Learning disabilities (health and wellbeing needs in South Tyneside)

National Policy

"Valuing People" and the more recent "Valuing People Now" set out how children and adults with learning disabilities and their families should be enabled to live full and independent lives as part of their local communities.

"Valuing People Now" set out the following national priorities:

• Personalisation - so that people have a real choice and control over their lives and services;
• What people do during the day (and evenings and weekends) - helping people to be properly included in their communities, with a particular focus on paid work;
• Better health - ensuring that the NHS provides full and equal access to good quality healthcare;
• Access to housing - housing that people want and need with a particular emphasis on home ownership and tenancies;
• Making sure that change happens and the policy is delivered - including making partnership boards more effective.

Key national policies and legislation:

• Health, Our Care, Our Say A new direction for community services. Department of Health 2006
• Death by Indifference and Six Lives reports, 2007
• Mental Capacity Act 2005, Code of Practice, 2007
• Services for People with Learning Disabilities and Challenging Behaviour or Mental Health
• Needs; Mansell Report revised, 2007
• Putting People First - A shared vision and commitment to the transformation of Adult Social Care, 2007
• Care Standards Act 2000, Regulation 2010
• Caring for our future: reforming care and support, 2012
• Transforming care: a national response to Winterbourne View hospital; 2012
• Children and Families Act, SEND Reforms
• Health care for all
• Care Act, 2014
• Building the Right Support, 2015

Following the publication of the Mencap report "Death by Indifference" on the deaths of six people with Learning Disabilities in social and health care settings, there has been one independent inquiry and one major investigation carried out jointly by the Local Government Ombudsman and the Parliamentary and Health Service.

Personalisation outlined in "Putting People First (2010)" has changed the way services are commissioned and delivered. It emphasises independence, social inclusion, rights, employment, choice and control. As part of this, person-centred planning and self-directed support have become mainstream. Personal budgets are offered to everyone eligible for publicly funded social care support other than in circumstances where people require emergency access to provision.

Since the investigation into the abuse at Winterbourne View and other similar hospitals, there has been a cross-government commitment to transform care and support for people with a learning disability and / or autism with challenging behaviour and / or mental health conditions. In October 2015 "Building the Right Support" was published which reinforces the values in "Transforming Care" and sets out the national ambition and the financial framework to support the closure of inpatient settings and shift investment into community based services, early intervention, and high quality personalised support.

The national plan is aimed at improving services and support for young people or adults with a learning disability and / or autism who:

• Have a mental health condition such as severe anxiety, depression, or a psychotic illness, and those people with personality disorders, which may result in them displaying behaviour that challenges
• Display self-injurious or aggressive behaviour (not related to severe mental ill health), some of whom will have a specific neuro-developmental syndrome where there may be an increased likelihood of developing behaviour that challenges
• Display risky behaviours which may put themselves or others at risk and which could lead to contact with the criminal justice system (this could include things like fire-setting, abusive or aggressive or sexually inappropriate behaviour)
• Often have lower level support needs and who may not traditionally be known to health and social care services, from disadvantaged backgrounds (e.g. social disadvantage, substance abuse, troubled family backgrounds) who display behaviour that challenges, including behaviours which may lead to contact with the criminal justice system

The different kinds of shift in service response required to better meet these different needs are set out in more detail in a national service model.

"Green Light for Mental Health (2013)" is a nationally recognised guide to auditing and improving local mental health services so they are effective in supporting people with learning disabilities.

The Autism Act 2009 indirectly introduces a number of provisions that are also relevant to clients with Learning Disabilities. It stresses the importance of medical diagnosis as triggers for assessment (and re-assessment if necessary) of needs. It establishes the need for developing effective methods of diagnosis for the condition in relation to the provision of services and it requires that public services should be able to identify adults with autism regardless of the severity of the conditions, and provide appropriate services for each individual.

 Health of people with a Learning Disability

Compared to the rest of the population, people with Learning Disabilities have:

• Lower life expectancy - people with Learning Disabilities have an increased risk of premature death compared to the general population. There is also a strong correlation between severity of Learning Disabilities and life expectancy (median life expectancies of 74.0, 67.6 and 58.6 for people with mild Learning Disabilities, moderate and severe Learning Disabilities). People with Down's syndrome have a shorter life expectancy than people with Learning Disabilities generally, though life expectancy in this group is increasing.
• Different causes of death - the main cause of death amongst people with a Learning Disability is respiratory disease (accounting for approximately half of all deaths and related to pneumonia and aspiration pneumonia), followed by cardiovascular disease (related to congenital heart disease rather than ischemia). This compares to cancer, heart disease and cerebrovascular disease being the leading causes of death in the general population. People with a Learning Disability are more likely to die from a preventable cause than the general population.
• Higher levels of unrecognised and unmet physical and mental health needs -People with are less likely to receive regular health checks than the general population. A recent study in Wales undertook health screening for 181 adults with Learning Disabilities. Over half the sample had health issues newly identified in the health checks, and 9% had health issues newly identified that were deemed to be serious, including breast cancer, suspected dementia, asthma, post-menstrual bleeding, diabetes, hypothyroidism, high blood pressure and haematuria.
• Barriers to accessing health services - people with Learning Disabilities often experience barriers in accessing health services, which will impact on medical treatment and management. Barriers can include problems with communication, inadequate facilities, rigid procedures, a lack of appropriate interpersonal skills among mainstream health professionals and a lack of accessible information. Uptake of screening amongst people with Learning Disabilities is lower than the general population (in South Tyneside proportion of the eligible population with Learning Disabilities that took up screening for the different cancers was as follows cervical - 7.32%, breast- 16.83% and bowel 23.23%) and people with Learning Disabilities are less likely to be immunized against tetanus, poliomyelitis and influenza than the general population.
• Different lifestyle issues - restrictions and a lack of opportunities to gain appropriate knowledge due to a lack of accessible health promotion services and materials may mean that adults with Learning Disabilities have limited understanding about health risks and consequently are unable to determine own healthy lifestyle choices. In general adults with Learning Disabilities;
  • have higher levels of obesity than the general population
  • are less likely to participate in the recommended levels of physical activity than the general population
  • are less likely to eat a healthy diet with an insufficient intake of fruit and vegetables than the general population

• Debate exists regarding the prevalence rates of alcohol 'use' and 'misuse' and with regards to illicit drug misuse amongst those with learning disabilities. Difficulties in establishing prevalence rates arise from the definition of 'learning disabilities', the methodology employed, levels of learning disability, and whether people are known to learning disability services or not. Generally evidence suggests lower prevalence rates in those with learning disabilities however the difference in prevalence decreases when looking at those with milder learning disabilities against the general population, and evidence does suggest a degree of underestimation and under identification - of both learning disability and substance use and misuse. Most of this unidentified learning disability population are hypothesised to be those with borderline to mild learning disabilities, living independently in the community, a sub-group of people who may be at greater risk of developing a substance related disorders.
• Adults with Learning Disabilities are more likely to experience epilepsy, gastro-oesophageal reflux disorder, sensory impairments, osteoporosis, schizophrenia, dementia, dysphagia, dental disease, musculoskeletal problems, accidents and nutritional problems than the general population. However, as the life expectancy of people with Learning Disabilities increases, the same age-related illnesses will also be experienced. For example the incidence of cancer amongst people with a Learning Disability is rising due to an increase in longevity.
• In addition, people with Learning Disabilities are more likely to be admitted to hospital as an emergency case, compared to those with no Learning Disability: - 50% of all admissions for those with Learning Disabilities are emergencies, compared to 31% of admissions in the general population in 2013 / 14. It is likely that this difference is due to problems in accessing care and lack of advance planning when people are transferred out of area.

Social issues for people with Learning Disabilities

People with Learning Disabilities do not just face challenges with healthcare. Many live in poverty and are unable to secure employment. National research suggests only 6.7% of people with a Learning Disabilities are in either part-time or full-time employment.

National research has shown many local authorities believe the type of housing people with Learning Disabilities and autism are in does not meet their needs.

National research also shows that people with Learning Disabilities are at increased risk of becoming victims of violence and abuse.

• The estimated proportion of people in prison who have Learning Disabilities or learning difficulties that interfere with their ability to cope with the criminal justice system is around 20-30%. Many are unidentified.
• Many people with Learning Disabilities have little or no contact with friends. National research study found that 31% of adults with a Learning Disability having no contact with friends, compared to 3% of adults without a Learning Disability.
• Six out of 10 women with Learning Disabilities who become a parent have their children taken in to care. Numbers of parents are small in each local authority however, they are likely to have complex and on-going support needs.
• Many people with Learning Disabilities are unable to travel independently and rely heavily on support to use public transport or the provision of adapted transport, often with a passenger assistant. Other issues identified for people with Learning Disabilities include employment and educational opportunities, hate crime, benefits changes as well as housing and support needs.
• Some people with Learning Disabilities display behaviour that challenges. 'Behaviour that challenges' is not a diagnosis and does not in itself imply any understanding as to the causes of the behaviour. The behaviour may be a way for someone to let people know what they want or how they feel, or to try and control what is going on around them, or be a response to physical or mental distress.
• A variety of factors are likely to contribute towards the development and escalation of behaviour that challenges, these include (but are not limited to): biological and genetic factors, physical ill-health, impaired communication difficulties, mental ill-health, the impact of poverty and social disadvantage, quality of support and exposure to adversities. Some care and support environments may increase the likelihood of behaviour that challenges, including those with limited opportunities for social interaction and meaningful occupation, lack of choice and sensory input or excessive noise, as well as environments where physical health needs and pain go unrecognised or are not managed.
• Behaviour that challenges can often result from the interaction between personal and environmental factors, and can include self-injury or physical aggression, severe agitation and extreme withdrawal, as well as behaviours that can result in contact with the criminal justice system - in some cases leading to someone being arrested, charged and convicted of an offence.
• Some people may have a long and persistent history of behaviour that challenges, perhaps starting in childhood. In others, it may be highly episodic - arising only under specific circumstances of stress or when the individual has a physical or mental health condition. In others still, it can be traced to a specific life event, such as bereavement. This means that even if someone does not display behaviour that challenges today, they may do so in the future.

South Tyneside has a local learning disabilities strategy " Learning Disabilities Transformation plan Working 2014 - 19". The Learning Disabilities Transformation Group supports the strategy and monitors the action plan. The group also has responsibility to make sure that all partners are aware of the plan. This strategy includes people with a Learning Disability who have low or moderate social care needs and may not be eligible for specialist social care and health support. The five main priority areas which were agreed on after consulting with stakeholders include:

1. people have access to affordable housing options and are supported to live in ordinary housing;
2. people have access to health services which lead to improved health outcomes;
3. people are supported to be part of their community, have friends and relationships, and access to work, leisure and education opportunities;
4. family carers are supported to care for their relatives and have access to a range of services to enable them to have a break from their caring role; 
5. people have access to a clear community infer structure to support people in a crisis.

Within the strategy, commissioned services will promote independence, health and wellbeing and where possible prevent, delay or minimise a persons need for formal care and support by providing greater access to universal services and through the increased use of tele care assistive technology which can make supported living and living at home with families safer.

Identified Gaps

• A recent audit of Acute Health Care highlighted that fewer than 50% of Acute Health Care generated specific health improvements.
• There is a low proportion of people with learning disabilities in paid employment.
• Need for an agreed way to flag that person has a Learning Disabilities on all the IT systems used in health and social care that follow the patient and ideally a portable care plan that can be seen by all professionals involved in the person's care.
• An agreed standard of training for healthcare professionals and their non-clinical staff to recognise people with Learning Disabilities and to make reasonable adjustments and a way of monitoring the uptake of training and that it is repeated on a regular basis. For all commissioned services to have a Learning Disabilities champion who ensures the Learning Disabilities agenda is highlighted regularly.
• Contractual levers for all service providers to ensure that they meet the 9 principles above where relevant to their service and that there is an agreed way of capturing and monitoring this data.
• Access to easy read documentation to help with health promotion and advice.

Recommendations for Commissioners

Working in partnership with people with Learning Disabilities, their families and providers, commissioners need to take into consideration the following recommendations when commissioning services;

• Officers from the Council and Clinical Commissioning Group to work alongside key stakeholders and the local community to raise Learning Disabilities awareness and to ensure that information (in line with the Accessible Information Standard) and mainstream services are reasonably adjusted for people with Learning Disabilities. In particular alcohol and substance misuse, forensic and mental health services
• To increase the uptake of annual health checks that lead to health action plans amongst people with Learning Disabilities to 50% of the eligible population and to work to improve screening rates (cancer) amongst people with Learning Disabilities.
• To develop local housing options for people with Learning Disabilities who have challenging needs, including the provision of a short term accommodation for people who need crisis intervention and are at risk of placement breakdown.
• To increase the offer of settled accommodation (recommended nationally) by remodelling and to evaluate the impact of settled accommodation on outcomes locally in 2 years.
• Reduce the usage of assessment and treatment inpatient beds by 40% (national target).
• Ensuring people have choice and control over how their health and social care needs are met by offering personal budgets and personal health budgets (recommended nationally) with access to information, advice and support to help people understand the choices available to them. To evaluate the impact of personal budgets and personal health budgets on outcomes locally in 2 years.
• Increase the numbers of people with Learning Disabilities who are supported to access training, work experience, apprenticeships, and voluntary and paid employment.

A learning disability happens when a person's brain development is affected, either before they are born, during their birth or in early childhood.

Several factors can affect brain development, including: 

• the mother becoming ill in pregnancy 
• problems during the birth that stop enough oxygen getting to the brain
• the unborn baby developing certain genes
• the parents passing certain genes to the unborn baby that make having a learning disability more likely (known as inherited learning disability) 
• illness, such as meningitis, or injury in early childhood

Sometimes there is no known cause for a learning disability.

People with autism may also have learning disabilities, and around 30% of people with epilepsy have a learning disability.

Valuing People (2001) defined a learning disability

• a significantly reduced ability to understand new or complex information, to learn new skills (impaired intelligence (impaired intelligence, often defined as an IQ level of 70 or less), with;
• a reduced ability to cope independently (impaired social functioning); which started before adulthood, with a lasting effect on development.

Learning Disabilities is a diagnosis, but it is not a disease, nor is it a physical or mental illness. There are no official statistics reporting the number of adults in the UK with Learning Disabilities, and establishing a precise figure is not easy due to the social construct of the condition and its wide spectrum.

However estimates suggest that approximately 2% of the UK adult population have a Learning Disabilities. In South Tyneside it is estimated that there are around 891 adults with a Learning Disabilities. The number of adults with a Learning Disability in South Tyneside is increasing and the nature of need is changing.

It is anticipated that the population of those 18 - 64 with a Learning Disabilities will increase by 4% The projections are in line with projected increases in the general adult population. The primary driver is an increase in life expectancy.

Males are more likely than females to have either a mild Learning Disability or a severe Learning Disabilities (1.2 males: 1 female and 1.6 males: 1 female respectively), due to some conditions associated with a Learning Disabilities having a sex-linked genetic cause (Emerson et al 2001). The ratio decreases with age as women typically live longer.

People with Learning Disabilities have differing needs and are one of the most vulnerable groups in society, experiencing health inequalities, social exclusion and stigmatisation. In general, adults with Learning Disabilities have greater and more complex health needs than those without a learning disability and often these needs are not identified or treated.

Life expectancy of this group is shorter than the general population, though this has increased recently. In addition a number of national reports have highlighted that adults with Learning Disabilities often experience barriers to accessing healthcare services and poor levels of care. Adults with Learning Disabilities are more likely to die from a preventable cause than adults in the general population.

Online Learning Disabilities Profile: Fingertips - Learning Disabilities

See Figures 1, 2, 3, 4 and 5 Learning Difficulties JSNAA Appendix

Of the 891 people with Learning Disabilities known to the local authority, 70 live outside the borough of South Tyneside.

Of those known to services over 40% of those living in South Tyneside live with family or friends in settled long-term accommodation. Of these, over 25% are living with older family carers (aged 65+).

Information from the GP register, indicate we have 199 people aged 0 - 24, 463 people aged 25 - 54 , and 222 over the age of 55. 7 people known to the Local Authority are not recorded on the GP register and there is a significant higher group known from population data that is not on the GP register.

Data indicates that 1,315 referral were made to the Community Learning Disabilities in 2016. The predominate discipline referred to was community nursing services.

See Figures 6 and 7 Learning Difficulties JSNAA Appendix

Number of adults with Learning Disabilities in Assessment and Treatment Service

In South Tyneside there are currently 3 people in Assessment and Treatment

In South Tyneside There are currently 4 people in Specialist Commissioning.

Proportion of eligible adults with Learning Disabilities having a GP health check (%)

In 2017 , there was 884 people with learning disabilities known to South Tyneside and of this people 490 had a health action plan in place with a further 317 adults offered a heath check.

See Figure 8. Learning Difficulties JSNAA Appendix

Learning Disability Statistics: Mental Health Issues

Between 25 and 40% of people with learning disabilities also suffer from mental health problems

For children and young people, the prevalence rate of a diagnosable psychiatric disorder is 36% in children and adolescents with learning disabilities, compared with 8% of those who did not have a learning disability. These young people were also 33 times more likely to be on the autistic spectrum and were much more likely than others to have emotional and conduct disorders.

Children and young people with learning disabilities are much more likely than others to live in poverty, to have few friends and to have additional long term health problems and disabilities such as epilepsy and sensory impairments. All these factors are positively associated with mental health problems.

• People with learning disabilities demonstrate the complete spectrum of mental health problems, with higher prevalence than found in those without learning disabilities;
• The prevalence of dementia is much higher amongst older adults with learning disabilities compared to the general population (21.6% vs 5.7% aged 65+);
• People with Down's syndrome are at particularly high risk of developing dementia, with an age of onset 30-40 years younger than the general population
• Prevalence rates for schizophrenia in people with learning disabilities are approximately three times greater than for the general population (3% vs 1%)
• Reported prevalence rates for anxiety and depression amongst people with learning disabilities vary widely, but are generally reported to be at least as prevalent as the
• The Foundation for People with Learning Disabilities cites the following figures based on Department of Health research undertaken in 2011.
• An estimated 286,000 children aged 0 - 17 in England have some form of learning disability (LD) (approximately 2% of the 0 - 17 UK population).
• Approximately 200,000 of these were receiving a formal level of SEN support in school (approximately 1.5% of the 0 - 17 UK population).
• Of these, 80% had a moderate learning difficulty and 5% had profound or multiple learning needs.
• More boys than girls had an identified Learning Disability.
• Learning difficulties are more common in poorer areas and among traveller children than among other groups.
• Compared to other local areas South Tyneside has slightly less patients aged 0 - 25 identified on the Learning Disabilities register (0.49% compared to a NTW figure of 0.60%).
• The number of Learning Disabilities patients who have received a Learning Disability Health Check in South Tyneside (45%) is slightly worse than the regional average (46%).
• Autism is the most common comorbidity across all areas.
• Challenging behaviours (aggression, destruction, self-injury and others) are shown by 10% - 15% of people with learning disabilities, with age-specific prevalence peaking between ages 20 and 49

Number of children and young people with learning disabilities

• Autistic Spectrum Disorder 5 - 9 years Learning Disabilities - 13
• Autism and Autistic Spectrum Disorder  9-10 year Learning Disabilities - 40
• People with learning disabilities are more likely to experience mental health problems (Emerson, E. et al, 2008)[9]. Estimation of the population prevalence of learning disability is problematic and should be treated with caution. The estimated number of children with a learning disability in South Tyneside are:
• 80 5 - 9 year Learning Disabilities,
• 175 10 - 14 year Learning Disabilities,
• 240 15 - 19 year Learning Disabilities,
• These rates for different age groups reflect the fact that as children get older, more are identified as having a mild learning disability. The Foundation for People with Learning Disabilities (2002)[10] estimates an upper estimate of 40% prevalence for mental health problems associated with learning disability, with higher rates for those with severe learning disabilities. The estimated total number of children with learning disabilities with mental health problems in South Tyneside are:
• 35 5 - 9 year Learning Disabilities,
• 70 10 - 14 year Learning Disabilities,
• 95 15 - 19 year Learning Disabilities.

Emergency hospital admissions as % of total

Ideally, people who need treatment in hospital should be admitted before their illness reaches a critical stage where they have to be admitted as an emergency. This is particularly relevant for people with Learning Disabilities and autism where planning and preparation is crucial. However, the numbers of emergency admissions nationally are substantially larger for people with Learning Disabilities than for general population (50.0% vs. 31.1%).

In South Tyneside, the number of emergency admissions to general hospitals of adults with Learning Disabilities in 2013 / 14 represents 47.5% of the total number of people with Learning Disabilities known by services in the same year.

Proportion of adults with Learning Disabilities who are in paid employment

Paid work provides recognition of a valued social role, useful daytime occupation, important social opportunities, and in a few cases a helpful level of financial reward. Government policy has repeatedly emphasized the importance of maximizing work opportunities for people with LD since the publication of "Valuing People" (2001).

1% of adults aged 18 - 64 with Learning Disabilities were in paid employment in South Tyneside in 2015 / 16.

The National Autistic Society estimates that only 15% of adults with autism are in full-time paid employment. Gaining paid employment is a crucial part of tackling social exclusion as well as having obvious benefits to health and wellbeing

Learning Disabilities Expenditure

In 2015 / 16, South Tyneside spend on learning disabilities, adult social care and health, including care management and commissioned services, totaled £28,958,612.

The charts below show a breakdown of specific spend on learning disabilities and on which types of service.

Projected Need and Demand

Services at present are predominantly designed for those individual how have additional health and social needs over and over what informal support can provided, and it is clear that this has lead to the development of a reactionary service focus.

There is a clear demand and need for services for individuals with autism with present data for South Tyneside indicating that there is a greater degree of individuals who have a diagnosis of autism

There is a clear need for the development of a community infrastructure that assists in building resilience for people with a learning disabilities and or autism and carers. As part of the review it has been establish that this requires :

• Step up and step down services
• Voluntary and employment ops
• Crisis support
• Housing solutions
• Education opportunities
• Skills therapy support

There is a need to ensure that more people with learning disabilities, and their carers, have access to personal health budgets and that they use them in a way that they choose.

There is a need for safe, secure housing for people with Learning Disabilities in the local community.

Partnership work is required to:

• Review health and social care funding arrangements to support early discharge from inpatient and are home settings; strengthen community outreach healthcare support services to support people in crisis.
• Review levels of inpatient assessment and treatment as a result of strengthened community teams.
• Make sure that out of county inpatient placements are necessary only in very exceptional circumstances.

There is a need to ensure that people with Learning Disabilities have enhanced opportunities to gain skills and support to get a job and remain employed.

There is a need to assess carers' needs and make sure that they have opportunities for a variety of respite.

Services at present are predominantly designed for those individual how have additional health and social needs over and over what informal support can provided, and it is clear that this has lead to the development of a reactionary service focus.

There is a clear demand and need for services for individuals with autism with present data for South Tyneside indicating that there is a greater degree of individuals who have a diagnosis of autism.

There is a clear need for the development of a community infrastructure that assists in building resilience for people with a learning disabilities and or autism and carers. As part of the review it has been establish that this requires:

• Step up and step down services
• Voluntary and employment ops
• Crisis support
• Housing solutions
• Education opportunities
• Skills therapy support

There is a need to ensure that more people with learning disabilities, and their carers, have access to personal health budgets and that they use them in a way that they choose.

There is a need for safe, secure housing for people with Learning Disabilities in the local community.

Partnership work is required to:

• Review health and social care funding arrangements to support early discharge from inpatient and are home settings; strengthen community outreach healthcare support services to support people in crisis.
• Review levels of inpatient assessment and treatment as a result of strengthened community teams.
• Ensure that out of county inpatient placements are necessary only in very exceptional circumstances.

There is a need to make sure that people with Learning Disabilities have enhanced opportunities to gain skills and support to get a job and remain employed.

There is a need to assess carers' needs and make sure that they have opportunities for a variety of respite.

The Community Team for People with Learning Disabilities is a health service multi-disciplinary team. They work to support adults with learning disabilities to maintain their independence in the community. The team consists of senior practitioners, psychiatrists, psychologists, nurses, therapists and admin staff.

Care and support for people with learning disabilities and their families is currently delivered by a range of providers from the voluntary, statutory and independent sector.

The Council currently commissions 23 organisations to provide a range of accommodation based and community services in South Tyneside as well as providing a number of services directly. The main services available include supported living, residential care, nursing care, day opportunities, respite and short breaks, outreach, homecare, transport, advocacy, and day opportunities.

The local colleges and Independent specialist providers deliver supported learning courses aimed at students with Learning Disabilities including people with profound and multiple Learning Disabilities, challenging needs and autism.

In addition to directly commissioning services, the Council works in partnership with the voluntary sector and the wider community to promote access to mainstream services, facilities and activities e.g. leisure, sports, arts and culture and transport.

In South Tyneside there are 7 residential care services, currently offering accommodation for up to 40 people. There are supported living services offering accommodation for 139 people through a range of tenures - shared lives, shared ownership, private rented, and social housing. South Tyneside currently has 84 shared lives carers supporting 49 people within long term shared lives arrangements with 16 people accessing the service for short break stays.

People living with their families have access to a range of support, which aim to promote the health and wellbeing of both the person with Learning Disabilities and their family, allowing family carers to have a break from their caring role. These services include day-opportunities, outreach, support at home, and short-breaks.

There are two specialist residential short breaks services in the borough; one caters for people with challenging behaviour, the other for people with profound and multiple learning disabilities. The Shared Lives scheme also provides respite to family carers.

Building the Right Support (2015)

A national plan to develop community services and close inpatient facilities for people with a Learning Disability and / or autism, who display behaviour that challenges, including those with a mental health condition.

People with a Learning Disability and / or autism who display behaviour that challenges are a highly heterogeneous group. Some will have a mental health problem which may result in them displaying behaviour that challenges. Some, often with severe learning disabilities, will display self-injurious or aggressive behaviour unrelated to any mental health condition. Some will display behaviour which can lead to contact with the criminal justice system. Some will have been in hospital for many years, not having been discharged when NHS campuses or long-stay hospitals were closed. The new services and support we put in place to support them in the community will need to reflect that diversity.

Building the Right Support highlights the challenge facing commissioners which is as much about preventing new admissions and reducing the time people spend in inpatient care by providing alternative care and support, as it is about discharging those individuals currently in hospital. The task requires: advocacy, early intervention, prevention, ensuring the right set of services are available in the community. People for whom we need new services is summarised in figure below.

See Figure 9 Learning Difficulties JSNAA Appendix

Building the Right Support contains the following key elements:

• National Service Model with 9 core principles
• Hospital closure programme - national expectation of 35 - 50% reduction of total inpatient estate once community services are in place
  • A new financial framework
  • Alignment of NHS England budget with Transforming Care Partnerships
  • Pooled budgets across the NHS and Local Authorities
  • Dowries for people who have been in hospital for over 5 years
  • Personal budgets
• A Transformation Fund to support reinvestment in a range of flexible proactive community based services
  • £30 m national transformation fund to be matched by CCGs
  • £15 m capital
• Who Pays Guidance revised to remove funding barriers
• New Care and Treatment Review policy and guidance published in April 2017 to include the requirement to hold community reviews for adults and children at risk of admission

To achieve this systemic change, 49 Transforming Care Partnerships (commissioning collaborations of CCGs, NHS England's specialised commissioners and local authorities) have been established in England to work across geographical areas with people who have lived experience of these services, their families, and key stakeholders to agree robust implementation plans.

National Service Model

The national service model (2015) for commissioners of health and social care services outline what good services and support look like for people with a Learning Disability and / or autism who have mental health conditions or display behaviour that challenges, including behaviours which may result in contact with the criminal justice system. The model sets out the range of support that should be in place no later than March 2019. It is structured around nine core principles that are stated from the perspective of the reasonable expectations of someone who might use such services.

The nine principles are:

1) I have a good and meaningful everyday life

• Inclusion in activities and services
• Education training and employment
• Relationships with people
• Support to do things

2) My care and support is person-centred, planned, proactive and

3) I have choice and control over how my health and care needs are met

4) My family and paid support and care staff get the help they need to support me to stay in the community

• Support and training for families and carers
• Short break / respite
• Alternative short-term accommodation
• Trained support and care staff

5) I have choice about where I live and who I live with

• Choice of housing and who I live with
• Security of tenure
• Strategic housing planning

6) I get good care and support from mainstream health services

• Annual health checks
• Health action plans and hospital passports
• Liaison workers
• Quality checkers
• Reasonable adjustments

7) I can access specialist health and social care support in the community and

8) If I need it I get support to stay out of trouble

• Specialist health and social care support for people
• Intensive 24 / 7 function
• Specialist forensic support
• Inter-agency collaborative working, including with mainstream services
• Liaison and diversion

9) If I am admitted for assessment and treatment in a hospital setting because my health needs can't be met in the community, it is high-quality and I don't stay there longer than I need to be

• Integrated with community services
• Admission based on a clear rationale
• Discharge planning
• Reviews of care and treatment (CTRs)

The human rights of people who use services are incontrovertible and must be upheld at all times; consequently there are a number of 'golden threads' that run consistently through the nine principles described and which should therefore be reflected in local commissioning strategies:

• Quality of life
• Keeping people safe
• Choice and control
• Support and interventions
• Equitable outcomes

NICE Guidelines for people with Learning Disabilities

NICE guidance is available for people with learning disabilities and behaviour that challenges. The recommendations in the guidelines are structured under heading. This is just a summary drawing attention to some key points under the different headings.

General principles of care

• Clear focus on the person and their family and supporters, taking into account the severity of Learning Disability and developmental stage; communication difficulties, and physical or mental health problems
• Support and interventions to be delivered in the least restrictive setting aiming to prevent, reduce, or stop the development of future episodes of behaviour, focusing on improving people's support and increasing skills
• Prompt and coordinated access to specialist assessment, support, and intervention services when required for advice, supervision, and training
• Staff training for proactive strategies to reduce the risk of challenging behaviour and to deliver reactive strategies.
• Recognise impact on family members or carers and offer information on access to family advocacy and consider family support and information groups
• Provide skills training and emotional support to help family and carers take part in and support interventions.
• Strategies for early identification of initial behaviour that challenges including clear recording, awareness of physical health problems; environmental factors and changes to the person's environment
• Annual physical health checks to include review of behaviour that challenges and any link to physical health problems along with review of current health interventions, including medications and related side effects, adverse events etc.

Assessment

• The process to be person centred, with a focus on outcomes of reducing behaviour that challenges and improving quality of life taking into account resilience, resources, and skills of family members and carers
• Risk assessment to include regular review of suicidal ideation, self harm and self injury; harm to others; self neglect breakdown of family or residential support; exploitation, abuse, or neglect by others; rapid escalation of the behaviour that challenges.
• Functional assessment to be varied in complexity and intensity in line with complexity and intensity of the behaviour that challenges
• If a mental health problem might underlie behaviour, consider initial screening using mental health assessment scales

Psychological and environmental interventions

• Consider parent training programmes for parents or carers of children aged under 12 years with emerging, or at risk of developing, behaviour that challenges.
• Consider personalised interventions based on behavioural and cognitive behavioural principles and a functional assessment of behaviour, with clearly identified target behaviours and agreed outcomes and specified timescales to meet intervention goals.

Drugs

• Consider antipsychotic drugs only in combination with psychological or other interventions and only if;
• psychological or other interventions alone do not produce change within an agreed time;
• treatment for coexisting mental or physical health problem has not led to a reduction in the behaviour the risk to the person or others is severe.

Full guidelines are available here NICE Guidance

Several workshops where completed within South Tyneside around present services and areas for development - Common Themes that Emerged from the Workshops:

What was thought to currently works? (no particular order of priority / emphasis)

• Access to health care - single point of access e.g. Target Cancer Screening
• Good multi professional working within health
• CTR Process is nationally recognised good practice
•  Advocacy drop-in - Jarrow provides good links, reduces service isolation and could provide a basis for the model to be extended to other areas of the borough
• Pockets of good work in the community and with the community team
• Liaison post working into hospital / community
• Self / peer advocacy

What Currently Not Working? (no particular order of priority / emphasis)

• IT and Information Sharing - Multi IT Systems and information sharing protocols and processes that aren't compatible between health and social care services
• Transitions - people not moving from children's to adult services smoothly; no planning for the future, working in a reactive way, including transition from children's to adult services. There is a need to manage the expectations of families / carers through the transition process. "Links to reactive"
• Autism - lack of specific services for people with on the Autistic Spectrum.  There isn't always a dual diagnosis with learning disabilities
• Preventative, Community Services / Infrastructure -local community services aren't there / are disjointed to prevent people needing services in the first place e.g. Tenancy Support Officer (a few hours a week)
• Reactive -Reacting rather than looking ahead to future needs, particularly around transitions;  Focus on people who are already entering crisis rather than a focus on prevention; "Links to management and response to crisis"
• Social Work Team - turnover of staff is high, joint working between health and social care/workers result in duplication and people seeing different professionals but answering the same questions. Social Workers communication with health professionals would benefit from improvement. "Links to IT systems and communication"
• Advocacy's - waiting list for service, there is no specific Care Act Advocacy Service, other advocacy services lack Care Act knowledge of legislation. "Links with No clear appeals process to challenge decisions and other IAG"
• Crisis - focus on people who are already entering crisis rather than a focus on prevention, crisis management; feel people can be left until crisis. Need better representation from LA at meetings where people at risk of entering crisis are being discussed. People can yo-yo between being stable and crisis. "Link to preventative and maintenance"
• People still placed out of area / in hospital/residential settings
• Access to information e.g. services, day services/activities, direct payments, service directory / resource pack.
• Inadequate support for family when resident / client is in acute service

Ideas and Solutions

• Co-location, integrated teams - multi-agency team including a range of disciplines: e.g. welfare assistants, health and social care, housing, voluntary sector, transition worker / team Advocacy, transition worker.
• This would reduce duplication of work; in addition to the reduction of confusion and anxiety of families and carers navigating "the system"
• Step-up, Step-down - develop a response / transition pathways between health and social care step-up step-down services - joint processes Joint contingency planning, including in patient and crisis
• Improved crisis response service - Inclusion of social worker in team, South Tyneside to have its own 24 hr team, have a joint commitment to social care, health, family advocacy when in crisis to prevent hospital admission
• Pathways - adopt a life span approach to aid a seamless journey / less confusion for people, and less duplication. Implant a more flexible approach across children and adult pathways; e.g. PH / MH / PBS Integrated. 
• Overarching Manager - continuity, "joint care, coordination, and continuity of team, shared responsibilities. Specialist leads. This would also contribute to the improvement of transition management
• Staff, Skills Asset - multi-talented workforce, skill development, assessment training, "specialist" Staff (social workers / nurses - care providers)
• ICT- system(s) that meets needs of integrating teams, a single electronic system across all services? Ideally each individual would have one record that could be shared and access by all appropriate professionals. Utilisation of social media, Facebook, etc. for communication with clients / families / carers of individuals with learning disabilities. Make sure the appropriate governance is in place that allows agencies to share assessments and information. Shared admin function across the multi-disciplinary team
• Market and Providers Development - encourage and support providers to be more creative and innovative, especially those related to new housing options, e.g. concierge accommodation, Keyring model localities etc.

What does success look like?

• Staff, service users, families / carers will be really clear about what is available in different situations; how to access it and be assured it will be responded to in a coordinated, seamless way across health and social care - prevention through to crisis.
• People are resilient and supported and integrated into their community accessing local universal services
• Services are outcome focused, not focused on a diagnosis and or contact
• Excellent communication between partners; system support integrated working 
• Agencies and providers are able to provide support in a timely flexible way that meets the need of the person and their family / carer
• Person reaches their goals earlier without hitting point of crisis.  Person, staff and family are happier with positive outcomes achieved sooner
• Effective transition processes understood by families. Earlier interventions, information / knowledge passed on from school. 
• Appropriate individuals involved; driven by the individual's need

A 100 people project was carried out by a group of people with Learning Disabilities in 2016 and focused on the follow areas:

• 100 voices on employment
• 100 voices on leisure and culture
• 100 voices on staying health and well
• 100 Voices on young people

The recommendations from these projects were:

• People would like the opportunity to get real work experience in a supported environment.
• People want to learn new skills to help them find work - including interview skills and job searching
• People would like clear information -especially around how employment affects benefits
• People want parents and carers to be involved
• People want to learn in a safe environment
• People feel travel training should be built into employment training
• People want to be offered employment training at annual reviews
• People attending day opportunities enjoy the range of activities, staff support and "feeling safe"
• People are unlikely to sign up to employment training without a firm alternative structure in place to support them
• People would like the opportunity to get out in the evening and at weekends
• People want more staff support to do this
• People would like clear information -especially around timetables
• People want parents and carers to be involved
• People want to feel safer on the street
• People feel travel training should be built into any action plan around leisure and culture
• People would like more "easy read" health information
• People want parents and carers to be involved in diets - especially around making a healthy lunchbox
• People would like to go out more at weekends and evenings (our research shows young people go out more than older people)
• People want more travel training to promote independence
• People want more access to sport and leisure at these times
• People want more staff available to support this
• People want to have somewhere they can meet at weekends to relax with friends
• People want more support with bereavement
• People want more groups supported by Your Voice Counts staff
• Young people with learning disabilities want to work and plan for the future.
• They want to learn new skills and gain a varied work experience
• Young people want work experience that reflects their interests e.g. learning more about designing computer games and placements in games shops
• They like the Project Choice model - and want it to be more widely available
• They want support around life skills, travel training, job hunting on line, sex education and internet safety
• They want statutory services i.e. council, health, fire and police to offer work experience - and real employment opportunities
• They want employers, council staff, transport companies and statutory services to receive more awareness training around autism and mental health issues
• They want parents and carers to be less protective
• They want more places to go at night
• They want more information on sport and leisure facilities across South Tyneside

None identified.

Last Updated: September 2017