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Learning Disabilities

Introduction

This needs analysis covers young people and adults, aged 18+, with learning disability.

There is no single accepted definition of learning disability. It does not include learning difficulties such as dyslexia, although some people use the terms interchangeably. The agencies who are involved in developing and delivering services for people with learning disabilities in Bedford Borough work with the definition of learning disabilities taken from the Department of Health White Paper, ‘Valuing People’ (DoH, 2001)

  • “A significantly reduced ability to understand new or complex information, to learn new skills (impaired intelligence), with;
  • A reduced ability to cope independently (impaired social functioning);
  • which started before adulthood, with a lasting effect on development” (Department of Health, Valuing People, 2001, p 14)

 

A person’s learning disabilities may be severe or profound, or mild/moderate. Those with profound and multiple learning disabilities need assistance with many aspects of their day to day lives such as eating, drinking, washing and dressing.

 

Facts, Figures and Trends

Current Situation

Calculating the precise number of people with a learning disability is problematic at local and national level. Figures vary based on definitions, data sources and any adjustments made for increased longevity and reducing mortality. Estimates of the number of people with learning disabilities can be calculated using an ‘administrative prevalence’ or a ‘true prevalence’ approach:

Administrative Prevalence - This approach calculates the prevalence of learning disabilities based on the number of people who are known to local agencies/service providers because they are on the relevant ‘register’. This information is then combined with census data to calculate age and gender specific prevalence rates for people with learning disabilities who are known to learning disabilities services. This approach to calculating the number of people with learning disabilities is limited, as only a minority of people with less severe learning disabilities are known to service providers. 

 

True Prevalence- True prevalence rates of learning disabilities are calculated by estimating the ‘hidden’ number of people with (predominantly) mild learning disabilities and adding this estimated figure to the administrative prevalence figures.

The Centre for Disability Research (CeDR 2008) estimated that there were 985,000 people in England in 2004 with a learning disability, equating to 2% of the population.  This figure included 828,000 adults (aged 18 or more). Of these adults, CeDR estimated that 177,000 were known users of learning disability services in England (equivalent to 0.47% of the adult population).

 

CeDR also predicted  that the increase in the English population from 50.9 million in 2007 to 56 million in 2027 would result in an equivalent increase in the population of people with learning disabilities.

 

More current data presented by Projecting Adult Needs and Service Information (PANSI) suggests that there are 1,013,000 people with learning disabilities aged over 18 in England (2015).

 

The PANSI estimates and predictions are based on Emerson and Hatton’s report “Estimating Future Need/Demand for Support for Adults with Learning Disabilities” (2004) which formed the basis for the CeDR estimates.  Emerson and Hatton have taken the prevalence base rates for adults with a learning disability, and adjusted the rates to take account of ethnicity (e.g. the increased prevalence of learning disabilities in South Asian communities) and mortality. However, it should be noted that this adjustment is made at a national level and figures for those local authorities with high South Asian populations, such as Bedford, may under-estimate local prevalence.

 

The PANSI data estimates that 2,414 people in Bedford Borough aged 18-64 have a learning disability (2015).  Table 1 below breaks the PANSI figures into age ranges, and predicts prevalence in learning disabilities to 2030:

 

The PANSI and POPPI data quoted below uses ONS 2012-based population projections.

Table 1

Population predicted to have a learning disability by age group 

2015

2016

2020

2025

2030

18-24

390

390

373

369

411

25-34

520

525

548

560

538

35-44

535

538

549

578

600

45-54

551

556

550

533

550

55-64

418

425

475

518

516

Total population aged 18-64 predicted to have a learning disability

2,414

2,434

2,495

2,559

2,615

Source:  Projecting Adults Needs and Service Information, 2015

 

Projecting Older People Population Information System (POPPI) estimates that there are 589

people aged 65+  with a learning disability in  Bedford Borough (2015),  as shown in Table 2 below:

 

Table 2

Population predicted to have a learning disability by age group

2015

2016

2020

2025

2030

65-74

327

338

359

365

417

75-84

184

184

205

258

280

85 and over

78

82

96

115

144

Total population aged 65 and over predicted to have a learning disability

589

604

661

738

841

Source:  Projecting Older People Population Information System, 2015

 

In 2015, PANSI  and POPPI estimate that people in Bedford Borough aged between 18 and 85 are predicted to have the following learning disabilities, as shown in Table 3:

 

Table 3

 

Years

2015

2016

2020

2025

2030

Age range

 

 

 

 

 

Moderate or severe learning disability, and hence likely to be in receipt of services

18-64

551

556

569

586

601

65+

80

82

88

97

109

Severe  learning disability, and hence likely to be in receipt of services

18-64

146

147

150

155

159

Moderate or severe learning disability and be living with a parent

18-64

206

208

209

214

222

Down's syndrome

18-64

62

62

64

66

67

65+

1

1

1

1

1

Challenging behaviour

18-64

45

45

46

47

48

Source: Projecting Older People Population Information System/Projecting Adults Needs and Service Information (2015)

Not only will the prevalence of learning disabilities increase in line with population growth, it is also expected that there will be a growth in the complexity of disabilities due to:

  • Improvements in maternal and neonatal care
  • Increasing prevalence of foetal alcohol syndrome
  • Increasing numbers of adults from South Asian minority ethnic communities where prevalence of learning disability is higher.
  • Improvements in general health care for adults which lead to increase life expectancy

 

Mild to moderate learning disability is linked with poverty, and rates are higher in deprived and urban areas. Therefore we can reasonably expect numbers of adults with learning disabilities to be concentrated in Bedford Borough within wards of higher deprivation, such as:

  • Castle
  • Cauldwell
  • Goldington
  • Harpur
  •  Kingsbrook 
  • Queens Park

 

Local Offer – Children and Families Act 2014

 

The Children and Families Act 2014 introduced wide ranging reforms to improve outcomes for children and young people with special educational needs and disabilities (SEND) and their families. The changes were introduced in September 2014 and included: 

 

  • The publication of information in one place on the range of local services available for children and young people with special educational needs and disabilities and their families called the Local Offer.
  • A new integrated assessment process for children and young people with special educational needs and disabilities aged 0-25, which may lead to an Education, Health and Care (EHC) Plan. This replaced Special Educational Needs (SEN) Statements and Learning Difficulty Assessments (LDAs).
  • The option for families with an EHC Plan to request a Personal Budget for relevant provision in their EHC Plan.

 

Table 4 shows the number of people aged 18-24 with various degrees of learning disabilities who will benefit from the Local Offer services and need to be taken into consideration when planning the services.

Table 4

 

2015

2016

2020

2025

2030

Moderate or severe learning disability, and hence likely to be in receipt of services (18-24)

90

90

87

87

97

Severe  learning disability, and hence likely to be in receipt of services (18-24)

30

30

33

34

32

Moderate or severe learning disability and be living with a parent (18-24)

60

60

57

58

65

Down's syndrome (18-24)

9

9

9

9

10

Challenging behaviour (18-24)

6

6

6

6

7

Source: Projecting Adults Needs and Service Information (2015)

 

Transitions from children services to adult services

 

Managing transitions from children’s to adult services is critical to service planning as significant demand is anticipated in the next few years.

 

The Adult Learning Disability Team reports that 57 children with LD aged 14-18 are expected to move to adult services i.e. a minimum of 10 per year for the next 5 years (2014-2019).

 

Many of these are supported in specialist residential educational settings. These are at high risk of becoming new high cost residential clients unless their transitions are carefully planned and managed.

 

Forward planning for transition is already critical and this must remain a priority for the future.

 

Ethnic Composition 2015

 

Bedford Borough is one of the most ethnically diverse authorities in the East of England,with up to 100 different ethnic groups living within its boundaries.

 

The 2011 Census indicates that 28.5% of the population was from Black and Minority Ethnic (BME) groups, compared to 20.2% in England (though only 13.9% when the London Boroughs are excluded) and 14.7% in the East of England. Given the significant level of international in-migration to the Borough since 2011, it is likely that the BME proportion has now risen to approximately 30%.

Where people live – Adult Social Care Outcomes Framework

 

Bedford Borough Council’s proportion of residential care is higher than comparators groups.

LD1

 

Source: Adult Social Care Outcomes Framework (ASCOF) Report 2014/2015

 

Employment – Adult Social Care Outcomes Framework

LD2

 

Source: Adult Social Care Outcomes Framework (ASCOF) Report 2014/2015

Bedford Borough Council’s expenditure profile of Learning Disabilities Services

Table 5

 

2009/2010

2010/2011

2011/2012

2012/2013

2013/2014

% of total expenditure of LD budget of LD budget on residential and nursing services for LD

55

49

50

55

53

% of total expenditure on day and domiciliary  services for LD

37

38

41

43

45

% of total expenditure of LD budget on assessment and care management  for LD

8

13

10

2

3

Source PSSEX1

 

Health and Social care needs

 

1.    Health

 

There is clear evidence that most people with learning disabilities suffer poorer health than the rest of the population, and are more likely to die at a younger age. Half of all people with Downs Syndrome have congenital heart problems, and a higher risk of developing dementia, and a higher risk of gastro-intestinal problems and cancer. Early death may also be associated with some difficulties that are, to some degree, preventable. For example, as a vulnerable group, people with learning disabilities are less likely to access screening programmes, and develop health issues such as diabetes, asthma and mental health difficulties, because of unmet health needs.  People with learning disabilities find it difficult to identify symptoms of illness, and to navigate the health system, and consequently their problems make it more difficult for health professionals to deliver effective treatment.

 

An estimated 73 adults in Bedford Borough aged 75 and under, died from circulatory diseases including heart disease and strokes (PHE Mortality Rates 2014). If an estimated 2% of the adult population has learning disability it is reasonable to suggest that 2 people with learning disabilities will be amongst that number. After cancer, coronary heart disease is the second most common cause of death amongst people with learning disabilities with rates increasing amongst people with learning disabilities due to them living longer, and increased exposure to risk factors as a result of lifestyle changes associated with living in community settings.

 

a.    Current  activity & services

 

Health services for people with learning disabilities are commissioned according to a five-tiered model of care:

 

Tier 0 - Community, public health and strategic approaches to care

 

The promotion of the general health and wellbeing of all people with learning disabilities in all settings in the community. This includes public health and specialist nurses working with communities and local services to promote involvement, social inclusion and raise awareness of health issues

 

Tier 1 - Primary care and directly accessed health services

 

Access for all people with learning disabilities to primary care services and directly accessed health services such as community pharmacy, dental and optician services.

 

Tier 2 - Health services accessed via primary care

These services work in support of primary care services in meeting general and additional health needs by providing appropriate assessment, treatment and specialist advice if required. Such services include outpatient, domiciliary and in-patient services delivered from general hospital services, and includes palliative care

 

Tier 3 - Specialist locality health services

 

Focuses on specialist learning disability/mental health/child health services that are provided on a locality basis. These services work to support primary care services and others by providing advice, assessment, interventions and treatments for complex specialist learning disability health needs. Specialists provide advice and practical support to people with learning disabilities, their families, and to local authority or voluntary sector providers such as schools, day services and short breaks services

 

Tier 4 - Specialist area health services

 

These consist of highly specialist area and regional services. They might be special assessment and treatment in-patient units, or area-wide specialist Additional Support Teams for people with complex challenging needs, or forensic services for people with learning disabilities. May be in-patient as well as in-reach models.

 

The East London NHS Foundation Trust is the provider of mental health and learning disability services in the Bedford Borough area, and provides specialist adult learning disability health services. Please note that at the time of writing this document, the specialist learning disabilities services are being reviewed.

 

Specialist Health Services

 

Health Facilitation Team - A Nurse led service that works with adults with learning disabilities to enable them to receive equitable healthcare from mainstream services.

 

Learning Disability Liaison Nurses in acute hospitals improve access and the experience of people with learning disability services in acute hospitals.

 

The acute hospital team is complemented by primary health facilitators based in the community learning disability team who improve access to primary services and promote positive health outcomes for people with learning disabilities.

 

Wood Lea Clinic in Bedford is a low secure unit for people who have a learning disability and who have committed an offence. Clients who are admitted to the unit are engaged in a comprehensive and detailed treatment programme, with the goal of planned rehabilitation and resettlement in the community.

 

The Intensive Support Service Team provides a time limited, person-centred service to adults with a learning disability who are exhibiting challenging behaviours. Support is given through assessment, short-term treatment including behavioural interventions, medication reviews, and cognitive approaches and skills assessments.

 

Specialist services, offered via the specialist community health care team, including psychology, (art) psychotherapies and sensory impairment services. Other assessment and treatment services are available for people with learning disabilities to help them deal with emotional difficulties, communication problems, autism, epilepsy and mental health issues. Clients can be seen at home, at their place of work, or at our specialist clinic at Twinwoods Clinical Resource Centre in Clapham.

 

Bedfordshire Clinical Commissioning Group undertook review of the specialist learning disabilities services in 2013/2014. Although there will be case for some specialist learning disabilities services, the result of this review is to make learning disabilities services more available in the mainstream health services. The implementation of the new model will take place in 2015/2016.

 

Social care

Employment

 

Bedford Borough Council has embarked on a radical day services modernisation programme which promotes new opportunities for paid and unpaid employment, training and work experience. For example, a “Meet and Greet” service at Borough Hall supports visitors in the Council offices .  The day service modernisation programme also includes new opportunities for work placements.

 

Other local providers are developing employment support schemes, including:

 

  • Lansdowne Care Services- as a stepping stone for people who use their traditional day services.
  • Beds Garden Carers in relation to gardening and recycling projects in the community which aim to support people away from day services towards paid employment
  • Autism Bedfordshire are working with individuals and groups to support people on the autistic spectrum to access employment, training, CV advice and work experience opportunities. This involves working with local employers and providing support, guidance and training to employee and employer about the support needs of people with autism.
  • European Social Fund funding also addressed the needs of unemployed or inactive individuals with learning disabilities who live within Bedford Borough by supporting them into work, or achievement of an appropriate positive outcome. The programme embraced Valuing People Now, real jobs for people with learning disabilities.

 

Housing Needs

 

People with learning disabilities and their families should be helped to consider how to match their aspirations, both in the long and short term, with the different sorts of housing and support that can be made available. At the same time, those who plan and commission services need to develop creative solutions to meeting those aspirations. Possibilities include people with learning disabilities being supported to live in their own home as owners or tenants; being supported to share with a group of friends; or living in residential care.

 

Quality Assurance

 

People with complex needs and challenging behaviours are among the most marginalised in our society. However, for some people with highly complex needs, such as those with profound and multiple learning disabilities or who are medically dependent, appropriate and skilled support is required to enable them to participate in community life as fully as possible. They also need support enabling them to lead fulfilling lives with opportunities for growth, relationships, decision-making and self-expression.

 

People with learning disabilities and autistic spectrum conditions need support that responds to their individual needs, from staff with understanding and experience of working with them.

 

Winterbourne

 

The Winterbourne Review revealed systemic problems with the quality and safety of care for people with highly complex needs and challenging behaviour. The report produced recommendations for a) appropriate assessment and treatment services, b) agreed and transparent commissioning arrangements, c) appropriate level of expertise among local providers; and d) local specialist support pathway based on best practice. These recommendations will not enhance only specialist services, but will improve delivery of services for people with learning disabilities in general.

 

Bedford Borough works in partnership with Bedfordshire CCG and neighbouring authorities on the implications of Transforming Care suggestions for people with learning disabilities who were placed in the hospital care.

 

Getting Involved more

 

Bedford Borough has a Learning Disability Partnership Board with membership of people with a learning disability and family carers. National research has found that more needs to be done to fully include people with learning disabilities in the Board’s participation. The research also supports the fact that the effectiveness of the Boards has been reliant on the commitment of senior managers.

 

It is important that the Learning Disability Partnership Board locally links to children’s partnerships and networks, including Children’s Trust partnerships and Child and Adolescent Mental Health Services (CAMHS) partnerships.

Local Views

 

What people with Learning Disabilities and their carers are saying?

 

1.41     Bedford Borough Learning Disability Partnership Board brings together people with an interest in achieving better lives for people with a learning disability and their families. 

 

1.42     The Board’s role is to deliver current national strategy for learning disability and local priorities and to take positive steps to ensure that people with a learning disability have the best possible chance to live safely and independently in the community. Learning Disability Partnership Board meetings are open to all interested people. 

 

1.43     Throughout the last years a series of topics have been discussed and stakeholders have been asked to share their views on each area.

 

1.44     The main areas of interest and discussion were:

 

  • ·         Employment service and supported employment strategy
  • ·         Access to health services, specifically access and quality of health checks
  • ·         Continuing health care for people with learning disabilities
  • ·         Transport arrangements for people with learning disabilities
  • ·         Respite care – what people like, what it should look like in the future
  • ·         Charging for services
  • ·         Housing – options, selection, accessibility, overcoming loneliness
  • ·         Day opportunities – access, form, future
  • ·         Transitions from children services to adult services
  • ·         Budgets and savings the council need to make
  • ·         Autism and autism strategy, services for people with Autism and Learning Disabilities
  • ·         Winterbourne Report recommendations implementations
  • ·         Reconfiguration and review of specialist learning disabilities services
  • ·         Learning Disabilities Self Assessments

1.45     All the discussions are available here:

 

http://www.bedfordboroughpartnership.org.uk/p/learning-disability-pb-meeting-dates

 

National & Local Strategies (Best Practice):

a)     Valuing People Now (2001) – the Government’s strategy to enable everyone with a learning disability, their families and carers to live full and independent lives. Valuing People included four key principles for people with learning disabilities:

 

  • ·         Rights
  • ·         Independence
  • ·         Choice
  • ·         Inclusion

 

b)  Valuing People: The Story so Far (2005) – a report on progress of Valuing People since 2001

b)  Valuing People: The Story so Far (2005) - a report on progress of Valuing People since 2001

c)  Valuing people now: from progress to transformation - a consultation on the next three years of learning disability policy (2007) – seeking views on priorities for the learning disabilities agenda to 2011

d)  Valuing People Now: new three year strategy for people with learning disabilities (2009) – as a result of the consultation which ended in March 2008, the Department of Health published its strategy and delivery plan for responding to the ten main recommendations in HealthCare for All, and provided a further response to the Joint committee on Human Rights report, A Life Like Any Other?

e)  Valuing People Now: The Delivery Plan 2010‑2011 – published in April 2010, this is the second of the Valuing People Now delivery plans, and outlines progress during 2009 and sets out actions to be take in 2010-11, to support the implementation of Valuing People Now.

f) Personalisation - There has been a gathering policy momentum leading to local authority and health service reform. A fundamental re-think of the relationship between citizens and public services runs through, for example,

  • ·         Improving the Life Chances of Disabled People,
  • ·         Our Health, Our Care, Our Say,
  • ·         Putting People First,
  • ·         NHS Next Stage Review.
  • ·         Vision for Adult Social Care- Capable Communities and Active Citizens 2010
  • ·         Think Local, Act Personal 20011- Sector wide commitment to moving forward with Personalisation and community based support

 

g) Green Light – toolkit about planning services for people with learning disabilities and mental health problems.

 

h) Valuing Employment Now- real jobs for people with learning disabilities sets out an ambitious goal to increase radically the number of people with learning disabilities in employment by 2025.

 

i) Winterbourne- In 2012, the government published its final report into the events at Winterbourne View Hospital and has set out a programme of action to transform services so that vulnerable people no longer live inappropriately in hospitals and are cared for in line with best practice

 

Department of Health (2012). A national response to Winterbourne View Hospital final report. London: The Stationery Office

 

j) East of England – Vision for Better Health and Well Being for People with a Learning Disability and Family Carers The Vision for Achieving Better Health and Well Being for People with a Learning Disability and their Families in the east of England (please see figure 3 for summary) set out a clear framework for the transformation of health services over the next 10 years so that people are supported through better health to achieve the lives they want.

 

NHS Midlands and East (2012). East of England – Vision for Better Health and Well Being for People with a Learning Disability and Family Carers.

Available at: https://www.eoe.nhs.uk/page.php?page_id=2123

 

k) Improving the Health and Wellbeing of People with Learning Disabilities: An Evidence-Based Commissioning Guide for Clinical Commissioning Groups

 

Learning Disabilities Observatory (2012). Improving the Health and Wellbeing of People with Learning Disabilities: An Evidence-Based Commissioning Guide for Clinical Commissioning Groups.

 

l) Bedford Borough and NHS Bedfordshire Joint Commissioning Strategy for People with LD.

 

m) Local Autism, Dementia and Carers Strategies.

Available here:

http://www.bedford.gov.uk/health_and_social_care/help_for_adults/joint_commissioning_strategies.aspx

http://www.bedford.gov.uk/health_and_social_care/help_for_adults/autism.aspxhttp://www.bedford.gov.uk/health_and_social_care/help_for_adults/joint_commissioning_strategies.aspx

 

n) Transforming Care for People with Learning Disabilities – Next Steps (2015)

available at: https://www.england.nhs.uk/wp-content/uploads/2015/01/transform-care-nxt-stps.pdf

 

What is this telling us?

Inequalities start in early childhood with child development and education, and continue on to employment, working conditions, housing and neighbourhood conditions. Inequalities in standards of living, and more generally the deprivation of the opportunity to participate in the benefits of society, mean that health inequalities continue to exist. Key barriers affecting people with learning disabilities include discrimination; poverty; low choice and quality of housing; social exclusion; low education and employment opportunities; difficulties with access to transport and services; lack of support for independent living; lack of support with parenting and caring roles. 

 

What are the unmet needs/service gaps?

Valuing People recognised that people with learning disabilities have the right to lead lives like any others with the same opportunities and responsibilities.  People with learning disabilities want to be recognised as people first.  With regard to accessing care services, the same criteria applies – people with learning disabilities have the right to expect the same standard of health and social care services as everyone else. Where they need some more support, then reasonable adjustments to services should be provided.

 

What should we be doing next?

1.    Health

 

Tier 0 - Community, public health and strategic approaches to care

 

All the evidence shows that the major causes of lower life expectancy amongst the general population in Bedford Borough are cancer and coronary heart disease.  Adults with learning disabilities have poorer health and poorer support.  The rates of cancer, coronary heart disease, and respiratory disease amongst people with learning disabilities are rapidly increasing.  Specific action needs to be taken to increase the numbers of adults with learning disabilities to engage with health promotion and disease prevention programmes

 

Recommendations

  • Health facilitators to provide appropriate support and training for all primary care staff and services who are making reasonable adjustments for people with learning disabilities
  • All adults with learning disabilities to be flagged within services
  • All adults with learning disabilities to be identified across cancer networks in order to ensure maximum uptake in screening programmes;
  • Use the five key core information principles suggested by the Office for Disability Issues to make reasonable adjustments to invitations for screening sessions for breast, bowel and cervical cancer :

 

                              i.    Ensure that disabled people are involved from the start

                             ii.    Provide information through a range of channels and formats

                            iii.    Ensure your information meets users’ needs

                           iv.    Clearly signpost other services

                            v.    Always define responsibility for information provision

 

These changes will comply with the Disability Equality Duty (DED) which came into force in December 2006, and requires all public bodies to look at the impact on disabled people of everything they do.  Good practice guidance on breast and cervical cancer screening for women with disabilities is available from the NHS Cancer Screening programmes website:

 

http://www.cancerscreening.nhs.uk/publications/bsp46-csp13.html

 

  • Develop programmes specifically targeted at adults with learning disabilities and their carers to raise awareness of the dangers of coronary heart disease because  of poor diet, lack of physical activity, and smoking; for example, working with partners in Bedford Borough to encourage adults with learning disabilities to make use of sports facilities;
  • Target people with learning disabilities for inclusion in flu vaccination programmes, particularly given the evidence of high mortality rates from respiratory diseases;
  • Consider how the Health Equity Audits will include evidence of health inequalities facing people with learning disabilities, and the actions to address these.
  • Transitions into Adult Life – to  ensure a smooth transition of young people with a learning disability from Children’s Services to Adult Services:

 

  1. A protocol to ensure Integration between all agencies and funding organisations during the transition period
  2. Person Centred Planning so that young people are fully engaged with the process of achieving their own lifestyle
  3. Funding for care packages follows the young person into adult services
  4. All information about services and support in adult services is made available to the young person by the age of 14, plus advocacy support to empower decision

 

Tier 1 - Primary care and directly accessed health services

 

In the past specialist services have provided general healthcare to people with learning disabilities.  This situation has changed with the implementation of the Valuing People recommendations, and more adults with learning disabilities now access general healthcare in the community.  However, there may be many more people with a learning disability who are still unknown to primary care.  This results in exclusion from NHS services and unmet health needs.  Specific action needs to be taken to ensure equity of access to primary care and directly accessed health services

 

Recommendations

 

  • Health facilitators to provide appropriate support and training for all primary care staff and services who are making reasonable adjustments for people with learning disabilities
  • Systems are in place to ensure all adults with learning disabilities are identified  by appropriate read codes, within GP registers and across all healthcare settings
  • Systems are also in place to identify older family carers, parents or carers with a learning disability, on GP registers
  • Systems are in place to identify adults with a learning disability, and their carers, from ethnic minority groups
  • All GP services to sign up to existing DES to collect ethnicity data, which will include adults with learning disabilities.  It is particularly important to begin collection of ethnic minority data, as the prevalence of learning disabilities in the south Asian population continues to increase;
  • 100% of GP practices in Bedford Borough to sign up to DES to provide adults with a learning disability on their list with a regular health check.  Existing arrangements mean that only adults with a learning disability known to social care are invited to attend a health check.  This means that those not known to local services may be subject to unmet health needs;
  • All adults with learning disabilities are offered a Health Action Plan which is based on a comprehensive health check.  This is not only helpful for adults with learning disabilities who may have communication problems, but it should be used in an acute care setting.  It is reasonable to suggest that a Health Action Plan should be available to young people from the age of 14, when the transitions process from Children to Adults services begins;
  • Each GP practice carries out annual reviews of adults with learning disabilities who have heart disease or diabetes
  • A structured diabetes programme is put in place, to include retinal screening for early detection of diabetic retinopathy
  • Systems are in place to ensure that adults with learning disabilities at risk of dysphagia are screened and assessed to determine vulnerability and that a care plan is in place with regular reviews

 

Tier 2 - Health services accessed via primary care

 

Adults with learning disabilities need to be able to access services outside their GP surgery, such as dentists, opticians, and chiropodists

 

 

Recommendations

 

  • Health facilitators to provide appropriate support and training for all primary care staff and services who are making reasonable adjustments for people with learning disabilities
  • Health action plans should include dental, optical and chiropody care
  • Bedfordshire Clinical Commissioning Group and dentists will need to work more closely together to ensure that services are commissioned for the best outcomes for people with learning disabilities.  This will mean commissioning evidence-informed preventive services for oral healthcare, but will also include minor reasonable adjustments such as increasing appointment times for people with learning disabilities, and ensuring that their carers are consulted and included in decisions about treatment.  For special care dentistry, the British Society for Dentistry and Oral Health have developed a model of best practice: (http://www.bsdh.org.uk/misc/commissioning_tool_for_special_care_dentistry.pdf) which demonstrates the importance of commissioning specialist care dentistry for people with learning disabilities;
  • For adults with learning disabilities attending outpatient, domiciliary and in patient services, ensure that all hospital appointment bookings are for the convenience of the patient, with accessible and understandable systems, and staff operating them trained to communicate appropriately
  • Where access to hospital treatment is required, is the acute sector using the following as benchmarks of good practice:

 

o   Systems are in place to ensure that all adults with a learning disability admitted to hospital are identified with appropriate read codes;

o   Good, clear up-to date information using a variety of methods is available at an appropriate time to support access;

o   Access to specialist knowledge and skills will be available 24 hours a day;

o   All staff will treat individuals with respect all of the time

o   Patients and carers receive the support required for that period of care;

o   Comprehensive up to date information accompanies the patient to allow for continuity and co-ordination of care:

 

                              i.        All practicable steps are taken to communicate effectively with patients and their carers;

                             ii.        All staff undertake training / development to raise their awareness of learning disabilities;

                            iii.        Patients/clients have access to the equipment need to meet their individual needs and are supported to use it;

                           iv.        Patients/clients are cared for in an environment that balances safe observation and privacy;

                            v.        Patients’ needs for activity are assessed and provided for on an individual basis.

 

  • Service level agreements with providers of general, specialist and intermediate health care include a section on how services will be responsive to people with learning disabilities, and to demonstrate evidence of how they will use complaints to improve services.  All providers to be asked to report regularly to the Bedford Borough Learning Disability Partnership Board on their action plans and improvements

 

Tier 3 - Specialist locality health services

 

Recommendations

 

  • Health facilitators to provide appropriate support and training for all primary care staff and services who are making reasonable adjustments for people with learning disabilities
  • ·   Specialist community services must be developed further for people with complex and continuing health needs who can live in the community, but who will need support.    Commissioners need to ensure that investment in specialist community health staff (and other forms of community based support) is commensurate with a strong community infrastructure to support people with complex needs living in their own homes
  • ·   Mental Health - Valuing People confirmed that the Mental Health National Service Framework (1999) equally applies to adults with learning disabilities with additional mental health problems.   This inclusive approach means that adults with learning disabilities and mental health problems are entitled to expect: 

 

                      i.        Skilled assessment of their mental state and effective treatment options

                     ii.        Assertive outreach support or crisis resolution support 24 hours a day if they have severe and enduring problems

                    iii.        Mental health promotion materials in a format that is understood

                   iv.        Full involvement in their care planning

                    v.        A single care plan drawn up by health and social care as one

                   vi.        A copy of their care plan

                  vii.        Services to be coordinated through the Care Programme Approach

                 viii.        Good mental health support through primary care services

                   ix.        Support to access, employment, education and leisure opportunities

                    x.        Single sex in-patient provision, including secure provision, as close to home as possible

                   xi.        An after-care plan when leaving in-patient provision showing how to access emergency support

 

To deliver the Mental Health NSF, learning disability services and mental health services must work together to deliver a service which runs across primary care, specialist learning disability and generic mental health services, in the voluntary and public sector.  Services for people with learning disabilities and mental health problems will no longer be delivered in specialist facilities, but when they are necessary, these services should be close to home.    The Green Light Toolkit provides best practice on what mental health support services should look like for adults with learning disabilities, and will help develop commissioning plans within Bedford Borough.

Tier 4 - Specialist area health services

 

Recommendations

 

  • Complete and implement a review of specialist learning disability services in line with national guidance and best practice
  • For those people who, despite all the measures to support local community care as per Winterbourne report recommendations, need access to an inpatient bed, appropriate investment in services will ensure that:

 

                      i.        Inpatient services are close to home

                     ii.        Inpatient services are part of the whole system of service delivery and have a defined place and purpose

                    iii.        Services can demonstrate their relevance to local needs

                   iv.        Where services cannot be provided close to home, then people are access assessment and treatment without long waiting periods or recourse to services a long way from home.  It may be possible to achieve this by working with neighbouring CCGs

                    v.        Care pathways do not result in patients being “stuck” in assessment and treatment beds

                   vi.        Inpatient services should be person centred, high quality and provide evidence based assessment and treatment with demonstrable positive outcomes for people

 

  • ·   Forensic services should give consideration to:

 

                      i.    Linking to specialist learning disability and mental health services (including alcohol and substance misuse programmes)

                     ii.    The interface with the criminal justice system such as police, probation and courts and support to court diversion initiatives

                    iii.    Involvement of other agencies such as housing, employment and education to help facilitate pathways away from the criminal justice system

 

  • ·   HM Prison Bedford – implement the recommendations of the Prison Reform Trust in their series of reports No One Knows, particularly:

 

                      i.        Improve identification of a learning disability by improving information sharing with agencies involved with prisoners prior to movement to HM Prison Bedford, ideally information coming from point of arrest

                     ii.        Identify workforce needs implications, possible staff training, including appropriate use and understanding of terminology, raised awareness and identification of a learning disability and implement action as determined

                    iii.        Establish whether services and information are appropriate for those with a learning disability

 

  • ·   Continuing health care - adults who may need health care for a long time should not find themselves in NHS beds for continuing care unless they have highly complicated or unpredictable health care needs, or a rapidly deteriorating or unstable or terminal medical condition which requires regular supervision by medical staff.  Where possible adults with continuing health care needs should:

 

                      i.        Receive individually designed services which respect each individual’s needs and wishes

                     ii.        Have their health care needs met at home or in care homes

                    iii.        Where there are challenging needs, these should be met with “ordinary housing and support services, in the least restrictive environment possible, with opportunities to meet full and purposeful lives (Valuing People, 2001)

 

Social Care

Housing

 

Those who plan and commission services need to develop creative solutions to meeting housing aspirations for people with learning disabilities.

 

Considerations should be given to:

 

  • Definition of  “progression focused strategy” for people with learning disabilities by establishing clear pathway and capacity on the spectrum from hospital to independent living.
  • All practitioners, providers and parents should buy into and act to support the “progression model” starting with transitions assessment. 
  • Work with housing associations and lenders to make house ownership a possibility for those who choose it.
  •  Exploration of how people assessed and funded as needing NHS continuing health care can be supported to stay in their own homes, with intensive health input as required.
  •  Work with Supporting People programme to review how people with learning disabilities benefit from locally planned and delivered housing related support to live as independently as possible.
  • Work with local authority LD team members to have an increased focus on home ownership and assured tenancies as a model for housing and support
  • Have a working system in place for transition plans and year 9 reviews to inform future accommodation planning and commissioning

 

Assistive technology

 

Technology offers real potential for supporting people to stay in their own homes. Simple gadgets can make all the difference to a person’s comfort and feeling of security. Assistive technology covers things like door alarms, pressure mats and room monitors as well as outsize remote controls and devices to help in the kitchen which all help people with learning disabilities to maintain their independence.

 

Telecare is provided at a distance using information and communication technology to manage the risks associated with independent living. Telecare can help people with learning disabilities be more independent and give carers more personal time. 

 

Telemedicine is monitoring vital signs like blood pressure, and transmitting information to a response centre, where the results can be reviewed by a clinician.

 

Consideration should be given to:

  • Review how assistive technology process (referral, assessment, expertise) supports people with learning disabilities
  • Assistive Technology expertise in the learning disabilities social work team

 

 

Employment and Day Opportunities

 

People with learning disabilities want to lead ordinary lives and do the things that most people take for granted. They want to study at college, get a job, have relationships and friendships and enjoy leisure and social activities.

 

When done properly, person centred approaches, support planning and personal budgets can make a significant difference in people’s lives.

 

Consideration should be given to:

 

  • All people with learning disabilities are able to access direct payments if they wish to.
  • Regular feedback on ease of access, usage and support with direct payments to improve the experience for people with learning disabilities
  • Learning Disabilities Partnership Board should review the person centred planning in light of the person centred planning best practice guidance.
  • Design and implementation of Day Opportunities and Short Breaks policies

 

Employment

 

3.21     Work helps to defines us: what will you be when you grow up? What do you do for a living? These are questions we all face from others when people want to get to know us. They are questions seldom directed towards people with learning disabilities. So few people with learning disabilities work and there is little expectation from others that they can.

 

3.22     It is important therefore to increase the number of people with learning disabilities in employment:

 

Consideration should be given to:

  • Full implementation and delivery of the comprehensive supported employment strategy to increase number of people with LD in employment.
  • Promotion of the fact that people with learning disabilities can work and have careers from an early age via transition process planning.
  • Reinforcement of work aspirations through good career and skills preparation for younger adults in transition
  • Use of personal budgets for employment support

 

Social relationships

 

3.23     People with learning disabilities have the right to have relationships, become parents and continue to be parents.

 

Consideration should be given to:

 

  • Review how local safeguarding processes encourage and support positive risk taking, which, if desired, should be a part of everyone’s life, including those with more complex needs
  • Review and delivery of the training for the local system about supporting people with learning disability with their sexual relationships including contraception
  • Review how local parenting programmes support parents with learning disabilities

 

Excellent and Safe Services

 

Winterbourne report revealed national challenges about quality and safety of services for those who are the most vulnerable. Safeguarding is everybody’s business.

 

Consideration should be given to:

 

  • Work with local  care providers to improve the level of expertise to support people with highly complex and profound disabilities
  • Evaluation of “circles of support” model for people with learning disabilities
  • Access to specialised support and services close to home where needed, alongside more mainstream support or as part of an inclusive and individualised package.

 

People with learning disabilities from black and minority ethnic groups and newly arrived communities and their families often face what is called ‘double discrimination’. They experience insufficient and inappropriate services. This may be caused by:

 

1.    policy and services which are not always culturally sensitive;

2.    wrong assumptions about what certain ethnic groups value;

3.    language barriers; and

4.    discrimination

 

Consideration should be given to:

 

  • development and monitoring of LD equalities scheme to show how people with learning disabilities from ethnic minorities access local health and social services.
  • People with learning disabilities and autistic spectrum conditions need support that responds to their individual needs, from staff with understanding and experience of working with them.

 

Consideration should be given to:

 

  • Expertise of how local services address the specific needs of people with learning disabilities and autistic spectrum conditions.
  • Regular updates on delivery of the local autism plan at Learning Disabilities Partnership Board

 

Winterbourne

 

  • Consideration should be given to implementation of the Winterbourne Report recommendations in Department of Health defined timescales

 

Getting Involved

 

Consideration should be given to:

 

  • Review/preparing of  ‘Engaging People with a Learning Disability and Family Carers’ policy” so that people are positively supported to contribute to the work of BCCG and Local Authority
  • Engagement of people with a Learning Disability in recruitment, training, and monitoring of services
  • Work with local advocacy providers to ensure that all people with learning disabilities are aware of the advocacy support
  • Review of local transport provision in the context of best practice - Inclusive Mobility – A guide to best practice on access to pedestrian and transport infrastructure
  • Work with local police on regular updates on hate crimes against people with learning disabilities to inform local services

 

1.    Transforming Care - Care and Treatment Reviews (CTR)

 

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 who display behaviour that challenges, including behaviour that can lead to contact with the Criminal Justice System.

 

Forming part of this wider piece of work around the ‘Transforming Care Agenda’ The final Care and Treatment Review: Policy and Guidance was published by NHS England on 22nd October 2015.

 

This policy sets out the expectation for implementation of Care and Treatment Reviews (CTR’s) for people with learning disabilities in England.

 

CTR’s have been developed as part of NHS England’s commitment to improving the care of people with learning disabilities with the aim of reducing admissions and unnecessary lengthy stays in hospitals and reducing the health inequalities.

The aim of the CTR is to bring a person centred and individualised approach to ensuring that the treatment and differing support needs of the person with learning disabilities and their families are met and that barriers to progress are challenged and overcome.

 

CTR’s bring together those responsible for commissioning and procuring services for individuals who are at risk of admission or who are inpatients in specialist learning disability hospitals.

 

CTR’s are coordinated by the NHS but involvement of Local Authorities in the CTR process and its outcomes are necessary for improving care and treatment for people with learning disabilities and their families.

 

Bedfordshire CCG have coordinated 9 CTR’s for Bedfordshire patients since implementation in October 2014. Out of the 9 CTR’s, there were 4 for Bedford Borough.

 

The implementation of CTR’s across the patient care pathway aims to:

  • Support people with learning disabilities and their families to be listened to and be equal partners in their own care and treatment pathway.
  • Identify barriers to progress and to make clear and constructive recommendations for how these could be overcome
  • Ensure all parties work together with the person and their family to support discharge into the community at the earliest opportunity. Local Authority involvement in all CTR’s is best practice, ensuring that relevant issues can be fully addressed and all solutions explored for the safe discharge of individuals into community based settings.
  • Support a constructive and person centred process of challenge to current care and treatment plans where necessary.
  • Ensure any admission is supported by a clear rationale of planned assessment and treatment together with defined and measurable outcomes.
  • Prevent people with learning disabilities being admitted unnecessarily into inpatient specialist learning disability hospital beds.

 

References

Department of Health, (2001) Valuing People: A strategy for learning disability for the 21st century. London: The Stationery Office

 

Centre for Disability Research (CeDR), (2008), Emerson E and Hatton C, People with Learning Disabilities in England. Available at :

National Adult Social Care Intelligence Service (NASCIS), (2014) Expenditure Report 2013-14

Bedford Borough (625). Available at: https://nascis.hscic.gov.uk/

National Adult Social Care Intelligence Service (NASCIS), (2014) Measures from the

Adult Social Care Outcomes Framework (ASCOF): Comparator Report 2013-14.available at

https://nascis.hscic.gov.uk/

 

National Adult Social Care Intelligence Service (NASCIS), (2014) Use of Resources Report 2013-14.Bedford Borough (625). Available at: https://nascis.hscic.gov.uk/

 

National Development Team for Inclusion (NDTi), (2013) Green Light Toolkit 2013. Available at:

http://www.ndti.org.uk/news/national-news/green-light-toolkit

 

Prison Reform Trust, (2008) No one knows. Available at http://www.prisonreformtrust.org.uk/Portals/0/Documents/No%20One%20Knows%20report-2.pdf

 

Projecting Adult Needs and Service Information (PANSI) Available at:   http://www.pansi.org.uk/index.php?&PHPSESSID=qgtra8s6huq26qd8on0b88scp5&areaID=8640

 

Projecting Older People Population Information System (POPPI) Available at:  http://www.poppi.org.uk/index.php

 

Public Health Knowledge Gateway, (2014) Improving Health and Lives (IHAL) and Longer Lives profiles available at:

http://healthierlives.phe.org.uk/topic/mortality

http://www.improvinghealthandlives.org.uk/

 

Office for National Statistics (ONS).  Available at: http://www.ons.gov.uk/

Transforming Care for People with Learning Disabilities – Next Steps (2015)https://www.england.nhs.uk/wp-content/uploads/2015/01/transform-care-nxt-stps.pdf

 

 

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