Learning Disability and Autism Programme

The aim of the Learning Disability and Autism programme in North Central London is to improve the lives of children, young people and adults with learning disabilities and/or autism who display behaviours that challenge, including those with a mental health condition.

The programme has three key aims:

To improve the quality of care for people with a learning disability and/or autism
To improve the quality of life for people with a learning disability and/or autism
To enhance community capacity, thereby reducing inappropriate hospital admissions and length of stay

More information on the Learning Disability and Autism programme can be found on the NHS England website and in the guide written by Bringing Us Together. Care (Education) & Treatment Reviews and Dynamic Support Registers

Dynamic Support Risk Registers (DSRs)

The Dynamic Support Register is a register of children and young people aged 0-17 years where there are concerns they are at risk of being admitted to an inpatient mental health hospital.

This will be for children and young people who have a learning disability or autism or both who display, or are at risk of developing, behaviours that challenge or mental health conditions, that place them at risk of admission.

Potential, relevant risk factors include (but are not exclusive) children and young people who are:

Already in a residential 52 or 38-week placement but providers are raising concern at their ability to be able to meet their ongoing needs
Displaying significant behaviours of concern that providers/parents or family members are raising as being a significant challenge to manage.
Have previously had a Child and Adolescent Mental Health Service hospital admission and there remain concerns
Known to the criminal justice system / Youth Offending Service and there are concerns about mental health / challenging behaviour

A child or young person can only be included on the register if they (or their parent/guardian or carer) have given their consent. There is a form that needs to be completed and signed, and this can be requested from your social worker, SEN key worker or health professional who leads on your or your child’s care.

If a young person is 16 or older, they must consent themselves to be added to the register unless they lack capacity. If this is the case, the team around the young person will meet to agree whether adding the young person to the register is in their best interests.

Many of the children and young people who are on the Dynamic Support Register will be known to existing services such as SEN, Disabled Children’s services, or Children Looked After.

If a child or young person is placed on the Dynamic Support Register, this means that we can ensure that they are receiving support to enable them to stay in the community, and that their needs are less likely to escalate to the point of needing a CETR and are at risk of being admitted to hospital. A child or young person will only require a CETR at the point at which all current community services have been exhausted.

There is a separate DSR process for 18 years plus.

Care Education and Treatment Reviews (CETRs)

The original Care and Treatment Review (CTR) policy was published by NHS England in 2015, as part of the wider Transforming Care work.

This was updated in 2017 to include a section specifically for children, and the introduction of Care, Education and Treatment Reviews (CETRs), recognising the importance of the role of education within a child’s life.

A new updated policy was published in January 2023. The policy includes new guidance on the implementation of Dynamic Support Registers (DSRs) and updates to the Care (Education) and Treatment Reviews (CETRs).

For children and young people it is for 0 to 17 years old, CETRs are run for those who are facing potential admission to, or are patients in, a specialist learning disability or mental health hospital and who are the commissioning responsibility of North Central London Integrated Care Board (NCL ICB) or the North Central and East London Provider Collaborative.

After 18, the young person will come under the adults’ policy and process; this is very similar to the children’s process in many respects.

What is a CETR?

The aim of a CETR is to facilitate a process of exploring alternatives to hospital admission, where that risk remains, despite the community services and the systems and processes supporting them, having been exhausted.

If hospital admission is unavoidable, the CETR programme will continue whilst the child or young person is an inpatient, through their assessment and treatment, and their discharge.

The CETR is chaired by the responsible commissioner, or delegated person, and includes a panel of independent experts – a clinical reviewer and an expert by experience.

There are three different types of CETR:

Community CETR – takes place when the child or young person is living in the community (this could also include if they live in a residential placement)
Post-admission CETR
Inpatient CETR – takes place when the child or young person is in a specialist learning disability or mental health hospital.

A community CETR will take place when it is highlighted that the child or young person is at risk of being admitted to hospital. The aim of this CETR is to seek alternatives to hospital admission, exploring what other services or options are available to keep the child or young person in the community.

Sometimes in an emergency situation it is not possible for a community CETR to take place. A community CETR should not be used to hold up the process of admitting someone to hospital if this is needed. A Local Area Emergency Protocol (LAEP) can be convened as an alternative to CETR if there is a crisis situation – however the LAEP will not include the independent experts by experience and clinical experts, and will just be arranged with local agencies, chaired by the responsible commissioner.

A post-admission CETR will only take place if no community CETR took place. It will take place within 2 weeks of admission.

An Inpatient CETR will take place every 3 months whilst the child or young person is in hospital. The CETR will be solution-focussed, looking at ways to overcome any barriers to the child or young person being discharged, and will agree any actions and timelines for this happening, as well as making it clear who is responsible for those actions taking place.

There are principles which sit at the heart of CETRs which the CETR Panel should always uphold. These are:

Person-centred and family-centred
Evidence based
Rights led
Seeing the whole person
Open, independent and challenging
Nothing about us without us
Action focussed
Living life in the community

The CETR must include:

The child or young person (if they choose to attend)
Family members (if the young person wants them to be there)
The responsible commissioner, usually the local ICB (formerly CCG) if a community CETR, or NHS England/North Central and East London Provider Collaborative if a post-admission or inpatient CETR
Responsible Clinician or Senior Nurse

Other people or services who may be helpful/appropriate:

Social Worker
SEND key worker
School representative
Youth Offending Team
Advocate
VCSE organisations who the young person is known to/involved with
CAMHS
Virtual School
Adult social care/Transitions team (if young person is over 14 years old)

The process uses ‘Key Lines of Enquiry’ (KLOE) which helps to put together a summary and feedback for the child or young person which says:

Am I safe?
What is my current care like?
Is there a plan in place for my future?
Do I need to be in hospital for my care and treatment?

Who can request a CETR?

Anyone, including the child or young person, or their family, can request a CETR. However, CETRs cannot take place without the consent of the child or young person if they are over 16 years of age. If a child or young person is under 16 years of age, their parent/guardian can consent.

If you are a young person or a parent/carer and want to request a CETR, you need to speak to your social worker, the health professional leading on your or your child’s care, or your or your child’s SEN Keyworker. They will discuss the request with you and can refer the request to the responsible commissioner.

Leaving hospital: discharge and post-admission

The CETR itself will not decide whether the child or young person is discharged. What it should do is ensure that there are clear plans in place for when the child or young person is discharged, and that the right support is in place to make the discharge a success. This will often take place through multi-agency discharge planning meetings.

NHS England have developed ‘Discharge Steps and Standards’ to support those involved in the CETR process plan for when someone is leaving hospital. This includes ensuring there are follow up meetings, and plans to ‘check-in’ with the family to ensure that things are working well

What is a key worker?

Keyworkers support the most complex and high-risk children on our DSR. They offer a range of individualised support for children and families.

NHS England » Children and young people keyworkers