Clive Treacey Independent Review

The Royal College of Pathologists (RCP) should review how effectively pathologists are implementing guidelines on autopsy practice for death in patients with epilepsy including sudden death and consider how it can support and reinforce their professional responsibility to implement these guidelines.

There should be a specific communication between the National Director and National Clinical Director for Learning Disability Autism from NHS England and NHS Improvement and the Chief Coroner setting out the concerns from this and other reviews seeking further engagement in the work to prevent future deaths of people with a learning disability.

In commissioning care provision (specialist hospital or community) for people with a learning disability and epilepsy, commissioners at a local level (health and social care) should actively assure themselves that care providers are delivering a standard of epilepsy care that is compliant with NICE standards.

Commissioning organisations at a local level (health and social care) should ensure commissioners of care provision for people with a learning disability are equipped with or able to access specialist epilepsy expertise to commission safe and effective care for people with a learning disability and epilepsy.

Regional NHSE/I Learning Disability and Autism Programmes should undertake a capacity and training needs audit to review the capacity and skills of staff to commission safe care for people with learning disabilities who have complex needs including epilepsy.

Commissioners responsible for epilepsy care at a local level should undertake an audit of the effectiveness of local epilepsy services and support for people with a learning disability drawing on the NHS Right Care Epilepsy Toolkit69 and NICE standards to ensure they are meeting the needs of people with a learning disability and epilepsy, and that they are compliant with NICE standards of care.

Care providers (specialist hospital and community) must ensure that the care they provide for people with a learning disability and epilepsy is compliant with NICE epilepsy care standards and that all staff are trained in full to meet these standards.

Commissioners of care for people with a learning disability and epilepsy must ensure that care and service providers take a risk management approach to epilepsy-related death, as recommended in the NHS Right Care Epilepsy Toolkit. This should specifically include application of a standard risk template for people living with epilepsy that crosses organisational boundaries, such as the SUDEP and Seizure Safety Checklist70 tool.

With a view to providing better guidance for clinicians, carers and care professionals in relation to epilepsy and challenging behaviour linked to epilepsy and its management, the National Institute for Health and Care Excellence (NICE) should consider reviewing current guidelines in relation to: • epilepsy and special consideration for people with a learning disability • challenging behaviour and learning disabilities.

Health Education England and the Academy of Medical Royal Colleges should seek to ensure that clinical training for all medical, nursing and care staff highlights the issues of diagnostic overshadowing in people with a learning disability who may be unable to express themselves in traditional verbal communication.

NHS trusts, GP practices and independent care providers (specialist hospital and community) should provide training to raise awareness of the issues of diagnostic overshadowing for people with a learning disability who may be unable to express themselves in traditional verbal communication and equip them to detect early signs of deterioration using tools and approaches for the management of deterioration.

Regional NHSE/I teams should work with health and care systems at a local level to ensure there is a clear focus on diagnostic overshadowing across primary, secondary and community care services and monitor progress.

Care providers must act in line with the guidance that makes it clear that it is their responsibility to maintain and use medical equipment as prescribed.

Commissioners of care provision (specialist hospital and community) must assure themselves in the regular oversight of care, that individuals have access to and are supported to use medical equipment as prescribed.

The Care Quality Commission must ensure that services are compliant with Regulation 15 (that the equipment that is used to deliver care and treatment is clean, suitable for the intended purpose, maintained, stored securely and used properly) and take regulatory action if these standards are not met.

CCGs should work with general practices, consultants and clinicians involved in prescribing medication to ensure regular reviews are taken to monitor the risks and benefits of the combination of prescribed drugs at regular intervals in line with NICE Guidance and best practice outlined in the STOMP campaign (stopping over medication of people with a learning disability or autism).

Commissioners of care provision (health and social care) must require care providers (specialist hospitals and community) to fulfil their duties under the Equality Act 2010 to make reasonable adjustments and meet their duties under the Mental Capacity Act 2005.

Commissioners should actively monitor that reasonable adjustments are being made through the regular review of care for individuals and through contract compliance processes. Providers should be held accountable where this is not met.

Primary, secondary, tertiary and independent care providers (specialist hospital and community) should provide training to raise awareness of reasonable adjustments and ensure staff are equipped to support people with a learning disability, autism or both to access services effectively.

Regional NHSE/I teams should work with health and care systems at a local level to assure that there is a clear focus on awareness and implementation of reasonable adjustments across primary, secondary and community care services and monitor progress.

Commissioners (health and social care) should ensure that processes in place to oversee and review care such as Care and Treatment Reviews (CTRs) are actively reviewing the physical healthcare and meaningful engagement of individuals including monitoring weight gain and physical activity.

The CQC should fulfil its regulatory responsibility to ensure that mental health hospital settings and specialist hospitals for people with a learning disability, autism or both provide good physical healthcare, and meaningful engagement and activity in line with established clinical standards and best practice.

As the professional medical body at the forefront of setting and raising standards in psychiatry, the Royal College of Psychiatrists should consider how it can raise awareness and help to improve standards of physical healthcare and meaningful engagement of people with learning disability in specialist hospital.

Commissioners (health and social care) should ensure that all staff who are involved in developing community-based packages of support are skilled in person-centred life planning. Where achieving discharge is proving difficult, they should appoint an independent life planner.

NHSEI National Learning Disability & Autism Programme should review existing quality standards for the commissioning of care for people with a learning disability, autism or both and consider whether further quality standards need developing or strengthening.

Commissioning organisations (health and social care) should ensure that local commissioners of care for people with learning disabilities, autism or both have the skills and expertise to commission care for people with complex health needs that is safe effective and personalised to meet individual needs. The new Level 5 accredited qualification: commissioning for wellbeing with a learning disability and autism focus can support with this and should be prioritised by health and care systems for commissioner development.

NHSE/I National Learning Disability & Autism Programme should review the uptake of the Level 5 accredited qualification: commissioning for wellbeing with a learning disability and autism focus and put in place measure to improve uptake where this is required.

Commissioning organisations (health and social care) should ensure skilled supervision and development for commissioners which reflects the complexity of their roles.

Commissioning organisations (health and social care) should review the capacity of teams responsible for the commissioning and coordination of care for people with a learning disability at a local level to ensure they are sufficiently structured, equipped and resourced to meet local needs.

CCGs and local authorities should ensure that commissioners and community learning disability teams are encouraged and supported to develop tailored packages of care around individuals’ needs.

CCGs and local authorities should critically review the effectiveness of existing procurement options/frameworks to meet the needs of people with a learning disability and autism in their area.

Health and social care commissioners should ensure that individuals, whether they are in specialist hospital settings, living in residential care, with family or independently, have a named care coordinator who has statutory responsibility for consistently maintaining contact with them and their family.

CCGs should ensure that there is intensive crisis support available at a local level for people with a learning disability to prevent them from reaching crisis and support them when they do.

CCGs should actively work with carers and care providers to identify and provide support to those at risk of admission at the earliest opportunity possible.

NHSEI National Learning Disability & Autism Programme should oversee and seek assurance that crisis support is available and effective.

Commissioners (health and social care) must ensure discharge planning starts before admission, without fail, with a clear timeframe in place. Discharge planning must involve all relevant sectors, who will be involved in providing support in the community working together to think critically about how individuals can be supported to live fulfilling lives in the community.

Before admission to hospital, people have assessments through community teams so that their needs are understood and they have clear and measurable objectives set for their admission to hospital and receive care in an appropriate environment.

On admission to specialist hospitals, further assessments take place, including for autism, sensory, mental health, physical health, trauma, learning disability and any other relevant assessments. This is to ensure that the objectives and care plans are meeting people’s needs. There must be a contract in place stating the timeframe for these assessments to take place.

All specialist inpatient units provide a therapeutic environment to enable the delivery of trauma-informed and person-centred care in line with existing evidence-based models. In particular, autistic people must be cared for in small, person-centred units with the right sensory environment, as recommended by the National Institute for Health and Care Excellence (NICE).

Discharge planning must start before admission, without fail, with a clear timeframe in place. Discharge planning must involve all relevant sectors, who will be involved in providing support in the community.

There must be a named budget holder for the person’s care. Where a new placement is required to enable discharge, the named budget holder, which is likely to be a CCG or local authority, must be responsible for commissioning the identified requirements within an agreed timeframe.

There must be a named community health team lead and a named community social work team lead in addition to the inpatient team and any commissioning professionals for people with complex needs and their families.

There should be a check that families and advocates have full information regarding detention status and their rights and options under the relevant legal framework to enable them to adequately and effectively advocate for individuals – subject to detention under the Mental Health Act.

CCGs should ensure that there is a system in place, which ensures that the views of families are incorporated and reviewed at every level of assurance.

CCGs should ensure that family and carer forums are available so that families can support each other in addressing their concerns with assurance that they will be listened and responded to.

CCGs should ensure access to good quality advocacy, which is an essential safeguard for people, especially people who are non-verbal or extremely mentally unwell, and may be unable to speak up for themselves.

NHSE/I should receive assurance from CCGs that providers of all commissioned services have robust family and patient involvement.

Local authorities and CCGs should urgently review and ensure that adult safeguarding processes in place to protect people with a learning disability are robust and in line with national guidelines.

Staffordshire County Council and Cheshire East Council should jointly commission an independently chaired review of the safeguarding response to historic allegations of sexual abuse in 1993, when Clive was placed with a care provider within the Cheshire County Council geographical boundary. The review should explore the national legal framework and processes that were in place on each of the occasions (1993, 1999, 2011, 2015) when the alleged abuse was disclosed, or concerns were raised by staff or family and the adequacy of the responses. The review should specifically: • Assess the adequacy of the investigations into sexual abuse over the years and confirm its outcome and actions taken. • Review and take action in relation to the potential risk to others who came into contact with the suspected perpetrator at the care setting or elsewhere. • Identify where opportunities for learning exist.

CCGs should ensure that the potential need for individuals to receive trauma-informed care is systematically built into the process for commissioning and oversight of care for people with a learning disability and autism in specialist hospital and community settings.

Providers should ensure that staff are trained in writing accurate and detailed records and incident reports and should be held to account where these are not of an acceptable standard. Commissioners (health and social care) should ensure that records are accurate and up to date as part of their regular reviews of care.

The CQC and health and care (host and placing) commissioners should ensure that care providers supporting people who are at risk of sudden death are able to evidence effective risk assessments and have put appropriate emergency response measures in place, and regularly practice enacting them, to mitigate these.

The Resuscitation Council should review the level of life support training recommended for staff in care settings where they are caring for people with a known risk of sudden death. This should include regular practice of enacting emergency protocols and administering cardiopulmonary resuscitation (CPR).

NHSE/I should take forward the guidelines in the new LeDeR Policy 2021 to ensure that reviewers consider the most appropriate process before commencing a review and that the commensurate level of resource is made available to undertake it.

The medical examiner system provides independent scrutiny of all non-coronial deaths, wherever they occur and are best placed to guide the Police on what constitutes a suspicious death in a care facility. Medical Examiner Offices should lead work to establish arrangements with the Police and Safeguarding Boards to ensure effective scrutiny of concerns raised about deaths for people with a learning disability in care settings.

Where multiple reviews are underway in response to a death, the local integrated care system and wider partners should ensure that the coordination and inter-relationship between them is effectively managed to ensure that deaths are looked at comprehensively in an integrated way, to avoid duplication and to minimise the trauma for families.

CCGs and local authorities must ensure that Safeguarding Adult Reviews, Serious Incidents Requiring Investigation and other review processes investigating the quality of care or death of individuals, involve families, document their concerns and clearly respond to the issues raised by them.