Assessing a community’s needs in Staffordshire and Stoke-on-Trent

To better understand the needs of people with a learning disability in the area, the learning disability and autism programme in Staffordshire and Stoke-on-Trent CCGs worked with experts by experience, parents, carers, the police, the Department for Work and Pensions, local authorities, housing providers and NHS colleagues to create a joint strategic needs assessment (JSNA).

The JSNA sets out a three-year roadmap for learning disability and autism services, connecting all stakeholders in the local health and social care system to improve the wellbeing, livelihood and lifespan of people with a learning disability and autistic people. It also makes recommendations for improvements and plans for the future.

The team studied local LeDeR reviews, and national, regional and local health and care data for people with a learning disability and autistic people (including children). Regular workshops with experts by experience, family members and carers also gave insights into where improvement is needed, and these were shared at meetings with representatives from all stakeholders to inform action plans.

The final JSNA document (to be published in autumn 2022) will give the current and projected numbers of people with a learning disability and autistic people in the area, insights into people’s experiences and plans for better, sustainable services across localities. Recommendations from this will be action oriented, informing strategic services, eg across social care and housing systems, through to individualised care in annual health checks, inpatient services and mental health services. In the meantime, the team is using the intelligence and insights gathered to date to inform their operational and implementation plans for 2022/23.

Getting active in Tameside

The charitable trust and life-enhancing social enterprise, Active Tameside, is working with the NHS mental health team and the local council in Greater Manchester to provide fun social care activities for children and adults with a learning disability and autistic people. Its work makes positive and empowering changes to lives through social care, community interaction, education and employment.

Everybody Can’ (YouTube) is a service for anyone over the age of three, including Tameside residents in supported living. It offers a host of person-centred activities to help people live healthier lives. The council refers people to the service and they receive a free leisure pass to access a range of services, eg community support seven days a week and off-peak gym and swim membership.

The team works with more than 320 adults and 27 children who have a learning disability or who are autistic to support their independence and life skills, including by supporting them on shopping trips and with making healthy food choices and weight management. The nutrition team at Active Tameside runs cooking sessions and ‘Fuel for Fun’ – healthier eating sessions with all schools in the borough, which includes four for children with special educational needs. Active Tameside helps its members to progress into volunteering and paid opportunities, eg in its community cafés and internships in local hospitals.

Its Active Tameside annual report (YouTube) video showcases more of its great work in 2021 and its Everybody Can brochure (pdf) details how Active Tameside works with the local population.

Two respiratory care projects commissioned by the national LeDeR team are at the point of delivery:

• The British Thoracic Society (BTS) – whose members include doctors, nurses and respiratory physiotherapists and which champions ‘Better lung health for all’, produced guidance on pneumonia and aspiration pneumonia. This went out for extensive public consultation in April 2022, and publication is expected in Autumn 2022. This guidance was co-produced with people with lived experience and will help healthcare professionals improve the care of people with a learning disability who have or are at risk of pneumonia.

• The NHS RightCare programme, which makes recommendations to improve healthcare, has developed a RightCare pathway scenario for aspiration pneumonia care. The guide identifies best practice in preventing and treating aspiration pneumonia and is for use by providers and commissioners in planning and delivering evidence-based care. This work will also be published in Autumn 2022.

In addition, the 2022/23 commissioning for quality and innovation scheme (CQUIN), contains a new indicator for community acquired pneumonia (CAP). This CQUIN scheme applies to all providers who are commissioned to deliver acute services via the ( Aligned Payment and Incentives Rules API (pdf)) of the National Tariff.

This important step should mean that more people will receive the right treatment for their pneumonia and more quickly. When a person arrives at hospital for example, one of the CAP CQUIN requirements is for a lung X-ray to be taken within 4 hours of admission to make sure they get the right treatment. The CQUIN combined with the BTS guidelines and our RightCare scenario work should make a real impact on how pneumonia is prevented, identified and responded to.

A new pathway for respiratory health in Berkshire

Learning from local LeDeR reviews inspired Berkshire Healthcare NHS Foundation Trust to develop a respiratory health pathway that supports those who are not respiratory specialists to escalate concerns and, where appropriate, request a referral. It is for use in social care settings, by families, clinicians, dentists and community learning disability teams.

The pathway supports the identification of people at risk of respiratory complications, decision-making on when to refer to a specialist, keeping people in optimal health, identification of signs of deterioration in a timely manner, and incorporating existing medical decisions. It is a personalised resource.

After a patient’s assessment, a meeting is held with all agencies involved in the person’s care – the person, their family and paid carers, health and social care staff and advocates – and a care activity review document or ‘CARD’ is completed. This structured process discusses the reason for an individual’s respiratory risk and how to manage this risk, and identifies any gaps in the care plan. It also considers social and environmental factors that may apply, as well as any other medical or physical conditions the person has. Actions are agreed and a review date is set.

The management of respiratory conditions can be complex, especially in people with a learning disability. Once the CARD is completed, multi-agency guidelines are produced based on all the individual’s needs. Health management strategies are identified; for example, around oral care, food and fluids, chest management, postural support, medication or referral to a GP or acute care. Any information collected as part of the pathway will be shared, so should the person be admitted to hospital it can be reviewed and updated by acute care staff. It can also be used to plan care when the person is discharged from hospital.

The team is auditing the pathway’s use and, in the meantime, have shared the information about and resources for this initiative with other NHS trusts.

What we did over winter 2021/22

We worked with colleagues in the NHS Immunisation Management Service (NIMS), NHS Digital and UKHSA to maximise access to and uptake of flu vaccinations among people with a learning disability. This included:

• reviewing the easy read materials about flu vaccines (Gov website) and how people can protect themselves from flu

• promoting a letter template to GPs (Gov website) for use in inviting eligible patients and their carers for their annual flu vaccination

• working with NHS England regional colleagues providing COVID-19 vaccination clinics, to identify a pathway where both the flu vaccination and a COVID-19 booster could be administered at the same visit.

We also supported the NHS national flu ‘call and recall’ service in identifying groups of eligible individuals according to clinical priority (using the Joint Committee on Vaccines and Immunisations (JCVI) guidance (Gov website)) and reminding them of the flu vaccine offer. Between October and December 2021, this service sent over 140,000 easy read flu reminder letters to people with a learning disability who were in an eligible group and aged 16 years and over.

By the end of February 2022, 75% of eligible people with a learning disability had received a flu vaccination [4].

Emergency care

We are supporting the NHS Urgent and Emergency Care Programme team with the development of their new strategy to ensure that people with lived experience inform how services should be shaped at every stage – from prevention to emergency admission to hospital, including the adoption of reasonable adjustments.

Acute care toolkit

We commissioned the Royal College of Physicians (RCP) and the Society for Acute Medicine (SAM) to produce an acute care toolkit that provides practical guidance for all healthcare professionals working in acute settings on how to care for people with a learning disability. This was co-produced with people with lived experience and published on 1 April 2022 to coincide with Medicine 2022, the RCP annual event. We will be promoting the toolkit more widely with the RCP to healthcare professionals working in acute care.

Evaluating training for carers on ‘soft signs’ of deterioration in people’s health

We commissioned Northumbria University to evaluate the tools used to identify signs of deterioration in people with a learning disability. This focused on the Restore2™ Mini tool as this tool was identified as the most widely used in focus groups with carers. The Restore2™ Mini early warning system uses ‘soft signs’ to document a person’s condition and detect acute illness early. ‘Soft signs’ will vary between individuals but include increased anxiety, skin colour changes, withdrawal or reduced awareness.

Initial findings indicate that carers value using the Restore2™ Mini tool. Carers report the tool and training arms them with a better understanding of the language healthcare professionals use and gives them more confidence to ‘speak up’ and get their message across to healthcare professionals.

Identifying risks to physical health

With funding from NHS England, Cheshire and Wirral Partnership NHS Foundation Trust have developed a tool that helps clinicians to proactively identify those with a learning disability who are at risk of premature mortality or preventable deaths. It was piloted within the trust and in three GP practices. The trust’s community learning disability health teams now use the ‘decision support tool for physical health’ or ‘DST-PH’ with all people known to have a learning disability. Guidelines on how to use the tool are also available for clinical staff in community learning disability teams and for primary care health staff.

The tool assesses a person’s mobility, nutrition and physical and mental health needs. Risks to their health are scored and actions developed to reduce these. This information is available to the community learning disability team to advise them on actions they could take to avoid acute hospital admissions and improve the health outcomes of people with a learning disability. The tool is updated as and when a person’s health needs change.

As an example, for a man who has Down’s syndrome and difficulty communicating, the team looking after him used the tool when he began declining food and having outbursts which were out of character. This helped them understand his deterioration and develop an action plan; his health has significantly improved since the implementation of this co-ordinated approach to his care.

The DST-PH proved to be an effective tool during the pandemic and further pilots have been rolled out across sites in London and the South East. Due to the demand for training on the tool, the trust is currently creating a video training session and this will be available through the Cheshire and Wirral Partnership NHS Foundation Trust and the CANDDID website. The team believe the tool has improved health outcomes in the short term and may have prevented admission to hospital or reduced the length of hospital stays. They are currently completing research on the impact of using the DST-PH.

The tool was presented to the National Learning Disabilities Senate, the Royal College of General Practitioners and ADASS. The development team have recognised the potential use of the tool in GP surgeries; they are working with Innovation Agency to explore opportunities with the NHS Transformation Unit around making the tool available digitally. This development would mean that GPs are able to calculate a person’s risk level swiftly enabling more efficient individualised care planning.

New accessible diabetes training in the North East

LeDeR learning in the North East highlighted diabetes as a major issue for people with a learning disability. This inspired a new pilot training course for people with a learning disability who have type 2 diabetes, developed by Skills for People and Diabetes UK, and funded by the Northern England Diabetes Clinical Network and Cumbria and North East Learning Disability Network. This addresses the lack in the North East of an accessible version of the education programme currently offered to individuals in the general population diagnosed with type 2 diabetes to support their understanding and management of the condition.

One of its core elements is assigning a buddy to provide support with the learning outside the training course.

The initial pilot of this training course was delivered in December 2021 over six weeks to five people with a learning disability and type 2 diabetes. Evaluation was completed in February 2022. Overall, participants found the course understandable and accessible.

The learning disability charity Your Voice Counts, supported by Skills for People, is developing the course into a ‘train the trainer’ model and will host the first course before a wider rollout. It is working with PCNs to identify people who may benefit from the course and refer them to it. South Tyneside CCG funded this phase and the trainers will be expected to join a ‘community of practice’ to share learning. The aspiration is that the course will in future be available to anyone who wants to go on it.

Understanding and managing constipation: a review

To inform our national work, we commissioned the South West NHS regional team to work with their local health community to review the management of constipation in adults and children with a learning disability and autistic people. This was completed in January 2022. We asked them to:

• determine if constipation or its complications increases hospitalisation or death in people with a learning disability and autistic people

• identify national and international best practice guidance and standards for constipation and bowel continence

• review the academic literature to explore approaches, models of care and services for effectively managing constipation and bowel continence

• outline best practices to improve constipation outcomes for adults and children with a learning disability and/or who are autistic.

The team surveyed parents and carers of young people with a learning disability and autistic people who experience constipation, looking at the impact on them and the young person and their experience of living with and managing the condition. As well as the academic literature review, they conducted a rapid evidence review of case studies, LeDeR findings and hospital data.

One key finding was that better recognition and management of constipation may reduce hospital admission and improve the quality of life.

This review’s recommendations are informing and defining the work in the South West region and wider LeDeR strategies in 2022/23. An established bowel and bladder project group in the South West is taking forward this work and will share developments with the region’s health inequalities improvement group and nationally with LeDeR regional co-ordinators.

Lung health and cancer awareness roadshows

We funded People First Merseyside, a self-advocacy group run by and for adults with a learning disability, to deliver a series of ‘Red Flag’ lung health and cancer awareness events between May and December 2021 across the North West, Yorkshire and Humber regions. The team ran 22 roadshows and has more planned; of the 267 people who attended, 173 had a learning disability and 94 were support workers, parent carers or professionals with an interest in the subject.

The team asked attendees to share the resources with three other people, giving a potential reach of over 700 people.

Evaluation after the roadshow noted an 88% increase in awareness of the signs and symptoms that could lead to cancer among those who attended.

People First Merseyside’s free resources include a poster, an accessible booklet to help people understand how to look after their lungs, and a film starring their members (YouTube) which anyone can use to help them recognise the signs and symptoms of cancer.

Be screening aware

Be Cancer Aware’ is a co-production project that works with experts by experience from across the North East and Cumbria. As part of this, the North East and Cumbria Learning Disability Network, in partnership with Skills for People, Speak Up Together and People First Independent Advocacy, are developing training modules across the five adult cancer screening programmes (breast, bowel, cervical, abdominal aortic aneurysm and diabetic eye screening) that people with a learning disability will deliver to their peers, to increase awareness and uptake of these vital screening offers.

These were piloted in the North East and North Cumbria earlier in 2022, and the resources are now being cascaded through the national screening programme and learning disability partners for other self- advocacy organisations to use.

Cancer cervical screening

Around two women[8] die every day from cervical cancer.

The Office of Health Improvement and Disparities delivered a cervical screening campaign in February 2022 and engaged the NHS and a number of disability organisations to ensure that its messages reached people with a learning disability. We reviewed the campaign’s easy read information, and provided posters, leaflets and the easy read letter templates for inviting people to a screening and then following up.

We worked closely with NHS London to deliver a targeted cervical screening campaign at the same time, featuring a woman with a learning disability.

Targeted lung health checks in the North East

>We are running a pilot scheme offering targeted lung health checks (TLHCs), with the aim of diagnosing lung cancer at an earlier stage when treatment may be more successful.

The pilot in Gateshead offers TLHCs to anyone aged 55 or over who has ever smoked or currently smokes. The person is asked questions at an initial appointment with a healthcare professional to assess their risk of lung cancer. Those with a higher risk are offered lung cancer screening, including a CT scan of their lungs. If they smoke, they are also offered help to stop.

The North East developed a specific pathway to ensure individuals flagged on their GP’s register as having a learning disability were offered support from the community learning disability team to understand and decide whether to have a TLHC. So far this pathway has supported 25 people in Newcastle and Gateshead with the number expected to increase as the pilot is rolled out.

The region aims to expand the pilot to three more locations across the North East and Cumbria and will be including the learning disability pathway in this.

Bowel screening in Sutton

People with a learning disability are less likely to take part in bowel cancer screening compared to those without a learning disability, leaving them at a higher risk of undetected cancer[9].

Colleagues across Sutton are working to increase uptake of bowel cancer screening among people with a learning disability. The learning disability health facilitator talked about the importance of bowel cancer screening at a borough-wide primary care meeting focusing on meeting primary targets, learning from LeDeR and improving the range and effectiveness of primary care services.

They recommended:

• promoting bowel cancer screening at AHCs and in quarterly multidisciplinary team meetings in care homes for people with a learning disability

• having a named lead for each GP practice to manage the bowel cancer screening list and follow-up with patients on the list, to ensure their screening is completed.

The cancer screening leads emailed easy read materials and NHS videos about bowel cancer screening to all GP practices in Sutton.

The team is working to increase the uptake of AHCs. If a patient attends an appointment who has not had an AHC in more than 13 months, the learning disability nurse checks whether bowel screening has been completed and if it has not, explores why not. They provide the person with easy read or other relevant information about screening and can request a screening kit is sent to them. A fortnight later the nurse checks if the patient has now been screened.

The team has seen 82% uptake of bowel cancer screening, higher than the 67% uptake in the general population in 2020/21[10].

One person who was encouraged and supported to have bowel screening was found to have polyps and has since received treatment.

The team is planning to promote breast and cervical screening in the same way and is working with the local branch of Mencap to co-produce videos explaining cancer screening to service users.

My life with epilepsy

We have funded SUDEP Action to improve and develop information and resources to support people with a learning disability and autistic people. The 'My Life with Epilepsy’ project is developing a ‘toolkit’ that helps these groups better understand and reduce their epilepsy risks.

Leading epilepsy and learning disability experts from Speakup self-advocacy group, Cornwall Partnership NHS Foundation Trust and the University of Plymouth are involved, supported by Sheffield University.

The resources, which will include videos and leaflets, will be tested in one or two local healthcare settings to get feedback from people with a learning disability, autistic people and their families and carers, to make sure they are helpful to them.

As part of this project, Speakup will also review SUDEP Action’s EpSMon app, to see how it could be redesigned to better support people who have a learning disability or are autistic to monitor the condition. SUDEP Action will consider any recommendations when it designs the next version of EpSMon.

Epilepsy guidelines

We also worked with colleagues to influence the first draft of the new National Institute for Health and Care Excellence (NICE) guidelines on diagnosing and managing epilepsy.

A review of epilepsy in Lancashire and South Cumbria

LeDeR findings on SUDEP led Lancashire and South Cumbria (LSC) LeDeR steering group, supported by NHS England, to review all reported deaths in their area that noted an epilepsy diagnosis. A task and finish group looked at the epilepsy referral pathway in each CCG, to establish how assistive technology is being used to improve epilepsy care and treatment, and to check if people with a learning disability, their family carers and providers of care are aware of the pathways and have an appropriate epilepsy care plan.

Recommendations were made for local implementation and these will be adopted through 2022/23 to improve care for people with epilepsy across the ICS.

We have also commissioned SUDEP Action and Cornwall Partnership NHS Foundation Trust to develop practical guidance and resources for both commissioners and providers of community and specialist hospital care on how to commission, deliver and oversee safe and effective epilepsy care for people with a learning disability. This work has been commissioned in response to the findings about epilepsy in the Clive Treacey Independent Review (pdf).

Learning from lives and deaths in the South East

In Oxfordshire, the CCG steering group is responsible for the LeDeR process and is overseen by the Vulnerable Adults Mortality Panel – a subgroup of the Oxfordshire Safeguarding Adults Board (OSAB).

The panel’s last annual report (pdf), published in November 2021, includes the experiences or ‘pen portraits’ of Fred, Agnes, Stanley and Margaret, four people with a learning disability who died locally. Based on their LeDeR reviews, these findings provided insights into their lives, as well as whether best practice was followed in their care, what caused their death and any suggestions for future improvements in others’ care.

The report and pen portraits have been shared in council meetings, in the ICS steering group, with safeguarding boards, in care provider forums and with learning disability charities.

The LeDeR reviews underlined the importance of family involvement and community (Fred had felt particularly isolated under COVID-19 restrictions); understanding an individual’s communication needs (highlighted in Agnes’ LeDeR review); consistent care and the co-ordination of complex care needs and attendance at AHCs (highlighted in Stanley’s and Margaret’s reviews respectively).

My Life My Choice published an easy read version of the annual report, including the pen portraits (pdf).

The team is building a resource library for professionals, providers, carers and families. This will include bereavement support and guidance on conversations around planning for death, making a will, creating a funeral plan and talking about loss.

An ACE initiative in Wakefield

Local LeDeR findings in Wakefield led to an educational project to improve the health of people with a learning disability in the community and reduce unplanned hospital admissions. This includes training open to anyone working in primary care across the district.

The LD-ACE programme, ‘Learning Disability – Achieve Change through Engagement’ is supported by South West Yorkshire Partnership NHS Foundation Trust, Wakefield CCG and Connexus Healthcare. It is being delivered by paid carers, the CCG, specialists in the acute hospital trust and the community learning disability team, with involvement from people with lived experience, carers and families.

The training covers key areas identified in LeDeR reviews: the Mental Capacity Act (MCA), reasonable adjustments, constipation, STOMP (over medication), dementia, dysphagia and transition from children’s to adult services. It also cascades wider LeDeR learning – for example, around timely referrals to specialist learning disability teams – and addresses local actions in LeDeR reviews.

A local learning disability champion network has emerged through this scheme and will continue to unite the voices of people with a learning disability, specialists and champions to highlight good practice and learning in primary care.

The number of people on the learning disability register in the district has increased and more referrals are being made to the community learning disability team. Families report better experiences – including more timely medication and improved follow-up on health action plans. The team have shared this approach with colleagues in Huddersfield and Calderdale and aim to cascade it across the ICS and to other regions.

Seven AHC pilot sites

In July 2021, we invited proposals for new and creative ways of supporting the local delivery, uptake and quality of AHCs (the responsibility to deliver AHCs remains with individual GP practices). We are funding pilots of seven of the 36 proposals we received (one in each NHS England region). Learning from the pilots will inform LeDeR strategies.

The pilot scheme from Wirral CCG, as part of ongoing work to improve health action plans, is exploring creative ways to improve the quality and uptake of health checks among 14 to 17-year olds and adults with a learning disability.

The project working group has representation from children and young people, parent/carers, commissioners, acute trusts, primary care, community learning disability teams and voluntary sector organisations, including Wirral Mencap.

Cheshire and Wirral Partnership, working with a parent and carer organisation, recruited a peer support worker in February 2022 to offer support and raise awareness about AHCs among looked after children, people from minority ethnic groups, people living in more deprived areas and those living independently.

The project will run until December 2022 when an audit will establish its impact on AHC awareness, and lessons learnt will inform the LeDeR strategy for Cheshire and Merseyside.

Additional work on AHCs

In the past year our work to improve access to, uptake and quality of AHCs has included:

• presenting at the Council for Disabled Children conference for SEND leads to elicit feedback on the potential inclusion of AHCs in the education and health care plan (EHCP) process

• finding out through the Race Equality Foundation community networks what barriers minority ethnic groups face in accessing and taking up AHCs, so we can act to overcome these

• developing an AHC learning hub with Health Education England

• commissioning co-produced information, materials and resources for children and young people from diverse backgrounds that promote the importance of AHCs.

People with a learning disability serving a prison sentence longer than a year will be offered an AHC, as outlined in the prison health primary care service specification (2020 pdf).

Health action plans in Manchester

In July 2021, specialist community learning disability services in Manchester were awarded funding from NHS England – and this was matched by the local primary care commissioning group – to increase the number of people having an AHC and receiving an effective health action plan. The MHCC* nursing team and the learning disability and autism team have changed the culture around AHCs across the city (89 practices) after listening to people with a learning disability to understand how AHCs could be made more meaningful and accessible. They continue to engage with people with a learning disability through a new forum. They ensure reasonable adjustments are in place before and during any appointment; have improved and embedded health action plans in conversations around any health concerns and have developed health promotion activities for individuals via their GP practice, eg healthy weight pathways; and support screening and immunisation.

The team are also exploring new support roles and have connected system partners, including social care, to reduce health inequalities among people with a learning disability or autistic people from a minority ethnic group.

The MHCC nursing team is about to recruit a project manager to identify and bridge any gaps in this new approach, and one PCN is to fund a learning disability health liaison facilitator to work with patients, families, carers, supported living, voluntary organisations and clinicians across primary and secondary care.

Video series to increase the uptake of AHCs

>NHS England South West has produced four films for healthcare professionals to help increase AHC uptake among people with a learning disability in the region. The films were made with support from the West of England AHSN and in collaboration with the West of England Learning Disability Collaborative.

Other films featuring members of the Misfits Theatre Company in Bristol have been produced to give people with a learning disability, their carers and families more information about AHCs, oral health and health action plans.

The NHS team is sharing the films widely with primary care staff, the learning disability and autism programme and its stakeholders across the region. So far they have had over 500 viewings.

A review into inequalities

Working with the NHS Race and Health Observatory, we commissioned the University of Central Lancashire to review the causes of the inequalities that impact on health outcomes for people with a learning disability from a minority ethnic group – to give us a better understanding of the actions the NHS and its partners need to take to address these. This review is due to be published in Spring 2023.

Overcoming barriers

To inform how we should improve access to healthcare for people with a learning disability from minority ethnic groups in England, we have commissioned the Race Equality Foundation in partnership with Learning Disability England to research the inequalities people in these groups face and identify targeted actions to address these. This work is gathering insights from people with lived experience as well as the academic literature.

AHCs and minority ethnic groups

In December 2021 we ran a webinar to present the work of the nine CCGs appointed as AHC exemplars in 2020/21 to staff working in primary care, health inequalities and CCGs. This included efforts to improve the uptake of AHCs among people from minority ethnic groups.

Training for community organisations

Learning Disability England, supported by the Race Equality Foundation, is working with self-advocacy and community networks led by or open to people with a learning disability and their families from minority ethnic groups to strengthen:

• inclusive self-advocacy

• family-led or parent peer support

• local community responses to tackle health inequalities and unfair treatment.

This work will deliver co-produced training materials and resources that widen the understanding among community organisations, self-advocacy groups and family-led groups of racism and how to challenge it. They will encourage these groups to forge stronger links with local minority ethnic group organisations and to create action plans for greater engagement from minority ethnic groups with their services.

Reducing inequalities – local programmes and ICBs

Each ICB must now have a named lead who ensures that the challenges faced by people from minority ethnic groups are considered and addressed as part of the local LeDeR programme. This includes ensuring that reviewers understand the challenges faced, establishing links with organisations that represent minority ethnic groups, raising the profile of LeDeR and increasing death notifications from minority ethnic groups.

ICBs are expected to know the number of notifications they should expect for people with a learning disability from minority ethnic groups, based on the demographics of their local population, and develop action plans to increase the number of deaths reported. Their annual LeDeR action plans must also explain how they will reduce inequalities in health.

AHCs in Nottinghamshire

We have funded the Nottingham and Nottinghamshire learning disability transformation partnership’s initiative to understand the barriers to and increase the uptake of AHCs among people from minority ethnic groups in the county.

A newly recruited learning disability nurse will work with local groups and people with lived experience, including the My Life Choices co-production group. Their insights will be used to target support to improve the uptake of health checks, confirm that GP learning disability registers are complete, and ensure high quality health actions plans are produced and fully understood.

Improving health in diverse and transient communities

Norfolk and Waveney CCG, with funding from NHS England, is working with charities, organisations and community groups on a 12-month pilot to support people from minority ethnic groups, including Traveller and Gypsy communities. A learning disability nurse, a GP and a support worker first focused on supporting GP surgeries in the OneNorwich PCN, advising and training their staff on AHCs and updating the learning disability register. So far 17 of 22 OneNorwich GP practices have engaged with this initiative.

The team is raising AHC awareness by phoning patients whose health checks are overdue and has conducted over 50 outreach visits so far, including one to a Traveller site. They have met religious leaders, provided easy read materials, hosted a stall at a Black History Month event, linked up with the team running the vaccination bus and attended a food bank at a mosque. They also attend the equality and diversity group meetings in the CCG.

This pilot scheme is already seeing an increase in AHC uptake among people with a learning disability in these communities: 516 people had had a health check by January 2022 – compared to 440 in January 2021. The team is now evaluating the scheme and aims to scale it up across Norfolk and Waveney.

Making care decisions in advance

The North East’s LeDeR confirm and challenge group, which includes members with a learning disability, highlighted the need for better resources in this area. In response, new easy read resources about end of life care for people with a learning disability and those who are autistic have been developed in partnership with Inclusion North and the End of Life and Palliative Care Network.

These resources explain emergency health care plans (pdf) and form part of the Northern Cancer Alliance’s Deciding Right programme resources for end of life and palliative care.

Advanced care planning in the North

The NHS learning disability and autism teams in the northern regions delivered two advance care planning and DNACPR good practice webinars to over 150 people in autumn 2021. The audience included care providers, people with a learning disability, their families, and staff from primary care, learning disability teams, mental health trusts, acute hospital trusts and advocacy groups.

They heard personal perspectives from people with a learning disability about DNACPR and end of life care, their concerns and tips on how staff could communicate better with them about critical decisions. Attendees had the chance to discuss issues of respect, the inclusion of next of kin, establishing mental capacity, clinical rationale and the importance of agreeing (and writing down) advanced care plans, eg if a person has a life-limiting condition such as dementia or is deteriorating. Learning from LeDeR reviews was a key part of the webinar.

The webinars also looked at the recommendations in the CQC’s review of DNACPR, Protect, Respect, Connect (published in March 2021). The teams provided useful resources such as the DNACPR support pack (pdf) developed by Turning Point and Learning Disability England that explain what DNACPR orders are, helping patients, families and carers to raise any questions and concerns.

The teams have developed and circulated a discussion paper to primary care and acute trusts covering good practice and areas for consideration to ensure all patients receive a consistent approach to DNACPR. They have awarded funding to self-advocacy groups to raise awareness of this important aspect of care.

Resuscitation resources developed in Gloucestershire

The ReSPECT* form is used to plan for an emergency situation and express individualised recommendations for a person’s clinical care and treatment if they are unable to make or state choices. The clinician has a ReSPECT conversation with the person with a learning disability, where possible together with a family member, carer or a doctor or nurse, and this is documented on the ReSPECT form. If a person lacks capacity, a ‘best interests’ approach is explored – or anyone who has been legally appointed to make decisions on their behalf is engaged. The form is then kept by or with the person until it may be needed.

In May 2021, NHS Gloucestershire CCG discussed the Resuscitation Council UK’s ReSPECT process with its learning disability health action group, which includes learning disability experts by experience and experts by profession. It then worked with Resuscitation Council UK and Inclusion Gloucestershire to develop an easy read leaflet explaining the form and how it is used. The Resuscitation Council UK has also commissioned Inclusion Gloucestershire to produce a video about the ReSPECT process and how to talk to someone about their priorities and wishes in an emergency situation, to be used as a national resource for people with a learning disability or who are autistic.

New resources for clinicians

We commissioned a video for healthcare professionals in primary care that explains reasonable adjustments and how they can support people with a learning disability to attend their AHC.

A reasonable adjustment digital flag

The NHS Long Term Plan requires that by 2023/24 a ‘digital flag’ in the patient record will ensure staff know a patient has a learning disability or is autistic. We commissioned NHS Digital to create the ‘reasonable adjustment digital flag’ for patient records. This is a complex process involving significant development and testing across different NHS and supplier systems.

The flag has now been built on the NHS Spine in summary care records and is expected to be piloted by the end of 2022 with ‘early adopter’ organisations to ensure that when it goes ‘live’ it works across all local NHS systems. It will eventually enable staff across health and social care to identify, record, share and view details of a person’s reasonable adjustments, so that they are known about wherever the person is treated or cared for.

Going to hospital book

The easy read book Going to Hospital advises children and young people with a learning disability or who are autistic what to expect at a hospital appointment or if they are admitted. Co-authored by Jane Rees from the NHS Learning Disability Nursing And Safeguarding team at Royal Cornwall Hospital Treliske and Angie Emrys- Jones from Cornwall Down’s Syndrome Support Group, it won the HSJ Patient Safety Award 2021: Learning Disabilities Initiative of the Year.

The book is easy to read, uses Makaton (signs and symbols) throughout and is sent to patients known to the learning disability team at the hospital before their visit.

The authors are now producing a version for adults – at the request of many patients, families and carers.

New hospital liaison teams

Last year NHS Bristol, North Somerset and South Gloucester CCG (BNSSG) funded new teams of learning disability nurses in two acute hospital trusts, North Bristol Trust (NBT) and University Hospitals Bristol and Weston, to support people with a learning disability and autistic people to attend hospital. They work with clinicians to ensure that individual reasonable adjustments are in place where they are needed. The nurses can also help GPs to support patients who are distressed about attending. The team have ‘reasonable adjustment boxes’ that contain a range of resources to help calm or distract patients.

BNSSG has also funded a ‘medi room’ at NBT with calming lighting and sounds that patients in hospital can use before an operation, seven days a week. Staff also provide noise cancelling headphones, weighted blankets (to reduce anxiety) and distraction techniques, eg hand massages or nail painting, while needle-phobic patients are having a canula inserted.

A new hospital passport app

LeDeR learning in the South West has led to an innovation to improve the experience of people attending any hospital in Plymouth. Earlier this year University Hospitals Plymouth Learning Disability Liaison Team launched a hospital passport ‘app’ that patients with a learning disability can use. This was co- created with Derriford user group – a group of people with a learning disability who help improve the hospital’s services – and built by Suvo Ltd, using feedback from a survey of people with a learning disability who use hospital services in Derriford.

The app will not replace the paper version of hospital passports so individuals can choose whether to have a digital or paper passport.

Paper passports however can be easily damaged, lost or incomplete and don’t include an overview of the person or any in-depth understanding of their physical or mental health conditions.

The app can be used on mobile phones, tablets and on desktop computers and includes vital information on any allergies, medication and details of reasonable adjustments that can make a patient’s experience in hospital less stressful.

Now available for use in Plymouth, the team hopes to roll out access to the app across Devon, Cornwall and the rest of the South West region, dependent on funding.

Building on this, we have commissioned North of England Commissioning Support Unit to work with the RIX Centre to understand what other digital solutions already exist for hospital passports and whether these might be rolled out across the country for people with a learning disability and autistic people.

Social prescribing in Suffolk

Ipswich and East Suffolk CCG is looking at how social prescribing and personal health budgets can improve the health and wellbeing of people with a learning disability as part of their AHC.

During an AHC a person can choose to be referred to the social prescribing link worker for help with accessing individualised support with their health and wellbeing, such as a mental health support group, or a walking or knitting group to help with isolation. Link workers also help existing services adapt their communications, signpost people to activities and in some cases go with them.

The project team is also:

• identifying new link workers in primary care and the voluntary care sector

• co-producing training materials with the self-advocacy group Ace Anglia for social prescriber link workers on:

  • AHCs – what they are and why they are so important for people with a learning disability

  • supporting people referred to the social prescribing team

  • reasonable adjustments – what they are, and how to implement them and ensure any provision a person needs is provided when they attend

• delivering awareness raising sessions and training videos for NHS primary care staff on social prescribing

• creating an easy read health action plan, and an easy read health and wellbeing support plan that link workers then develop with the individual.

The team also worked with Ipswich Borough Council and the Fairer Access to Health and Leisure Activities initiative to improve the accessibility to and reasonable adjustments at local gyms and leisure activities. Individuals can now join a bespoke weight management session via OneLife Suffolk, while Public Health Suffolk has developed easy read motivational activity cards.

As the link worker role develops it should become a rich resource for supporting people to access other health provisions, eg someone who can help a person manage their anxiety about cancer screening.

STOMP–STAMP is everybody’s business

Over 800 people joined a STOMP/ STAMP day in July 2021. The sessions (available online) included personal stories, presentations on improving care, learning from LeDeR, alternatives to medication and sharing STOMP resources, and covered our key priorities for STOMP. These are:

Primary care:

• AHCs to include a structured medication review by a doctor or pharmacist

• our continued education and development of the primary care workforce – GPs and over 1,000 pharmacists in England (including pharmacists employed in PCNs) – to conduct these reviews and ensure the person receives the form of pharmaceutical care that best promotes their mental, physical and behavioural wellbeing.

Specialist providers, NHS trusts and private/independent providers:

• working to improve STOMP processes and pathways

• using their specialist knowledge to develop safe protocols and support less experienced primary care colleagues

• sharing expertise and capturing experiences from professionals and self-advocates.

Training and re-engagement for health and social care staff and other carers:

• in partnership with Health Education England, developing six new modules with the educational platform MindEd, to help families, self-advocates and non-specialist health and social care staff to understand STOMP and how they can play their part in it. These are due to launch in 2022; another four for more specialist teams are in production for release later in the year.

Self-advocacy and families:

• provide STOMP information in different languages; it is now available in eight, including Urdu, Hindi and Polish, and the team are working with the Race Equality Foundation to explore how we can work better with people from minority ethnic groups

• provide a STOMP resource for autistic people and their families: with the National Autistic Society and their members we created this resource explaining psychotropic medicine and medication reviews.

A review of Jimmy’s* medication

The STOMP programme in North East London Foundation Trust (NELFT) is led and developed by the advanced clinical pharmacist for learning disabilities with the support of the community learning disability teams. Two new patients are seen per borough each week.

Of the 168 people with a learning disability or who are autistic and who meet the STOMP criteria and are eligible for a medication review, so far 68 have been placed on medication reduction plans and followed up using an evidence-based assessment of medication. By reducing antipsychotic adverse effects, their quality of life has significantly improved, and feedback from patients, carers and healthcare professionals involved in the project has been positive.

Jimmy is an example success story.

Jimmy is 46 and has a mild learning disability. He lives in supported accommodation and needs minimal support for day-to-day activities. He loves gardening and going out for a walk with his girlfriend who he visits regularly. Jimmy is always eager to learn new skills and is very motivated to improve his own health. He and his girlfriend both joined a clinic to quit smoking together.

In 2012 a consultant psychiatrist prescribed Jimmy risperidone because he was often distressed and could on occasion become angry and aggressive. Jimmy did not receive any positive behaviour support, psychological support or occupational therapy.

Jimmy was identified as eligible for a STOMP review by the community learning disability team. He was referred to the STOMP clinic and had an initial consultation with a consultant, the pharmacist and the nurse in November 2020.

STOMP was explained to him and he was asked how he felt about having his medication reduced and receiving additional support through a behavioural specialist and occupational therapy. Jimmy and the multidisciplinary team involved in his care both agreed to this plan as he understood the medication was not the best thing for him. Over the course of five months, his dose of risperidone was gradually reduced and by June 2021 Jimmy was no longer prescribed the medication.

As his medication was being reduced Jimmy did on one occasion show signs of aggression towards another resident. This was managed with other interventions and his medication was not increased. The side effects that Jimmy had previously experienced reduced, including restlessness, weight gain, sleeping too much, mood changes, reduced sex drive and difficulty concentrating.

Jimmy has been off psychotropic medication since and he has now been discharged by the psychiatry team, but still has regular reviews from the nursing team to check that he is doing well. The GP can refer Jimmy back to the STOMP clinic should any signs of distress return.