NHS England, provider collaboratives and integrated care boards (ICB) have a responsibility to set up a support network that will be responsible for recruiting and supporting expert advisers that includes experts by experience (people with learning disability, autistic people and family carers) and clinical experts.

Each Care (Education) and Treatment Review (C(E)TR) should be person focused. If the review is for a child or young person, the inclusion of a children’s social care or education professional on the panel should be considered. If the review is for a person with specific physical health needs or a complex medication regimen, the panel may need an additional clinical expert (for example, a pharmacist) with the relevant skillset.

Panel members need to be guided by the policy and hold each other to account on this. The C(E)TR panel must include a chair, an independent clinical expert and an independent expert by experience.

Chair role

The chair is usually the responsible commissioner. If they are unable to attend the review, they must delegate authority to undertake this role to someone with the relevant skills and experience. Where a delegated chair is used, the responsible commissioner must ensure they have sufficient knowledge of the person and their history and have the ability and authority to make decisions in the commissioner’s absence. The delegated chair must also ensure good communication with the responsible commissioner prior to and following the review. The chair is responsible for ensuring that all panel members feel able to contribute to the review and that their views are reflected in the final report and recommendations. It is important to note that a chair with delegated authority is not independent in the same way that the clinical expert and expert by experience are as they are acting on behalf of the responsible commissioner.

Independent clinical expert

Someone with a relevant health professional qualification and active registration with a relevant professional body. They should also hold professional indemnity insurance that covers them to practise on an independent basis. They must ensure there are no conflicts of interest to prevent them acting independently (see below).

Expert by experience role

Someone with relevant lived experience or a close family member of someone with relevant lived experience. They must ensure there are no conflicts of interest to prevent them acting independently (see below for further information).

It is essential that panel members are asked about and supported with any reasonable adjustments that they require prior to undertaking the review. This is particularly important for the expert by experience role where panel members may be autistic or have a learning disability. Their sensory and communication needs will be an important consideration when undertaking the review and they (or their supporter) should be given the opportunity to share this information in advance. For example, adjustments may need to be made with the sharing of any documentation and allocated reading time.

Face-to-face Care (Education) and Treatment Reviews

Prior to Covid-19 all Care (Education) and Treatment Reviews were held face to face. The learning and feedback from working remotely and undertaking virtual reviews during Covid-19 has been carefully considered. Whilst there has been some feedback highlighting benefits for panel members and some people feeling more comfortable speaking to a panel remotely, there have also been concerns raised that a face-to-face visit is required to ensure a thorough, person-centred review is carried out. The safe and wellbeing reviews and the thematic review from phase 1 of the Independent Care Education and Treatment Review project highlighted the importance of visiting an environment and person to gain the most informed review of their current care and treatment. The refreshed key lines of enquiry documents will include ‘sit and see’ and “face to face” elements that will be essential to undertake in person.

Conflicts of interest

Due to the independent nature of the expert by experience and clinical expert, conflicts of interest are an important consideration within the Care (Education) and Treatment Review (C(E)TR) process. Panel members are responsible for declaring any potential conflicts of interest as soon as they become aware of them. Some examples of conflicts may include (but are not limited to):

1. Previously having worked with the individual.
2. Previously having worked for or have acquaintances with the provider/staff.
3. Having had a family member be an inpatient at the hospital.
4. Having had a family member under the clinical care of one of the multidisciplinary team.
5. Having been an inpatient at the hospital.

Conflicts should be raised with the responsible commissioner immediately so that a discussion can take place and where required, an alternative panel member can be sought as soon as possible.

Confidentiality and data sharing

Each integrated care board, provider collaborative and commissioner should ensure they demonstrate compliance with the six principles of the data protection act. All panel members must act in accordance with contractual agreements aligned to partnership guidelines and their professional code of conduct.

Training requirements

Health Education England is working with partner agencies to develop a suite of Care (Education) and Treatment Review (C(E)TR) training modules. These will include core, mandatory and skills modules that will be available to all panel members at no cost to local systems. For existing panel members, they will be expected to undertake the mandatory modules within six months of the release date of the training. New panel members will be expected to undertake the mandatory training prior to commencing their role. If mandatory training is not completed within the timeframes, then they will not be able to be part of a panel until the mandatory training is completed.

As the mandatory training remains in development, please follow local current training guidance.

About the expert by experience role

Role summary

• To work alongside clinicians, commissioners and chairs carrying out the review of a person’s care and treatment.
• To bring another viewpoint that comes from a person’s own experience. This experience may have been as someone with a learning disability or as an autistic person, who uses or is supported by services. The expert may have had experience of admission to a specialist learning disability or mental health hospital or have had extra support to avoid admission. The expert by experience needs to consider whether their experience is appropriate to the person receiving care.
• Alternatively, they may have experience of being a family member of someone with a learning disability or someone who is autistic.
• To assist the panel in helping to communicate with service users and families. To also help the panel to better understand the person’s views and experience.
• To support and advocate for equality, diversity and human rights at all times.
• The role of the expert by experience is not expected to have on-going involvement with the person beyond the review. Prior to the review there may be pre-reading, and post review experts by experience may be required to comment on draft reports and recommendations.
• This role is not one that should ever be undertaken by someone who has had solely professional experience of working with people who have a learning disability, autism or both. For example, as a health care support worker or an advocate.

Main responsibilities

• To be willing to share introductory information about themselves with the person being reviewed.
• To be involved as an equal member of the review team.
• To use the Care and Treatment Review key lines of enquiries as the tool for reviews.
• To attend induction training, mandatory training and other specific training identified.
• To follow the policy and procedures of NHS England or integrated care board as well as the NHS England or integrated care board code of conduct and confidentiality agreement.
• To contribute to the final report highlighting key findings and recommendations on the day of the review. The chair is responsible for writing and submitting the final report.

How the expert by experience role works in practice

Experts involved in reviews need to:

• Tell the review lead if there are issues that they would find too upsetting to listen to (for example, histories of abuse).
• Attend on time and be present for the whole review.
• Ensure reasonable adjustments are shared prior to the review if required.

Experts take part in the review by:

• Being part of the introductory meeting and getting a brief “pen-picture” of the person being reviewed. At times the expert by experience may be asked to carry out some face-to-face elements of the review.
• Speaking with the person and their family – alone or with other review team members.
• Speaking with staff who work directly with the person and who know them well.
• Being supportive to family members who may attend the review.
• Being part of the feedback session at the end of the day.
• Making notes or writing parts of the report (with assistance when needed) which is handed to the chair/commissioner of the review at the end of the day.
• Completing feedback forms on being part of a review.
• Discussing and commenting on the report before it is completed. 

The skills or experience an expert by experience needs

Knowledge and experience

• Bring personal experience of either being a person with a learning disability or an autistic person who may have used hospital services, community services or both, or being a family carer for someone who is a user of services either as an inpatient or supported in the community.
• Bring personal experience of working with services, commissioners, or providers to enable discharge from hospital and support people to live in the community.
• Have a good understanding of the Care (Education) and Treatment Review policy and guide and its key principles.
• Understand and be committed to equal opportunities and diversity.
• Have an understanding and experience of person-centred approaches and how this should shape people’s care and support.
• Have an understanding about what good support looks like in the community.
• Have a broad understanding of positive behavioural support

Skills

• Be able to communicate directly with people who use services and their families in a range of ways.
• Be able to contribute to compiling a report (with or without support).
• Be able to keep information confidential.
• Be able to ask questions about the person’s care and treatment and challenge poor practice.
• Be able to recognise what good practice and services look like. 

Personal attributes

• To be reliable and punctual.
• To be flexible in approach and solution focussed.
• To be able to reflect on findings and thoughts as part of a team.
• To be prepared to accept support in carrying out a thorough and focussed review and in reaching a shared outcome.

Other important things

• Be able to travel to reviews (with or without support).
• Be able to use email and phone to communicate (with or without support).
• To have a Disclosure and Barring Service (DBS) check if not already in place.
• To be aware of any conflicts of interest and to make these known to the review co-ordinators before any reviews take place (see notes above).
• To understand and accept that conflicts of interest may make it inappropriate to take part in a particular review.
• To have signed a confidentiality agreement.

About the clinical expert role

Role Summary

• To work alongside experts by experience and chair/commissioner in carrying out review of a person’s care and treatment.
• The clinical expert will be someone with a relevant health professional qualification and active registration with a relevant professional body. They should also hold professional indemnity insurance that covers them to practise on an independent basis.
• The clinical expert will be able to offer a different perspective to the existing clinical team and will engage the person, their family and their local team in discussion to identify if there are barriers to discharge or to identify what support would enable the person to live their life in the community.
• The clinical expert needs to consider whether their experience and expertise is appropriate and relevant to the individual’s clinical care and treatment that they will be reviewing.
• The clinical expert, where required, will advise the other members of the team on matters such as the Mental Health Act and Mental Capacity Act, diagnosis, mental and physical health issues, medication, treatment options and their evidence base.
• Clinical experts are expected to promote equality, diversity and human rights throughout their role. 

Main responsibilities

• To be willing to share introductory information about themselves with the person being reviewed.
• To be involved in the whole of the review process to include pre-reading and providing feedback on draft reports.
• To use the Care and Treatment Review key lines of enquiries as the tool for reviews.
• To ensure that evidence-based practice and National Institute for Health and Care Excellence (NICE) guidelines are followed, and to ensure that NICE guidelines are adhered to in the person’s clinical notes.
• To provide an independent clinical opinion, free from commercial or other organisational interest.
• To attend induction training, mandatory training and other specific training identified as necessary.
• To follow the policy and procedures of NHS England or integrated care board as well as the NHS England or integrated care board code of conduct and confidentiality agreement.
• To be confident and competent in supporting the completion of all elements of the key lines of enquiry tool. Each review will require a personalised focus and therefore, the clinical expert must ensure they have the expertise to assess, review and make recommendations.
• To support the Care (Education) and Treatment Review chair to complete a review report highlighting key findings and recommendations on the day of the review.

How the clinical expert role works in practice

Experts involved in reviews need to:

• Talk to the chair before the visit to gain overview of person receiving the review.
• Ensure their skills meet the needs of the person receiving the review.
• Attend the review punctually and to remain throughout the whole review.
• Receive and read the review materials and accompanying guidance and protocols.

Experts take part in the review by:

• Enabling a brief pen picture of the patient to be obtained in the introductory meeting.
• Meeting the person whose care and treatment is under review, staff and families – alone or with other review team members (face-to-face element of key lines of enquiry).
• Undertaking an environmental review of the clinical setting (sit and see).
• Being part of the feedback session at the end of day and facilitating the process of discussion, challenging current practice and opinions where necessary and forming conclusions and recommendations for future care.
• Writing own notes or part of the report, all of which is handed to the Care (Education) and Treatment Review chair at the end of the day.
• Discussing and commenting on the report before it is completed.
• Completing feedback forms on being part of a review.

The skills or experience a clinical expert needs

Knowledge and experience

• Have current, substantial, and demonstrable experience of community models of support for people with a learning disability and autistic people who have mental health diagnoses and/or can present behaviours perceived as challenging.
• Understand and operate within policy guidance and a person-centred framework.
• Be able to demonstrate that they have worked with people with a learning disability, autistic people, and family carers as equal partners.
• To understand, and have a commitment to, equal opportunities, diversity and human rights.
• Understand what “good” looks like in services for people with a learning disability and autistic people both in hospital and the community.
• To understand when hospital admissions may be counter-productive in an individual’s care.
• Have experience of setting up packages of community support for people with a learning disability and autistic people who may be seen as challenging, in partnership with the individual their family and other key partners.
• Have experience of avoiding admission to inpatient services for people with a learning disability and autistic people who may be seen as challenging.
• Have experience of risk assessment and constructive, positive approaches to risk management.

Skills

• Be able to communicate directly and effectively with people who have a learning disability, autistic people, and their families.
• Be able to challenge existing practice.
• Be able to make holistic assessments of individuals as well as their family, social and physical environment and how these relate to emotional and behavioural aspects of the person.
• Be able to work in an open and respectful partnership with others in multidisciplinary teams and with service users and families.
• Understand the application of Information governance policy.

Personal  attributes

• To be reliable, punctual and flexible.
• To believe that people with a learning disability and autistic people have the right to live an ordinary life in the community and not live in a hospital or other segregated settings.
• To be open to joint learning and participate in training and reflection.
• Be able and willing to take responsibility for own physical and mental health or seek support if needed.
• Be able to reflect on own experience and practice and ask for support where necessary.

Other important things

• To be registered with the relevant regulating professional body and in good standing with their specialist professional organisation (for example,, the Nursing and Midwifery Council, the British Psychology Society or the Royal College of Psychiatry).
• Be able to travel to reviews (with or without support).
• Be able to use email and phone to communicate (with or without support).
• To have a Disclosure and Barring Service (DBS) check if not already in place.
• To be aware of any conflicts of interest and to make these known to the responsible commissioner in advance of the review (see conflicts of interest section above).
• To understand and accept that conflicts of interest may make it inappropriate to take part in a particular review.
• To have a signed a confidentiality agreement.

Payment

Payment for panel members is currently undertaken in several different ways. For reviews that are commissioned by NHS England or provider collaboratives, experts are required to be employed for tax purposes.

For integrated care board commissioned reviews, experts are currently required to provide an invoice for payment and are responsible for their own tax arrangements. In some areas, third sector organisations have a sub-contracting arrangement for experts by experience.

As part of the consultation for this policy update, a decision has been taken to review the current suggested minimum rates of pay for experts.

Suggested new minimum rates of pay

These rates of pay should not be viewed as a day rate. They are for the whole review and include any pre-reading requirements and any follow up actions taken as a panel. For experts by experience this reflects the NHS England policy for working with patient and public voice partners.

The role of both the expert by experience and clinical expert should be valued for the different skills and experience that they bring to the panel. It is recognised that the clinical expert will be professionally accountable for their role within the Care (Education) and Treatment Review in accordance with the requirements of the professional body that they hold active registration with.

Expenses

There are different arrangements for claiming expenses. Where experts are employed, they should liaise with their recruiting manager to clarify the process for claiming expenses within the employing organisation. For reviews where panel members are invoicing payments, they should liaise with the commissioner to confirm the agreed amount that they can invoice for expenses (such as mileage).