Development of a CAMHS service for children with moderate to severe Learning Disabilities

Transcription

1 Harrow CCG Title of Meeting : Governing Body Agenda Item 9 Paper No 9 Date of meeting: 30 th July, 2013 Attachment I Development of a CAMHS service for children with moderate to severe Learning Disabilities Purpose of the report To evidence that the mental health needs of children and young people with moderate and severe learning disabilities are currently not being met and commissioners have identified this is a significant gap in local provision; and to set out a business case for investing in a service model which will increase capacity to respond to this gap whilst also moving us further towards an integrated provision with the Local Authority. Executive Summary (to include outcome benefits) The new proposed service will move us forward from the existing skeleton specialist interim resource, to commission a permanent service increasing capacity to meet local need. By responding to the gap in service provision NHS Harrow CCG will improve and maximize the physical and mental health outcomes of local children and young people with moderate and severe learning disabilities. It is anticipated savings will be actualized as result of service users having access to assessment and treatment when needs are identified; furthermore through a reduction in the use of NHS England T4 Inpatient beds, and in the longer term a reduction of the numbers of adult service users with LD requiring specialist mental health interventions/placements. Decision required: The Board / Committee is asked to: To seek approval to commission an NHS Child & Adolescent Mental Health Service (CAMHS) resource for children who experience mental health problems with a moderate to severe Learning Disability (LD). Corporate Objectives and Board Assurance Framework: (Reference to how the organisation s objectives for year are supported by this paper) Please list BAF and Corporate Risk reference no.) Objective 1: Improve the health and wellbeing of the local residents in line with commissioning intentions. Objective 5: Develop robust and collaborative commissioning arrangements

2 Equality and Diversity considerations and implications from which an Impact Assessment might be made: This is an essential service provision which addresses the current inequitable lack of mental health provision to this vulnerable cohort of children and their families. Resource implications: (Confirmation that any resource implications have been agreed with Finance) Annual cost = 184,227 financial resource identified through a reduction in CAMHS expenditure. The financial table set out at the back of the business case sets out the financial detail agreed with finance Risks Attached to this initiative (Reference to Corporate Risk Register as appropriate) (This could include legal or other statutory implications or drivers) 1. Gap in service provision leading to an escalation of extreme negative presentations of both physical and mental ill health in children and young people with moderate to severe learning disabilities. 2. Increase likelihood for the need to access high cost specialist interventions/placements 3. Increase the probability of safeguarding issues resulting from this cohorts increase in challenging behaviour presentations 4. Increase in risk of the need for long term specialist interventions/placements in adulthood. Patient & Public Engagement Input to and/or Impact of this initiative This initiative has been identified as a priority locally by both service users and stakeholders. Safeguarding Implications: 1. Failure to provide this service will result in an increased pressure on local families resulting in potential family breakdown 2. Increased incidence of challenging behaviours 3. Risk to local community as a result of escalations in presentations of challenging behaviours Communications Strategy: (How will this initiative be disseminated) This will be undertaken as part of the quality control throughout the delivery of the service and be the responsibility of the service provider.. Clinical Director: Contact: Name: Dr Genevieve Small Name: Sue Whiting/Jude Sellen Job title: Clinical Director Job title: CAMHS Commissioner

3 Project Name Project Reference Clinical Lead (Sponsor) Management Lead (Sponsor) Project Manager Finance lead Information lead Legal advice (if used) Child and Adolescent Mental Health Services Development of a CAMHS service for children with moderate to severe Learning Disabilities Dr Genevieve Small & Dr Dilip Patel Sue Whiting Jude Sellen Paul Jones Bindi Shah N/A Project Start date June 2013 Project completion date Subject to recruitment, Service will commence September 2013 service On going requiring recurring funding Executive Summary and decision required The proposal requiring approval is to sustain the commissioning of an NHS Child & Adolescent Mental Health Service (CAMHS) resource for children who experience mental health problems with a moderate to severe Learning Disability (LD). The evidence of the high levels of unmet mental health needs of our local children with moderate to severe Learning disabilities resulted in NHS Harrow CCG commissioning an interim service whilst NHS Harrow CCG scoped the model of a sustained service. This service was an additional financial pressure whilst taking the opportunity to identify sustainable financial funding. Initially this resource will be provided by Central and North West London NHS Foundation Trust (CNWL) CAMHS service with an option to review the model and re align to our Harrow Learning Disability Team (HLDT) also provided by CNWL. The new proposed service will move us forward from the existing skeleton specialist interim resource, to commission a permanent service increasing capacity to respond to local needs. Strategic Delivery team 06/2009

4 The existing interim service can only respond to crisis, undertake and complete assessments of those children with severe LD on a waiting list (who then are placed on a further waiting list awaiting availability to treatment). The lack of intervention and support leads to increased pressure on local families and acute presentation of challenging behaviour requiring a higher level of specialist intervention. The interim service has provided a useful evidence base of local need to support the rationale for presenting this business case. This business case will result the provision of a service that will improve mental health outcomes of children with moderate to severe Learning disabilities and reduce the need for long term investment in high cost specialist interventions/placements. The investment for this proposal has been made available through NHS Harrow CCG s QIPP efficiency programme.in 2012/13 the commissioners took back the management of CAMHS Tier 4 Services from CNWL (CAMHS investment to support children and young people with severe and complex mental health needs, requiring either inpatient or additional, dedicated specialist therapeutic support within the community). NHS Harrow s ability to manage access, referral, treatment outcomes and discharge of children to these specialist services, has resulted in the a re specified of our local CAMHS provision, including the development of a Tier 3.5 service to support maintenance of community CAMHS activity. This has resulted in a demonstrable reduced spend in specialist provision which will it is proposed will provide the funding for this service. It is anticipated that further savings will be actualized as result of the development of this service and these will be attributable to a reduction in use of NHS England T4 Inpatient beds and in the longer term a reduction of the numbers of adult service users with LD requiring specialist interventions/placements. Research indicates that children with a learning disability are at high risk of developing emotional, behavioural or other mental health difficulties. (Alcorn, A, 2007) Nationally 40% have a significant problem compared with 10% of all children and young people. Service development for these young people has been identified as a priority both nationally and locally. In Harrow, we currently have a total population of 55,600 (2010 figures) children and young people under the age of 19 years 2.5% of this population will have a Learning Disability (LD) which equates to approximately 1390 young people. Using these population projections we have approximately 250 children with moderate to severe L.D. Therefore the current proposal would provide a medium solution as we work towards a longer term solution in which options for greater integration with our Local Authority partners will be sort. Approval is being sort for commissioning of a NHS Harrow CAMHS LD service requiring recurrent funding as detailed below. 2 of 16

5 Project description and objectives What is needed Children with learning disabilities should be able to access mainstream services wherever possible. In addition to these they will often require specialist interventions from appropriately skilled professionals. The provision of consultation, advice and support from specialist CAMHS LD practitioners can assist and enhance mainstream services in their work with these children, young people and their families. In order to deliver a seamless, coordinated service to children with learning/developmental disability with additional mental health needs requires a multi skilled, multi disciplinary team is required. This should be delivered within a coordinated service framework that brings together all the required components including, primary care, community paediatrics, CAMHS, LD nurses, psychiatrists, psychologists, social workers, teachers and paediatricians. This project will support this direction of travel by providing a medium term response to the currently limited and under developed provision. The additional resources detailed below will build substantially on our interim arrangements. The proposal will include the appointment of: 1 x wte: Psychologist (with possible additional development of trainees attached on 6/12 month rotations) 1.5 x wte: Specialist CAMHS LD nurse/o.t; 2 PA s: CAMHS LD Psychiatry P/T Administrative support Commissioning this service will provide key improvements in our clinical outcomes for children and young people with LD who experience mental health problems. These improvements will be as a result of providing these children, and equally importantly their families and carers, access to advice and support at the point of the emerging mental health problem, as opposed to the current situation which sees children and families struggling when at crisis point leading to high cost solutions. This project aims to provide early identification, support and treatment and maximise long term physical and mental health outcomes, minimising the reliance of short and long term specialist care. This project will provide a local service with increased access to appropriate children and families resulting in delivery of Person Centred Care and efficient/effective commissioning. 3 of 16

6 Guidance and Legislation The National Service Framework Standards for The Mental Health and psychological Well being of Children and Young People (Standard 9), 2004(3), specifically states that: All children and young people with both learning disability and a mental health disorder have access to appropriate child and adolescent mental health services. In 2005 additional proxy measures were added to the proxy targets for CAMHS which prompted commissioners, through the need to provide comprehensive CAMH services by December 2006, to promote improved services for children and young people with learning disabilities. There is a wide variety of service models nationally, for children and young people with learning disabilities, which have been developed in response to local needs. These models range from specialist Learning Disability CAMHS teams to Lifespan Learning Disability services, to learning disability needs met in mainstream CAMH services. Documents such as the Do Once and Share (DOAS): National Care Pathway have been produced in an attempt to guide service model developments by describing the processes involved in service delivery at each stage of the care pathway. The Quality Network for Community CAMHS (QNCC) has developed Learning Disability Standards enabling services, for the first time, to be able to evaluate the quality of the services they deliver effectively, following the stages of the care pathway. These will be used to evaluate the impact and outcomes of the local service. In addition CAMHS Outcomes Research Consortium (CORC) supports CAMH services in the collection of outcome measurement data both data sets will be used to define outcomes. Locally the NHS and the LA aim to ensure that a full range of services for children and young people with learning disabilities and mental health needs are explicitly commissioned. However there is growing evidence which suggests that the quality of current services provided remain patchy and by necessity are operating a crisis model. Evidence: 1. Certain psychiatric disorders are more common than others in children and young people with learning disabilities such as : Autism Spectrum Disorder Hyperactivity and attention deficit hyperactivity disorder Depression Psychosis including schizophrenia and bipolar disorder Tourette syndrome Challenging behaviour Self injury. Bernard and Turk, 2009 Developing Mental Health Services for Children and Adolescents with Learning Disabilities: A Toolkit for Clinicians. London: Royal College of Psychiatrists. 2. The incidence of children with severe learning disability alone is expected to rise by 1% year per year for the next 15 years. There will be at least as high a rise in incidence of children with mild and moderate learning disability due 4 of 16

7 to the following: Increased survival and life expectancy, especially among people with Downs syndrome Growing numbers of children and young people with complex and multiple disabilities who now survive into adolescence and adulthood A sharp rise in the reported numbers of school age children with autistic spectrum disorders, many of whom will have learning disabilities. Source: Valuing People White Paper 2001 In addition the population of learning disabled children is further rising as a result of: The increased survival rate of low birth weight babies (50% of whom show later cognitive impairments) Ethnic minority populations are rising in some areas and there is a greater prevalence of learning disability among some minority ethnic populations of South Asian origin. Source: Full Parliamentary Hearings on Services for Disabled Children Oct2006 Scope Provision of a specialist NHS CAMHS LD team, to provide specialist assessment, treatment and advice for professionals for children with moderate severe LD as required. This project will cover: Service proposal outline for NHS Harrow CCG CAMHS Provision of mental health assessment and treatment of children with mild moderate LD, where possible will be offered from within mainstream CAMHS. The specialist CAMHS LD service will offer focused time limited intervention, consultation and advice to CAMHS, parents, and professional s to deliver intensive therapeutic treatment and a planned parental support program. The development of a coordinated service framework can be provided by a network approach that brings together existing services this will support Harrow moving towards an integrated long term model/service. Access to the specialist service The specialist service will include access to those children aged 0 18 years, with the following characteristics: A moderate to severe learning or developmental disability Additional emotional, behavioural or other mental health need Tangible barriers to accessing mainstream services The potential to benefit from the service offered by the specialist team in terms of 5 of 16

8 improved outcomes Access to the service will be based on the child s presenting needs rather than on diagnosis/iq score alone This project will recognise explicitly the need for a specific skill set in staff in order to address key differences in working with children and young people with Learning Disabilities. The following sub heading will underpin the scope of the project: Communicating Effectively with a Child with LD Information will be adapted to the young person s level of comprehension, language processing ability and cognitive ability (these may all develop at different rates). Information will then need to be repeated many times to be sure the young person has both understood and retained information. Both assessments and interventions therefore take longer. Children with LD may have no language with which to express emotional issues such as feeling sad. The service must be able to provide effective communication and interpretation systems :NSF for Children 2004, Standards for LD CAMHS Dec 2006 Modification of Standard Assessments Assessment of young people with LD will include interviewing key adults (both parents/carers and teaching staff) who know the young person well, and to compare behaviour with the young person s historical presentation, due to communication problems described above. How the conditions present in young people with LD is different, so adaptation of standard diagnostic criteria may be required (e.g. Depression) Most standard rating scales have been developed for use with young people of normal ability (e.g. Connors Rating Scales in ADHD) and not young people with LD. The outcomes and outcome measures which can be used are all different from Generic CAMH services CORC CAMHS Outcome Research Consortium and Parliamentary Hearings on Services for Disabled Children Dec Needs of Parents/Carers The project recognises the incidence of parental stress and mental illness is higher than in parents of young people of normal ability, which in turn affects parents ability to carry out recommended intervention strategies as well as increases the risk of MH problems in their children NSF for Children; Emmerson 2001 Specialist Skills Required All professionals working with children with learning disabilities will have experience in what is normal presentation of children of all ages with mild, moderate and severe disabilities. There is an increase in incidence, in particular, of significant challenging behaviour (70 80% of referrals in local caseload review 2005). Most of these cases would be excluded by universal CAMH services as not meeting referral criteria, the project/new service will not exclude children with LD who have challenging behaviour but will have a limited capacity to offer direct therapeutic interventions but will offer consultations to other professionals and carers in the child s life.. Professionals working with young people with LD in the new project will need to have an understanding of physical conditions e.g. epilepsy, constipation, common causes of pain as 6 of 16

9 these frequently present as behaviour problems Parliamentary Hearings on Services for Disabled Children Dec 2006 The incidence of Autism rises with decreasing IQ. Children and young people on the autistic spectrum pose particular challenges for professionals. National Autism Plan for Children As a result of the increased risk of abuse, there is a higher proportion of Child Protection work HM Treasury Children and Young People s Review January 2007 There is a higher incidence of co morbidity (e.g. autism, learning disability and ADHD; autism, learning disability and epilepsy) which adds to the complexity of cases. Caseload Differences Caseloads need to be smaller than mainstream specialist CAMHS due to the above and any/all of the following points may apply to each case a) Many patients will have a paediatrician and paediatric neurologist in addition to a GP, S&LT, OT, Social Worker and teaching staff. The multi agency nature of all cases requires a coordinated and networked approach and often needs a key worker role to be taken, the intensity of which is recognised to require smaller caseloads. (Ref: Greco et al 2005) b) Appointments will/may have to be offered in places which are familiar and readily accessible (i.e. schools, homes, and respite facilities) this requires more time for the professionals to travel. c) The young person may need to be seen over a longer period of time before change can be expected. This project will not cover: The project will prioritise children on the basis of need following access to an assessment. All children who are received via referral into the new service will receive an assessment of their mental health needs. At this stage there will not be capacity for a dedicated Challenging Behaviour Service as this requires an integrated service response to improve outcomes. The involvement of community paediatrics in triage will be limited to the under 7 s, however where consultation is required this will be accessed in the normal ways. There will continue to be consultation between specialist CAMHS and community and acute paediatrics re children 7+ This service will work in conjunction with the London Borough of Harrow and will not replace/undertake their statutory responsibility. 7 of 16

10 Description of service NHS Harrow CCG CAMHS Commissioner has reviewed national evidence and recommendations, in addition to local data provided over a 6 month period by the Interim specialist CAMHS LD service. This Business Case recommends the option detailed below be commissioned by September 2013 and therefore recommends the project commences with immediate effect June 2013 Moving towards the development of a comprehensive LD CAMHS: It is proposed we move from the current interim arrangement to a more comprehensive sustainable service but that this will need to be achieved incrementally. The interim arrangement has included commissioning a non recurring short term CAMHS service to meet the extreme mental ill health presentations of children with LD whilst taking the opportunity to define need and provision requirements. Rationale for new service: Whilst the NHS Harrow CCG recognises there is a need to work with partners towards commissioning a fully integrated LD Children s service, clinically supported by a hub and spoke model, as per national recommendations, this business case sets out our proposals to move towards this longer term vision. The interim commissioning investment from NHS Harrow CCG has only provided a crisis response provision, with limited opportunities for children and families to access treatment. Evidence from the current service demand has identified that the complex needs of this patient cohort cannot be met within the current provision. There is significant risk that mental health problems may escalate and require access to longer term high cost specialist services and interventions. It has been noted that 5 children with severe LD were taken to A&E by their families who felt that they could not cope with the complexity of need and was in part related to the lack of a local specialist LD CAMHS provision. Local evidence has identified an opportunity to more appropriately manage these complex presentations with a coordinated local specialist provision as demonstrated by the development of the CAMHS Tier 3.5 service. It is proposed that an additional investment (the detail is cited at the end of this paper) would provide recurrent investment to commission a specialist CAMHS LD team. 2012/13 has provided the evidence of the high levels of unmet mental health needs of our local children with moderate to severe Learning disabilities. With this evidence of local need and the recommended skill mix to support these needs the current business case proposes commissioning: 1 x wte: Psychologist (with possible additional development of trainees attached on 6/12 month rotations) 1.5 x wte: Specialist CAMHS LD nurse/o.t; 2 PA s: CAMHS LD Psychiatry Administrative support 8 of 16

11 Benefits: the new service will provide: Ongoing direct interventions to 40 LD children / year at any one time. Access to psychiatric assessments for severe presentations of mental ill health Introduce a Triage system to improve earlier detection and reduce escalation A specialist consultation service to: Primary Care Social Work disability service Community Paediatrics Health Visitors/School Nurses Schools Risks The current model has been developed within a uni organizational commissioning framework, NHS Harrow CCG are working with partner organisations to develop an integrated whole systems commissioning framework Limited pool of specialist practitioners Strengths Response to essential service gap for the identified patient cohort Early intervention and management of clinical presentations will reduce the need for specialist adults services Ability to advertise for permanent recruitment will attract stronger field of candidates Responding to the voice of children and families Create a robust responsive and effective service Provision of a clear care pathway with commitment to continue to develop in line with local and national service provision Medium term will build on opportunities for a consultation service leading to a cascading of knowledge/skills across other Children s service professionals Long term increased in early intervention, reduction in escalation to high cost service provision, increased empowerment within families, early identification of significant mental health problems being treated quicker, reducing long term negative impact on service users life. Outcomes Early intervention to prevent chronic emotional and mental health difficulties that impact on all aspects of the child s life. Access to specialist support for universal service providers Minimisation of longer term physical and emotional health issues To ensure that self injurious behavioural distress do not result in permanent additional disabilities Maximizing achievement of potential and quality of life for the individual and family Prevention of school placement breakdowns, to ensure children s needs can be met within the borough and prevent out of area placements. Prevention of crises in the family home that could resulting in safeguarding issues Prevention of social isolation by identification and management of factors likely to lead to further isolation. 9 of 16

12 A model to support the future mental health pathways for children with L.D. This model will be taken forward by the new service in partnership with partners The following diagram provides a vision for a new pathway supported by an integrated Children and Young People Commissioning Executive Board. The CYP would be a virtual team made up of senior practitioners/clinicians with expertise in neurodevelopmental/behavioral problems in children and young people. Other referring professionals may join the CYP forums to support the effective development of this care pathway and its review. Dependencies Dependency Owner Dependency management CCG board sign off CCG 1. sign off of evidence based business case Completion of service spec CAMHS Commissioner 1. CCG Sign off Service provision CNWL 1. Engagement in service development 2. Delivery of revised service Engagement of key stakeholders CNWL 1. Development and launch of revised care pathway 2. Evidenced through KPIs On going service development NHS Harrow CCG/LA 3. Delivery of joint commissioning intentions 10 of 16

13 Stakeholder Management Stakeholder Role Comms & Engagement approach Local Authority Clinical services Service users The provision of other parts of the care pathway To support access and exit re care pathway To input evidence outcomes through patient experience and input in service design/evaluation Via CAMHS Operational /Commissioning Group Development of provider forums Introduction of service user participation /forums Governance and Monitoring Overall governance arrangements The decision making framework to support this business case includes the Task and Finish CAMHS group overseeing this project and ensuring the governance arrangements are specified within the forthcoming specification. The CAMHS operational group will report to the Children s Executive Board who in turn report to the Health and Wellbeing Board. The service will be commissioned by NHS Harrow CCG from CNWL and will adhere to the required service specification and KPI s. Project Board membership Role Name Organisation Clinical lead Dr Genevieve Small NHS Harrow CCG Assistant C.O.O Rebecca Wellburn NHS Harrow CCG LA lead Melissa Caslake London Borough of Harrow Service Manager Melanie Woodcock CNWL CAMHS Commissioner Jude Sellen/Sue Whiting NHS Harrow CCG 11 of 16

14 The schedule for key project decisions is: Decision Date By Project Complete July 2013 Benefits Evaluation March 2014 Accountable to Task and finish CAMHS group In partnership between provider and Commissioning leads + identify service user lead The additional control points when the Approving Body will review progress are: Control point Date Reporting arrangements Evaluation of service improvement outcomes achieved bi annual report to CAMHS operational board Monthly Performance and Quality will be monitored as part of the Mental Health contracting arrangements supported by the North West London Commissioning Support Unit. Equalities Impact Assessment There is an identified need for a specialist provision for this cohort of patients. The option specified is indicative of having identified the inequality of access to mental health advice, support and interventions by children and their families where the child has a moderate to severe LD therefore an outcome measure for the project will be to complete an Equalities Impact Assessment midterm 6 months into the projects implementation timeline. 12 of 16

15 Document History Version Status (Draft or Approved) Date Author/Editor Details of changes 1 Draft Jude Sellen Interim NHS CAMHS commissioner Harrow First draft submitted ready for board meeting on 11 th June of 16

16 Mile stones CAMHS LD service specification for Medium term option for NHS June 2013 Specialist CAMHS LD Psychology appointed Sept 2013 Specialist LD CAMHS Nurse/O.T Oct 2013 Develop referral pro forma Oct 2013 Launch care pathway Nov 2013 Implementation Phase 1 July 2013 Within existing resource Set up a multi agency steering/project group Draw up an action plan to include clear management of change processes Ratify draft service specification Identify resources available across agencies and build that resource where obvious gaps. Identify current skills available and identify training needs Agree and establish therapeutic interventions Set up parent/carer group define the LD/MH core role for each professional group 14 of 16

17 Work with universal services to develop a training and support plan and begin to deliver this. Establish partnership agreements between services Agree access and referral criteria across agencies and services. Identify and establish formal links with existing parenting programmes. Phase September 2013 With additional resource Develop rapid response, and parent advice line Establish consultation mechanisms for professionals Develop drop in for parents and parent advice line. Continue to build core service with additional staffing as identified in Phase 1 Work towards a fully integrated, jointly commissioned service with a pooled budget. 15 of 16

18 Appendix A Project Budget PYE PYE FYE 2012/ / /15 Onwards 000s 000s Interim service* CCG Financial pressure in 2012/13 Investment in New Service* Net Investment in New Service *Provision to be funded from CAMHS Cost per case budget. Annual cost Grade Number of posts Cost Breakdown s 8A 1 Psychologist 59, OT / Spec Nurse 43, Nurse = 19 (.5 lower band) 21,661 2 PA's Psychiatrist 16,000 Additional session from CAMHS Admin support 19,568 Direct Pay Costs 160,197 Overhead (15%) 24,030 TOTAL Costs 184, of 16