5. What This Work Indicates
5.1 Service size of a Scottish LD CAMH inpatient unit
The minimum recommended bed numbers for a Scottish LD CAMH inpatient unit based on results of this survey and other sources are 12 beds in total. These should consist of:
- 6 LD CAMH inpatient beds without additional security or individualised provision
- 3 secure LD CAMH inpatient beds
- 3 robust, individualised LD CAMH inpatient environments (bedroom and living space separate from other patients).
It should be noted that the 3 secure LD CAMH inpatient beds may be provided within a Secure/Forensic CAMH unit in Scotland, assuming appropriate environment and staff expertise. This would leave a 9 bed unit required for those with more severe levels of learning disability and complex needs.
The following sections show how these figures have been calculated and cross-referenced with other relevant sources of information.
5.1.1 Estimated bed requirements from survey evidence
45 children and young people were identified by this survey as requiring LD CAMH specialist inpatient provision. Of these:
- 29 required an LD CAMH specialist inpatient unit without additional security or individualised provision
- 9 (mostly with mild learning disability) required a secure LD CAMH inpatient facility
- 7 (with moderate/severe learning disability) required a robust, individualized LD CAMH inpatient environment, giving the option of nursing children and young people away from others when required.
If the lower reporting rates for the first 2 years covered by the survey are taken into account, 25% should be added on top of the numbers identified in the study, taking figures to 56 requiring LD CAMH specialist inpatient provision, of whom:
- 36 required an LD CAMH specialist inpatient unit without additional security or individualized provision
- 11 required a secure LD CAMH inpatient facility
- 9 required a robust, individualized LD CAMH inpatient environment
Based on these figures and aiming for an average length of admission of 6 months for the main part of the unit and 1 year for the secure/individualised parts, the following would be required:
- 4 LD CAMH beds without additional security or individualised provision
- 2 secure LD CAMH beds
- 2 robust, individualized LD CAMH environment beds
The above is based only on identified need from the survey (likely to be less than actual need for reasons given above) and a 100% bed occupancy rate. Taking these into account, the suggested minimum bed numbers for a Scottish LD CAMH inpatient unit would be:
- 6 LD CAMH beds without additional security or individualized provision
- 3 secure LD CAMH beds (these could be provided in the secure/forensic CAMH inpatient unit, given appropriate environment and staff expertise)
- 3 robust, individualised LD CAMH environments (bed and living space separate from other patients)
Some work has been done cross-referencing the secure/forensic CAMH inpatient needs assessment results with those from this study. This confirmed the overlapping populations of those children and young people with mild learning disability who have mental health and forensic issues. This highlights the need for the detailed planning of an LD CAMH inpatient unit to be carried out in close collaboration with the secure/forensic CAMHS inpatient developments, further described below.
Recommended bed numbers in this report are calculated on ideal rather than the current actual length of admissions for this patient group. In the survey, 50% of all admissions were longer than one year, often due to a lack of specialist community social care services to enable discharge. These bed numbers would therefore become quickly 'blocked' without additional measures being taken to provide such community provision alongside the development of the inpatient unit. Recommended bed numbers for a Scottish LD CAMH unit are therefore an absolute minimum requirement as a starting point for a unit and will need to be reviewed regularly according to bed use and development of community services.
5.1.2 Other evidence and recommendations regarding bed number requirements
These figures can be compared and cross-referenced with other evidence and recommendations:
- At the end of this 5 year survey, 14 children and young people remained in hospital. Some of these were by that time under the care of adult LD services and some may have been medically ready for discharge but awaiting suitable social care support in the community.
- The Mental Health and Learning Disability Inpatient Bed Census, 2014 ( http://www.gov.scot/Publications/2015/06/7555) identified 12 children and young people in Scottish beds with diagnoses of learning disability and/or autism spectrum disorder. It is not possible to distinguish which of these would require specialist beds not currently available. The figure does not include Scottish children and young people with these diagnoses who were inpatients outside of Scotland.
- The Royal College of Psychiatrists recommends the following: 'A total population of 1 million requires about 3–4 beds for young people with severe intellectual disabilities, 2–3 beds for those with mild intellectual disabilities and 1 bed for those who require low secure provision. The last is for those who require security because of the intensity of their disturbance or because of the risk they present to others and is distinct from medium secure beds'. (Royal College of Psychiatry, 2016). Taking 5,347,600 as the population of Scotland ( http://news.scotland.gov.uk/News/Scotland-s-Changing-Population-1c1d.aspx), this would equate to more than 18 beds for those with severe learning disability, 13 for those with mild learning disability and 5 for low secure beds.
- The increased spend year on year across the study period on specialist NHS beds in England via the NHS Scotland risk share scheme is also striking and this may additionally have been influenced by the following:
- A reduction in overall adult LD beds may mean that less children and young people have been able to be accommodated in local adult LD wards within their home Health Boards, resulting in more referrals out of Scotland to age-appropriate wards
- Clinicians may have a greater recognition of the need for age-appropriate inpatient care, also resulting in more referrals out of Scotland
- Government and Mental Welfare Commission guidance discourages admission of children and young people to adult beds
5.2 Age range catered for
The unit would be for children and young people under the age of 18 years, although there should be some flexibility about the age range, see below. Younger children would need to be nursed separately from older children, with space being used flexibly according to the patient mix at the time. Close liaison with the National Child Psychiatry Inpatient Unit would be required to decide the best unit for individual younger children referred. Ongoing consultation and support would be required from the National Child Psychiatry Inpatient Unit for those admitted to the LD CAMHS inpatient unit and vice versa.
Decisions about the most appropriate unit for older teenagers would also need a flexible approach, in close liaison with the young person, their family and adult LD services in the home Health Board. Adult LD services are more closely linked in with local adult social care services once young people leave school. In some cases, a young person needing admission shortly before their 18 th birthday, particularly if they have already left school, may be best served by their local adult LD inpatient facility. This can aid discharge planning and allow care providers to work with the young person on their local ward before discharge. In others, young people may remain at school until aged 19 and an LD CAMHS inpatient unit may better meet their needs, even if they are already aged 18.
5.3 Estimated average length of stay
A reasonable overall estimated average length of stay would be between 6 and 12 months, with significant individual variation. This estimated average length of stay is significantly longer than the average lengths of stay in the 3 regional YPUs and it will be strongly affected by care pathways, particularly discharge arrangements.
5.4 Service specification for a specialist LD CAMH inpatient unit
While it is beyond the scope of this needs assessment to develop a formal service specification for a Scottish specialist LD CAMH inpatient unit, this report contains much information to usefully inform development of the design of the physical environment, staff skill-mix, referral criteria, care pathways and interfaces with other inpatient and community services. The NHS England service specification for Tier 4 CAMHS inpatient LD services may also be used to inform a service specification for a unit in Scotland ( NHS Commissioning Board, 2013).
5.4.1 Physical environment
A developmentally appropriate physical environment is crucial, with education and recreation facilities and an ability to nurse some children and young people in individualised robust settings as described above in section 4.12.2.
Patients requiring access to an LD CAMH inpatient unit will have a range of ages, gender and level of learning disability. Consideration would also be required during the design of a unit as to how the physical space is best subdivided to allow children and young people to have suitable peer groups or individual space as appropriate. For example, a possible configuration may be:
- 2 x 3 bedded subunits for those who do not need secure or robust provision (could be allocated by age, personality/interests of children and young people, level of learning disability, mental health/behavioural presentation or gender, depending on patient need at any one time)
- 1 x 3 bedded secure subunit (note this may not be required if the needs of these patients are met by the secure/forensic CAMH unit)
- 3 x 1 bedded robust, individualised subunits
Whilst the individualized one-bedded subunits would be designed for those with severe destructive and aggressive behavior, they may also be used flexibly if required, for example for very young or vulnerable children who need to be nursed separately from other patients.
5.4.2 Staff skills
It is clear that additional skills are required in working with children and young people with learning disability due to the level, complexity and subtlety of diagnostic and treatment issues. Professionals need to understand learning disability, autism spectrum disorder and mental health issues and how they interact, in the context of childhood development and family systems. They need experience in working with children and young people with learning disability, their families and the multiagency services that endeavour to support them, They also need expertise in the physical issues associated with learning disability e.g. epilepsy, motor function, gastrointestinal disorders, which can all present with or complicate mental health and behavioural issues.
The following disciplines/services would be required as core members of a specialist inpatient service:
- Clinical Psychology
- Occupational Therapy
- Speech and Language Therapy
- Neurodisability Pediatrics
- Social Work
- Family support
5.4.3 Patient characteristics
From this survey, it would be anticipated that children and young people requiring the beds would be likely to have the following characteristics:
- Gender: 70% male, 30% female
- Age: 47% 16-17 years; 33% 14-15 years; 13% 12-13 years; 9% 11 or under years
- Level of learning disability: mild 27%; moderate 51%; severe/profound 22%
- Those requiring secure LD CAMHS beds would have mild or moderate learning disability and tend to be in the older age range
- Those requiring a robust individualised environment would have moderate or severe learning disability
The main reasons for children and young people being admitted to a specialist LD CAMH inpatient unit are anticipated as being for assessment and treatment of mental health issues where it is not possible for this to be carried out safely or effectively outside a hospital setting or in an existing Scottish CAMH inpatient unit.
High staff ratios would be required: 40% needing 1:1 care, 32% 2:1 care
Children and young people with mild learning disability could generally be expected to be managed on existing CAMH inpatient units, unless there is additional complexity or need for security. Where there is a need for security, they may be able to be managed on the proposed Scottish secure forensic adolescent mental health inpatient unit, given sufficient learning disability expertise and experience. However, where there is additional complexity and co-morbidity, an LD CAMH specialist unit would sometimes be more appropriate.
Some children and young people with moderate learning disability can access existing CAMH inpatient units, particularly where there is LD CAMH support or expertise amongst staff and a more typical mental illness presentation, without additional co-morbidity.
5.4.4 Co-location with other units
There is an identified overlap in the needs of the LD CAMH inpatient population and the Forensic CAMH inpatient population. Some of the former have forensic issues or need for additional security over and above that provided by YPUs or the National Child Psychiatry Inpatient Unit. Many of the latter have mild learning disability, autism spectrum disorder and other neurodevelopmental co-morbidities. There is a separate piece of work ongoing to develop a detailed proposal for a forensic mental health inpatient unit for young people; co-location of the two units would be helpful. For the LD CAMH inpatient unit, co-location on a site with existing adult LD wards is also essential.
5.4.5 Other service specification information
The NHS England service specification for Tier 4 CAMHS inpatient Learning Disability Service ( NHS Commissioning Board, 2013) can be used to inform the development of a Scottish service. Clinicians participating in the survey were not made aware by the 5 year survey team of this service specification. It is striking therefore that there is a high correlation between the NHS England service specification and the identified unmet needs of Scottish children and young people from this survey.
It is important to be clear that an inpatient mental health service for children and young people with learning disability is in no way intended to equate to the long term institutional hospital care of the past. Hospital admission would be for assessment and treatment of mental health and associated behavioural difficulties, as is the case for their peers without learning disability.
Given the complex physical co-morbidities of this patient group and their greater risks associated with psychopharmacology, an inpatient unit would need ready access to pediatric neurology and other acute pediatric specialties. A service-level agreement would be required for input, including arrangements for out-of-hours support. Out-of-hours psychiatry support will be required. Both of these factors would need to be taken into account when considering the location of a Scottish unit.
Clear arrangements need to be made for specialist education to be available to children and young people from all local authority areas admitted to a unit.
The crucial role of families and carers was clear from this survey. An inpatient unit must be designed to work closely with children and young people's families and existing carers to harness their expertise and personal knowledge of their child's personality, interests, strengths and needs. On-site accommodation and family support services would allow relationships to be maintained and for families and care staff to engage with and understand results of assessments. They can be further skilled up to implement support plans and manage their children's needs at home or in a local care setting.
5.5 Parallel developments required in services outwith an inpatient facility
The development of a LD CAMH inpatient unit, in the context of a time of integration of health and social care budgets and re-organisation at Health Board/Local Authority level gives an opportunity for collaborative planning of effective multiagency pathways and support within the GIRFEC (Getting It Right For Every Child) framework ( http://www.gov.scot/Topics/People/Young-People/gettingitright)
The complex inter-relationships between inpatient treatment, community treatment, education and social care provision were evident from this study, with deficits in one leading to difficulties in others. These 9 or 12 beds would quickly become inadequate and/or stop operating effectively as an inpatient treatment facility without parallel development of community LD CAMHS, particularly intensive community services and also specialist robust education and social care provision for the most complex children and young people.
Innovative models need to be considered to avoid delayed discharges, such as a social care/education facility located near the unit. This could provide expert input to inpatients and an interim placement for complex patients discharged from hospital where local services need more time and support to develop long term provision nearer to home. Such a facility would require health and social care to work in partnership.
5.6 Care pathways and interface of a Scottish LD CAMH inpatient unit with other services
The need for improved access to appropriate community mental health services for children and young people with learning disability was highlighted throughout this survey, including early intervention, outpatient and intensive community treatment services. An inpatient unit needs to be firmly linked into these services, with clear admission criteria/guidance and pathways for safe discharge. Local, regional and national services need to develop clear care pathways so that children and young people with learning disability can access the full range of health and social care services required. Work to develop an inpatient unit needs to also include the development of such pathways, which can be informed by the LD CAMHS Framework document (Appendix A2.2) and the 'Do once and share' care pathway (Pote & Goodban, 2007). An LD CAMH inpatient unit would need to be located on a hospital site with existing LD inpatient units, to provide staff back up and support, because it is clear from this survey that the patients with the most severe and complex needs have required nursing care from trained learning disability nurses.
5.6.1 Existing inpatient units
This study indicated that existing regional YPUs and the national under 12's inpatient provision of the National Child Psychiatry Inpatient Unit vary in their experience, knowledge and confidence in working with children and young people with learning disability. This is also dependent on physical environments and support available from specialist community services. Children and young people with even moderate learning disability can do well in 'mainstream' provision, with sufficient expertise in staff and where the child or young person has good verbal skills and a more typical mental illness presentation. For example, Skye House in Glasgow has a number of learning disability-trained staff working as part of the staff team.
It would be important for the presence of a national specialist LD CAMH inpatient unit not to 'de-skill' staff in existing units, but rather to play a role in training and support to encourage access to these units where appropriate. Clinicians from the existing units could be 'seconded' to a specialist unit and vice versa to learn and share expertise. Links with the National Child Psychiatry Inpatient Unit would be crucial in supporting expertise in dealing with younger children with complex neuropsychiatric presentation.
5.6.2 Forensic CAMHS
The need for a forensic/secure adolescent mental health inpatient unit in Scotland has been recognized and work is underway on proposals. The present study identifies the need for forensic/secure mental health inpatient care for a number of young people with learning disability and/or autism spectrum disorder. There is a clear overlap in the populations identified by this needs assessment and that carried out for the forensic mental health inpatient unit. The majority of children and young people with forensic issues and mild learning disability or autism spectrum disorder without learning disability were considered to be within the remit of a mainstream adolescent forensic mental health inpatient unit. The frequent neurodevelopmental co-morbidities between these groups were recognised. However, for them to access such a unit there would need to be sufficient expertise in learning disability, autism spectrum disorder and other neurodevelopmental conditions amongst the multidisciplinary staff group and an appropriate physical environment.
People with moderate/severe/profound learning disability with a need for security are generally not subject to formal court proceedings or considered the remit of forensic services but rather viewed as having 'challenging behaviour'. However, there are some common/overlapping needs between these groups of children and young people, for example, the need for some to be nursed in the type of robust, individualised setting described above.
Co-location of an LD CAMH inpatient with the proposed Scottish forensic CAMH inpatient unit would make sense to allow development of expertise, provide support and nursing back-up. This would also allow a range of expertise and flexible use of resources. Learning disability-trained staff are generally very experienced in managing those with autism spectrum disorder and other neurodevelopmental disorder and can support and could share these skills with staff working in forensic CAMHS. CAMH-trained staff working in a forensic CAMH inpatient setting may be more experienced in working with patients with mental illness and could provide support to a LD CAMH unit in working with some patients with learning disability and co-morbid mental illness. Both staff groups have experience of managing severely challenging, including aggressive and destructive, behaviours and could provide support and back up to each other where required.
Whilst patients with more severe levels of learning disability would need to be mostly kept separate from peers with forensic issues, both units could share the use of a number of facilities, for example, safe outdoor space, education and gym facilities. If a number of robust individualised environments were built, these could be used by children and young people with staff from either unit according to need.
5.6.3 Referral criteria
Clear referral criteria for a LD CAMH inpatient unit need to be developed in collaboration with community services nationally and in relation to other CAMH inpatient units. However, flexibility needs to be maintained so that the needs and circumstances of individual children and young people and their families can be fully taken into account. For example, the evidence from this study indicates that referral criteria should include the following general rules and associated exceptions:
- Most children and young people with mild learning disability requiring inpatient mental health care should be admitted to existing CAMH inpatient units; although a small number of those with more complex co-morbidities may need to access the LD CAMH inpatient unit.
- Most children and young people with moderate learning disability would need to be admitted to the LD CAMH inpatient unit, although this will vary according to the environment and staff skills within individual YPUs and the type of issues that the individual child or young person presents with.
- All of those with severe/profound learning disability require a specialist LD CAMH inpatient unit for assessment/treatment purposes. However, very brief crisis admissions for these and other children and young people may still be more appropriately supported by community clinicians on local wards.
- The vast majority of those with autism spectrum disorder (without learning disability) should be admitted to existing CAMH inpatient units where inpatient mental health care is required, except for those requiring security provided by the proposed forensic CAMH unit.
- A very small number of children and young people with autism spectrum disorder (without learning disability) may rarely require admission to specialist ASD inpatient care outside Scotland. This requires ongoing monitoring, enabling review of the situation for these children and young people.
- The needs of younger children should be considered on a case-by-case basis, in collaboration with the National Child Psychiatry Inpatient Unit. Generally, the National Child Psychiatry Inpatient Unit can effectively manage children with more severe levels of learning disability and complexity than the YPUs. However, in some cases a learning disability-specific setting is required. If younger children are admitted to the LD CAMH unit, support and consultation from the National Child Psychiatry Inpatient Unit will be invaluable and vice versa.
5.6.4 Outreach/support function to community LD CAMHS
Community clinicians participating in the survey were keen that any unit had an outreach and consultancy service. They were particularly enthusiastic as to the potential value of this where mainstream CAMHS see all children and young people, including those with learning disability and/or autism spectrum disorder, especially in remote/rural areas. Whilst providing a generic service, they recognised the need for specialist expertise in understanding and managing the complex needs of this group. These clinicians would welcome help from an inpatient unit in discussing complex cases and their management in the community, whether or not admission of an individual child or young person was ultimately required. They would also find a crisis support service for intensive/urgent advice helpful, although the logistics of this would need to be considered.
The outreach/consultancy function provided by the National Child Psychiatry Inpatient Unit was given as an example of good practice and a similar function recommended. Types of outreach supports suggested included telephone and video-linked consultations and team members to travel to local areas to carry out assessments and offer advice. These should all be multidisciplinary, including perspectives from nursing, clinical psychology, psychiatry (including prescribing advice), occupational therapy, speech and language therapy and neurodisability pediatrics. Advice from social work and education professionals from a unit could also be offered, where requested by local council or Health and Social Care Partnership colleagues.
Such an outreach/consultancy remit would enable the unit's team to often gain an understanding of individual patients' and families' situation well in advance of admission. Additionally, they would build up a knowledge of and relationship with local multiagency services. This would allow the local situation, services and geography to be more fully considered during assessment and treatment. The feasibility of recommended support plans following discharge could be more effectively taken into account. Where local services are limited, the unit would need to offer a more active role in training and giving outreach support to those implementing plans after discharge.
5.6.5 Other health services
Other local community child health and pediatric services would be an integral part of the network of an individual child's care and there would be appropriate liaison with these services across Scotland.
A unit would also need to have strong links with local/regional specialist pediatric services in the area in which it was located. The pediatrician and other medical staff from the unit team would need to be able to access specialist opinion, most commonly from pediatricians specialising in neurology, gastroenterology, ear, nose and throat and respiratory medicine.
The survey shows that a significant proportion of children and young people are older teenagers, with some moving on to adult learning disability services after discharge from hospital. Good working links with these services need to be made in the planning and development stages of the unit to enable smooth transition pathways.
5.6.6 Other agencies
Consistent with the findings of the 'These are our children' report (Lenehan, 2017), the complex inter-relationship between health, social care and education services in the care and support of these children and young people is evident from the survey. Deficits in one part of the system can lead to difficulties for others. For example, a lack of local mental health/behavioural services can lead to an escalation of difficulties resulting in home placement breakdown and an out of area residential school placement at high cost to the local council. These placements themselves may not have access to mental health services and in some cases have broken down leading to hospital admission. Or a lack of suitably specialist robust education or respite facilities may mean that children and young people may be stuck in hospital for many months or even years after their treatment there is completed. Only a small minority of admissions in the survey may have been prevented altogether by these types of education/care services, but their availability may have reduced the length of hospital stays and /or given intensive LD CAMH community treatment services an environment in which to work. Families also need suitable reliable respite and support in order to be able to implement the demanding strategies required to care for their children and young people at home.
Clinicians in the survey would find it helpful if a unit held a 'pool of information' available about services and placements as they can find it difficult and time consuming to keep up to date themselves. This could be utilised both to support discharge planning and to prevent admission where appropriate.
5.6.6 (i) New models of proactive multiagency working
The integration of health and social care budgets and organisation at Health Board/Local Authority and national level could be used as an opportunity to explore and understand these interactions. Planned earlier interventions from various agencies to manage and prevent escalation of difficulties in high risk groups should benefit children and young people, their families and lessen the number of high cost and out of area hospital and care placements. Multiagency economic analysis and outcome studies of early intervention/intensive community services are required to evidence the need for service development and reorganisation to better meet the needs of these children. Given the complexity and networks of services, collaborative multiagency planning and reorganisation at a strategic level is required to drive improvement.
A Scottish LD CAMH inpatient unit would need to understand and be linked in to relevant social care and educational services at local and national levels. These can be as diverse in their structure and degree of specialism as are mental health services for children and young people with LD. Links would need to be established in the planning stages of the unit to enable understanding of the unit's role and for effective relationships and pathways to be developed. Collaborative working within the ' GIRFEC' framework ( http://www.gov.scot/Topics/People/Young-People/gettingitright) and creative use of multiagency resources, e.g. via self-directed support, could be used to develop individualised support packages.
5.6.6 (ii) Supporting timely and effective discharge
Clinicians in the survey recognised the difficulty for some local authorities in developing the individualised specialist support required to discharge complex children and young people from hospital. Discussions during interviews led to a suggestion for an innovative development aimed at enabling timely discharge from hospital for children and young people and encouraging patient flow through the unit. This would involve the commissioning of a small residential care facility, with access to suitable education, in the community near to the hospital inpatient unit. Councils unable to offer a permanent local care package when a children and young people is medically fit for discharge would be able to purchase an interim placement at the care facility pending their local package being arranged.
The interim care facility could make shared use of education and other facilities with the inpatient unit. Care staff could be involved in providing outreach support and activity to the inpatients, using their skills to aid rehabilitation and inclusion for all inpatients. Thus the children and young people using the interim facility would be familiar with the staff and vice versa prior to transfer there. The inpatient multidisciplinary team would give outreach support to the interim unit, thus maintaining continuity of mental health care. For very complex children and young people and/or those with very challenging behavior, the care facility would be able to trial and demonstrate how to provide a robust and effective community care package. Social care and education staff could play a leading role in developing person-centred plans for future provision back in the family home or residential care provision. Local services can lack confidence in taking on very complex young people who have spent time in inpatient care. The interim unit's staff could have a specific remit to advise and train up the local care teams who will be supporting the children and young people on return to their local area, whether directly from the inpatient unit or via the interim care facility. This would enable sharing of multiagency expertise and a bridging of what can sometimes seem a large gulf between inpatient mental health and community social care provision.
5.6.7 Cross-border issues
Clear agreements and protocols will be required for cross-border arrangements for both Scottish children and young people and those from other UK jurisdictions. Issues were described around patients who are originally from England, but in care placements in Scotland. There appear to be increasing numbers of English (and possibly Welsh/Northern Irish) patients in Scottish secure care units, including some patients with learning disability and/or autism spectrum disorder. This also appears to be a trend in remote and rural areas where risk is managed by geographical isolation and high supervision rather than a secure unit per se. If a Scottish specialist LD CAMH inpatient unit is developed and such patients are detained into it, there will need to be good links and clear pathways to transfer where appropriate to beds in their home area.
With increasing pressures on LD CAMHS beds elsewhere in the UK, there will need to be protocols to deal with requests for admission of patients from outside Scotland to a Scottish unit.
Cross border issues are a particular concern for access to inpatient care for patients of any age who are on remand and not yet sentenced. They cannot be moved over the border to England for legal reasons therefore there is currently no access at all to age-appropriate inpatient mental health beds for CAMHS patients (including those with learning disability) who are on remand.
5.7 The LD CAMHS Scotland Network
A new LD CAMH inpatient unit must be designed to fit in with the existing networks of services, as well as later playing a role in supporting future community service development. A number of participating clinicians suggested using a clinical network approach to support the planning and development of an inpatient unit, ensuring that it is embedded within clear pathways of care in community services across Scotland, for example, learning from the successful role of the Forensic Network ( http://www.forensicnetwork.scot.nhs.uk/). The North of Scotland Tier 4 CAMHS (obligate) Network was also recommended as a model, formed to support the development of the new regional North of Scotland Young People's Unit in Dundee. Now the unit is open, the North of Scotland Tier 4 CAMHS Network continues to link regional community services, with inpatient care.
The LD CAMHS Scotland Network is a multidisciplinary, clinician-led network of now more than 200 clinicians, formed in 2008. It aims to improve access of Scottish children and young people to mental health services, by encouraging peer support, sharing of information and expertise, and supporting local and national service development. A committee has representation from all Health Boards and relevant disciplines. An e mail database allows information to be shared and for representative views to be gathered on national consultations. Annual meetings are held to share clinical and service development expertise. Discipline-specific groups within the network offer peer support and supervision.
The LD CAMHS Scotland Network, with funding for a network manager, administration support and lead clinician time, could be built on to:
- Support the development of an LD CAMH inpatient unit, its role, remit and service specification.
- Embed the new unit within pathways well connected to community health, social care and education provision across Scotland.
- Take forward training and workforce planning in conjunction with NES, to ensure sufficient trained staff for the unit and community services.
Once the unit is functioning, the Network could be based there to support links with local services and encourage patient flow. The Network would also:
- Play a strategic role in national and local community LD CAMHS organisation and development.
- Share the outcomes of the LD CAMHS Models and Outcomes Study and support Health Boards seeking to develop the identified promising service models.
- Advise Scottish Government on issues relevant to LD CAMHS.
- Link into other relevant work-streams, e.g. regional CAMHS Networks, CAMHS Lead Clinicians, GIRFEC, Adult LD and Autism Strategy, Education.
- Support the measurement of access to mental health services of children and young people with learning disability, e.g. via the Balanced Scorecard Key Performance Indicator.
- Work with NES to develop a training plan for the specialist LD CAMHS workforce and for wider CAMHS and multiagency partners.
- Support training rotations and secondments for LD CAMHS clinicians in the unit and community.
- Encourage and support clinical and service-related research.
- Review, develop and support annual multidisciplinary network meetings and committee.
- Support discipline-specific groups for peer support and supervision.
- Maintain the Network membership database and e mail system.
- Develop and maintain the network website to enable it to be a forum for sharing of information, e.g. on clinical pathways, service models, with links to other relevant forums.
5.8 Potential benefits of a specialist Scottish LD CAMH inpatient unit
5.8.1 Summary of study participants' views
The vast majority of clinicians interviewed thought that specialist LD CAMH inpatient provision was required in Scotland. Quite a number felt very strongly about this, commenting that they had seen the same issues arising across Scotland for years. They found it unjustifiable that a patient group with more severe and complex needs than children and young people without learning disability should have less access to inpatient care. Given that the numbers of children and young people requiring such provision would be unlikely to justify more than one unit for Scotland, there was acknowledgement that distance would still be a factor for some. However, in general for those with the most complex needs, a specialist LD CAMH inpatient unit was felt to be worth travelling to compared with trying to support them in local adult LD or regional YPU provision.
Parents interviewed had been asked to consider whether they would prefer their child to be admitted to a local but less specialist unit or to a specialist LD CAMH unit at a greater distance. They certainly found the distance an added stress factor in separation from their child. However, the nature of the setting was generally regarded as more important (and a source of stress) than location. One parent stated this explicitly, "the specialist needs override the challenges of travel and separation." Another parent was very clear that a unit in central Scotland was necessary to " stop the outrageous practice of sending young people miles away to England and placing them in adult units".
5.8.2 Benefits to children and young people with learning disability requiring mental health admission
Participating clinicians gave numerous reasons why their patients included in the survey would have benefitted from a specialist LD CAMH inpatient unit in Scotland. These are detailed in section A4.20 of the appendices and include quicker, better planned, safer, more specialist holistic assessment and treatment closer to home, preventing long periods of untreated illness/distress at home or in inappropriate units and escalation of difficulties. Access straight to an appropriate unit would prevent the multiple transitions currently experienced by a patient group who are particularly sensitive to change. An age and developmentally appropriate environment, activities and education would aid recovery and rehabilitation. More contact with family and local services would facilitate effective discharge planning.
5.8.3 Benefits to community LD CAMHS and other patients
There was a clear consensus from CAMH, adult LD and LD CAMH clinicians across Scotland that it would be important for an inpatient unit not to be developed in isolation from community services. Support for local services by a unit, particularly via a consultation role (whilst respecting local knowledge) was suggested by many. This would be particularly valued by those from remote and rural areas and smaller Health Boards who cannot realistically sustain comprehensive specialist LD CAMH community services.
At present these relatively few children and young people who require inpatient care absorb a huge proportion of mental health and other services time with constant crisis management. In addressing their needs, community services would be freed up from having to manage severely unwell children and young people in the community, from making time-consuming referrals to England or from cobbling together less than ideal local ad-hoc solutions. They would be able to direct this time to more proactive outpatient work and earlier interventions.
Recruitment to community mental health services for children and young people with learning disability is likely to be improved if they can become more proactive and less focused on stressful and time-consuming situations where clinicians attempt to find hospital beds or manage children and young people in inappropriate settings.
A specialist LD CAMH inpatient unit could become a centre of expertise that could resource and trains developing community LD CAMH services, as well as provide consultation around complex cases and inpatient care for those who require it. Thus community LD CAMH services across Scotland could become more experienced and resilient, allowing more complex children and young people to be treated in their local communities.
5.8.4 Financial benefits
At its highest point during the 5 year survey, total spending on this patient group via the NHS Scotland risk sharing scheme alone was approximately £1 million in 2014/15. The average cost per patient with non-forensic but complex LD / ASD for admissions paid for by NHS Scotland was £112,000 per admission.
As illustrated by the graph in section 4.10.2 (ii), spending by NHS Scotland shows an upward trend. This trend is likely to be exaggerated by the relatively short time that the beds have been commissioned for. It may also reflect growing awareness amongst practitioners of the specialist inpatient units and of the mental health needs of children and young people with learning disability in general.
Costs do not necessarily reflect demand. Costs incurred over the 5 year period will have been contained by limited access to NHS England LD CAMHS beds. For example, in 2015/16 (after the study period), NHS Scotland costs were down on the 2014/15 figure. This was influenced by a number of children and young people being discharged at the end of 2014/15 and no beds being available for others referred for admission. If beds had been available in 2015/16, costs would have been significantly higher. Significant fluctuations in cost are highly likely to occur when a small number of expensive admissions are being considered.
Due to limited bed availability in NHS England units, Health Boards paid for some children and young people to be admitted to private LD CAMH hospitals at a cost of £330,000 to £624,000 per annum. Costs may have been higher than to NHS units partly due to more of these admissions being in a secure setting. Costs of nursing children and young people in adult LD wards in Scotland were up to £520,000 per patient per annum, with some requiring considerable extra (but unknown) costs for building adaptations and repair. Shorter admissions (often of those with less severe levels of complexity and challenging behavior) to adult mental health and YPU wards could still cost up to the equivalent of £312,000 per patient per annum.
Long waits for inpatient provision in England also were costly to Health Boards and Local Authorities. For example, costs of supporting admissions to adult LD wards which were effectively 'holding places' pending treatment in LD CAMHS units in England included £56,524 for 16 weeks, £288,462 for 13 months and £91,449 for 26 weeks. A total of £232,000 in extra nursing costs was required for a patient in an YPU while awaiting an appropriate bed in England. Another patient required additional multiagency support costing £130,000 over a 6 month period whilst awaiting an LD CAMHS inpatient bed. Faster access to appropriate LD CAMH beds in Scotland would therefore save the cost of such 'holding arrangements' as well as the cost of admissions themselves being potentially reduced.
These figures are similar to those found by a recent report (Lenehan, 2017), which quotes a cost of approximately £1 million per child over a 3 year period for those with learning disability and/or autism and complex needs requiring inpatient mental health care or residential schooling
It would be anticipated that a Scottish unit, well linked in to Scottish community services would facilitate quicker discharge planning. Local social service departments can benefit from detailed holistic assessments of care needs as well as mental health treatment that admissions provide. However, discharge will often depend on the availability of social care and education packages to move on to. Such packages often need to be 'bespoke' and are themselves very expensive. The overall cost to the 'public purse' of quicker discharges of some patients may therefore remain relatively constant, but with considerable benefit to children and young people and their families of being closer to home in a non-hospital setting sooner. For others, early treatment by specialist LD CAMH community and inpatient teams can improve or prevent further escalation of mental health and behavioural issues, with subsequent savings across agencies. Appropriate specialist care could also allow better planning of adult supports and placements, and avoid lengthy admissions to adult LD wards in crisis in early adulthood.
5.9 Cautions about a specialist Scottish LD CAMH inpatient unit
The main concern relating to a Scottish LD CAMHS unit was significant travelling times from parts of Scotland. It was recognised by study participants that it could be very difficult for children and young people with learning disability and/or autism spectrum disorder to be far from familiar places and people. If there was a national Scottish LD CAMH inpatient unit, travelling time from all parts of Scotland would still need to be considered, as would the financial implications for families. It was noted that the same challenge exists for mental health as for specialist residential care and education placements in how to maintain pre-existing relationships, raising questions about whether a specialist unit at a distance is better than non-specialist units more locally. However, experience described across settings suggested that where a specialist unit understands the communication and other needs of the child or young person and has an appropriate physical environment, the child or young person can settle quite well. Families and local professionals would need support to travel and on-site accommodation would help considerably.
5.9.2 A specialist unit would not replace all use of admissions to non-specialist wards
Clinicians were concerned that regardless of a Scottish Specialist LD CAMHS unit, there will always be a need for very short local crisis admissions and while these do not happen very often when they do circumstances are quite extreme. Services available to support such situations are currently extremely rare. Local ad-hoc solutions can be successful but are very dependent on what and who happens to be available at the time. Clear pathways and protocols are required locally and consideration given as to the role a national unit could play in advising and supporting such situations.
5.9.3 Any specialist unit must be a mental health treatment facility not a long term residential care unit
It is important to be clear that the hospital admissions required by children and young people in this study were needed for assessment and therapeutic interventions for children and young people with learning disability and/or autism spectrum disorder who have additional severe and complex mental health and behavioural difficulties. This should be clearly distinguished from the long-term institutionalised hospital care of the past. Long-stay hospital beds for children and young people with learning disability were closed for good reasons, including the belief that these children and young people were particularly vulnerable to inappropriate admissions arising from a lack of home-based supports. Putting children and young people in a specialist hospital was at times a cheap solution for community and family breakdown. There remains a risk that lack of community services could drive admissions to and delay discharges from a mental health inpatient unit.
5.9.4 Development of a specialist unit should not detract from development of community LD CAMH services
Concerns were raised by participating clinicians that a focus on developing inpatient provision may detract from the urgent need to build up community mental health services for children and young people with learning disability. It is crucial that any development of a specialist LD CAMH inpatient unit facilitates rather than sets back development of the wide range of high quality community health, social care and education services required by these children and young people and their families.
5.10 Role of families
The crucial role that the vast majority of families play in caring for, supporting and advocating for their children is evident throughout this report. It is important that the development and ongoing work of any specialist LD CAMH inpatient unit fully involves children and young people, their families and carers. The needs of families and their relationships with their children must be considered carefully at all stages.