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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