Action from learning report 2022/23

This LeDeR action from learning report includes examples of the vital work underway across the NHS and by our partners, working with self-advocates and self-advocacy groups, parents/carers, the charity and voluntary sectors, and our colleagues in social care. None of these efforts would be possible without family members, health and social care staff and many others contributing to a LeDeR review by sharing their experience of the life and death of a loved one or someone in their care. We would like to express our sincere gratitude to you all.

We highly value our Independent Advisory Group whose members include people with a learning disability, autistic people, parents and carers, and representatives from the charity and voluntary sectors. They inform and enrich our work. We would like to recognise and thank everyone whose work, campaigning or self-advocacy continues to inform, challenge, change and reduce health inequalities among people with a learning disability and autistic people.

Finally, we are grateful to the LeDeR workforce and Integrated Care Boards across England for their continued efforts to address local LeDeR findings and to improve the health and lives of people with a learning disability and autistic people going forward.

Working with people with lived experience and in partnership with other organisations is central to our work. Our national NHS England team employs people with a learning disability, autistic people, family carers and bereaved family carers to ensure that every aspect of our work is directly informed by their insight.

An independent advisory group is integral to LeDeR. This steers our action from learning work and includes people with a learning disability, parents and other family members, and a representative from each of the organisations listed in Appendix 1.

We are also guided by our academic partnership, comprising representatives from King’s College London, University of Central Lancashire, Kingston University and St George’s, University of London. They produced the 2021 LeDeR Annual Report which included an accessible, film version of the 2021 report.

They have produced the LeDeR Annual Report 2022. Report, film and easyread version of the annual report will all be at https://www.kcl.ac.uk/research/leder

Jack’s story of his admission to University Hospitals of Morecambe Bay NHS Foundation Trust demonstrates how person-centred care and reasonable adjustments across health and social care can ensure patients with a learning disability and autistic patients receive fair access to good quality care. It also demonstrates good multi-disciplinary team (MDT) working with Jack at the heart of decision making, and how the role of the learning disability hospital liaison nurse was fundamental to coordinating his complex hospital admission.

Jack is in his 60s with a moderate learning disability. He is a private person with a fear of healthcare appointments who enjoys the pub and meals out. He moved in to supported living with another tenant after his parents both died.

When Jack experienced kidney problems and incontinence he was brought by his care manager for a urology consultation and became very distressed, refusing to enter the hospital. Although easy read information about his investigations was provided, Jack became upset and refused to engage in any discussions. It was agreed that Jack did not understand the rationale and urgency to see a hospital doctor.

Following a telephone consultation and assessment and an online meeting, the care management team agreed with Jack’s family that he wasn’t able to understand the proposed medical investigations and probable intervention and therefore lacked capacity to make a decision about his treatment.

A Best Interest Decision was made under the Mental Capacity Act (MCA) concerning Jack’s care - with his family, carers, the trust’s safeguarding, legal and community learning disability teams (CLDT), the hospital’s MDT team, the learning disability liaison nurse/matron and the consultant urologist (the decision maker).

CLDT nurses tried sharing more desensitisation techniques with Jack, however the need for urgent intervention concluded with Jack’s family, care managers and the clinical team agreeing to his sedation at home before transfer to hospital for assessment, care and treatment.

A consultant anaesthetist and theatre staff arrived at Jack’s home in the morning. An ambulance was parked out of sight until Jack was sedated and settled. Jack's carers supported him during the sedation process and once stable paramedics transferred him to the ambulance. On arrival in theatre, a catheter was inserted, and Jack was transferred to the day surgery unit for recovery. He settled on the ward and his niece stayed with him for the duration of his three-night stay.

The same process has been used to facilitate Jack’s continued treatment at the hospital, but with reasonable adjustments when needed. For example, when Jack needed renal blood tests but refused to attend, a nurse from his GP practice came to his home to take the blood tests instead. Where possible the urology consultant and specialist nurse also facilitate home visits, while district nurses manage any catheter changes.

Jack’s carers and the learning disability hospital liaison nurse who has known him for over 15 years say that Jack is a ‘changed man’ since the procedure. Clearly it has enhanced his physical, emotional and psychological wellbeing and improved his quality of life. He is quite proud of his catheter bag, showing it to anyone he can, and his carers think he will be soon be able to empty it himself.

Jack’s story is regularly shared by the hospital’s learning disability and autism team to cascade the lessons learned from the court, the MDT process, and making reasonable adjustments, with Jack at the heart of all decision making.

Large proportions of the UK population have developed at least partial immunity against COVID-19 ^[5] and vaccination is still essential for people with a learning disability who are highly vulnerable to the virus ^[6].

In Autumn 2022 an NHS campaign urged anyone who was eligible for a COVID-19 booster to come forward, to help increase their protection against serious illness.

In 2022/23 in our work to tackle COVID-19 and increase the uptake of the booster for people with a learning disability and autistic people, we:

• asked the JCVI (which advises UK health departments on immunisation) to update their green book guidance (used by all vaccinators in England) to make sure that the COVID-19 booster is available to everyone on the learning disability register aged 5 years and over
• promoted the reasonable adjustments available to support COVID-19 and flu vaccinations by releasing a short film about Rachel and her mum Carol
• worked with the COVID-19 vaccination programme to improve uptake guidance for people with a learning disability which includes examples of good practice, and references LeDeR outcomes for making every contact count. The guidance is available on the FutureNHS platform (For NHS staff)
• sent an easy read letter in Autumn 2022 to invite everyone aged over 5 years and on the learning disability register for a COVID-19 booster
• raised awareness at several stakeholder and engagement events on reasonable adjustments and what they may look like, provided links to information, case studies, accessible information, answered questions, and supported understanding of the JCVI guidance to promote informed and best interest decision making 
• worked with the communications team on a national campaign to get the message out through special schools and to parents about the booster being offered to both children over five years and their carers.

We also reminded health and social care staff who were sent reminders for their own booster of the importance of encouraging uptake in those they care for.

When compared to uptake among the general population, the uptake of vaccination among people with a learning disability was in line with the general population and proportionately higher in the 30-49 age group^[7].

NHS England regional teams

Our regional teams have continued working with the national NHS COVID-19 vaccination programme to ensure people with a learning disability and autistic people have appropriate and timely access to vaccinations, and that where necessary primary care staff make any reasonable adjustments (pdf) to help with this.

Vaccine booster clinic in South London

Students who attend the Share Community Centre in Battersea, South London received their combined COVID-19 autumn booster and their flu vaccination over the course of an afternoon in December 2022, when staff from the training centre worked with local GPs to provide a vaccination clinic. The centre, which provides learning and wellbeing resources to help adults with a learning disability and autism to live life to the full, provided a safe and familiar environment where its members could take as long as they needed to receive their vaccinations. In this short film about the vaccine booster clinic, Steve Russell, National Director for Vaccination and Screening at NHS England talked to the GPs and nurses who ran the clinic to find out what reasonable adjustments were offered.

Continuing COVID-19 safeguards

The self-advocacy group People First Merseyside, which is run by and for people with a learning disability, is one of many organisations that have kept some measures in place to prevent the spread of COVID-19, even after social distancing restrictions were lifted. To reduce the risk of infection, the organisation encourages people to:

• have their temperature taken on arrival at the centre
• stay away from the centre if they are feeling unwell, particularly with any cold or flu symptoms
• take up any relevant COVID-19 booster and flu vaccinations.

Most of the group’s 40 core members have had their COVID-19 booster and People First Merseyside continues to encourage others who they engage with externally to have any relevant vaccinations. The group also continues to work with the public health team in Sefton Council to ensure any messaging about COVID-19 is accessible for people with a learning disability or autism.

A thematic analysis of COVID deaths in the Midlands

Leicestershire Partnership NHS Trust, like trusts across England, has been driving improvements based on learnings from the pandemic.

LeDeR clinical leads at Leicestershire Partnership NHS Trust analysed 28 LeDeR reviews into the deaths of people with a learning disability between 2020 and March 2022 where COVID was recorded on the person’s death certificate as their cause of death.

Many examples showed good quality care at home and appropriately offered reasonable adjustments with multiple agencies and professionals working together.

The analysis also found four key areas for improvement in the treatment of people with a learning disability in both acute settings and in the community. These included: communication, applying the Mental Capacity Act and best interest decisions, record keeping, and diagnostic overshadowing. 

A series of specific actions were developed and shared to partner agencies and community services to realise changes and learning for the future. These included:

• using hospital passports
• engaging meaningfully with parents and carers
• centralising access to health and social care systems
• reviewing training to ensure that learning is embedded.

A new learning disability assessment has also been implemented at University Hospitals of Leicester NHS Trust (UHL) to highlight any reasonable adjustments a person with a learning disability may require. Primary Care Liaison Nurses can also use the data from the thematic review to offer personalised training at every GP practice.

Some people with a learning disability and some autistic people cannot easily communicate that they feel unwell and their health may deteriorate very quickly. The LeDeR Annual Report 2021^[12] found that, in social care settings, a lack of recognition of deterioration in physical health and, in particular, a lack of recognition of when and how to seek medical support could lead to ‘delayed escalation’ of care.

The earlier we can spot a health concern and start treatment the better.

We have developed several initiatives to help identify and manage deterioration in health and to prevent avoidable deaths – described below.

RESTORE2 mini

We worked with the charity Skills for Care, which supports the adult care sector, to make the RESTORE2™mini training more accessible for carers across England. This tool has been adapted for use in care homes to help carers detect the ‘soft signs’ of deterioration to facilitate earlier treatment. The training tool and training slides are now available on the Skills for Care website.

Decision support tool for physical health – training

We funded Cheshire and Wirral Partnership NHS Foundation Trust to deliver more face to face training on the ‘decision support tool for physical health’ or (‘DST-PH’) which will help health system staff proactively identify people with a learning disability who are at risk of premature mortality or preventable death. 

Training was delivered to organisations including Surrey and Borders Partnership NHS Foundation Trust, London ADASS network (all the learning disability services in the London area), the Learning Disability Senate, members of the Royal College of GPs and the national learning disability Nurse Consultant Forum. Training in DST-PH is also included in the Physician programme run by Edge Hill University in partnership with the Royal College of Physicians (RCP). The toolkit was presented at the Royal College of Psychiatrists International Congress in Liverpool in July 2023.

The Trust also developed a free online resource package of guides, videos, and PDFs to explain how to effectively complete and use the tool in clinical practice. The training in the tool will be offered to ICBs across the North West and further pilots are underway as part of the North West’s physical health workstream.

Identifying individuals at risk - a primary care pilot

Sussex Partnership NHS Foundation Trust in partnership with Sussex ICB has also successfully piloted the implementation of the Dynamic Support Tool- Physical Health ‘DST-PH’ at three GP practices. The Sussex partnership now hopes to extend the pilot to more practices in 2023, to explore the feasibility of delivering the tool with AHCs, and to develop a series of user-friendly resources.

There is evidence that the DST-PH has effectively reduced emergency admissions and is helping to keep people with a learning disability out of acute hospitals.

Preventing and identifying frailty in Hertfordshire

A new tool based on learning from LeDeR and NICE recommendations has been piloted throughout 2022/23 in the East of England to identify sooner the risks of frailty among people aged 18 and over with a learning disability. Frailty is defined by the NHS as ‘where someone is less able to cope and recover from accidents, physical illness or other stressful events.’ The NHS also states that frailty should be treated as a long-term condition throughout adult life and its prevention and early identification is essential to supporting people appropriately.

Some people with a learning disability are at more risk of frailty, for example, if they have diabetes, heart valve disease, or are on multiple medications. This is not always obvious and the earliest opportunity to spot the risks of frailty might be during unplanned episodes of care.

Frail+LD has been created by both Hertfordshire’s County Council (in consultation with Hertfordshire and West Essex ICS and Hertfordshire Partnership Foundation Trust colleagues) and is being piloted with support from the University of Hertfordshire / Eastern AHSN The tool uses indicators^[13] to highlight where staff can mitigate the risk of frailty or refer someone with a learning disability to the frailty pathway. It might look at medication, any missed health screenings, health changes, support network, or why someone is having falls.

The Frail+LD tool can be used across disciplines and by GPs, nurses, social workers, and occupational therapists to pinpoint areas of a person’s risk of frailty and proactively assess and manage their health and support needs. It is being used for everyone with a learning disability who is known to Herts County Council and in people’s homes, care homes or wherever someone is working with a person with a learning disability. The frailty indicators (see image) have also been added to the preparation tool checklist for carers to help them identify changes to health before someone has their annual health check.

The tool was independently evaluated in March 2023 and focus groups were conducted with people with a learning disability who have been assessed by the tool. Of those assessed 51% have been identified as at medium or high risk of frailty developing, and 11% have been referred to and accessed a frailty clinic. Practitioners were also asked to score the frailty risk prior to completing the tool based on their professional judgement – in 22% of cases the tool identified a risk of frailty where the practitioner had not. The tool is being rolled out across Hertfordshire and West Essex ICS.

The LeDeR annual report 2021^[16] found areas of concern in primary and community care, around a lack of preventative healthcare (screening programmes and vaccinations) and difficulties accessing appointments. In some cases, this was founded on a lack of reasonable adjustments (film), including not providing information in suitable formats, or discharging a person from a community or out-patient service following a single non-attendance.

Screening prevents disease and can save lives. The uptake in screening for breast cancer and cervical cancer among people with a learning disability and autistic people is lower compared to the general population and uptake in bowel cancer screening can be difficult for some people with a learning disability without additional support^[17].

Our work in cervical cancer screening

During Cervical Cancer Screening Week in January 2023 NHS England shared Jodie’s film - Accessing cervical screening with the right support for people with a learning disability (film). In the film Jodie, who works with the NHS England Learning Disability and Autism team and has a mild learning disability, shared her experience of accessing her first cervical screening at the age of 40 by talking to her GP practice and her learning disability nurse to make sure the right reasonable adjustments were made for her. The NHS Cervical Screening programme is available for all women and people with a cervix aged 25-64 and easy read information and a video about cervical screening for people with a learning disability is available at Jo’s Trust.

We have worked with national screening programmes and health inequalities leads to share good practice across both programmes to reduce health inequalities in cancer diagnoses and treatment. In addition:

• NHSE has introduced a phased reduction for the age of bowel cancer screening since April 2021 and will eventually include all people aged 50 to 59. Screening invitations were previously for over 60s.
• We supported a new film from Sutton Mencap encouraging people to have their bowel screening, explaining how to use the bowel screening kit and describing how to spot some of the symptoms of bowel cancer.
• We worked with the national bowel screening campaign ensuring all resources were accessible and included people with a learning disability. A step-by-step film on how to use the bowel cancer screening FIT kit was also shared widely.
• We promoted the new resources which were created by the Primary Care Network (PCN) Cancer Facilitator for the West Yorkshire and Harrogate Cancer Alliance across all screening leads, learning disability and autism leads and cancer networks across England to help increase screening uptake (film). The facilitator worked with Bradford Talking Media to create three accessible videos for people with a learning disability and their carers. The videos – on bowel, breast, and cervical screening – describe the process from screening invitation through to test results.

We are supporting research (pdf) from The University of Glasgow in to the experience of screening for breast, bowel, and cervical cancers among people with a learning disability and how access can be improved.

The NHS Cancer Programme’s work

The NHS cancer programme has worked closely with LeDeR to tackle health inequalities in screening, diagnoses, and treatment. Their work in 2022 included:

Reviewing experiences of cancer care

In 2021/22, the NHS Cancer Programme looked at evidence and data about the experience of cancer amongst different patient groups, including people with: mental health difficulties, dementia, learning disability and autistic people.

The national cancer patient experience survey

The National Cancer Patient Experience Survey (CPES) also gave insights into variations in experience of cancer care. As part of the CPES the team looked in detail at the results of the survey from different groups including from 191 people with a learning disability surveyed in 2021. These ‘deep dives’ revealed the following themes of areas for improvement in service:

• in reasonable adjustments - such as having a quiet room to wait in
• in telling people bad news – i.e. staff need to think about the words they use when they tell people they have cancer and talk to people with a learning disability about cancer..

The results of the most recent national report (2022) and of the latest published deep dives (2021) are available in easy read.

A mental health and cancer thinking group

In 2022, the NHS Cancer Programme invited a group of experts and people with lived experience to consider how to improve cancer care for people with a pre-existing mental health condition. The group co-produced an action plan and identified areas for improving experience of care mainly focused on people with a mental health condition. The group also created new resources and held a conference on improving mental health for people affected by cancer in 2022 to raise awareness of health inequalities in experience of cancer care.

The conference was attended by Cancer Alliances*, people with lived experience, carers and charities and shared patient stories and workshops. One workshop focused on ‘Improving experience of cancer care for people with a learning disability and autistic people and their carers’ while other themes focused on the importance of cancer care teams working closely with learning disability hospital liaison nurses and ensuring reasonable adjustments for individuals where needed.

*Cancer Alliances bring together clinical and managerial leaders from different hospital trusts and other health and social care organisations, to transform the diagnosis, treatment and care for cancer patients in their local area. These partnerships enable care to be more effectively planned across cancer pathways. 

The Cancer Experience of Care Improvement Collaborative (CIC) for 2023/24, (launching in September 2023) is focusing on improving experiences of cancer care for people with pre-existing conditions including learning disability and autism, in part because of the findings from LeDeR reviews.

Be Cancer Aware – a co-produced course in the North East

The North East and Cumbria Learning Disability Network and the Northern Cancer Alliance have continued their work with self-advocacy groups including Skills for People and Sunderland People First to co-produce their ‘Be Cancer Aware’ sessions, which they are now delivering to the learning disability community across the region. Their presentation in October 2022 ( available here on YouTube) explains their work.

Transforming Cancer Services for London

The pan-London Transforming Cancer Services team* (TCS) and Primary and Community Care Education Group led a workshop in May 2022 on improving cancer outcomes for people with a learning disability in. The attendees included Cancer Alliances, ICSs, GPs, oncologists, nurses, third sector organisations and Allied Health Professionals. They heard details from LeDeR reports, listened to the story of Annie, a woman with a learning disability and met experts by experience to better understand experiences of a cancer pathway.

Several recommendations from that session are now being implemented including: reviewing the two-week cancer pathway across the community and in primary care to specifically address health inequalities.

The team has considered some of the barriers people with a learning disability may experience while on a ‘two week wait’ referral. Patients may need:

• easy read materials explaining the appointment before they attend
• additional support to ensure they attend an appointment
• a key worker or other support at the appointment
• reasonable adjustments.

TCS has also standardised the cancer referral form used across London ensuring that it is fit for purpose where patients may face additional health inequalities. This standardised form will also help to address consistency in referrals, as up to 25% of GPs in London are locums. The form which launched in January 2023 also includes links to the clinical guidance and patient resources. The team are making easy read formats and have so far produced an easy read version of the Urgent Suspected Cancer Patient Information leaflet (pdf).

The Transforming Cancer Services team are also ensuring that GPs can easily find a learning disability link nurse for example when they refer a patient to the cancer pathway who has a learning disability. They are also supporting the pan-London cancer screening board to increase the uptake of cancer screening among people with a learning disability.

*The Transforming Cancer Services Team (TCST) is a pan-London team of 15 staff and is part of Transformation Partners in Health and Care. TCST is a collaboration between London ICSs and NHSE London. It is responsible for implementing the national cancer strategy, diagnosing cancer earlier and faster.

Tackling inequalities - a South West screening liaison service

Following the success of the Cornwall Screening Liaison Service, NHS England South West Vaccination and Screening Team secured funding for a practitioner post across the other six ICBs in the South West. This practitioner role will deliver a local service to increase the uptake and engagement in screening among adults with a learning disability.

The Cornwall screening liaison service ensures appropriate access to screening and reasonable adjustments are in place when required. Its three screening liaison nurses are part of Cornwall Partnership NHS Foundation Trust’s adult community services.

They support people with a learning disability across the five screening services - breast cancer, bowel cancer, diabetic eye screening, cervical cancer and abdominal aortic aneurysm (AAA) screening - and help the person to make an informed choice on attending any appointment. They also provide support for their family/carer to help people access screening.

Their work includes but is not limited to:

• Supporting the person to attend an appointment
• Discussing fears or concerns with the person, their families and their carers
• Supporting access needs – for example the area’s mobile breast cancer screening van has no wheelchair access, so the team will arrange appointments at hospital when required
• Providing easy read materials and some bespoke materials. For example, the team created a bespoke easy read for a gentleman who needed a colonoscopy
• Contacting patients on a GP’s learning disability register who have not completed their bowel screening to offer support, advice and a home visit – including demonstrating the bowel screening, Fit 120 kit
• Ordering bowel screening kits for people who choose to participate
• Supporting desensitisation sessions

For cervical screening, as an example, the team:

• ask GP practices to check their learning disability register for women and people with a cervix who did not attend, cancelled or declined to attend an appointment and follow up to find out why
• offer training and advice to GPs, nurses and care/supported living homes
• can act as a chaperone.

The nurses also work with primary care, health promotion teams, charities, learning disability services, acute liaison nurses and adult social care and have links with the radiographers who provide specific clinics for people with a learning The team also ask GPs to use annual health checks to prompt people on applicable screening.

In 2022, the uptake for bowel screening for people with a learning disability was considerably higher in Cornwall and the Isles of Scilly ICB (at 60.29%) compared to the wider Southern Hub (49.95%). Breast screening uptake was almost the same as for women in the general population.

Tackling barriers to cervical screening in Hertfordshire

A fleet of new resources, a new cervical screening pathway and a Cervical Screening Decision Process Tool were developed in 2022 by Herts Valley CCG - to reduce barriers to cervical screening among women and people with a cervix who have a learning disability. The resources were funded as part of the project with NHS East of England Cancer Alliance and inform GP practice staff about the importance of cervical screening and supporting women and people with a cervix to access it.

The  cervical screening decision process tool and  pathway can be used by any practice nurse/screener and aims to ensure every possible step has been taken to check the person’s capacity to make an informed decision and understand the risks of not being screened, and then ensure every step possible is taken to overcome the barriers, make reasonable adjustments, and where applicable, make best interest decisions weighing up the risks and benefits.

The resources and the Check it Out! film about cancer screening made by the Purple All Stars group whose members have a learning disability are being shared with practices across Hertfordshire and the wider East of England Cancer Alliance.

Raising the risks of breast cancer in Worcestershire

In November 2022 the community learning disabilities team at Herefordshire and Worcestershire Health and Care NHS Trust ran an event to encourage women with a learning disability to access routine - and vital - breast cancer screening. The 26 women who attended the ‘ My Breasts and Me’ event at the Worcestershire Breast Unit had a meet and greet with the radiographer, they explored the mammogram machine, and nurses from the unit demonstrated to the women how to check their breasts and what changes to look out for – and how to tell a GP or someone they trust if they noticed changes. Easy read materials supported the event and everyone who attended was made to feel very welcome. The team now intend to make this an annual event.

‘Know Your Body’ resources

Ansar Projects, part of the Thera Group, which supports people with a learning disability, launched a series of new easy-read resources in October 2022 to support people with a learning disability to know their own body. Produced in partnership with two cancer charities – Coppafeel! and Orchid – and influenced by questions from people with lived experience, the resources raise awareness around breast cancer and testicular cancer. They also include accessible health information, body diaries, self-checking cards and a ‘What happens next?’ series explaining what to expect at check-ups and tests. Although produced independently from the NHS, LeDeR statistics around avoidable deaths really highlighted to the team the importance of these resources being developed.

Making change happen in Birmingham and Solihull

Birmingham and Solihull ICS (BSOL) in partnership with commissioners, experts with a learning disability and autistic people, self-advocacy groups and other stakeholders, launched a three-year public facing strategy for LeDeR in 2022. This aims to improve the experiences in health services for people with a learning disability and autistic people.

The strategy embeds learning from LeDeR into all aspects of the local system and is based on over 500 recommendations from more than 200 local LeDeR reviews. It comprises 20 priority areas (pdf) for change which all the partners identified together.

Improvements to coordinated care have already been made against these priorities ^[19] by strategy partners including:

• Midland Mencap after an audit at University Hospitals Birmingham discovered that only 15 of the 300 people with a learning disability or autistic people who were hospitalised in Birmingham in 2022 had a hospital passport, prioritised producing these. The passports share a person’s likes and dislikes with staff– helping to break down barriers in communication. They have helped produce more than 100 passports so far.
• Health and social care commissioners at Birmingham City Council helped to share the learning from the success of the hospital passports scheme and encouraged over 1000 providers (e.g., care homes) to ensure their residents have them.

Commissioners –also changed their approach to monitoring providers, embedding LeDeR learning in their monitoring and quality assurance – for example by providing training and examples to providers of what good quality care should look like. They can also penalise a provider through contractual action if it doesn’t meet these standards.

The BSOL LeDeR team share knowledge across social work teams, so that annual health and social care reviews fully consider all aspects of a person's wellbeing, and they work strategically with social care colleagues and with providers to embed LeDeR. The team can raise any issues to the commissioners which informs the quality monitoring of providers with urgent action where needed, giving a provider a timeframe to respond with any necessary actions required.

Reinforcing the strategy is conducted through:

• Formal governance groups and regular meetings including a monthly LeDeR review oversight panel with representatives from the council, Mencap, self-advocacy services, primary care, acute care, specialist learning disability teams and others who openly discuss the changes they can feed into their organisations.
• The Action Learning Group in BSOL which is also reinforcing the 20 priorities through training in GP practices, at day centres and at specific events. The strategy group are asking everyone involved if it is working and, as a result, and strategy partners are feeling more empowered to advocate for their members and call for changes, based on the 20 priorities and a clear understanding of the standards that everyone should expect.

Capturing change:

BSOL LeDeR has funded a ‘capturing change’ project, contracting Solihull Action through Advocacy, Midland Mencap and Experts by Experience Solihull CIC to work together over the next 3 years to listen to feedback on how the strategy is working from people with lived experience, families, carers and individuals.

The ‘Equal Treatment’ Project

An anti-racism initiative funded by NHS England and led by Learning Disability England (LDE), saw seminars, workshops and training delivered throughout 2022. The Equal Treatment project challenges racism and health inequalities through strengthening self-advocacy and peer support. LDE worked in partnership with the charities Changing Our Lives, Contact, and IncludeMeToo.

The project aims to: 

• strengthen self-advocacy and parent/carer organisations’ work with people with a learning disability from minority ethnic groups and their families
• increase the confidence of local organisations led by people from minorityethnic groups in working with people with a learning disability and their families when tackling health inequalities
• link these efforts with wider initiatives to reduce premature mortality and health inequalities.

So far, three distinct strands of work have been delivered in these areas including:

Strand 1

Changing Our Lives, which aims to reframe how society views mental health and disability, delivered training to 10 organisations which included three sessions in person with 38 self-advocates and online training workshops for 20 senior staff from the 10 organisations. Several resources including short films, images and resource explainers were developed as part of this work.

Strand 2

Contact, for families with disabled children, co-developed and delivered a three workshop training programme for 13 parent/carer forums based on the participating organisations’ needs. The training covered understanding representation and inclusion, intersectional disadvantage, identification of information gaps and action planning. 

Strand 3

Seminars run by IncludeMeToo, a charity for children and young people with a disability and their families, aimed to raise awareness among wider community organisations of the racism and inequalities that could be faced by people with a learning disability from minority ethnic groups. Their seminars shared knowledge, challenged assumptions, and planned actions to tackle inequalities.

Finally, LDE hosted a sharing session in September 2022 which was attended by more than 50 delegates. All three work strands shared their key learning from their projects. The recording of the session is available here.

Feedback from this session demonstrated an appetite to continue the discussions, training and ultimate work in this area.

Leadership training for people with a learning disability and autistic people

NHS England has funded a project and survey from Learning Disability England which will help us and our partners to assess what leadership training opportunities there are for people with a learning disability and autistic people, who are from a minority ethnic group. We also want to identify and understand how the experiences of ethnic minority people, intersectionality, anti-racism, and inclusive practice are included in these programmes.

When LDE worked with people and organisations as part of the  Equal Treatment and  Working Together to get the job done (film) projects they heard from some people that leadership training does not always include people from minority ethnic groups with a learning disability or autistic people. They also learnt that training about different people’s experiences and anti-racism practice is not always accessible.

The LDE survey which was completed in spring 2023 asked what leadership or similar training there is aimed at or led by people with a learning disability or autistic people. The results from the survey and project will help us to understand current training opportunities and will see the production of an accessible report summarising improvement ideas.

Improving access to health in minority ethnic groups

In 2022 NHS Bristol, North Somerset and South Gloucestershire (BNSSG) ICB commissioned Autism Independence to explore the lived experiences of accessing health services among black and other minority ethnic groups where there is a young person aged over 16 in the family who is autistic or has a learning disability.

The charity worked with 42 families before presenting their findings in January 2023. They were joined by the families at the launch and enjoyed a celebratory meal afterwards with the Somali community. The report was also later presented at the South West’s regional Health Inequalities Improvement Group.

The report found that there was poor health engagement with AHCs, screening programmes and health appointments. The ICS is now looking to establish two ‘care navigator’ or bridging worker roles which will work with families where English is not their first language. The postholders will provide support and signpost parents and young people with a learning disability and autistic young people from minority ethnic groups to better access health services. This two-year pilot scheme will see care navigators recruited from minority ethnic groups and, if successful, it is proposed that the posts will become permanent.

BNSSG is also funding training which will be developed with community leaders to help improve access to health services among minority ethnic groups where there is an autistic person or a person with a learning disability in the family.

LeDeR reviews have highlighted some issues for people with a learning disability and their families around informed choices for end of life care and decisions around any potential Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) recommendations. The 2021 LeDeR Report ^[24] indicates that there were still a significant percentage of cases where good practice in DNACPR decision making was not demonstrated. NHS England has co-produced a number of resources and a national framework focused on ensuring equality in access to end of life care and palliative care to tackle these inequalities for people with a learning disability ^[25] . 

The pandemic and the Care Quality Commission (CQC) report Protect, respect, connect – decisions about living and dying well during COVID-19, reinforced that people with a learning disability must be centre stage in making their own end of life plans. NHS England and partner organisations developed Universal principles for advance care planning (pdf) in March 2022 to support this, by making recommendations including the use of an ‘advance care plan’. These plans should be personalised - developed with the person and/or their family and carers - and should be sharable and clearly document what matters to the person, their preferences and decisions about future care and treatment.

NHS England also worked with NHS Digital (now part of NHS England) to develop a code on the clinical record that specifically identifies that a conversation has taken place every year with a person with a learning disability and/or their family and carers about DNACPR. This practise started in April 2022 and means that GPs are now expected to add a SNOMED CT* code to a person’s clinical record during their annual health check to confirm that a conversation has taken place about DNACPR. In future we will be able to have better confidence that a DNACPR has been put in place appropriately. *A SNOMED CT (Systematized Nomenclature of Medicine Clinical Terms) code is a shared language used in electronic health records enabling information to be shared more easily between them.

In March 2023 we sent a letter to clinical leads and chief nurses in ICBs, medical directors and executive directors of nursing in NHS Foundation Trusts, and all GPs and primary care nurses to remind them and their systems of the importance of the appropriate use of DNACPR decisions for people with a learning disability and autistic people. This also stressed the importance of implementing the  Universal principles for advanced care planning and ensuring that DNACPR decisions for people with a learning disability and autistic people are appropriate, are made on an individual basis and that conversations are reasonably adjusted.

Regional projects to improve future planning

Many self-advocacy groups working with people with a learning disability are also encouraging their members to have good quality conversations about their death, while they are well, so they are better informed and can feel confident that their wishes will be considered and that they will have a greater sense of control over their ability to live and die well.

NHS England has funded three self-advocacy groups - People First Merseyside, Inclusion North and SpeakUp - to create distinct projects in advance care planning which will strengthen our efforts in this area. The projects will be delivered by the end of 2023 and will create a collection of easy read materials, workshop plans, bespoke training, and films. These resources and any learning from developing them will be cascaded by NHS England and our partners.

Informing choices on DNACPR in the North West

People First Merseyside are using their funding from NHS England to create national resources to empower people with a learning disability and their families to make informed choices around DNACPR in any future end of life care. 

This initiative will build on the success of their Dignity and Voices in Dying project ‘DAVID’ which was named in honour of a service member who sadly died. David had no family and the group realised they did not know what his final wishes were so People First’s members decided to do some work around planning for their own end of life choices, and the DAVID project was created.

DAVID aims to bring members and their families together in ‘death cafés’ - informal settings where they discuss the subject of death and are empowered to plan ahead before they face any crisis point in their health. This enables members to be proactive in informing their choices around making a living will, power of attorney, organ donation and even the music they want at their funeral.

Members are also working with ‘Task and Finish’ groups to:

• create a resource pack for will writing with information for both people with a learning disability and families/carers
• collate materials for an ‘organ donation resource pack’ they are producing
• try out activities for potential inclusion in the above packs and seek feedback at the cafés.

The DNACPR work will see the team and People First members behind the DAVID initiative create a new film, produce a resource booklet, and deliver awareness raising sessions across the North West on DNACPR issues. The DNACPR work will be delivered later in 2023 and the resources made widely available.

End of life conversations in death cafés

Inclusion North has used the NHS England funding to support improvements in end of life conversations among people with a learning disability, autistic people and their families and by:

1. raising awareness of good practice with health professionals across the North East, Yorkshire and Humber
2. developing resources to support people with a learning disability, autistic people and their families to get more comfortable talking about death, dying and making plans for the future.

They are working with their Stop People Dying Too Young Group and local palliative care professionals to ensure that experts lead this work.

To support people with a learning disability, autistic people and their families to get more comfortable talking about death, dying and making plans for the future they are creating resources which will be cascaded to support others to run facilitated conversations at ‘ death cafés’.

Although the name ‘death cafés’ may seem unpalatable, the group feel that it reflects the need for the language around death and dying to be straightforward - by using the words ‘death’ and ‘dying’ and not euphemisms which can be confusing such as saying someone is ‘lost’ or has ‘passed away.’ The sessions will include supportive guidance and tackle difficult issues in fun and gentle ways.

People with a learning disability, autistic people and family carers are also deciding the content in these café sessions – choosing the topics, as well as making a film which will discuss choices and expression of their wishes earlier in their lives.

The project will create new resources by Autumn 2023 for health professionals which will be available on their site, and will signpost to the end of life pathway and existing end of life guidance (pdf) for people who have a learning disability. The ‘Stop’ group are also making a video/short film for health professionals, emphasising the individual at the heart of these discussions, as people felt that their rights were being ignored. The group want to ensure that the film reminds professionals:

• Not to assume that a person does not have the capacity to make decisions
• To talk to them
• To talk to their family
• See them as a person
• To use the Deciding Right materials – an initiative for making care decisions in advance in a shared partnership between the professional and the child, young person or adult, carer or parent
• To ensure their NHS Trust is aware of the Deciding Right materials.

The ‘Stop’ group will lead on delivering the death café materials, while campaigns like Dying Matters Week will help to raise the awareness of both the new resources and the voices of people with a learning disability and autism on end of life discussions. The resources for NHS staff will also be cascaded through internal training across the North and via NHS England networks.

Training in end of life decisions

Speakup have used the funding they received from NHS England to co-produce training and supporting materials in South Yorkshire for use with people with a learning disability, autistic people and their families. The materials will facilitate two sessions in each of the following areas: DNACPR, making difficult decisions, and advance decision making. The training started in October 2022, will be completed in late 2023 and is using the ECHO training platform which provides professional training for the care industry.

All the materials produced, including an easy read and a film about bereavement, will be made available through the Speakup website and shared via the ECHO super-hub, so anyone with access to this in England can also deliver the training. The work is being supported by South Yorkshire ICB.

Under the Equality Act 2010 organisations have a legal duty to ensure that their services are as accessible to people with a disability as they are to anyone else – by making ‘reasonable adjustments’ where these are needed.

Reasonable adjustments (film) for someone with a learning disability or an autistic person could include longer appointments, providing easy read information or having the support of a carer. They will vary from person to person.

The introduction of the reasonable adjustment digital flag (RADF)

For optimum care to be delivered, all reasonable adjustments need to be identified, recorded, and shared across the NHS and social care. A new ‘ reasonable adjustment digital flag’ in a patient’s records will do just that. The flag will ensure staff know if a patient has a learning disability or is autistic and indicates what reasonable adjustments are needed.

The digital flag has been created on the NHS Spine. Healthcare professionals and administrative staff with the appropriate security permissions can identify, record, view, add or remove information from the flag, using the  National Care Records Service (NCRS). The digital flag is currently being tested in live clinical systems and will be rolled out by 2024. It will be accompanied by an Information Standard, mandating the use of the digital flag, across all health and publicly-funded social care services, across all ages, by April 2024. The reasonable adjustment digital flag will be supported by a communications campaign, staff training and an implementation plan, recognising the significant cultural change this represents. 

We have published an Information Standards Notice for the RADF under section 250 of the Health and Social Care Act 2012. This provides an overview of scope and implementation timescales, and the requirements specification.

Reasonable adjustment letters for GPs

Pathways Associates, a community interest company, worked in partnership with the learning disability team in Bury ICS to produce a letter in easy read format which GP practices can send to their patients who have a learning disability and autistic patients. The letter is based on learning from LeDeR and was created to help improve the quality of reasonable adjustments in Bury, Greater Manchester.

It provides a checklist of potential reasonable adjustments including longer appointments, large print resources, and easy read invitations. Patients or their family/carer can also add details of other reasonable adjustments which a GP practice could then put into place.

The North West Regional Forum, a self-advocacy group, also wanted to help improve the reasonable adjustments made for people with a learning disability and autistic people in the region and so teamed up with Bury People First self-advocacy group, to produce a letter that people with a learning disability can complete and give to their GP practice. Both groups felt they wanted to support their community to be more proactive in informing GPs of their needs.

Both resources have been distributed by the Learning Disability Partnership Board in Bury whose members include people with a learning disability, carers, local authority, NHS and service providers. Early adopters of the ‘ reasonable adjustments digital flag’ project have also shared the resources with other early adopters. They have all found the letters helpful and easy to roll out in their areas.

Bury Local Authority added a link to the easy read letter for GP practices in their Care Act assessment form. They have also applied learning from LeDeR and others to improve the form, increase take up of AHCs, and promote information sharing and access to health. Newly completed letters will be shared with GPs.

'STOMP’ stands for stopping over-medication of people with a learning disability and autistic people with psychotropic medicines. These are medications which affect how the brain works. ‘STAMP’ supports the treatment and appropriate medication for children and young people.

The STOMP and STAMP programme helps children, young people and adults, with their family, doctor, pharmacist and other organisations involved in their care to consider removing medication, if they no longer feel it is beneficial. It also supports alternatives to medication where appropriate such as, NHS talking therapies, social prescribing and positive behavioural support.

In 2022/23 the STOMP and STAMP programme’s work has included:

Prescribing:

The latest data ^[27] shows that psychotropic prescribing rates have fallen for people with a learning disability and autistic people, for medications including antipsychotics (often prescribed for behaviour thought to be challenging as well as for mental ill health), benzodiazepines (a type of sedative), and anti-epileptics (where prescribed other than to treat epilepsy). This is welcomed. However, the prescribing rates for anti-depressants have increased year on year for the last five years. Data show that people with a learning disability are still 16 times more likely to be prescribed anti-psychotic medication, and autistic people are seven times more likely to be prescribed anti-psychotics than the general population.

Training:

• We launched six new training modules with the educational platform MindEd - for self-advocates, health and social care staff and families/carers. The 30-minute modules explain the principles of STOMP, and how medicines are prescribed, reviewed, monitored and removed. The modules are available on the Health Education England website and by summer 2023 the six sessions had more than 7000 launches – a significant uplift since spring, reflecting the renewed prioritisation for STOMP and STAMP. The four top job roles accessing the online training were student nurses, nurses, doctors and pharmacists.
• We launched four new training modules in summer 2023 for specialist teams – i.e. psychiatrists, psychologists, pharmacists, specialist nurses, mental health trusts, community teams and staff in social care. These are being promoted extensively across health and social care networks.

Community of practice pilot:

• The Pharmacy Integration Programme funded a pilot led by the NHS England STOMP and STAMP team to look at the level of confidence among Primary Care Network (PCN) pharmacists (who sit within GP practices) to complete structured medication reviews (SMRs) for people with a learning disability and autistic people. Most regions in NHS England took part.
• The pilot included educational webinars and support from experts, and surveys to capture the progress of the 145 pharmacists who carried out SMRs for people with a learning disability and autistic people. More than 100 people whose medication was reviewed are now on a dose reduction plan and 41 people have had their psychotropic medicine stopped.

Raising awareness of STOMP and STAMP:

• In January 2023 the STOMP and STAMP programme hosted an event for people with a learning disability and autistic people. This was led by Carl Shaw, a learning disability and autism advisor for NHS England. The session focused on helping people to communicate how they feel about their medication in an accessible format, for example, where they are non-verbal or might use Makaton, drama or art. The session also advised people on how to get involved in the decision making around their medication, as well as growing confidence to ask about medication and alternatives to medication.
• Delivering several STOMP webinars for pharmacists and pharmacy leaders in the newly formed ICBs, focusing on:
  • how to improve communications with people with a learning disability
  • workshops sharing the alternatives to medication
  • sharing the learning and successes of the PCN pilot (above).
  • ran ‘deep dive’ exercises (discussion groups) - for a range of health and care professionals working in specialist teams (learning disability in-patient and community based teams) social care professionals, people with a learning disability and autistic people and family carers to gain insights into the STOMP and STAMP programme in practice. This has highlighted the need for clearer standards of practice, professional accountability and improved inclusion of people and their carers in medication related decisions.

London’s STOMP in action

When safe and wellbeing reviews (SWR) of all people with a learning disability and autistic people who were being cared for in a mental health inpatient setting were completed in January 2022 the oversight review panel in South West London ICB included an Advanced Specialist Pharmacist (in Learning Disability). It was established that at least nine of the 35 reviewed patients had been prescribed psychotropic medicines without a clear documented mental health diagnosis – a key consideration for STOMP. As a result, changes to local quality monitoring were made to increase scrutiny in the use of psychotropic medicines.

South West London trialled specialist pharmacist input in CTRs/CETRs early on and over the last two years the pharmacist has advised on over 30 CTRs/CETRs for people within the South West London ICS footprint, reviewing - and where appropriate - reducing high doses of psychotropic medication and ensuring all the required monitoring is completed. The SWR panel recommended increased involvement of a specialist pharmacist in CTRs/CETRs, especially where people are prescribed complex medication regimes.

The Advanced Specialist Pharmacist has provided training to upskill more than 60 pharmacists in PCNs in South West London since July 2021 to do structured medication reviews with people. This has increased capacity and built confidence among the PCN pharmacists. The specialist pharmacist is also a member of the local LeDeR governance group and has promptly embedded any learning from LeDeR into the training. She now plans to deliver the same training to the pharmacy workforce in all acute trusts across South West London by Summer 2023 to compliment the Oliver McGowan mandatory training on learning disability and autism - with an added emphasis on medicines optimisation.

The wider NHS England London region also recruited a new project manager in early 2023 who will lead on STOMP and STAMP in the region – in the first role of its kind in the country. The role includes oversight of STOMP and STAMP, ensuring each ICS has proper governance in place to challenge inappropriate prescribing and facilitating the sharing of good practice and learning in the region.

All About Health in the South East

A new accessible online resource to provide health information all in one place for people with a learning disability, their families, and people who support them is currently being co-produced. It will be hosted by Oxfordshire Family Support Network – a not for profit organisation.

The ‘All About Health’ initiative has received funding from Buckinghamshire, Oxfordshire and Berkshire West ICP and via the LeDeR programme. It is being developed through a partnership of advisory groups and people with lived experience of a learning disability, including members of the ‘My Life My Choice’ self-advocacy group. The project is chaired by the LeDeR Local Area Contact for Oxfordshire.

The resource will see existing information and resources on physical and mental health collated into one website. It will include guidance on: identifying and sharing good practice in all aspects of healthcare, films and real life stories already available, guidance on Health Action Plans, reasonable adjustments, and hospital passports, as well as information on specific conditions such as constipation, epilepsy and sepsis.

The website platform will be tested with support staff, families and people with a learning disability before it goes live in winter 2023 at which time it will be cascaded through the local authority, care provider organisations and shared via advocacy groups for people with a learning disability.

Oliver McGowan Mandatory Training on learning disability and autism

The Health and Care Act 2022 introduced a requirement for Care Quality Commission (CQC) registered service providers to ensure their employees receive learning disability and autism training appropriate to their role. Oliver McGowan Mandatory Training

is the Government’s preferred training to meet this requirement. Health Education England (now part of NHS England) and health and care organisations are working in partnership to deliver the training in England. The e-learning includes learning relating to issues identified in LeDeR and beyond.

Tom Cahill, National Director for Learning Disability for NHS England, discusses why he champions the Oliver McGowan Mandatory Training on learning disability and autism for health and care staff in this short film.

Adapting NHS talking therapies - a pilot in Cambridgeshire and Peterborough

A mental health condition was one of the top three long-term health conditions among people with a learning disability who died in 2021 ^[28]. A pilot launched as a result of the pandemic by the learning disability and autism team at Cambridgeshire and Peterborough ICS is working to reduce this - by improving access to talking therapies among people with a learning disability. 

The team are working with staff with a learning disability background from Everyturn (formerly Insight) – a non-profit provider working on behalf of the NHS and local authorities - to develop a service for people with a learning disability.

There are already good one-to-one psychological services in the ICS for people with a moderate or severe learning disability and reasonable adjustments are in place in the mainstream NHS Talking Therapies service for autistic people. However, this pilot intends to make the mainstream talking therapies service more accessible and has used a behavioural model to adapt the therapeutic service for people who have a mild learning disability. Residents of Cambridgeshire and Peterborough with a learning disability can be referred to the service and in future may be able to self-refer.

While a typical talking therapies group is run over six weeks, the adapted sessions in the pilot, which include therapy and strategies to manage mental health, are delivered to six people with a learning disability over eight weeks. They are run in two-hourly group sessions in person, with breaks built in.

The first cohort in the scheme have already shown signs of improvements in their mental health, and the six members of the group also opted to stay in touch - creating their own social/peer support group. A short video explaining the initiative has been produced by the clinical lead and the clinician delivering the pilot.

The overall pilot will support a further five groups of six people throughout 2023. It will then be evaluated by measuring any improvements before and after the programme – asking the person concerned, any referrers, and family/friends to provide feedback where appropriate. Improvements against any clinical measures will also be reviewed. Depending on the outcomes the ICS, along with the regional and potentially national NHS Talking Therapies teams, will consider any next steps.

Using LeDeR data to inform local population health strategies

A new tool has been launched by LeDeR which enables NHS England and ICBs to access the latest data from LeDeR reviews to help inform their plans to improve the health of their local population. The LeDeR data tool was launched in April 2023 and includes data on demography*, health, and lifestyle among people with a learning disability and autistic people whose deaths were notified to LeDeR and where a review has been completed. All local leads in the LeDeR programme manage access to this insightful tool which can be used by anyone who needs the data to improve services in their local area.

The tool provides access to pertinent information within LeDeR reviews that may have affected the person, such as AHCs, mental capacity assessments, experience of the criminal justice system or DNACPR as well as information about avoidable causes of death, concerns about care, the grading of quality of care, and any positive practices.

The tool will be used to inform national, regional and local service improvement plans by enabling users to have a much more detailed understanding of their populations, causes of death, and the inequalities people face. With this greater understanding, any improvement projects can be targeted to the areas where they are likely to have the biggest impact in improving health outcomes and preventing premature mortality for people with a learning disability and autistic people.

*statistics could include geography, deaths, income, or the incidence of disease.

Applying ‘All Our Health’

The national LeDeR team advised the ‘All Our Health’ initiative – which hosts a collection of bite-sized learning on key public health issues online – with the development of new learning disability resources. The ‘ Learning disability - applying All Our Health’ guide and a new e-learning module on learning disability were published in spring 2023. They are aimed at frontline health and care staff, ICSs, local authorities, and the wider public health workforce, to support people with a learning disability and their families. The resources, which were developed by the Office for Health Improvement and Disparities (OHID) in partnership with NHS England, also include recommendations of actions that managers and others in strategic roles can take to ensure good services and effective support where appropriate for anyone with a learning disability and their families.

All about the perimenopause and menopause

A  new easy read guide for women with a learning disability all about perimenopause and menopause has been published by  balance , the menopause support website and app, in association with  Dimensions, the not-for-profit organisation which supports people with a learning disability and autistic people. Some women can experience a number of symptoms from the hormonal changes during perimenopause – the time before a woman’s periods stop – and after menopause, that is when a woman has not had a period for 12 months. Menopause is often earlier in women with a learning disability and earlier still in women with Down’s Syndrome ^[29].

Dr Louise Newson, the GP and menopause specialist who founded balance and the Newson Health Menopause and Wellbeing Centre, also interviewed Sharon Saunders, a woman with a learning disability, for her  Dr Louise Newson podcast. The two women discussed some of the symptoms Sharon has experienced going through menopause including joint pains, headaches and hot flushes as well as the importance of asking for help. They also discuss how Sharon is starting hormone replacement therapy (HRT).

Type 2 Diabetes – a new film

People with a learning disability have higher rates of type 2 diabetes then the general population.

The North East and Cumbria Learning Disability Network and regional partners have developed a six week course with and for people with a learning disability and autistic people who have type 2 diabetes. The course includes reasonable adjustments and structured education. In this short film Natalie explains how the course has helped her to lose weight, eat healthier and understand more about her diabetes. NHS England shared the film at the start of Learning Disability Week in June 2023.

ADASS – The Association of Directors of Adult Social Services

AHC – annual health check. This is offered to anyone aged over 14 who has a learning disability or is autistic and are important for maintaining health and wellbeing.

AHSN – Academic Health Science Networks. There are 15 AHSNs, set up by the NHS in 2013 to help the service with innovations to improve healthcare.

Autism – Autism diagnostic criteria includes: differences in social communication and interaction, highly focused interests or behaviours that appear to others as repetitive or restricted and, challenges with sensory hyper-or-hypo-sensitivity.

CCGs – clinical commissioning groups. These were clinically led statutory NHS bodies responsible for planning and commissioning healthcare services locally. They have now been replaced by ICSs under the Health and Care Act 2022.

CTR - care and treatment review. A meeting about an adult who has a learning disability or is autistic and who is either at-risk of being admitted to, or is currently detained in, an in-patient (psychiatric) service.

CETR - care, education and treatment review. A review that focuses on children and young people who either have been admitted or may be about to be admitted to a specialist mental health / learning disability hospital.

DHSC – The Department of Health and Social Care. The ministerial department that supports ministers in leading the nation’s health and social care to help people live more independent, healthier lives for longer

DNACPR – do not attempt cardiopulmonary resuscitation. A DNACPR (or a ‘DNR’ or a ‘DNAR’) is an advance decision not to attempt cardiopulmonary resuscitation should a person experience cardiac or respiratory arrest.

Diagnostic overshadowing – where a person’s symptoms of physical ill health are mistakenly attributed to either a mental health/ behavioural problem or as being inherent – i.e. exist because of - the person’s learning disability.

EHCP – education and health care plan. An EHCP document sets out the education, healthcare and social care needs a child or young person needs beyond what a school can offer.

Health action plan - as part of a patient’s annual health check (AHC), GP practices are required to produce a health action plan. This identifies the patient’s health needs, what will happen about them (including what the patient needs to do), who will help and when this will be reviewed. The plan includes any key action points agreed during the AHC.

ICB – integrated care board. Every integrated care system (ICS) is led by an NHS integrated care board, an organisation with responsibility for NHS functions and budgets, and an integrated care partnership (ICP), a statutory committee bringing together all system partners to produce a health and care strategy. As ICBs are now legally established, CCGs have been abolished.

ICP – integrated care partnership. Statutory committees with representation from local government, the voluntary, community and enterprise sector (VCSE), NHS organisations and others who develop a health and care strategy for an area.

ICS – integrated care system. A group of health and care organisations which come together to improve the health of people in their area. There are 42 integrated care systems in England.

JCVI – joint committee on vaccination and immunisation. This committee advises UK health departments on immunisation and effective implementation of immunisation strategies to prevent infections and/or disease.

LACs – local area contacts. The LeDeR LAC role now sits within an ICB. LACs promote LeDeR learning at local level and across health and social care, they work with the LeDeR review team (who carry out LeDeR reviews into the death of a person with a learning disability or autism which was notified to the programme), and they also act at the contact person for the LeDeR regional coordinator. 

Learning disability – A learning disability affects the way a person understands information and how they communicate. This means they can have difficulty understanding new or complex information, learning new skills and coping independently.

LeDeR – Learning from lives and deaths – People with a learning disability and autistic people is a service improvement programme which aims to improve care, reduce health inequalities and prevent premature mortality of people with a learning disability and (from 2021) autistic people by reviewing information about the health and social care support people received. It is funded by NHS England.

LeDeR review – a LeDeR review looks at the health and social care that a person who died who had a learning disability or was autistic received that may have been relevant to their overall health outcomes. Reviews are not investigations or part of a complaints process.

NHS England – formerly NHS England and NHS Improvement – since April 2019 NHS England have worked as a single organisation to support the NHS and deliver improved care. On 1^st July 2022 we became NHS England. In this report we have used NHS England to include activity carried out under the auspices of NHS England and NHS Improvement.

NHS Pathways - NHS Pathways is a clinical tool used for assessing, triaging and directing the public to urgent and emergency care services.

NHS Spine – this supports the information technology (IT) systems for health and social care in England, linking more than 23,000 systems in 20,500 organisations.

OHID – The Office for Health Improvement and Disparities – a government unit within the Dept. of Health and Social Care which promotes public health improvements across England. The role of Public Health England (PHE) moved to OHID in October 2021.

Restore2 and Restore2™ mini – Recognise early soft signs, take observations, respond, escalate; tools used to identify deterioration in health.

SEND – special educational needs and disability. A child or young person has special educational needs and disabilities if they have a learning difficulty and/or a disability that means they need special health and education support.

Social prescribing – this is when health professionals refer patients to support in the community, to improve their health and wellbeing.

SUDEP – the sudden, unexpected death of someone with epilepsy, who was otherwise healthy.

Task and finish group – a group of people who are responsible for delivering a specific objective within an agreed timeframe; they report back to a wider group with any recommendations, action plan or evaluation.

UKHSA - the UK Health Security Agency. This is a government agency in England and has been responsible for public health protection and infectious disease capability since April 2021 when it replaced Public Health England. It is an executive agency of the Department of Health and Social Care.

• Association of Directors of Adult Social Services ( ADASS)
• London School of Hygiene and Tropical Medicine ( LSHTM)
• Autistica
• National Autistic Society
• Care England
• Mencap
• Department of Health and Social Care ( DHSC)
• Office for Health Improvement and Disparities ( OHID)
• Dimensions
• Pathways Associates
• Down’s Syndrome Association
• People First Merseyside
• Health and Wellbeing Alliance
• Race Equality Foundation
• Inclusion North
• Royal College of General Practitioners ( RCGP)
• Institute of Health Equity – University College London
• Royal College of Psychiatrists
• Learning Disability England
• Stop People Dying Too Young
• Learning Disability Professional Senate
• Voluntary Organisations Disability Group ( VODG)
• Local Government Association (LGA)