A4.16 Community context
The focus of this study was inpatient care. However, it was clear from interviews with both families and clinicians that any discussion about the need for inpatient provision could not be divorced from community service provision. Detailed information and opinion was given as to current community LD CAMHS and related services, and how this impacted on current and future inpatient provision. This is summarised in A4.16.4 and A4.16.5. This section, however, begins with a summary of information/opinion provided by participants about community services and more detail (A4.16.1 – A4.16.3) on issues most directly related to inpatient care.
Summary - Community LD CAMH services provision
1. Despite children and young people with learning disability having some of the most severe and complex needs of any group, they have inequitable access to mental health service provision and behaviour management advice:
a. Compared to children/young people without learning disability
b. Compared to adults with learning disability
2. Children and young people with learning disability need improved access to:
a. Early interventions
b. Multidisciplinary community teams
c. Intensive treatment services
3. Where there are no specialist LD CAMH services in place, CAMH teams lack the multidisciplinary experience and expertise to offer adequate assessment and treatment. This risks overuse of psychotropic medication in the absence of alternative interventions.
4. Need for admission or intensive home treatment (and the associated complexity of establishing arrangements) takes over the working life of clinicians and impacts on their care of other patients in the community.
5. Likely to be considerable hidden and unmet need due to lack of referrals to existing CAMHS services that are not set up to meet the needs of those with LD.
6. Pediatricians, schools and social care services are often left to manage without appropriate mental health support.
7. A need for more individualised robust, 'autism-friendly' physical environments across health, education and social care settings.
A4.16.1 Local provision and access to specialist knowledge
There was a general view amongst participants that access to community mental health /behavioural services needs to be improved for children and young people with learning disability and/or autism spectrum disorder in Scotland. Limitations were described in adult LD services, but this was felt to be far more so for children and adolescents with learning disability. A need was described for more "pairs of hands" in local services to reduce the need for admission and to implement recommendations from any specialist unit, both via consultation for outpatients and for those discharged following admission. Concern was expressed by one clinician that developing a specialised in-patient service did not take the focus away from the pressing need to develop adequate community services, including provision of physical health care and co-ordination of services.
Very much earlier outpatient/intensive interventions may have altered the course of this child's difficulties which continued to escalate throughout childhood and adolescence. The lack of access to LD CAMH services within the residential school was also a key factor.
Clinicians from remote/rural areas tended to very much see it as their role to see all children and young people with learning disability and/or autism spectrum disorder, recognising the relative rarity of those with very complex needs. However, they were also amongst those most keen to have support and consultation from a specialist centre.
Several clinicians mentioned the complexity of mental health /behavioural issues for children with learning disability and/or autism spectrum disorder. The majority also have complex physical and mental co-morbidities. The detailed work required to assess and provide interventions in the community is therefore very time intensive. Clinicians advocated that adequate resources were required for CAMHS to be managing these cases appropriately in the community as well as during inpatient care.
A4.16.2 Intensive community LD CAMH services
The development of community CAMH intensive treatment services ( ITSs) has been encouraged across Scotland and there has been some success in reducing the need for inpatient care for some young people. However, these services generally have little expertise in working with children and young people with more severe levels of learning disability and autism spectrum disorder, particularly with high levels of complexity and challenging behaviour. Some exclude children and young people with learning disability altogether from their service. Outpatient clinicians reported therefore being left alone to handle complex and crisis cases, who warranted ITS or inpatient services.
Participants in the study advocated for LD CAMH ITSs to be developed to prevent the need for some admissions. Where present (so far only in Lothian) these services have helped prevent a number of admissions. Two examples were specifically given as submissions to the study where support by nursing staff in the family home, respite or residential school/care facilities successfully prevented admissions to hospital. These were both for young people with moderate learning disability and autism spectrum disorder with highly challenging behaviour but no additional psychiatric illness. Key to the success of one situation was the availability of an individualised, robust environment where specialist social care staff could care for the young person, closely supported by ITS staff.
However, LD CAMH ITSs were considered unlikely to prevent all admissions, for example where families are unable to implement strategies, even with support. It was not always practical or appropriate to have professionals ('strangers') spending long periods of time in a family home, including overnight, depending on its size, layout and the presence and needs of siblings. Some families find having professionals providing intensive health or social care support in their homes intrusive and difficult to engage with, thus limiting the effectiveness of services.
The Lothian LD CAMH Intensive Treatment Service has been affected by the need for nurses from the team to support admissions to hospital when these have been required. Some young people did require these hospital admissions, which have generally been to local adapted individualised facilities within adult LD units. However, a lack of suitable community social care provision for them to move on to has meant prolonged delayed discharges, seriously impacting on the LD CAMH ITS's ability to work with other children and families in the community.
A4.16.3 Individualised specialist environments in the community
It was not possible in interviews for clinicians and parents to describe mental health/behavioural services for children and young people with learning disability and/or autism spectrum disorder in isolation from social care and education partners. Whilst service configuration varied hugely across the country, it was clear that statutory and third sector organisations played a crucial and often leading role in behavioural support. It was evident that a lack of appropriate services in one part of the multiagency system had a knock-on effect onto others.
A lack of individualised, robust, 'autism-friendly' physical environments was a common issue across health, education and social care ( e.g. respite) settings. This was particularly for young people whose needs and behaviours meant that they needed to be separate from their peers for the majority or all of the time. Even where staff were highly skilled in working with young people with learning disability and autism spectrum disorder, the appropriate physical environment was often unavailable.
In a Health Board where such environments were more available and which had a developed LD CAMH service, there were very few hospital admissions primarily for 'challenging behaviour'. Only a relatively small number of cases were identified as requiring specialist LD CAMH inpatient admission and these cases had additional diagnosed mental health problems. In the case of another Health Board, it was felt that the majority of admissions would have been shorter and some avoided had robust, individualised community support packages been available for the LD CAMH community service to support patients in.
A4.16.4 Staff experience of learning disability and autism spectrum disorder
In those larger Health Boards where mainstream CAMH services see all children with learning disability, the lack of local specialist community LD CAMH services was seen as a problem. A consultant CAMH psychiatrist felt that a lack of training and expertise within the service means that multidisciplinary clinicians were nervous of this type of work. The psychiatrist in a team could be left managing cases, which felt isolating and hard to deal with on top of their usual work load.
CAMH psychiatrists usually had very limited experience with working with children with learning disability, although increasingly they may have had a 6 month placement with a specialist LD CAMH team during their training. Others may have had a 6 month adult LD training placement, but this may have been much earlier in their training. While this experience helps, it was clear that it was difficult to manage complex cases in the absence of a multi-disciplinary LD CAMH team.
In fact, it was notable in interviews that those who had such experience recognised and were able to articulate what was missing in their area and how the children would have benefited from such a service. Their training may therefore allow them to recognise what kind of assessments and interventions are required rather than have an ability to provide these. Frustration was expressed that they had to prescribe psychotropic medication in the absence of behavioural or other non-medical therapeutic interventions.
As the majority of respondents to this survey were psychiatrists, little information was gained for this study about the experience of those of other disciplines within CAMHS during their training of working with children with learning disability. Parents reported concerns about the skills and knowledge generally within the workforce for children and young people with learning disability and autism spectrum disorder.
In Boards where there was no specialist LD CAMH service, it appeared that referrals to CAMHS tended to be of those with milder degrees of learning disability. Community pediatrics would generally be quite involved, especially with children/young people with severe learning disability. Paediatric colleagues were left managing the more complex cases. This threw up concerns about safety and governance issues where psychotropic prescribing was being overseen by non-psychiatrists, for patients who have not had an appropriate psychiatric assessment.
Service configurations made for difficult 'boundary issues' between services, e.g. clinical psychology being provided from within CAMHS for those with autism spectrum disorder and co-morbid mental health problems, but from child health for those with learning disability. There could be difficult relationships across these services with children getting caught between them. Where professionals from different disciplines were not from one specialist team, multidisciplinary assessment, formulation and management of cases was less effective.
Where specialist LD CAMH services existed, clinicians commented on their fragility. Where there were very few clinicians with LD CAMH expertise, services and therefore children were vulnerable when these clinicians were off sick/ on leave. One remote rural area noted increasing gaps in learning disability expertise, particularly psychiatry across the age span. There were also a significant number of children and young people with autism spectrum disorder in that area who may not have a learning disability but where lack of knowledge and interventions from CAMHS created long standing issues. Many of these remained "under the radar" of health services with support given by education during school years. Some CAMH services reportedly struggled with those with autism spectrum disorder but no learning disability.
A4.16.5 Multiagency community services
It is not possible to describe or develop mental health/behavioural services for children and young people with learning disability and/or autism spectrum disorder in isolation from social care and education partners. Whilst service configuration varies hugely across the country, it is clear that statutory and third sector organisations play a crucial and often leading role in behavioural support.
Clinicians described many excellent local schools and respite services going well beyond their remit to support children and young people with severe and complex mental health/behavioural problems. They also provided high levels of support and advice to families. These partner agencies have often had to manage highly complex situations, including children/young people with undiagnosed mental illness/ neurodevelopmental disorder without adequate access to specialist mental health services. With a lack of coordinated multiagency strategic planning, specialist residential schools taking children from across the country with severe and complex problems have been set up in areas that lack LD CAMH services to support them.
Concern was expressed in this study about recent reductions in local authority and third sector resources for children with learning disability, e.g. schools having less access to auxiliary support. This was leading to systems breaking down more quickly and the perception reported was that local authorities were responding more slowly than in the past. This resulted in some young people, families and clinicians being in a form of limbo and with difficulties escalating to crisis point. Similarly, a lack of early intervention and LD CAMH community services across the tiers of service contributed to an escalation of problems for some young people. This eventually culminated in home and school placement breakdown and children being accommodated in residential schools far from home with untreated mental health problems persisting because of a lack of access to specialist mental health input in some of these schools as noted already.
Conversely, an example was given where an innovative robust support package from a third sector organisation meant that admission was not required for one young person, despite very high levels of challenging behaviour. As a result only an outpatient service, not even intensive level of involvement, was required from the LD CAMH team.
Parents' experience of education and voluntary organisations reflected some of these concerns in terms of how their young person was treated at school and in accessing it once in a mental health setting. A young person's education was described as "basically stopping at 14, he was left to struggle and when he couldn't maintain it any longer he was allowed to drift off. Since then he has really been too unwell to engage with any educational input".
A parent described the laissez-faire attitude of her child's school even when she tried to address with them some of her daughter's issues. Even after the daughter was admitted to hospital there was no follow-up or even an acknowledgement that she was no longer in school.
A parent talked about the lack of appropriate local schooling for her autistic child. The choices were very limited and the eventual placement "probably contributed negatively to the situation we are in now, his mental health seemed to decline once he was there".
Another parent's positive experience of her child's school illustrates how important it is for parents to have someone to talk to who understands the challenges their children can present, "the head teacher was fantastic, so supportive, and always ready to listen and to offer guidance. I know there were times when I only got through the weekend because I knew I could talk to her on the Monday".
Individual parents identified local voluntary organisations that were helpful to them primarily in providing emotional support and an understanding of the parenting challenges they faced. However, what worked for one family did not work for all. One parent reported how great the local carers' centre had been whilst another felt clearly " it was not for her".