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Learning from lives and deaths - People with a learning disability and autistic people (LeDeR): Action from learning report 2021/22

Supporting resources

Content

Introduction

This document accompanies the LeDeR Action from Learning report 2021/22 which provides NHS England’s response to the 2021 LeDeR Annual Report and updates on progress since last year’s Action from Learning Report. This can be found on the NHS LeDeR website.

LeDeR is a service improvement programme which aims to improve care, reduce health inequalities and prevent premature mortality of people with a learning disability and autistic people by reviewing information about the health and social care support people received. An essential part of this work is to share the learning from the reviews which have happened throughout the year and the positive practice, resources and materials needed to achieve this.

This document contains links to a range of resources which will support local systems to understand the wider context of their action from learning, to make improvement and to share good practice. It includes guidance from our national partners, including those which describe the required standards for providing and monitoring care, and examples and links to resources created by services and their partners through action from learning.

This is not an exhaustive list of guidance and we have not included the many examples of positive practice we have received from across England in this document.

NHS England cannot be held responsible for the content of external links.

National guidance, policy and quality standards

  • The NHS Long Term Plan
    www.longtermplan.nhs.uk
    The NHS Long Term Plan (2019) explains the ambitious improvements in care we want to see for patients over the next ten years and sets out how we can overcome the challenges the NHS faces. Click for the easy read version : NHS Long Term Plan (pdf).
  • Learning from lives and deaths (LeDeR) Policy
    www.england.nhs.uk/publication/learning-from-lives-and-deaths-people-with-a-learning-disability-and-autistic-people-leder-policy-2021
    The new LeDeR policy set out for the first time for the NHS the core aims and values of the LeDeR programme and the expectations placed on different parts of the health and social care system in delivering the programme from June 2021.
  • The NHS Operational Planning and Contracting Guidance 2022/23
    www.england.nhs.uk/operational-planning-and-contracting
    This guidance covers system planning, full operational plan and workforce transformation requirements, the financial settlement and the process and timescales for submitting plans, including LeDeR, that are needed to meet NHS priorities for 2022/3.
  • NHS Patient Safety Strategy
    www.england.nhs.uk/patient-safety/the-nhs-patient-safety-strategy
    This describes how the NHS will continuously improve patient safety, building on the foundations of a safer culture and safer systems. Includes easy read version.
  • Ask Listen Do – NHS England
    www.england.nhs.uk/learning-disabilities/about/ask-listen-do
    This supports organisations to learn from, and improve the experiences of people with a learning disability and/or people who are autistic or both, and their families and carers when giving feedback, raising a concern or making a complaint. It also makes it easier for people, families and paid carers to give feedback, raise concerns and complain.
  • We are the NHS: People Plan
    www.england.nhs.uk/ournhspeople
    ‘More people, working differently, in a compassionate and inclusive culture.’
    This ambition and the NHS People Plan sets out actions to support transformation across the whole NHS. It focuses on how we must all continue to look after each other and foster a culture of inclusion and belonging, as well as action to grow our workforce, train our people, and work together differently to deliver patient care.
  • Reasonable Adjustments – Guidance
    www.gov.uk/government/collections/reasonable-adjustments-for-people-with-a-learning-disability
    Information and guidance on making reasonable adjustments. Organised by health subject area, from Annual Health Checks to substance misuse, this is aimed at health and social care professionals and family members / carers who support and plan care for people with a learning disability. Each topic also has an easy read version.
  • NICE Guidelines: Learning Disability
    www.nice.org.uk/guidance/population-groups/people-with-learning-disabilities
    Quality standards for the care and support for children, young people and adults with a learning disability.
  • E-Learning for Healthcare professionals – the All Our Health programme
    www.e-lfh.org.uk/programmes/all-our-health
    Health Education England’s e-learning for healthcare platform aims to give health and social care professionals more confidence and skills to make prevention, staying well and promoting wellbeing a part of their everyday practice.
  • NHS Digital and NHS England
    https://digital.nhs.uk/services/reasonable-adjustment-flag
    The Reasonable Adjustment Flag is a national record which indicates that reasonable adjustments are required for an individual and optionally includes details of their significant impairments and key adjustments that should be considered. The reasonable adjustment flag has been successfully piloted and is in the final stages of development.

Reports

  • LeDeR Action from Learning reports - NHS England
    https://leder.nhs.uk/resources/action-from-learning-reports
    We use the insights we gather from the LeDeR reviews to improve the health of people with a learning disability. It also helps us to reduce health inequalities.
    Action from learning reports provide examples of changes that we have made to services so far. They show the work we are doing across the country to respond to common themes raised through LeDeR reviews.
  • University of Bristol – LeDeR Programme Annual Reports (until 2021)
    www.bristol.ac.uk/sps/leder/uob-2015-21/annual-reports
    The LeDeR Annual Report was produced for NHS England and by the University of Bristol until 31 May 2021. Each year it published an annual report about its findings over the past calendar year. All previous reports can be found on its website.

Data

Respiratory health

Cancer

Sepsis and deterioration

Constipation

  • Books Beyond words – The Trouble with Poo
    https://booksbeyondwords.co.uk/bookshop/trouble-with-poo
    The Trouble with Poo is a story book to make conversations about constipation easier. It describes how a healthy diet, drinking fluid and taking exercise are important and when to seek help. Available as paperback and e-book.
  • NHS England – constipation resources
    www.england.nhs.uk/publication/constipation-learning-disability-resources
    Information for people with a learning disability, their families and carers and healthcare professionals about the signs of constipation and what to do about it.
  • NICE: Clinical guidelines – Faecal incontinence in adults: management
    www.nice.org.uk/guidance/cg49
    This guideline covers assessing and managing faecal incontinence (any involuntary loss of faeces) in people aged 18 and over. It aims to ensure that staff are aware that faecal incontinence is a sign or a symptom, not a diagnosis.
  • NICE: Quality standards – Faecal incontinence in adults
    www.nice.org.uk/guidance/qs54
    This quality standard covers managing faecal (bowel) incontinence in adults (aged 18 and over) in the community (at home and in care homes) and in all hospital departments. It includes assessment of bowel control problems, advice and support, and treatment options. It describes high-quality care in priority areas for improvement.

Epilepsy

  • NHS England: Epilepsy toolkit
    www.england.nhs.uk/rightcare/products/pathways/epilepsy-toolkit
    NHS RightCare toolkit for epilepsy was developed in partnership with Epilepsy Action, SUDEP Action and Young Epilepsy to help systems, commissioners and services understand the priorities for epilepsy care and what action is needed to address them.
  • NICE: Quality Standard - Epilepsy in children and young people
    www.nice.org.uk/guidance/qs27
    This quality standard covers diagnosing, treating and managing epilepsy and seizures in children and young people (under 18). It describes high-quality care in priority areas for improvement.
  • NICE: Quality Standard - Epilepsy in adults
    www.nice.org.uk/guidance/qs26
    This quality standard covers diagnosing, treating and managing epilepsy and seizures in adults (aged 18 and older). It describes high-quality care in priority areas for improvement.
  • NICE: Clinical Guideline: Epilepsies: diagnosis and management
    www.nice.org.uk/guidance/cg137
    The guideline covers diagnosing, treating and managing epilepsy and seizures in children, young people and adults in primary and secondary care. It offers best practice advice on managing epilepsy to improve health outcomes so that people with epilepsy can fully participate in daily life. It also includes an MHRA update on some antiepileptic medications (Updated May 2021).
  • SUDEP (Sudden Unexpected Death in Epilepsy) Action
    https://sudep.org/article/new-sudep-action-project-My-Life-With-Epilepsy
    My Life with Epilepsy is a project led by SUDEP Action, working with Speakup, Cornwall Partnership NHS Foundation Trust, University of Plymouth’s Peninsula School of Medicine, and University of Sheffield’s School of Education. It will be improving and developing information and resources to help people with a learning disability and autistic people to better understand and reduce their epilepsy risks.
  • WHO: Epilepsy: a public health imperative
    www.who.int/publications/i/item/epilepsy-a-public-health-imperative
    This 2019 report was the first global report on epilepsy summarising the available evidence on the burden of epilepsy and the public health response required at global, regional and national levels.

Diabetes

Oral care

  • NICE - Guidelines: Oral health for adults in care homes.
    www.nice.org.uk/guidance/ng48
    This guideline covers oral health, including dental health and daily mouth care, for adults in care homes. The aim is to maintain and improve their oral health and ensure timely access to dental treatment.
  • PHE: Oral care and people with learning disabilities
    www.gov.uk/government/publications/oral-care-and-people-with-learning-disabilities
    Guidance to help health professionals, paid social care staff and family members to support someone with a learning disability to get good oral care.
  • Oral Health Foundation – Dental care for people with special needs
    www.dentalhealth.org/dental-care-for-people-with-special-needs
    Information from the Oral Health Foundation includes guidance on helping someone with a learning disability to access dental care, oral care for people with a learning disability and information about common procedures. It also has a free and confidential helpline for advice: 01788 539780.

Do Not Attempt Cardio Pulmonary Resuscitation (DNACPR)

Mental Capacity

  • NICE: Guideline – Decision making and mental capacity
    www.nice.org.uk/guidance/ng108
    This guideline covers decision-making in people aged 16 years and over who may lack capacity now or in the future. It aims to help health and social care practitioners support people to make their own decisions where they have the capacity to do so. It also helps practitioners to keep people who lack capacity at the centre of the decision-making process.
  • NHS – The Mental Capacity Act (MCA)
    www.nhs.uk/conditions/social-care-and-support-guide/making-decisions-for-someone-else/mental-capacity-act
    NHS information about the Mental Capacity Act.
  • Mencap: Mental Capacity Act: Information and resource pack
    www.mencap.org.uk/advice-and-support/mental-capacity-act
    Mencap’s Mental Capacity Act resource pack for family carers of people with a learning disability explains in detail the purpose of the act, how and when it applies to someone’s care, what it means for decision making, where to get more information and what to do if you have complaints and concerns.

NHS Commissioning

Annual Health Checks (AHCs)

Hospital – admission and discharge

  • NHS – Support if you are going in to hospital
    www.nhs.uk/conditions/learning-disabilities/going-into-hospital
    Information and links to resources about going into hospital to help people with a learning disability as well as families and carers. The information explains the role of learning disability nurses, consent and capacity - and the site includes a video for NHS staff made by people with lived experience, explaining the importance of reasonable adjustments.
  • My hospital visit – Information to take home – an easy read.
    http://s3-eu-west-1.amazonaws.com/files.royalfree.nhs.uk/Safeguarding/(Final)_My_hospital_visit_-_information_to_take_home.pdf
    Enfield’s integrated learning disability service (a partnership between local authority and health services) created an easy read discharge booklet, ‘My hospital visit – information to take home’ so that people with a learning disability have the information they need about their treatment and can share that with others involved in their care. It is used at the Royal Free London Hospitals.
  • EasyHealth - Health information with simple words, clear pictures and films
    www.easyhealth.org.uk
    EasyHealth has a range of easy read materials, leaflets and films in its online library to support people with a learning disability and others who need hospital treatment, either as an inpatient or for outpatient care. The resources also include materials about a range of health conditions and treatments – from asthma to x-rays.

Reasonable adjustments

  • UK legislation: The Equality Act
    www.legislation.gov.uk/ukpga/2010/15/section/20
    The Equality Act (2010) legally protects people from discrimination in the workplace and in wider society. It replaced previous anti-discrimination laws with a single Act, making the law easier to understand and strengthening protection in some situations. Section 20 covers the duty to make reasonable adjustments for people with relevant ‘protected characteristics.’
  • NHS England – Reasonable adjustments guidance and resources for clinicians and non-clinicians
    www.england.nhs.uk/learning-disabilities/improving-health/reasonable-adjustments/
    An explanation of reasonable adjustments, along with resources to support someone having a COVID-19 vaccination or booster.

COVID-19

End of life care

Cardiac care

Integrated Care Systems

One of the lessons learned from the COVID-19 pandemic is that people need support which is joined up across local councils, the NHS and voluntary and community organisations. Integrated Care Systems aim to embed this collaboration.

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