Publication reference: PR1486
“I hope this new policy supports people to work better together so that people with a learning disability and autistic people get the right support to stay well and have a good life”. Dr Roger Banks who leads the Learning Disability and Autism programme at NHS England
“I have worked on this policy for the past two years. I am a person with lived experience, and I am excited for everyone to see the policy I have helped write. I think the policy will help local health and care services to make sure people with a learning disability and autistic people in their area get support, so they do not need to go into hospital”. Conor Eldred-Earl, Expert by Experience Advisor from the Learning Disability and Autism programme at NHS England
“People with a learning disability, autistic people and their families have helped to make all of the decisions in this policy. Yvonne said: “They have been spoken to and listened to every step of the way”. Yvonne Newbold MBE started the charity Newbold Hope and she is an NHS Assembly Member and a mother.
The NHS has written a policy called Dynamic support register and Care (Education) and Treatment Review policy and guidance.
A policy can be a plan, or a list of rules used to make decisions.
This is the first policy by the NHS about dynamic support registers.
What is a Dynamic support register?
A Dynamic support register is sometimes called a DSR.
A Dynamic support register is a list of people with a learning disability and autistic people who need support.
People on the Dynamic support register are at risk of going into hospital if they do not get the right care and treatment in the community.
Organisations that manage dynamic support registers will have policies they must follow.
The list tells health and care staff about the type of support a person with a learning disability or an autistic person needs to stay well at home.
Care (Education) and Treatment Reviews
What is a Care and Treatment Review?
A Care and Treatment Review:
- makes sure adults get the right care and treatment
- looks at how to make care and treatment better for adults.
Sometimes a Care and Treatment Review is called a CTR.
A CTR is not the same as an annual health check.
A CTR is for people who are at risk of going into hospital or who are already in hospital, which includes:
- young people
- adults with a learning disability or autism.
A Care (Education) and Treatment Review is different to a Care and Treatment Review because it is for children and young people and includes their education needs.
Sometimes a Care (Education) and Treatment Review is called a C(E)TR.
In the past there has been a policy about CTRs and C(E)TRs. This policy needed to be updated.
In the new policy the NHS has put together information about:
- Dynamic support registers (DSRs)
- Care (Education) and Treatment Reviews.
This should make sure local health and care services support people with a learning disability and autistic people, so they only go into hospital if they really need to.
The new policy means:
- every time someone has a C(E)TR the DSR is updated to show if their risk of going to hospital has changed
- a record of what was agreed at the C(E)TR is kept on the DSR records.
- anyone can ask for a C(E)TR, but you will only get a C(E)TR if your support needs show it is right for you.
This policy was written by:
- using information from DSRs that are already working in some areas of England
- using information from C(E)TR meetings that have already taken place
- learning from people with different lived experiences.
The NHS is going to make lots of new information available about the policy and guidance.
The Dynamic support register
What does the Dynamic support register do?
Lots of health and care organisations that already have a Dynamic support register (DSR) use a colour system to show different levels of risk.
This helps health and care workers to decide how much risk there is of someone going into hospital.
Red is for people who are at high risk of going into hospital straight away.
Amber is for people who are at high risk of going into hospital if they do not get the right care and treatment soon.
Green is for people who are having their risks managed well at home.
Blue is for people who are already in hospital.
The DSR is then used to make sure that the right checks are carried out by health and care teams.
Using the colour system means:
- a Care and Treatment Review or Care (Education) and Treatment Review might take place
- health and care teams can make sure they provide the right care and treatment.
Local health and care organisations need to make it possible for people to ask to go on the DSR.
People will only go on the DSR if their needs show they are at risk of going into hospital.
When they go on the DSR their level of risk would be looked at.
For someone to go on the DSR they would have to give their consent – more information can be found in the consent section of this document.
What are Care (Education) and Treatment Review panels?
Care (Education) and Treatment Reviews (C(E)TRs) are independent meetings about your care and treatment.
They are run by a group of people called a C(E)TR panel.
C(E)TR panels include people who are not involved in your everyday care.
This helps the panel to be independent when they discuss your care and treatment at the C(E)TR meeting.
The panel members listen to you and to everyone who is involved in your care.
They look at your notes and check that your care and plans are working well.
The C(E)TR panel
There are three people that must be part of any C(E)TR panel.
- runs the meeting
- makes sure the meeting is run well
- makes sure that everything that was agreed at the meeting goes into an action plan.
- makes sure the agreed actions listed in the action plan go ahead.
An expert by experience:
- someone who has lived experience
- supports the meeting
- helps to decide what is in the action plan.
A clinical expert:
- independently checks the care and treatment
- supports the meeting
- helps to decide what is in the action plan.
What happens at the C(E)TR meeting?
Other people will be invited to the meeting including:
- someone you trust such as a family member, a friend or carer
- health professionals
- social care professionals
- advocates or self-advocates
- an education professional
- someone from your community team.
How does a Care (Education) and Treatment Review work?
The most important thing about a Care (Education) and Treatment Review (C(E)TR) is that it is about you.
You should get the chance to talk about:
- your safety
- how you feel about the care and treatment you are getting
- what your daily life is like
- if your physical health needs are being met
- putting a plan in place for your future
- if you need to stay in hospital to carry on getting care and treatment.
The C(E)TR will also:
- look at any care plans you already have
- make sure the care plans are right for you and they are keeping you safe.
The plans should give you the chance to live as independently as possible.
Who should have a Care (Education) and Treatment Review?
You may have a Care (Education) and Treatment Review (C(E)TR) in a hospital or in the community.
If you have a C(E)TR in hospital the staff will make plans to support you to go home from hospital when you are well enough.
A C(E)TR in the community looks at the extra support you need at home and in your local area.
Getting the right care and treatment at the right time could mean you only go into hospital when you really need to.
Who can ask for a Care (Education) and Treatment Review?
Anyone can ask for a Care (Education) and Treatment Review (C(E)TR) but you will only get one if your support needs show you should have one.
Sometimes other people might ask for you to have a C(E)TR such as:
- a family member or carer
- the person who plans and pays for your care
- your advocate – someone that you trust to support you and speak up for you
- the team who support you while you stay in hospital
- the team who support you in the community.
To have a C(E)TR you will need to give your consent.
What happens after a Care (Education) and Treatment Review?
The person who leads the Care (Education) and Treatment Review (C(E)TR) writes a report about what needs to be done.
- checks that you are getting good care and treatment
- suggests how you could get better care and treatment.
The report should be written in a way that is easy to understand.
If there are any difficult words you can ask someone to go through the report or action plan with you.
The report is sent by the chairperson to:
- you and the people who manage your care and treatment
- the people who were at the C(E)TR.
What to do if you a have a problem with a Care (Education) and Treatment Review
The first person to speak to about a problem with a Care (Education) and Treatment Review (C(E)TR) is usually the C(E)TR chairperson – this is the person who leads the meeting.
Anyone can talk about a problem or worry that you have such as:
- your family
- a health or social care professional.
If you have a problem with your C(E)TR speak to someone you trust to support you such as:
- your named nurse
- your advocate
- a family member.
How has the Care (Education) and Treatment Review policy changed?
The new Care (Education) and Treatment Review (C(E)TR) policy looks more closely at:
- physical health
- quality of life
The new policy says that a C(E)TR should be set up:
- six weeks after you go into hospital if you have already had a C(E)TR in the community
- if you go to another hospital or you move to a ward in the same hospital with higher or lower security
- if you find out you are autistic or have a learning disability when you are in hospital or after you leave hospital
- if a clinical review shows that you are not autistic or do not have a learning disability when you have been told before that you are autistic, or you have a learning disability.
Do I have to go on the Dynamic support register (DSR) or have a Care (Education) and Treatment Review (C(E)TR)?
No. You will be asked if you agree to:
- go on the DSR
- have a C(E)TR.
This is called consent.
You will be asked for your consent each time you are offered a C(E)TR.
If someone is under 16 years old their parents or guardian would need to give consent for them to:
- go on the DSR
- have a C(E)TR.
The child or young person should be asked if they give their consent too.
If someone does not have the capacity to make their own decisions:
- a best interests decision will be taken on their behalf
- a record will be made about the decision.
Local health and care services must make sure that if you do not agree to a C(E)TR:
- it will not affect the care and treatment you receive
- you can change your mind at any time
- you have the right to get support from an advocate to support your decision
- other types of reviews of your care can be looked into.
If you give your consent you are agreeing to share your information with people involved in your care and treatment.
Getting support from an advocate
If you are on the Dynamic support register or having a Care (Education) and Treatment Review it is important that you, your family and your carers can have their say and feel listened to.
An advocate can make sure that your needs, rights and choices are respected.
If you do not have an advocate, you should speak to your named nurse or someone you trust about how to get one.
If you are in hospital, there should be a poster showing your advocate’s name and number.
This document was published in January 2023.
To read the full written policy or other useful information about dynamic support registers and Care (Education) and Treatment Reviews visit the NHS England website.