1. Introduction

These minimum standards support integrated care boards (ICBs) as they commission keyworking services for autistic children and young people and children and young people with a learning disability who are at risk of an inpatient mental health hospital admission or who are currently in an inpatient setting.

Keyworker services are established in ICB areas in England for autistic children and young people or those with a learning disability. They were developed in response to recommendations in Dame Christine Lenehan’s report These are our children to improve community crisis support and to avoid admissions to a mental health hospital for this group of children and young people. NHS England initially funded the development of pilot services and the subsequent roll out across England in two phases. From 2024/25 this resource has been embedded in ICB funding allocations, and our expectation is that keyworking services will continue. 

A keyworking service should be offered to children and young people who are assessed as red, amber or blue on a dynamic support register (DSR) meaning they are at potential or immediate risk of admission to, or those who are already in, a mental health hospital: up until their 18th birthday, or 25th birthday for those in inpatient services.

The minimum standards have been developed from a national evaluation of keyworking. Compliance with these standards should be reviewed at least annually and where actions are required these should be reviewed regularly.

All elements of the Keyworking Programme and minimum standards have been co-developed and co-produced with a steering group and relevant subgroups that has included young people, parent carers, ICB leads, Keyworking leads, relevant government departments and voluntary and community sector colleagues. The minimum standards should be read in conjunction with the functions of keyworking. 

Feedback from keyworking services and families has shown the significant impact that keyworking can have for children and young people, both in terms of avoiding admission to a mental health hospital and improving the experience of children, young people and families.

2. Minimum standards checklist

1. Foundations for a keyworking service

• Keyworking services should be jointly planned, developed and reviewed.
• Every child or young person at potential or immediate risk of a mental health hospital admission, [rated red, amber or blue on the DSR], and children and young people who are currently in an inpatient setting should be offered a Keyworker.
• There should be a process to monitor the impact of keyworking.
• There must be co-production with young people and their families in the planning and delivery of local keyworking services.

2. Keyworking service specification

• The keyworking service should be underpinned by a clear service specification.
• The service specification should set out the necessary range of knowledge, experience and skills required for the role of keyworker across education, health and care.
• The keyworking workforce should have the necessary range of knowledge, experience and skills required for the role across education, health and care.

3. Standard Operating Procedures (SOPs) and processes

• There should be a clear SOP developed for the service.
• The SOP should include the service’s position and agreements about cross border arrangements.
• The SOP should include how the service intends to ensure it meets the needs of children and young people who may be placed in a mental health hospital outside of the area.
• The SOP should include how the service intends to ensure it meets the needs of children and young people who may be placed as Looked After Children outside of the local area.

4. Eligibility, referral and the relationship with the dynamic support register (DSR)

• There must be an agreed process between the DSR and keyworking service.
• Referral to the keyworking service should be through the DSR.

5. Providing information and advertising the service

• Information about the keyworking offer should be widely publicised including in the special educational needs and disabilities (SEND) local offer.

6. Measuring and monitoring impact

• Commissioners should expect to see service information reflecting a minimum data set.
• Keyworking services should use validated tools to collect outcome information for children and young people, and their parent carers over time.
• All children and young people and parent carers should be asked to share their experiences of keyworking independent of their own Keyworker.

7. Escalating issues of concern

• There should be appropriate and clear governance in place to manage issues of concern.
• There should be clear routes of escalation for any concerns identified by keyworking services and timely senior intervention to resolve these issues.

3. Minimum standards

Minimum standard 1:  Foundations for a keyworking service

1.1 Keyworking services should be jointly planned, developed and reviewed

This should be done between the ICB, local authority, and engagement with young people and parent carers (usually through the parent carer forum).  Responsibility for meeting the needs of autistic children and young people and children and young people with a learning disability at risk of a mental health hospital admission, or who are currently in inpatient care should be shared by the statutory organisations represented in the integrated care partnership. Successful implementation of keyworking requires commitment from senior partners across the integrated care system (ICS) who work with these children and young people, including from health, social care, education and the community and voluntary sector to come together and agree that they have a shared responsibility irrespective of which organisation in the system has the primary contact with the individual.

1.2 Every child or young person at potential or immediate risk of a mental health hospital admission, [rated amber or blue on the DSR], and children and young people who are currently within inpatient care should be offered a Keyworker

Keyworking services should ensure the needs of the individual are understood and reflected in the services and care provided by all stakeholders involved to avoid unnecessary, or unplanned, admission to a mental health hospital; or to ensure care and treatment in an inpatient setting is appropriate and discharge from hospital is timely.

1.3 There should be a process to monitor the impact of keyworking

All stakeholders in the ICS who provide services to these children and young people should agree how the system will monitor and measure the impact of the keyworking service specifically whether it is effective in avoiding unnecessary or unplanned admissions and it supports discharge and reduces lengths of stay for children and young people who are inpatients. It should also improve young person and parent carer experience.

1.4 There must be co-production at every level of planning and delivery of local keyworking services

Keyworking has been developed with children and young people with lived experience, and their parents and carers, working alongside commissioners and service providers to ensure the keyworking service reflects their needs. This co-production involves establishing the service, writing job descriptions, recruitment and training of staff, producing information for service users and ongoing governance. We are clear that this must continue and that ICBs must follow statutory guidance for working with people and communities to ensure the keyworking service does not lose the unique perspectives of people who have lived experience. Experts by experience may also be employed directly in the service.

Minimum Standard 2: Keyworking service specification

2.1 The keyworking service should be underpinned by a clear service specification

 It should include:

• the role of the Keyworker
• the skills required in the keyworking service
• provision of supervision, peer support and training
• how the keyworking service and Keyworkers interact with the DSR for eligibility, assessment and referral processes
• monitoring and measuring progress and outcomes
• escalation of unmet need and how collectively it will be addressed
• process of step down and discharge from the service
• the provision of children and young people and parent carer facing information which provides clear messages about the purpose of the Keyworker and what they can and cannot expect from the keyworking service
• the need for Standard Operating Procedures (SOPs) reflecting NHS England guidance

2.2 The keyworking workforce should have the necessary range of knowledge, experience and skills required for the role across education, health and care

Keyworking teams need skills to understand children and young people’s needs, plus the confidence and seniority to communicate these needs to stakeholders across health, social care, education and voluntary sectors. They must be able to challenge appropriately when needed. Some sites differentiate these roles within their workforce since individuals may not have all the required skills. The workforce should understand all services that keyworkers engage with, with skills and knowledge reflecting the emerging needs of children and young people at risk of mental health hospital admission.

2.3 Keyworkers should complete nationally specified keyworking mandatory training

NHS England recognise the importance of equipping the keyworking service with the skills to take on this difficult role and have developed core mandatory training sessions which all Keyworkers are required to complete as part of their onboarding.

2.4 There should be additional training for keyworkers supporting young people between 18-25 years

This should reflect the issues they commonly face, such as housing challenges, securing employment, accessing benefits, or accessing specialist support for problems like addiction.

2.5 Children and young people, their parents and carers should be involved in the development of training materials, and the delivery of training focusing on lived experience

2.6 There should be appropriate support and supervision for Keyworkers

Keyworking includes working with children, young people and families at a point of crisis. It is essential that Keyworkers are supported in this role. 

Minimum Standard 3: Standard operating procedures (SOPs) and processes

3.1 There should be a clear Standard Operating Procedure (SOP) developed for the service 

The national evaluation found inconsistent service delivery between areas and sometimes between keyworkers in the same team. To ensure consistency and equity, the service specification should require SOPs and processes for referral, working with children, young people and their families, and arrangements for step down and discharge. SOPs should be regularly reviewed. 

3.2 SOPs should include information around step-down, discharge and re-referral 

The keyworking service should have a clear agreed process for step down, discharge and re-referral which is transparent and shared with partners, young people and families at the start of the support.

3.3 Where a Keyworker has been allocated, they should be in place while a child or young person remains red, amber or blue on the DSR

Step down should support discharge.

3.4 If a child or young person’s risk has been assessed as reduced by the DSR process, this should trigger the service’s process of step down

This should be discussed between the Keyworker, the child or young person and their parent carer with a clear process for what they can expect and when, in line with the SOP, if the child or young person’s needs go up again in the future.

3.5 Information about step down and discharge should be explained to the child or young person as well as their parent carers

This should be clear from the outset, provided verbally and should be reinforced by written communication, in a range of formats and settings (for example, service website) at regular intervals to ensure that they are prepared and can work towards this with their Keyworker.

3.6 Once discharged the route back into the Keyworking service should be the normal referral process through the DSR following risk assessment by system stakeholders

3.7 The SOP should include the service’s position and agreements about cross border arrangements 

Responsibility for commissioning keyworking sits with the ICB where the child or young person is GP registered (except in circumstances outlined in the minimum standards 4). 

Children, young people and their families may live close to an ICB area boundary and access education and services in a different area to where their GP is located. In these circumstances Keyworkers are expected to fulfil their role with the services that support the person who is eligible for a Keyworker, even if some of these are in another ICB area. Commissioners should be made aware of these situations and the circumstances and preference of the young person and their family explored, with pragmatic decisions made on this basis. Agreed processes for working across ICB boundaries should be reflected operationally in SOPs, resources directories and staff training.

3.8 The SOP should include how the service intends to ensure it meets the needs of children and young people who may be placed in a mental health hospital outside of the area

Some autistic children and young people, or children and young people with a learning disability, who are in a mental health hospital may be geographically located outside of their home area, either defined as out of their local authority or ICB footprint area.

Responsibility for commissioning keyworking for a child or young person should be consistent with the Who pays? guidance and the DSR and C(E)TR Policy and remains with the ICB where the child or young person is GP registered.  This means the keyworking service from the home or originating area is responsible for commissioning the keyworking functions for that child or young person. This is important as the ambition is for any inpatient stay to be for as short a time as possible. Remaining close to local services and support for the child and their family is vital. For as long as the home or originating area retains responsibility for including the child or young person on the DSR, or providing C(E)TRs, the home or originating Keyworking service is responsible for stepping in if a previously supported child or young person becomes at risk of admission again or if they are admitted to a mental health hospital.

Children placed or living a distance from home are likely to experience longer lengths of stay and their vulnerability increases. Keyworking services need to ensure that even when children and young people are placed away from their local area, the keyworking service and functions are still effectively delivered to them and their families.

3.9 The SOP should include how the service intends to ensure it meets the needs of children and young people who may be placed as looked after children outside of the local area 

For children and young people aged under 18 who are placed as looked after children out of the local ICB area in short term foster care or in a residential placement, commissioning responsibility for keyworking services is retained by the originating ICB. Section 15 of the Who Pays? guidance explains which ICB should commission services for these young people.

If a child or young person covered by the categories set out in paragraph 15.3 of the Who Pays? guidance has a long term out of area placement where they access education, care and support locally, the originating ICB should arrange for a keyworking service to be provided in the area where the child or young person is placed.

In these circumstances we would expect the responsible commissioner working with statutory partners, the young person and their parent carers to determine on an individual basis whether the keyworking service should be commissioned from the originating ICB.

Minimum standard 4:  Eligibility, referral and the relationship with the DSR

4.1 There must be an agreed process between the (DSR) and keyworking service

The DSR is the mechanism in place for local systems to ensure children and young people at risk of admission to a mental health hospital or currently within an inpatient setting are identified using a recognised tool and that appropriate support is actioned. NHS England published the DSR and Care (Education) and Treatment Review (C(E)TR) policy in 2023 which provides more detail for systems about DSRs.

DSRs are the mechanism for local systems to:

• use risk stratification to identify people at risk of admission to a mental health hospital
• work together to review the needs of each person registered on the DSR
• mobilise the right support (for example a Care (Education) and Treatment Review, referral to a Keyworker service for children and young people, extra support at home) to help prevent the person being admitted to a mental health hospital

The DSR enables systems to identify adults, children and young people with increasing and/or complex health and care needs who may require extra support, care and treatment in the community as a safe and effective alternative to admission to a mental health hospital. Additionally, they play a role in ensuring that people’s needs are included in commissioning plans, financial plans, service delivery and development.

4.2 Referral to the keyworking service should be through the DSR

Children and young people rated amber, red or blue on the DSR must be offered a Keyworker. This must be done in a timely way.

Minimum standard 5: Providing information about the service

5.1 Information about the keyworking offer should be widely publicised including in the SEND local offer

The role of the Keyworking service and Keyworker should be consistently explained and advertised to all organisations and professionals within a local area /system including through the provider collaborative and community mental health. Information should be reviewed at least on an annual basis.

5.2 Commissioners should ensure that accessible information about the keyworking service is readily available to families, young people, and parent carers

This should be through a wide range of settings including websites, schools, user groups, and voluntary sector partners to ensure that they understand and advertise the service.

5.3 The service should maintain a directory of all provision available to autistic children and young people or children and young people with a learning disability

Minimum standard 6: Measuring and monitoring impact

6.1 Commissioners should expect to see service information reflecting a minimum data set

This should include:

• source of referral (to DSR)
• date of referral to keyworking function
• date of consent to Keyworker
• date Keyworker allocated
• date keyworking started
• diagnosis (links to trends, demand and training)
• length in keyworking service (agreed definition – capture dates required to meet definition: referral, start of keyworking, step down, date of discharge)
• amount of contact (direct/indirect)
• date step down started
• date of discharge
• admission avoidance (defined and agreed locally)
• reason the child or young person did not consent to the keyworking function (if applicable)
• reason the parent carer did not consent to the keyworking function (if applicable)
• outcomes of children, young people and their parent carers

6.2 Keyworking services should use validated tools to collect outcome information for children and young people, and their parent carers over time

Commissioners also need to understand the impact keyworking has on children and young people as well as on their parent or carer. This should be gathered using validated tools such as the Goal Attainment Scale* for children and young people and the Adult Social Care Outcomes Toolkit (ASCOT Carer SCT4) for parent carers. These are both free for non-commercial use. Alternatively, there may be other tools; the importance is that all children and young people and parent carers are included in measurement of impact and that Keyworkers within a service use the same tool in the same way. Where there is more than one Keyworking service in an ICB area, commissioners should specify that both use the same measures to enable a consistent collective view of impact in their area and compare them if needed.

*The GAS (Light version) was used, and the record sheet adapted, for keyworking for use in the national evaluation with permission from the authors. More information is available from: Goal Attainment Scaling: Overview | Cicely Saunders Institute of Palliative Care, Policy and Rehabilitation | King’s College London. Resources used for the evaluation are on the Futures collaboration platform.

6.3 All children and young people and parent carers should be asked to share their experiences of keyworking, independent of their own Keyworker

Commissioners should be hearing the voices of the full range of children and young people in the service, irrespective of whether they had a positive experience of the service or not, to support future planning, development and delivery. To ensure objectivity and make sure children and young people and parent carers feel able to share their true feelings, those wanting to understand their views should speak to a cross section of service users; this should not be done by their Keyworker. The experience of service users can be helpful in promoting the service to others.

Minimum standard 7: Escalating issues of concern

7.1 There should be appropriate and clear governance in place to manage issues of concern

Governance should be across all partners and subject to high-level ICB oversight, for example the executive lead for learning disability and autism, or children and young people.

7.2 There should be clear routes of escalation for any concerns identified by keyworking services and timely senior intervention to resolve these issues

There should be links with the C(E)TR oversight panel, so that any issues or concerns that may arise for children and young people who are inpatients can be appropriately escalated as necessary and in line with NHS England’s DSR/C(E)TR guidance.

Publication reference: PRN00598