Management of medical conditions in 2022/23

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 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.

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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 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, 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. 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.

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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. 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 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.

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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 2021 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 surveyed with a learning disability. These ‘deep dives’ asked additional questions and revealed the following themes of areas for improvement in service:

• in reasonable adjustments - such as longer appointments where necessary
• in telling people bad news – i.e. staff need to think about the words they use when they talk to people with a learning disability about cancer.

Experts by experience from the national Learning Disability and Autism team helped to develop the easy read versions of the cancer survey. The results of the national report and of the deep dives are also 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.

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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.

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.