wellbeing for people with a learning disability and their families. The vision for achieving the best, together in the east of England. NHS East of England Norfolk s Big Conversation : Norfolk County Council Local primary and secondary care service information Data supporting local strategy Choice and control Registrations by GP QOF database Secondary care, linking primary care information with HES database Local Audit of PALs enquiries and complaints of the past 12 months. Views of users and carers on healthcare Reports from National organisations, eg Autism Society Big Health Check Day Local Survey: Health, Have your say. 21

22 4 Learning disability and Autism Spectrum Disorders: Prevalence, causes, evidence on health issues and inequality 4.1 prevalence Definitions Although there is no universal definition, a learning disability can be defined within a social context as the presence of a significantly reduced ability to understand new or complex information and learn new skills (impaired intelligence), with a reduced ability to cope independently (impaired social functioning), which started before adulthood and has a lasting effect on development. xix Hence, there is a broad scope, covering a broad range of disabilities including low IQ (intelligence quotient), and or low assessment of social functioning or communication skills. There may be in addition a physical sensory impairment. Importantly learning disability includes adults with autism plus a learning disability. The definition is not synonymous with learning difficulty, which is the term used in education legislation and it should be noted that people who suffer from Aspergers may have high intellectual functioning. Within the clinical context, sub-classifications of mild, moderate, severe and profound learning disability are used. Prevalence Estimates of the prevalence of learning disability are hampered by differences in definition, lack of consistency over time and the wide spectrum of disorders. If only data on those in contact with services are used then this limits the number of people included. Delay in diagnosis skews case finding so that prevalence appears higher in year olds than in young children; case ascertainment is more complete with increasing age, as milder degrees of impairment are more likely to be identified later. Those with severe impairment or with other significant disabilities or co-existing conditions are more likely to use services and so be registered as a service contact, but many co-existing conditions remain unrecognised or diagnosed. Data accuracy and completeness depends on the adequacy of local inter-agency working and the development of local information systems. 22

23 Mencap s estimates include 1.5 million children and adults with a learning disability in the UK, rising to 6 million people if parents, siblings, carers and supporters are included. ( Prevalence in the general population is expected to rise by around 1% per annum for the next 10 years; over 10% by It is also expected that there will be more complexity of disabilities, attributable to improvements in maternal and neonatal care and improvements in general health care for adults which lead to increased life expectancy. Incidence of severe learning disability is relatively evenly spread across the sociodemographic spectrum. The following estimates have been quoted by World Class Commissioning xx people in England have moderate/severe learning disability people with mild learning disability. A person with a learning disability is fifty eight times more likely to die prematurely 26% of people with a learning disability are admitted to hospital each year. Amongst people with learning disability are higher rates of obesity, coronary heart disease, respiratory disease, hearing impairment, dementia, osteoporosis and epilepsy than seen across the population as a whole. The Care Quality Commission Strategic Plan assumes 1 million people with learning disabilities of whom are adults, and that only a quarter of these are currently known to services, probably those with the greatest disability; most with moderate or mild disabilities have no access to social care or specialised healthcare support. It recognises reasons for increasing numbers to include not only survival of those with complex disabilities and reduced mortality among older people with learning disability but also more young adults from ethnic communities, for example South Asia. Work carried out through the University of Lancaster has produced incidence rates of learning disability among English children using pupil records in the annual Schools Census data on LD prevalence among current schoolchildren aged 4 15 as follows: Learning disability incidence/1 000 children: Profound/multiple 1.14 Severe 4.63 Moderate 35.8 Total Causes Causes of learning disability include genetically inherited features at chromosomal level, eg Down s syndrome (affected by maternal age), sex chromosomal disorders and other non specific configurations. Learning 23

24 disability may also result from a chromosomal disorder that results in secondary neurological damage, for example the metabolic disorder, Phynylketonuria (PKU) There are a number of secondary causes of learning disability that can occur at different times during development. Antenatally, iodine deficiency, neural tube defects, Rhesus incompatibility, infections or drugs can all have an effect. Perinatally, trauma, hypoxia or hypoglycaemia may cause learning disabilities and postnatally, accidents, infections (eg meningitis), chemical agents (eg lead) or nutritional factors are potential causes. It follows that primary prevention includes genetic counselling, antenatal care (including diet, smoking and alcohol advice, folic acid, Rhesus immunisation, disease control for the mother, eg diabetes, medications). Population measures include immunisation programmes such as the MMR vaccination and environmental policy, for example removing lead from toys, petrol and protective measures against accidental or non accidental head injuries. xxi Secondary prevention includes antenatal screening for Downs and other chromosomal disorders and postnatal testing for conditions such as Phenylketonuria (PKU) or hypothyroidism (Guthrie test). For a person with learning disability that has not been prevented, tertiary prevention of general disease includes appropriate provision of primary care including dentistry and any necessary medications, occupational therapy as required to maximise mobility and skills, speech and language therapy and adequate accommodation and opportunities to lead a fulfilling life. 4.3 Inequality Two key recent reports, the Foresight Project on Mental Capital and Wellbeing (2008) commissioned by the previous government to underpin policy development and an updated evidence review on learning disability, published in September 2010, Health in equalities and people with learning disabilities in the UK, 2010 by Professor Eric Emerson and Susannah Baines are described in more detail below. Emerson and Baines paper featured on the launch in Autumn 2010 of a website dedicated to learning difficulty Improving Health and Lives: learning disabilities observatory. http// The Foresight Project on Mental Capital and Wellbeing ( reported to the Government on a number of areas of mental capital and wellbeing after undertaking evidence reviews. On Learning Disability it identified that many common learning difficulties have elements where problems are inherited such as measurable reduced efficiency of the brain s ability to process information, whereas other aspects of its functioning are quite normal. Superimposed on this biological origin, environments and genes interact to affect development. The report 24

25 highlighted the increased risk that children with learning difficulties suffer from mental ill health, social exclusion, unemployment and criminal behaviour. Overall learning difficulties were estimated to affect up to 10% of children, and that children affected with learning difficulties such as Dyslexia, Attention Deficit Hyperactivity Disorder (ADHD) and Specific Language Impairment (SLI) can show more than one disorder, for example between 10 50% of children with SLI may also have developmental dyslexia. These children are at the low end of ability for reading, mathematics, distractibility or language and the basis is genetic. Children with less common genetic learning difficulties eg the autism spectrum disorders can have similar problems. These people may not have clinical difficulties but difficulties with social cognition (eg a less severely impaired ability to read the feelings and intentions of others) hence may still experience severe effects on their mental capital, for example some children excluded from school for apparently wilful disruptive behaviour exhibit similar behaviours to children with disorders of social cognition. As current and future technology develops for these children to be identified earlier, even in infancy, there will be increased potential to ensure environmental interventions to lessen the difficulty; simple examples include a cochlear implant for a deaf infant, improved caretaking behaviours, sensory interventions, educational interventions and learning environments. Interventions that improve early capability can make later learning more efficient, increase the complexity of what can be learned, and hence enhance mental capital. Conversely, difficulties that affect learning can be negative, for example adverse early social experiences, typically within dysfunctional and socially disadvantaged environments (eg antisocial behaviour and conduct disorders). Interventions that improve anti social behaviour disorders will benefit a number of other learning difficulties for example interventions aimed at improving the executive functions of strategic control over one s cognitive and emotional processes. Later onset disorders such as depression and eating disorders may also impair learning and impact negatively on mental capital. xxii Emerson (2010) using the UK Millennium Cohort Study and the Longitudinal Study of Australian Children investigated whether the prevalence of emotional and behavioural problems in 2 3 year old children with developmental delay was higher than that for children developing at an expected rate. Nearly sixteen thousand children were included in the study and data were analysed taking account of social class. The study concluded that there was indeed a strong relationship; 36% of those with developmental delay compared to 10% of children with normal development in the UK and 24% compared to 10% of children with normal development in Australia had emotional and behavioural difficulties. Further, it was found that the odds of having emotional and behavioural difficulties decreased with increasing cognitive performance. Health inequalities and people with learning disabilities in the UK 2010 (Emerson and Baines) is an updated evidence review on health inequalities and people with learning disability. It makes it clear that people with learning disabilities have poorer health than their non disabled peers, with some 25

26 differences being avoidable. Inequalities start early in life, often exacerbated by barriers to access timely appropriate and effective healthcare. The review is designed to assist healthcare providers in understanding how they can help to ensure these unacceptable barriers are removed. Although people with learning disabilities have a shorter life expectancy and increased risk of an early death than the general population, life expectancy is increasing, especially for those with Down s Syndrome. All cause mortality rates among people with moderate to severe learning disabilities are three times higher than the general population, especially young adults, women and people with Down s Syndrome. Overall, the incidence of deaths from cancer in the UK among people with learning disabilities is lower than the general population but the incidence and pattern of cancer is rapidly changing due in part to increased longevity. Children with Down s syndrome are at high risk of leukaemia. There is a high prevalence of helicobacter pylori, a class 1 carcinogen linked to stomach cancer, gastric ulcer and lymphoma. Leading causes of death amongst people with learning disabilities are coronary heart disease, (14 20% with rates expected to increase due to increased longevity and lifestyle changes associated with community living) and respiratory disease (46 52%, much higher than that for the general population (15 17%). People with asthma and learning disabilities were likely to smoke and over half of women with learning disabilities and asthma were obese. Almost half of all people with Down s syndrome have congenital heart defects. The prevalence of psychiatric disorders is 36% among children with learning disabilities, compared to 8% among children without learning disabilities; children with learning disabilities accounted for 14% of all British children with a diagnosable psychiatric disorder. Those with autistic spectrum disorder, ADHD/hyperkinesis and conduct disorders have an increased prevalence of psychiatric disorder. Challenging behaviours and schizophrenia are also prevalent. Key issues relating to a number of other health areas are described. In summary, there are significant health issues amongst people with learning disabilities notably coronary heart disease, respiratory disease, mental ill health and challenging behaviour, dementia, epilepsy, sensory impairments, physical impairments, oral health, dysphagia, diabetes, gastro oesophageal reflux disease (GORD), constipation, ospeoporosis, endocrine disorders, injuries, accidents and falls. Five broad classes of determinants of health inequality are listed by Emerson Increased exposure to social determinants of poor health Increased risk of genetic and biological causes Communication difficulties and reduced health literacy Personal health risks and behaviours Deficiencies in access to and the quality of healthcare provision. 26