The keys to life - Improving Quality of Life for People with Learning Disabilities

The new learning disability strategy in Scotland, following on from, and building on the principles and successes of The same as you?, the original review of service for people with a learning disability, published in 2000.

Complex Care

The term complex care is generally used to describe people with learning disabilities who require more intensive support and includes people with challenging behaviour, autism spectrum disorder, mental health needs, people with profound and multiple disabilities, offending behaviour, or a combination of these. The last two groupings are discussed in some depth in the chapters on people with profound and multiple learning disabilities and criminal justice.

Definitions and Numbers

Although much is written regarding definitions and descriptors of complex needs, the reality is that, any need is as relatively 'complex' as the ability of services to respond to it. The challenges can be minor to major and can be addressed in the community at times but in other instances in-patient support will be needed.

Definitions and criteria continue to be a source of ongoing debate as there is a legitimate view that someone whose behaviour presents a challenge may be doing so because their needs are not being recognised or responded to appropriately. The challenges take many forms including aggression, self-harm, destructiveness and disruptiveness. The term is also used when a person's behaviour puts them or those around them at risk of harm or leads to poorer quality of life.

But, as the Mansell Report118 made clear, quality services for people with learning disabilities should be able to provide sufficiently skilful support to prevent problems arising in the first place, to manage them when they occur and to implement relatively sophisticated long-term arrangements for management, treatment and support.

If this was the case, then specialised challenging behaviour services will then be able to focus on people who present the greatest challenges. It is those who present these severe challenges that this strategy focuses on. The most frequently used definition is that 'severely challenging behaviour refers to culturally abnormal behaviour(s) of such an intensity, frequency or duration that the physical safety of the person or others is likely to be placed in serious jeopardy, or behaviour that is likely to seriously limit use of, or result in the person being denied access to ordinary community facilities'119

Over the past 10 years Positive Behaviour Support has become internationally recognised as the most appropriate, person-centred, and value-based approach to challenging behaviour120. This includes functional assessment of behaviours, and the need for a range of proactive and reactive strategies to address the behaviour over time, recognising that for some people, challenging behaviour is a long-term and chronic issue in their support. Positive Behaviour Support is the recommended approach to supporting people with learning disabilities who also have behavioural difficulties.

Good practice

In order to address the recommendation from the Mansell Report on skilling up local agencies to increase their ability in supporting people with complex needs and significantly challenging behaviour, The Richmond Fellowship have developed and delivered a Professional Development Award in Management of Behaviour Support. This is a university accredited qualification in Positive Behaviour Support-the only one of its kind in Scotland.

For some people with learning disabilities and challenging behaviour, restrictive interventions may be necessary. Restrictive interventions, such as physical restraint, and other types of restriction e.g. seclusion, are still a significant element of support for people with challenging behaviour and complex needs; however there is a lack of clear guidance or standards for use, particularly for community-based social care services. This is a complex and controversial area, but the MWC provided guidance on the use of seclusion121 in 2007 and new guidance is expected soon.

Taking the eSAY figure of approximately 26,000 adults known to services as of 2011 and applying Emerson's suggested prevalence rate of 10-15% equates to between 2,600 and 3,900 individuals who may present such a challenge122.

Autism Spectrum Disorder

The Scottish Autism Strategy defines autism spectrum disorder as a lifelong developmental disorder that affects people differently, with some individuals being able to live independently whilst others will need very specialist support. It makes clear that what everyone with the condition will have in common is difficulty in three areas of functioning which are sometimes referred to as the triad of impairments. What this means is that people are likely to experience problems with communication and social interaction and may also exhibit restrictive, repetitive and stereotypical routines of behaviour.

Recent studies suggest that a rate of around 1 in 100 is currently the best estimate of the prevalence in children and adults123. Based on eSAY figures and an adult prevalence of around 20-33%124, there are between 5,200 and nearly 8,600 adults with learning disabilities who also have autism.

Mental Health

The Scottish Government Mental Health Strategy 2012-15125 is directed at both improving mental health and treating mental illness and many of the commitments made there apply to people with learning disabilities as to any other citizen.

Again terminology is problematic here but the Strategy defines a number of terms. The first is 'mental illness' where there is or may be a diagnosis of a particular condition within a document such as the ICD 10 Classification of Mental and Behavioural Disorders published by the World Health Organisation. The term 'mental disorder' refers to the broader category of personality disorder and mental illness which follows the definition made in section 328 of the Mental Health (Care and Treatment) (Scotland) Act 2003126. Under this section people with learning disabilities are defined as having a mental disorder. 'Mental health problems' refer to the more ambiguous territory which includes those with illness but also those facing challenges to their psychological wellbeing but who do not have a persisting mental illness or disorder.

MWC are notified of every person subject to compulsory treatment under the Mental Health Care and Treatment (Scotland) Act 2003, the Adults with Incapacity (Scotland) Act 2001127 and the Criminal Procedures (Scotland) Act 1995128. The MWC carries out a Learning Disability Census every two years which highlights the numbers of people with learning disabilities who are subject to compulsory treatment. In 2008 the figure was 272, in 2010 it was 338 and in 2012 it was 351. In terms of the latter figure, 78% (272) were in-patients of which 89% (242) were in specialist beds and 25% of whom had an additional diagnosis of autism or probable autism. The Commission do not hold figures on those that are not compulsorily detained.

It is also known that people with learning disabilities tend to be subject to compulsion for longer than those without. In 2010, the median length of compulsion for those with learning disabilities was 3.5 years compared with 1.7 years for those without learning disabilities.

It is crucial to have well planned, robust and agreed eligibility and admission/discharge criteria, care pathways and interface between general psychiatry and learning disability services for people with mental health problems to ensure that people with learning disabilities receive the most needs responsive services.

Progress on complex care delivery since The same as you?

This section attempts to describe progress since The same as you? in terms of complex need but in so doing does not break down the commentary into specific observations on assessment and treatment or forensic or challenging need. Whilst it focuses primarily on NHS provision there are aspects that refer to both local authority and care home provision. The aspiration here is to provide a high level set of observations on which to build the considerable and sustained work that is still needed.

The same as you? acknowledged that in closing long-stay hospitals that there would still be a need to retain a small number of in-patient beds. These were identified as being for a range of specific purposes. The first was for those whose need for specialised or complex health assessment or treatment could not be met in the community (probably not more than 150 to 200 people in Scotland). The second group was people on statutory orders some of whom will be offenders with mental health problems. The third group was a small number of people whose treatment may be lengthy or who need a more supportive setting for a long period.

An annual single occasion survey of the use of learning disability In-patient services has been carried out since 2007129 with the support of the Royal College of Psychiatrists in Scotland. Since 1980, there has been a reduction in adult in-patient beds from over 7,000 to the May 2012 census figure of 318. This figure falls within The same as you? estimate of a requirement of between 300-400 places across Scotland.

The same as you? also recommended that Health Boards should aim to reduce their assessment and treatment places specifically for people with learning disabilities to four for every 100,000 population across the country as a whole and that they should plan for appropriate community services to avoid in-patient assessments and treatment.

Considering the information from the 2012 single occasion survey,

half of Scotland's NHS Board areas appear to have met this target whilst there are five Boards who have more than double the number of recommended In-patient beds.

The same as you? also recommended that Health Boards with sites remaining after 2002 should develop, with their partners, other services in the community as a priority and set aside resources to meet these costs.

Although the programme of closure of long-stay hospitals for people with learning disabilities was realised by the mid to late 2000s, some NHS Boards have still not made community-based service re-provision for individuals in 'longer-stay' NHS residential services as opposed to In-patient assessment and treatment beds, and some of these longer-stay beds remain on the geographical site of the former long stay hospitals.

Of the 318 individuals identified in the 2012 survey, 52 individuals have been placed out of local learning disability services. Additionally, 78 of these 318 have been admitted to current In-patient services directly from long-stay Hospitals and 97 individuals had been in 'hospital' for more than 5 years. 88 individuals (around 27%) were categorised as delayed discharges.

Delayed Discharge

A delayed discharge occurs when a person cannot be discharged from hospital once treatment has been completed because care in a more appropriate setting is not available.

Delayed discharge is a common challenge in most European nations and one that few healthcare systems have successfully eradicated. Significant progress has been made in Scotland since numbers peaked in October 2001. At that time there were 2,162 people delayed for more than 6 weeks and the average length of delay was 153 days. This compares with January 2013 when 57 people were delayed for more than 6 weeks and the average delay had reduced to 21 days.

However, it is clear that too many people still wait too long to be discharged from hospital once treatment is completed. New targets have been set for the maximum timescale for delays, and no person should now be delayed for longer than 28 days. This will reduce to 14 days by April 2015. Integration of adult health and social care will go a long way to reducing delayed discharges.

An important factor in the management of delayed discharge is the mechanism for reporting these numbers through a single NHS system with robust governance and performance frameworks. For people with learning disabilities leaving a period of hospital admission is often reliant on a multi-agency approach. This requires a joint reporting system between health and local authority partners. Having health & social care integration provides opportunities for local services to work more closely together in minimising any length of stay within NHS provision for people with learning disabilities.

Additionally, integration will provide opportunities to strengthen joint planning, commissioning, provision and governance in services for people with complex needs. There should be more early and intensive involvement with care providers in the planning and delivery of more specialist and individualised services and supports for people with complex needs.

The Scottish Government aims to support people closer to home, or within their own homes, avoiding hospital admission where ever possible is equally applicable to people with learning disabilities. For many people with learning disabilities this requires a flexible approach to prevent admission to NHS beds. However, for some people a prolonged period of challenging circumstances can lead to irretrievable placement breakdown and crisis resulting in admission to ensure safety and protection from harm.

On admission many people will have experienced a complete breakdown of their placement. Assessment and treatment can be a fairly quick process for some where a change of environment, medication review or more intensive support has been required. The process of discharge however may involve the re-commissioning of a complete package, identifying suitable accommodation and development of a support provider.

From the point of 'ready for discharge' where there is joint agreement between NHS and local authority colleagues discharges which are complex in nature can take an extended period of time to achieve. Where there are additional complexities or disputes over funding this can extend considerably.

Case study

John is a young man with learning and physical disabilities who is energetic enthusiastic and always on the go. He lived at home with his family until his late teens when he moved into his own home supported by a third sector provider. Initially, he established good relationships with his support staff but found it difficult to focus on everyday tasks. John wanted to make friends, to find a girlfriend and to be free from the stigma of constant support from others.

John began to challenge what he viewed as control and a focus on things that didn't interest him. He was frustrated at the lack of understanding others had of his speech and the relationship with his support staff began to deteriorate. He was determined to go out without support and often found himself in situations he hadn't planned for or couldn't cope with. A downward spiral of events led to a decision to initiate welfare guardianship.

Within a matter of months his placement broke down and he was admitted to a mental health facility against his wishes. He challenged the staff and attempted to leave. At this point it was difficult to envisage how he could be discharge to a community setting. John lived in this ward for nearly nine months before he was referred to the learning disabilities In-Patient Service and was transferred to a small unit. This was designed to look at feel like a flat, but was part of a bigger NHS admission service.

The staff team developed a support plan based on positive behavioural support and John found it easy to communicate with them. After about 12 months he was less impulsive, able to think through his decisions and plan his day, his relationships improved and his detention was revoked. A major challenge was his desire to live in another local authority area and the additional complexities surrounding this. John's discharge was becoming considerably delayed.

Senior NHS staff and local authority colleagues met him to consider what was required to fulfil his wishes. It would involve negotiations between a number of local authorities and an appraisal of the achievable options within a reasonable timescale. An action plan describing the milestones to be achieved and escalation of potential disputes would need to be developed.

Within three months an agreement was reached to provide support within a neighbouring local authority area and accommodation found. Support providers were introduced to the NHS team to establish a sound understanding of John's needs and his future needs. A discharge plan was agreed and date for discharge set. He is now settling in to his new life.

Out of Area placements

Individuals with challenging behaviour, complex mental health problems, autistic spectrum disorder and those who offend are at particular risk of being placed out of area130. Additionally there is a requirement for specialist education and/or specialist health care to be precipitant factors131.

Out of area placements for people with learning disabilities are not a new phenomenon (Allen 2008)132 and these appear to generally be a symptom of a wider systems failure which frequently includes lack of effective local service commissioning and response. There appears to be a variety of reasons for out of area placements, with the defining characteristic being a challenge to local authority and health services which they cannot meet. Although the statistics appear less robust from a Scottish perspective, there is on-going work to develop this data.

Such placements can have a significant impact on individuals, families, carers and services. The individual can be placed not only out of their local authority or health board area, but in many cases out of country, which has major implications for and challenges to, the sustaining of close relationships and quality of life outcomes. The 'Winterbourne View Review: Concordat: A Programme for Action'133 puts forward recommendations and commitments which might usefully be applied to a Scottish context in terms of the importance of retaining family links to ensure that individuals in out of area placements can be kept safe and have their needs met.

Out of area placements are generally high cost134 and generate significant issues around robust and transparent service monitoring, regulation and governance ; including the 'visibility' of quality outcomes for users of these services and even in some circumstances, incidences of abuse and neglect135 136 .

Furthermore, Allen asserts that, rather than being the result of any meaningful commissioning process, out of area placements are actually a consequence of an absence of one, and do not significantly provide a superior service.

Placement of people with learning disabilities out of local services into independent, private or other specialist services can also place a considerable, unplanned for, and immediate support demand on 'receiving' health and social care services.

The Mansell Report and its subsequent updating in 2007 provide clear policy and strategic guidance on the development of sufficiently responsive local services for people with complex support needs. It makes recommendations around service improvements, the need to produce better outcomes, demonstrate value for money and support the families and carers of people with complex support needs.

NHS Education for Scotland has helped to produce, 'The Psychological therapies Matrix' which is a guide to planning and delivering evidence-based Psychological Therapies in Scotland137 and which provides information on therapeutic approaches, service gaps and advice on appropriate governance arrangements. There is a need to continue to expand the evidence base relating to therapeutic interventions to support complex needs, with a responsively skilled workforce and workforce development strategies in place, informed by the support needs of individuals and significant demographic changes.

The Scottish Government has led a UK wide modernising learning disability nursing review - 'Strengthening the commitment'138. The review recommendations aim to develop and maximise the role of the learning disability nursing workforce to effectively support and care for people with learning disabilities across the life span; including those who have complex needs.

The SEAT region Managed Care Network Report on People with a Learning Disability with Complex Care Needs139, represents a model of care for people with complex needs which should be developed within the context of health and social care integration to provide a range of quality services that are effective, efficient and personalised as far as possible.

Good practice

NHS Education for Scotland has helped produce an educational resource, 'Working with People who have a Learning Disability and Complex Needs : The Essentials' ; which aims to offer workers supporting people with learning disabilities and complex needs opportunities to develop their knowledge, skills and values in ways that maximise the involvement of service users and families and increase health and wellbeing.

People with learning disabilities who have complex needs may require supports at any time of the day and night, and service responses may require to have a 24/7 capacity to respond if they are to effectively meet people's needs. In order to realise this there is a requirement for services to be planned and provided around robust care pathways, inter-service communications, individually planned, and corporately arranged proactive supports and crises responses.

In summary, although it may be the case that community based services and specialist teams for people with learning disabilities are becoming increasingly more responsive to meeting complex care needs at home, there remains a challenge to strengthen local capacity and competence around meeting complex needs. Some NHS Boards have by the provision of a specialist 'tier' of service, like additional support teams, to support local area service teams and services, but this model appears not to have been universally embraced and applied. It is up to services (health care, social care, justice and carer organisations) to coordinate their expertise to ensure that the individual's needs are met and that they do not remain inpatients after their need for this level of care has diminished. There is an extensive research base indicating that the complex needs described and discussed in this section, represent a significant challenge to community care and supports, and to inclusion in, and access to opportunities which enhance quality of life.

Recommendation 50

That NHS Boards and local authorities are required to develop Joint Discharge Agreement Protocols which are informed by the EDISON reporting system and include escalation for resolution of disputes, excessive delays and local and national planning for those for whom no alternative community placements exist. The possibility of including these in Single Outcome Agreements will be taken to the National Community Planning Group for consideration.

Recommendation 51

That a Short Life Working Group be set up to establish the Scottish data on out of area placements and report on its findings on how Scotland builds the capacity needed to deliver the specialist services required more locally with an outcome that by 2018 people with learning disabilities and complex care needs who are currently in facilities out with Scotland should be supported to live nearer their family in Scotland.

Recommendation 52

That the Scottish Government, COSLA and ADSW should scope public sector investment in high-cost care packages and explore opportunities for developing alternative models of provision by June 2015, including through self-directed support, and by developing housing with support, to improve outcomes for individuals and their families and ensure value for money.


Email: Julie Crawford

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