People have the right to be involved in discussions and make informed decisions about their care, as described in NICE's information on making decisions about your care.
Making decisions using NICE guidelines explains how we use words to show the strength (or certainty) of our recommendations, and has information about prescribing medicines (including off-label use), professional guidelines, standards and laws (including on consent and mental capacity), and safeguarding.
These recommendations cover service organisation, including working culture, training, integrated working and commissioning. There are also recommendations in this guideline on:
The government's special educational needs and disability (SEND) code of practice is the primary guidance for processes around SEND.
This NICE guideline makes recommendations on how existing legislation and statutory guidance should be put into practice. When there is evidence that existing legislation and statutory guidance is not being implemented, the guideline recommendations reiterate this and provide further guidance to help with implementation.
Education, health and social care practitioners should collaborate to develop a positive working culture and:
take time to develop positive relationships with each other
treat everyone involved in the care of the disabled child or young person with severe complex needs as equals
encourage open discussion
be sensitive and constructive when challenging someone else's professional opinion.
If the key practitioners involved need to change, organise a handover to avoid disruptions in care. Tell the child or young person and their family about the change and update any new practitioners on the child or young person's history.
Education, health and social care practitioners should learn about the responsibilities of other people and services involved in supporting the child or young person. They should use this knowledge to provide more wide-ranging and coordinated support and information (outside their own specialty) to the child or young person and their family and carers, and to reduce the number of different people the family have to contact.
For a short explanation of why the committee made these recommendations and how they might affect services, see the rationale and impact section on all education, health and social care practitioners.
Full details of the evidence and the committee's discussion are in:
These recommendations also apply to local authorities when they provide services.
Education, health and social care services and managers should ensure that practitioners have dedicated time for team and relationship building.
For a short explanation of why the committee made this recommendation and how it might affect services, see the rationale and impact section on working culture.
Full details of the evidence and the committee's discussion are in evidence review K: barriers and facilitators of joined-up care.
These recommendations should be read alongside paragraph 2.21 of the special educational needs and disability (SEND) code of practice.
The level of key working support for disabled children and young people with severe complex needs should:
be flexible
be tailored to individual needs
take account of their family circumstances.
Senior managers in education, health and social care services should work together to ensure that:
each disabled child and young person with severe complex needs has a practitioner providing them with key working support
these practitioners have the training, time and resources needed to provide this support, taking into account their other commitments.
Managers should ensure that interagency team members understand what key working support involves.
The practitioner who is assigned to provide key working support should:
become part of the interagency team
be someone the child or young person is comfortable with
get to know the child or young person well and understand their needs
be identified based on the child or young person's individual needs and preferences (for example, if they mainly have healthcare needs then a healthcare practitioner would be best).
Provide children and young people and their families with contact details for the practitioner providing them with key working support.
Interagency teams should work with managers to assign a practitioner to provide key working support for each child and young person.
Practitioners providing key working support should:
coordinate meetings, timings and records between the different services involved, and with the child or young person and their family and carers (this should not be left to parents or carers to arrange themselves)
keep other practitioners updated with changes in the child or young person's care (for example, by sharing hospital letters with their school)
help the child or young person and their family and carers to navigate services
be available for discussions between reviews and meetings if the child or young person has questions or needs more support.
If the practitioner who provides key working support needs to change, managers should:
work with the interagency team to assign a new practitioner (chosen based on the child or young person's needs and preferences, and not just because they do the same job as the old practitioner)
organise a handover
ensure the new practitioner is updated on the child or young person's history, preferences, goals and ambitions
ensure the handover is supported to ensure continuity of care
ensure that everyone involved is told about the change (the child or young person, their family and carers, and all relevant education, health and social care practitioners).
Practitioners who provide key working support should support families when they move area (in particular, to help families who move area regularly), by:
identifying practitioners in their new area to share relevant information with, to ensure continuity of care and support
giving a copy of this information to the child or young person and their family and carers
telling practitioners in their old area that the family are moving
telling practitioners who are responsible for providing environmental equipment that the family are moving.
Managers should have a contingency plan for how to maintain consistency if the practitioner providing key working support leaves.
Education, health and social care services should have governance and information sharing arrangements in place to ensure that practitioners providing key working support can work effectively with all the different organisations involved.
For a short explanation of why the committee made these recommendations and how they might affect services, see the rationale and impact section on key working support.
Full details of the evidence and the committee's discussion are in:
Education, health and social care services should consider looking for ways to make what they do and how they work together more transparent to children and young people.
For a short explanation of why the committee made this recommendation and how it might affect services, see the rationale and impact section on making processes easier to understand.
Full details of the evidence and the committee's discussion are in evidence review K: barriers and facilitators of joined-up care.
Education, health and social care services should consider training practitioners to understand the roles of other people and services involved in the care of children and young people.
Education, health and social care services should work with local authorities to provide training for education practitioners on how to include and support disabled children and young people with severe complex needs in mainstream education.
Education, health and social care services should provide training for practitioners to help them recognise:
social, emotional and mental health needs
internalising symptoms (such as anxiety and depression).
Education, health and social care services should work together to develop joint training for all practitioners on:
working with disabled children and young people with severe complex needs
taking their views into account, and supporting them to achieve their life goals
how to adapt communication for children and young people who communicate differently
use of communication aids.
Education, health and social care services should consider running training workshops for practitioners from all 3 sectors, covering needs that are present in all settings (for example, safe eating and drinking, personal care and language development).
Education, health and social care services should provide practitioners with opportunities to observe practitioners from different sectors working with the child or young person.
Education, health and social care services should work with each other to agree consistent messages and ensure that their staff understand:
how their contributions affect education, health and care (EHC) needs assessments
how the contributions of individual staff fit together to show what support the child or young person needs
how their contributions will affect the EHC plan outcomes that will be agreed for the child or young person.
When developing awareness training programmes, involve children and young people and parents and carers in:
deciding what to cover in the training
deciding how to structure and evaluate it
delivering the training (if appropriate).
Education, health and social care services should consider providing short-term observational placements for practitioners from other sectors (as part of induction and then annually). Design these placements to help practitioners learn about children and young people's needs in different contexts, and to understand how other services work to meet those needs.
Services that provide short-term observational placements should ensure that interagency teams have a process for providing these placements.
For a short explanation of why the committee made these recommendations and how they might affect services, see the rationale and impact section on training for practitioners.
Full details of the evidence and the committee's discussion are in:
When training support workers to undertake delegated clinical tasks, registered healthcare professionals should follow guidance on training and competency from the Care Quality Commission, the General Medical Council, the Nursing and Midwifery Council, the Health and Care Professions Council, and the professional organisations that align to these. In particular, registered healthcare professionals should:
only train support workers to carry out delegated clinical tasks if these workers are employed and insured for these tasks, and accountable for their professional conduct
after delivering training, actively assess the competency of support workers to carry out delegated clinical tasks at the required standard
ensure that ongoing clinical supervision arrangements are in place for support workers.
For support workers who have been delegated clinical tasks by healthcare practitioners, health and social care employers should follow guidance on training and competency from the Care Quality Commission, the General Medical Council, the Nursing and Midwifery Council, the Health and Care Professions Council, and the professional organisations that align to these. In particular, health and social care employers should:
ensure support workers are competent to carry out these tasks
ensure the type of delegated work they are expected to carry out is specified in their job descriptions
put indemnity insurance in place for delegated clinical tasks
ensure that training providers or other suitable organisations will provide ongoing supervision of support workers when a clinical competency must be assured to be at a required standard
agree a joint incident investigation policy with relevant education, health and social care partner organisations (using the framework set out in the NHS Quality Board Position Statement on Quality in Integrated Care Systems), covering:
reporting of incidents
who will lead investigations
when a collaborative investigation is needed.
For parents and family members who have been delegated clinical tasks, healthcare practitioners should follow guidance from the Care Quality Commission, the General Medical Council, the Nursing and Midwifery Council, the Health and Care Professions Council and the professional organisations that align to these. In particular, practitioners should:
train parents and family members to undertake delegated clinical tasks and use any equipment needed to undertake these tasks
after training, actively assess the competence of parents and family members to carry out delegated clinical tasks at the required standard
provide parents and family members with ongoing clinical support from an agreed named contact
set up a process for parents and family members to report problems or to request further training.
Education, health and social care services should periodically jointly request feedback from children and young people and their families and carers on how well they have worked together with the other services involved in their care and support.
Services should periodically jointly request feedback from children and young people and their families and carers on how well they worked together with them.
Services should have processes in place for addressing the feedback of young people and their families and carers, if they are not satisfied with the support they have received.
For a short explanation of why the committee made these recommendations and how they might affect services, see the rationale and impact section on delegated clinical tasks and feedback.
Full details of the evidence and the committee's discussion are in:
Education, health and social care services should:
organise all the practitioners working with the child or young person into an interagency team
ensure that interagency teams include practitioners with the skills and experience to address all of the child or young person's needs (from birth to 25 years).
Education, health and social care services should develop procedures for resolving disagreements that arise within interagency teams.
Interagency teams should ensure that the child or young person's needs are met in all settings (for example, if they communicate differently, make sure they have support at home and in school).
Interagency team members should share their experiences of supporting the disabled child or young person within the team, so they can learn from each other and gain a broader understanding of the needs of the child or young person.
In interagency team meetings, members should share specialist knowledge and sources of support with practitioners outside of their speciality. This could include:
changes in clinical practice, legislation or statutory guidance
particular caring techniques
professional networks
other organisations that can provide support (such as patient organisations).
For a short explanation of why the committee made these recommendations and how they might affect services, see the rationale and impact section on interagency teams.
Full details of the evidence and the committee's discussion are in:
When commissioning education, health and social care services for disabled children and young people with severe complex needs:
focus on early intervention and multi-agency involvement to identify, assess and address needs
only make long-distance placements if options to provide care and support close to home and within their community are not suitable for their needs and outcomes
specify outcomes in contracts, and avoid contracts that only describe what services should be provided
think about how each service will fit in and work with other services, and how commissioning changes in one service may affect other services and the ability to provide integrated education, health and social care support.
Local authorities and health commissioners should plan how funding and services will be organised across education, health and social care for young people once they turn 18 or transition to adult services, to ensure continuity of support to meet their needs and outcomes.
Do not restrict access to services based solely on:
what support people have previously received
whether or not they have a particular diagnosis, or no diagnosis at all (unless there is a medical reason for these restrictions).
Do not deprioritise children and young people who are having an education, health and care (EHC) needs assessment solely to meet organisational targets, or because statutory deadlines have been missed.
Commissioners, local authorities and service providers should make referral and joint working easier by:
establishing clear processes and criteria for referring children and young people, both within services and between different services
making information about these processes easily available, so practitioners know how and when to make a referral.
When commissioning education, health and social care services, commissioners should:
check with disabled children and young people with severe complex needs and their parents and carers, to ensure services meet the needs of the local population
involve disabled children and young people and their parents and carers in planning services
work with children, young people and their parents and carers to ensure their participation is effective and their role in planning is clear
focus on outcomes and personalised services.
Involve disabled children and young people in the review of existing services, by asking for their feedback on how services are working.
Commission services based on the needs of children and young people, rather than expecting them to just use the services that already exist.
For a short explanation of why the committee made these recommendations and how they might affect services, see the rationale and impact section on local authorities and health commissioners.
Full details of the evidence and the committee's discussion are in:
Local authorities should consider notifying services and commissioners before making changes to their processes for producing EHC plans (for example, changes in the plan format or the information they require from practitioners).
Local authorities should consider involving services and commissioners with these changes, if they can do this without delaying support or assessments for children and young people.
Local authorities should provide training on EHC plans and related processes for education, health and social care practitioners, covering:
an explanation of the EHC needs assessment process and how an EHC plan is developed
guidance on filling in templates and contributing advice and information to support an EHC plan.
Local authorities should provide training on how to write EHC plans for practitioners in their special educational needs and disability (SEND) team.
Local authorities must provide a range of short breaks for disabled children and young people with severe complex needs, in line with the Breaks for Carers of Disabled Children Regulations 2011.
For a short explanation of why the committee made these recommendations and how they might affect services, see the rationale and impact section on coordinating EHC plan process changes with local services, training and short breaks.
Full details of the evidence and the committee's discussion are in:
Local authorities should include the following in their SEND Local Offer:
a comprehensive explanation of their EHC needs assessment process, which:
includes any eligibility criteria
makes it clear that EHC needs assessments should be requested based on a child or young person's needs, and not on other factors (such as potential availability of funding)
details of what services are available, and the roles of the different services and practitioners
a list of support groups for disabled children and young people who use assistive technologies
details of the leisure activities (including social activities) and related support available to disabled children and young people
details of the employment support they offer disabled young people.
Tell all children, young people and their families that they can give feedback on the SEND Local Offer, in line with the Children and Families Act 2014 and the SEND Regulations 2014.
For a short explanation of why the committee made these recommendations and how they might affect services, see the rationale and impact section on what to include in the SEND Local Offer.
Full details of the evidence and the committee's discussion are in:
Integrated care systems and local authorities should develop a joint commissioning framework to use when commissioning services across education, health and social care.
Commissioners should specify in their contract requirements that education, health and social care services should work together in an integrated way to support disabled children and young people with severe complex needs.
Senior managers in education, health and social care services should have formal processes in place to support interagency team working (see the recommendations on decision making and information sharing and privacy).
Education, health and social care providers should make arrangements or agreements setting out how they will work together in an integrated way to support disabled children and young people with severe complex needs.
Healthcare professionals should check that children and young people with severe complex needs and a learning disability or autism are included on a locally maintained dynamic support register.
Health commissioners should ensure that education and social care services:
know about the dynamic support register
are consulted regularly to ensure the register is maintained effectively.
For a short explanation of why the committee made these recommendations and how they might affect services, see the rationale and impact section on improving how local authorities, commissioners and services work together.
Full details of the evidence and the committee's discussion are in: