Action from learning report 2023/24

Improvement work across the country

The following examples describe actions that system partners and their health and care staff have taken to improve access, people’s experience of using services and their outcomes. Local LeDeR annual reports on ICB websites list and give more detail of local service improvement work.

Making a primary care network autism friendly – London

Autistic people can experience significant health inequalities and reduced life expectancy compared to the general population (UK Parliament, 2024). The NHS Long Term Plan set out the steps the NHS should take to tackle the causes of ill health and preventable death for autistic people and to improve their experience of using health services.

The challenge

London Fields Primary Care Network (PCN) comprises 6 GP practices in the City of London and Hackney. The PCN wanted to improve access to primary care services for autistic people by making its practices more autism friendly and giving them more support from practice staff.

The response

Between May 2022 and March 2024 the PCN implemented a scheme to make its services more accessible and ‘autism friendly’, by ensuring its staff have the training and learning opportunities around autism they need to build confidence in implementing reasonable adjustments for autistic people.

The project lead ran 2 surveys – 1 for staff and 1 for autistic adults and those who support them, as well as interviews with the latter group.

Staff identified that, to feel more confident to work with autistic people and implement reasonable adjustments they needed:

• clear guidance on how to best support autistic people
• autism training, including on how to recognise autistic traits or that a person has more than one condition: for example, dyspraxia or ADHD as well as autism
• opportunities to listen to people’s lived experiences of autism

68% of autistic people and those who support them said it was difficult to go to their GP; 44% reported that the practice environment was ‘hard’ or ‘very hard’ to manage; and 32% did not know what to expect during their appointment. Respondents suggested areas for improvement:

• staff being aware of the person’s needs or reasonable adjustments or asking them how their visit could be made more comfortable
• staff understanding autism; responders said knowledgeable staff help reassure and make them feel less anxious staff having the time to explain things clearly in the way that works best for the person and giving them time to process information
• contact in ways other than phone calls as some people find these provoke anxiety
• making the physical environment of the GP practice or healthcare setting more welcoming to autistic people: for example, having a quiet space or sensory tools like ear defenders or picture books available

The outcome

Based on the above insight, the project steering group, which included experts with lived experience, developed materials to make health and care practices and the wider neighbourhoods more autism friendly:

• City and Hackney autism friendly standards. These help healthcare providers, public sector and community organisations understand what it means for their services to be autism friendly and more accessible to autistic people. The standards set goals such as celebrating autism acceptance, making things predictable and creating a sensory friendly environment.
• Autism friendly checklists for primary care and other healthcare settings (now embedded in GP commissioning contracts) – tools for the PCN and healthcare staff to self-assess the accessibility of their service for autistic people and then create a plan to make any improvements and reasonable adjustments, including providing people with alternative methods of contact for appointments, longer appointments, advice on what to expect or a quiet space to wait.
• A learning pack for reception staff on supporting autistic people; 300 have already accessed this. A top tips guide for supporting autistic adults during appointments is also available. Some GP practice staff also attend autism training that is co-designed and co-delivered with an autistic resident.

GP practices that complete the checklist and their plan to improve accessibility where staff have accessed the training, receive a City and Hackney autism friendly badge.

Wider impact

Homerton Hospital A&E department, among other facilities, is implementing actions to make it more accessible for autistic people and people with a learning disability, with help from the Homerton Learning Disability and Autism team. These include:

• asking the people if they need reasonable adjustments when they book in
• providing guidance to staff on what they should do when an autistic person presents at A&E
• providing sessions for staff on how to support people with a learning disability and autistic people
• providing a quiet space for people to wait where possible

Contact

For more information, please contact This email address is being protected from spambots. You need JavaScript enabled to view it.

Resources

• NHS England: Sensory friendly resource pack. This supports the delivery of the NHS Long Term Plan commitments for autistic people and adjustments to the sensory environment of NHS settings.
  

• City and Hackney: Autism friendly checklists for primary care and health care settings

• LeDeR resource bank – reasonable adjustments

• NHS England: The Oliver McGowan mandatory training on learning disability and autism

Reviewing the quality of annual health checks – Coventry and Warwickshire

The NHS Long Term Plan set the ambition that by 2023/24 at least 75% of people aged 14 and over on the learning disability register in England should receive an annual health check (AHC). Due to the work of NHS primary care staff, community learning disability teams, self-advocates, families, carers and others this national target rate was surpassed early – 79.8% in 2022/23.

When done properly AHCs promote healthy lifestyles, support wellbeing and enable early access to healthcare support if the person needs this. They can spot early signs of cancer, diabetes, respiratory and heart disease, and provide an opportunity to discuss vaccinations, promote screening, manage and monitor known health conditions such as epilepsy or dysphagia (swallowing difficulties) and discuss end of life decisions.

For an AHC to qualify as a good one, practices need to create a health action plan with the person, outlining the person’s health needs, what they need to stay healthy and who can help them with this, and a next review date.

The challenge

In 2022/23, NHS Coventry and Warwickshire ICB achieved an AHC uptake of 81% and for 96% of these a health action plan was completed. Despite this substantial improvement, regional learning from LeDeR showed inconsistencies in AHC quality and the level of detail recorded in health action plans. Also, 848 eligible people did not receive an AHC in 2022/23 (based on learning disability register data as of March 2023).

The response

In 2023/24 the ICS’s Quality and Nursing Clinical Transformation Team evaluated the quality of AHCs and health action plans and sought to understand why some people have never received an AHC or not in the last 3 years.

Evaluating the quality of AHCs. The team developed an AHC service evaluation form and invited GP practices across Coventry and Warwickshire to complete this; 8 took part. The form asked:

• Were patients sent an accessible invitation?
• Did they receive a pre-AHC questionnaire? (these can reduce a person’s anxiety and help them or their carers think about what they want to ask the GP or nurse at their AHC)
• Were they offered reasonable adjustments and their needs flagged?
• Was their ethnicity and level of learning disability (mild, moderate, severe) recorded? (recording of both is mandatory)
• Did they receive a health action plan documenting what is needed to help them stay healthy?

Learning disability nurses reviewed 32 AHCs from GP notes – for 1 man and 1 woman aged 65 or over, a young person between 14 and 17 years and a younger woman over 25 years at each of the 8 practices. (LeDeR learning had established particular health inequalities in the area for transition from young people’s services, and for bowel, breast and cervical screening.) They found:

• ethnicity inconsistently recorded and level of learning disability not recorded in 12%; staff training was recommended as well as further review to identify any correlation between this level and quality of AHC received
• only 60% received a pre-AHC questionnaire
• reasonable adjustment digital flags were not added to every person’s medical record
• no conversation about transition to adult services had been with over half the young people
• low uptake of relevant cancer screening compared to the general population: bowel cancer (54%), breast cancer (18%), cervical cancer (33%). Some good practice was identified – a person had bowel screening at their AHC and another had a breast examination. The ICS is working to address screening uptake
• low uptake up of the pneumococcal vaccination. A local LeDeR sub-group is working to addressing this. Some good practice was identified – a person at risk of respiratory illness received pneumococcal vaccination at their AHC
• for the 32 people whose AHC was reviewed, only 16 had a health action plan. Some good practice was identified: well-documented plans with action points including an ECG for 1 person and referral to physiotherapy for another with Parkinson’s disease; 1 person’s medication was reviewed and their anti-psychotic medication reduced

The nurses also spoke to 22 people who received an AHC or their carer/family member about their experience and found:

• reasonable adjustments, home visits and adapted communication are valued
• some felt rushed and wanted more time to discuss their health
• 3 carers said an AHC would not have happened without a home visit
• 1 patient could not remember receiving their AHC (it was done in a telephone call)

Evaluating why some people had not received an AHC. The team asked 20 people or their family/carer (5 from each of 4 GP practices with 10 or more eligible people who did not receive an AHC in 2022/23) why they had never had an AHC (over half) or not in the previous 3 years. Their reasons included:

• see a paediatrician and do not feel an AHC is needed (2 people)
• health needs already met by GP (4)
• cannot recall receiving an invitation for an AHC (5)
• already have other health checks: for example, for mental health
• lack of support to travel to the appointment or no reasonable adjustments to support attendance – for example, struggle with the practice environment, receiving a text invitation but do not read texts

and they suggested that the following would help them have an AHC:

• combine with other GP appointments
• having an AHC at home (8 of 20)
• send an easy read invitation rather than a text
• provide support to attend an AHC (3 in 20)

Learning disability friendly badge: In September 2023 the ICB launched a scheme it had developed with the charity Grapevine and a group of GPs to maintain the high AHC uptake in the area and ensure their GP practices met a quality standard. Those GP practices meeting the scheme’s good practice criteria – provides reasonable adjustments, personalised care and high quality AHCs and has an identified learning disability champion – can apply for a ‘learning disability friendly’ badge and be accredited as a ‘learning disability friendly’ practice.

The outcome

In 2023/24, GP practices in Coventry and Warwickshire delivered more AHCs than in 2022/23, despite the ICB not commissioning targeted AHC support for learning disability nurses.

So far 13 GP practices have been accredited as ‘learning disability friendly’ and the application panel will review more when they next meet. This panel includes a LeDeR reviewer and representatives from Grapevine, the ICB’s primary care and/or quality team, and the Community Learning Disability Team.

Wider impact

In summer 2024 the ICB published its findings and recommendations for best practice, sharing these across the ICB, primary care and nationally.

Contact

Resources

• Coventry and Warwickshire ICB: Annual Health Checks Quality Report
• Coventry and Warwickshire Learning Disability Friendly Badge – application form for GPs
• Coventry and Warwickshire: Guidance for health and care staff on annual health checks
• LeDeR resource bank

The 2023 LeDeR Annual Report found that respiratory diseases are the second most common cause of death among people with a learning disability, accounting for 16.5% of deaths in 2023 compared with 11.1% in the general population in 2022.

A rapid response respiratory service – Lincolnshire

The challenge

The children’s physiotherapist at Lincolnshire Community Health Services NHS Trust was profoundly affected by the death in 2018 of a child with complex needs they had treated during repeated admissions to hospital with chest infections.

The physiotherapist reflected that preventing, diagnosing and managing poor respiratory health at home would be a better way to care for the children they see in hospital, many of whom have cerebral palsy and over 80% a learning disability.

Clinicians observed that the young people under their care who were not mobile or who needed support for movement experienced recurrent chest infections or long-term ventilation.

The response

In 2019 the physiotherapist and a colleague established a pilot scheme of support for parents and carers of children with complex respiratory needs to do some physiotherapy, as well as a visit when any child or young person at home became ill for example, at the start of a cough – to deliver treatment. Without this visit the child or young person would likely have seen a GP or attended hospital, and potentially been admitted.

Based on the success of the pilot in reducing hospital admissions and with recurrent funding for an expanded physiotherapy team, in February 2020 the team established the 5-day Lincolnshire Complex Needs Rapid Response Respiratory Service – a new pathway to avoid hospital admissions/readmissions for children and young people aged 19 and under with complex respiratory needs. Since 2023, this has been an all age, 7-day service.

A physiotherapist visits the person within 48 hours of being notified by a parent or carer that they are unwell, but in practice this is usually on the same day. People are seen at home, in school, in care homes and even at holiday sites. The physiotherapists provide treatments to keep the person well: for example, airway suction, chest percussion and use of cough assist machines. Some can prescribe antibiotics and others are training to qualify as prescribers. The physiotherapists also assess the child’s chest using a risk identification matrix to identify the risk of recurrent chest infections.

Where the person needs further support, the team can contact the local district general hospital, nearby tertiary centres and other community services to request advice from consultants, nurses or palliative care teams.

If a person does need to be admitted to hospital, the physiotherapy team can assist the paramedics – for example, by sharing information about the person’s specific needs, including use of the correct chair and reasonable adjustments. In hospital, the physiotherapists can discuss the patient’s care with the consultant or other staff and train staff on using specialist kit such as a cough assist machine or oscillating vest. In one case, a physiotherapist supported a person while in A&E who had a tracheotomy and was on a ventilator.

The outcome

From avoiding hospital admissions or reducing length of stay, the team, which now has the equivalent of 6 full time staff, estimates that in 2023 they saved £1 million in cost: a hospital admission due to asthma can cost £1,516 to £2,473 a night and an intensive care bed for a patient with a tracheotomy can exceed £3,000 a night.

Wider impact

The service was extended in November 2023 to include a virtual ward (also known as hospital at home) for anyone whose condition was acquired in childhood. People receive the tests and treatments they need, when they need them but in their home or care home. Just as if they were in hospital, people are reviewed daily and their recovery is monitored by clinical staff.

Members of the team have attended respiratory team meetings and met consultants at the hospital to explain how their service can prevent readmissions.

The team are working to improve their care offer to adults, many of whom are non-verbal. For example, they visit adults even when they are well to help pick up subtle signs of conditions like aspiration pneumonia that carers may not notice. Many of these people are not under the care of a consultant and a GP is unlikely to see the patient often enough to pick up early signs. This shifts the culture from treatment to prevention.

The team has also been trained to have ReSPECT conversations with their patients, and their family or carers, to ensure the person’s wishes are considered should emergency care be required.

They presented their work at a national learning disability physiotherapy conference in autumn 2024 and have shared what they have learned with other NHS trusts.

Their advice for those interested in establishing a similar pathway is:

• invite clinicians, nursing leads or ICS staff to visit patients (with their permission) in their home with you. Seeing first-hand how the service helps people and their families will have more impact than any networking
• ensure you provide self-care training for parents and carers, as the best scenario is that the unwell person remains with someone who knows them and their routine best
• find allies among paediatricians and members of your ICS to support and endorse your work to their colleagues
• create a business case for establishing the service

Contact

The team is happy to be contacted for more information about their service: This email address is being protected from spambots. You need JavaScript enabled to view it.

Resources

• The Lincs Complex Needs Rapid Respiratory Service: This website includes Chloe’s story, a video showing how the physiotherapy team cared for her
• The Association of Paediatric Chartered Physiotherapists (APCP):
  • Evaluation of the 12 month pilot in the Lincs children's service
  • A guide to commissioning and evaluation – this includes a new risk identification matrix (2024) for children and young people with neurological impairment. It is hoped that healthcare professionals can use this to improve care, manage co-morbidities and establish new services
• LeDeR resource bank – respiratory resources on aspiration pneumonia, vaccinations, sleep apnoea and more
  

Improving respiratory health and preventing hospital admissions – Bradford

Community acquired pneumonia (CAP; from breathing in bacteria or viruses) and aspiration pneumonia (from inhaling food, fluid or saliva) are more common in people with a learning disability than the general population. [*1]

CAP is a major cause of death and increases the risk of hospital admission in people with a learning disability. Hospital stays can often be long, discharge from hospital complex and people are more likely to be readmitted. [*2]

People from minority ethnic groups can also experience significant barriers in accessing healthcare and much poorer health outcomes. [*3] In Bradford, the average age at death for a person with a learning disability identified as White British was 56 in 2022 but just 26 for someone from an ethnic minority group.

Local LeDeR data found that respiratory disease was associated with 70% of these deaths.

1 British Thoracic Society (March 2023). Statements on community acquired pneumonia and aspiration pneumonia (March 2023)

2 Khurana H, Mckie A, De’vries C, Chhabra H (Nov 2023). Audit of readmissions in patients with learning disabilities. Future Healthcare Journal

3 NHS Race and Health Observatory and University of Central Lancashire (July 2023). We deserve better: Ethnic minorities with a learning disability and access to healthcare

The challenge

The Learning Disabilities team at Bradford District Care NHS Foundation Trust recognised the need to shift from responding when people become unwell to a more preventative, proactive model of care for respiratory health. They also recognised the need for accessible, fully translatable educational resources.

Their considerations were:

• multidisciplinary team (MDT) working – an MDT approach is essential because a range of different health conditions can contribute to the complex risk factors for respiratory health

• complex medical needs – the trust supports people with complex needs; some depend on interventions such as CPAP, cough assist or suction machines just to remain well

• language barriers – English is not the first language of many of the families the team supports
• raising skills levels – many families/carers provide support with chest physiotherapy, CPAP, cough assist and suction, as well as safe eating and drinking and good mouth care, or employ personal assistants directly or with personal health budgets. Training and resources can help them all
• digital services – a ‘digital hub’ for all respiratory care information would link people with respiratory risk and their carers to the local resources and services they need. Information needs to be accessible, including translations
• financial impact – the team’s conservative estimate (based on data from The King’s Fund 2021) for the cost of a hospital admission due to CAP is £7,000, based on a 7-day stay; many stays are longer. The average cost [*4] of a person attending A&E by ambulance in 2022/23 was £417 and an ambulance call out (with no A&E visit) £287

The response

The team received funding from the trust to create a new multidisciplinary respiratory pathway to reduce chest infections requiring antibiotics and unplanned hospital admissions. They did this with insights from people with lived experience, family members/carers and health colleagues across all disciplines that can have a role in respiratory health.

The pathway is used to identify people with a learning disability who are at the highest risk of respiratory illness, ultimately preventing hospital admissions, improving quality of life, reducing avoidable deaths and reducing costs to the NHS.

It considers everything that can affect a person’s chest health and increase their risk of respiratory illness and uses a simple scoring system to assess their level of risk. It asks, for example: Does the person’s body shape affect their breathing or digestion? Do they cough when eating or drinking? Do they have epilepsy? Do they have issues with oral hygiene? The scoring system is regularly reviewed and reflects guidance from the National Institute for Health and Care Excellence (NICE) and the British Thoracic Society on aspiration pneumonia and community acquired pneumonia.

The team produce a personalised Keeping my Chest Healthy care plan for anyone identified as at risk of respiratory illness. They are piloting a digital version of this care plan.

This plan describes everything the person and their support network can do to reduce this risk, the soft signs of deterioration and the person’s baseline readings to help carers recognise promptly when a person is becoming unwell. It also gives actions people can take if they are becoming unwell and information for staff if the person requires hospital admission. If a person’s health needs change, the team update the plan.

The team worked with the University of Bradford’s Digital Media Working Academy to develop the Keeping My Chest Healthy digital hub, which works on desktops and smartphones. Care plans have a scannable QR code that links to the digital hub, where users can find fully translatable co-produced information about the risk factors for respiratory disease. Short videos explain the interventions that may be listed in a care plan. For example, if a person’s plan suggests they need support to clear their chest, it will signpost them or their carers to videos showing breathing activities or how to carry out chest physiotherapy. The use of VirtTuri avatars in the videos improves accessibility. These artificial intelligence (AI) avatars can speak over 120 languages, and those used currently can speak in English and Urdu, to reflect the community’s main languages. The videos are also useful for people who are not good readers.

The hub supports professionals too, with information on health checks, healthy weight, smoking and the risks around chest health. It also includes guides on taking baseline readings, using a pulse oximeter and recognising sepsis.

From early 2025 the hub will include CPD accredited training modules demonstrating each stage of the pathway, including the scoring and other clinical tools.

Outcomes

By December 2024, over 200 people with a learning disability in Bradford had a Keeping my Chest Healthy care plan. In a random sample of these, over 12 months chest infections treated with antibiotics fell by 54% and hospital admissions for a respiratory condition by 70%.

In the 12 months before one young man had a respiratory care plan, he had 4 chest infections requiring antibiotics and 5 hospital admissions for aspiration pneumonia. At one point his father was advised he was unlikely to recover. In the year after the man had a care plan, he has not had a chest infection or aspiration pneumonia.

Between December 2023 and September 2024, the Keeping My Chest Healthy digital hub had 3,236 unique users, 12,763 page views, 37,674 interactions and 100% positive feedback.

Families and carers who use the hub report feeling 40% more confident that they are providing the right respiratory support. One family member said how much they valued the videos in Urdu as hospital staff had only shown those in their family who spoke English how to use a suction machine.

Wider impact

The team shared this pathway with primary care staff who complete AHCs, asking them to refer anyone they identify at greater risk of developing respiratory disease. They also shared it with acute trusts and are working with other trusts to pilot the pathway.

Any individual who has an acute hospital admission for a respiratory condition is now considered for a Keeping My Chest Healthy plan to improve their chest health and prevent readmission.

In September 2024 this project was recognised as the learning disability initiative of the year at the Health Service Journal patient safety awards.

Contact

For more information please contact: This email address is being protected from spambots. You need JavaScript enabled to view it.

Resources

• Keeping My Chest Healthy
• RightCare: Learning disability and aspiration pneumonia scenario
• British Thoracic Society: Diagnosis and management of aspiration pneumonia and Diagnosis and management of CAP in people with a learning disability
• NHS England: Continuous positive airway pressure (CPAP) resources
• Royal College of Speech and Language Therapists: Dysphagia guidelines
• NICE: Pneumonia in adults – diagnosis and management
• LeDeR resource bank

Reducing health inequalities – Greater Manchester

The 2023 LeDeR Report found that 39% of reported deaths of people with a learning disability were the result of conditions that can largely be prevented or effectively treated. The percentage of avoidable deaths for the general population was 22% (in 2022).

The top 3 causes of avoidable death for people with a learning disability in 2023 were flu and pneumonia, digestive cancers and ischaemic heart diseases.

Greater Manchester Integrated Care Partnership is working to address health inequalities for people with a learning disability across its 10 localities and almost 3 million population.

The challenge

In 2021/22 only 66% of people with a learning disability in Greater Manchester had an annual health check (AHC). Some did not because they were not on the learning disability register, but some who were did not have the support they needed to engage with services. Isolated and homeless people in particular need additional support.

GP practices may struggle to prioritise AHCs for people with a learning disability because of capacity challenges, particularly if they do not understand the wider benefits.

The response

The 10 localities in Greater Manchester are tackling the above challenges together through locality ‘Good Health’ groups. These meet regularly and bring together population health colleagues who work with community learning disability teams, local authorities and voluntary, community and social enterprise sector representatives.

By pooling funding the localities have recruited additional primary care assistant practitioners (PCAPs) and learning disability care co-ordinators (LDCCs) to help patients access AHCs, vaccinations and cancer screening. For example:

• Pennine Care NHS Foundation Trust has employed 5 PCAPs in its community learning disability teams; they have a focus on underserved communities and those not engaging with services
• in Bury, the GP Federation pooled Additional Roles Reimbursement Scheme (ARRS) funding to employ 4 LDCCs, one covering each primary care network

There are now over 20 LDCCs across the 10 localities.

Initiatives led by primary care staff, community learning disability teams and the health inequality leads across Greater Manchester to increase AHC uptake include:

• working with local SEND (Special Educational Needs and Disability) designated clinical officers to add a prompt to the Education Health and Care Plan (legal document describing the special educational needs of a child or young person under 25) that the child or young person should be added to the GP learning disability register
• events and educational sessions in specialist high schools/colleges
• training for GPs working in the most deprived localities on offering AHCs
• education sessions at events with ethnic minority groups
• a targeted monthly communication to primary care

Initiatives to increase screening accessibility include:

• Bowel screening: in a pilot in Bury, bowel cancer screening improvement leads worked with the North West Screening Hub, primary care staff, community learning disability teams and PCAPs to support people with a learning disability who were invited for screening or a colonoscopy, and with social care providers to support people in their care to use a FIT kit. They provided easy read information and desensitisation techniques where needed. This pilot was rolled out across Greater Manchester in early 2024 and bowel screening uptake in the learning disability population is now over 75%.
• Targeted lung health check (THLC): people aged between 55 and 74 I who are or were smokers are eligible for a TLHC. Reasonable adjustments are available in this new pathway for people with a learning disability and their invitation to the mobile screening vehicle includes links to easy reads. The health inequalities team is providing bespoke learning disability and autism awareness training to TLHC staff.
• Cancer: the Learning Disability and Autism Cancer Network works to increase screening and accessibility and has representatives from learning disability and cancer services across Greater Manchester. It is developing a reasonably adjusted cervical screening pathway and cancer awareness session for people with a learning disability. The network is also leading the development of a new breast screening charter – every breast screening team in Greater Manchester will pledge to make reasonable adjustments for people with a learning disability: for example, visits to the unit beforehand, longer appointments and having support.

The outcomes

Improved access, experience and outcomes for people with a learning disability are already being seen.

This is illustrated by a 40-year-old man on the GP learning disability register who is homeless and dependent on drugs and alcohol. As he had not been seen in primary care for over 4 years and he was referred to the community learning disability team and assigned a PCAP. The PCAP worked with the primary care team and the nurse from Turning Point (a drug and alcohol service) to engage him, assess his health and provide ongoing support. The PCAP even met him after an appointment at the Court of Protection where he was encouraged to stay for his first flu vaccination.

Another person who struggled with drug and alcohol use and literacy difficulties was referred to the PCAP service having declined 3 invitations for an AHC. The PCAP’s visits were invaluable in understanding the person’s needs and the support and reasonable adjustments they needed, as well as in building rapport. This person has since attended AHCs and other appointments.

AHC uptake in Greater Manchester increased from 66% in 2021/22 to 81.3% in 2023/24. Stockport East & South PCN had a 99% completion rate and the Bury locality achieved a 34.1% increase over the 2 years.

The health inequalities lead for Greater Manchester suggests that anyone wanting to recruit more support roles to tackle health inequalities works with their ICB’s personalised care team to raise awareness of the impact these roles can have, as well as the ARRS funding available.

Contact

For more information on any of the initiatives, please contact: This email address is being protected from spambots. You need JavaScript enabled to view it. 

Resources

• NHS e-learning for health: Caring for people with a learning disability - Health inequalities and social deprivation for medical professionals  - Greater Manchester learning disability strategy
• The Greater Manchester Cancer Podcast:  - This podcast presented by Steve Bland of the BBC podcast ‘You, Me and the Big C’, includes an episode exploring health inequalities in the cancer system
• LeDeR resource bank –respiratory resources on tackling health inequalities and more

Managing medication and constipation risk – Surrey

In 2023, a University of Central Lancashire and King’s College London report identified that almost half of a sample of96 people who had a LeDeR review in 2021 had constipation, and over half of had been prescribed medications that can cause constipation – on average at least 2: opiates, antipsychotics, antidepressants, antiepileptics, antispasmodics and antimuscarinics.

While constipation was not given as a cause of death on any of the death certificates, 30% of those with constipation did have conditions on their death certificate that are associated with or caused by constipation (for example, bowel cancer, sigmoid volvulus, sigmoid perforation, bowel obstruction).

Few people in the sample had been taught about what normal bowel habits are, yet laxative prescriptions for constipation were also very common. Laxatives should never substitute for a healthy diet, adequate hydration and exercise.

Medication reviews should be delivered as part of a person’s annual health check (AHC) to ensure they are receiving the right medication for their needs, and every AHC should be supported with a health action plan for the individual.

The challenge

Local LeDeR reviews in Surrey Heartlands ICS identified concerns about medication reviews, specifically in relation to the management of polypharmacy and constipation. One review for a person with a history of constipation identified a lack of care planning, monitoring of bowel habits and escalation of concerns following a medication review.

The quality of completed AHCs and medication reviews is not measured.

The response

The local LeDeR co-ordinator asked the Surrey and Borders Partnership Trust pharmacy team to audit prescribing and completed medication reviews and AHCs for people with a learning disability on polypharmacy and who had, or were at risk of, constipation.

With the regional LeDeR co-ordinator and Surrey Heartland’s Medicines Safety Officer, the project team worked with GP practices to identify people who:

• had a learning disability aged 14 and over and on the GP register
• had a diagnosis of constipation recorded on EMIS
• were prescribed medicines for constipation (laxatives)
• were at risk of constipation from prescribed medications medications (opiates, anti-psychotics, anti-depressants, anti-epileptics, antimuscarinics and antispasmodics)
• were prescribed 10 or more medicines (polypharmacy)

They did this by running EMIS searches, the system holding electronic patient records. In the 7 participating GP practices (serving a registered population of about 70,000), this identified 359 patients who met one or more of the following criteria:

• 316 had received an AHC in the last 18 months (86.8%)
• 26 had a constipation diagnosis recorded on EMIS (12.6%)
• 128 were prescribed medicines for constipation (laxatives; 34.5%)
• 220 were at risk of constipation from prescribed medicines (61.6%)
• 100 were prescribed 10 or more medicines (polypharmacy; 25.3%)

A detailed ‘thematic’ review of 156 randomly selected records identified good practices around AHCs and medication reviews in some GP practices, such as:

• a nurse performing an AHC followed by the practice pharmacist conducting a medication review
• personalised AHC content, not a ‘tick box’ approach
• good quality and individualised constipation care plans

but also inconsistencies in others such as:

• unclear or inconsistent documentation of both care planning and AHC outcomes
• for people with a history of constipation, high-risk prescribing not always addressed
• variability in the involvement of a carer or family member
• variability in how AHCs were documented and the templates used
• inadequate collaboration across care settings, for example shared records
• discrepancies between number of constipation diagnoses recorded and number of people treated for constipation

The outcome

The evaluation demonstrated that completion rate is too crude an AHC performance measure as it gives no indication of the quality of AHCs and medication reviews.

• The pharmacy team recommended the following actions to improve health outcomes:
• constipation care planning with high-risk populations, for example people with a history of chronic constipation, complications, antipsychotic polypharmacy
• review medicines that cause constipation
• implement the STOMP and STAMP principles (to stop inappropriate prescribing of psychotropic medications)
• a standardised template for AHCs
• greater collaboration across care settings, for example sharing records
• improved documentation of, for example, AHCs and constipation diagnoses

While the audit was not intended to be interventional, the pharmacy team did escalate their clinical concerns regarding 2 at-risk patients.

The team shared their findings and recommendations with the GP practices that took part, the Learning Disability Quality Assurance Group and non-medical prescribers’ group at Surrey and Borders Partnership Trust, as well as widely across the system, including with the Surrey Heartlands Learning Disability Integrated Partnership Board and Patient Safety Group. They ran a ‘lunch and learn’ session for primary care staff (GPs, pharmacists and advanced specialist nurses) across Surrey Heartlands.

The team is working with local commissioners to embed their recommendations concerning polypharmacy and constipation. They are also making a system-wide case for a specialist pharmacist for learning disability role in the trust who can advise primary care staff on reviewing their prescribing for people with a learning disability. This could help those GPs who are hesitant to do so because they consider this a specialist area.

The team have also used NHS England funding to design and deliver a training package for primary care on conducting structured medication reviews. In July 2024, 40 clinicians working in PCNs attended the course and learned how to identify the red flags for patients at risk of constipation, engage specialist help when needed and deprescribe inappropriately prescribed psychotropics, and how primary care learning disability liaison nurses can also help with this process.

For other areas wanting to conduct a review of medication, AHCs and management of constipation, the team suggests:

• involve people with lived experience in service design and evaluation
• ask key people across your network for help from the outset, starting with the ICB medicines management team
• emphasise to busy GPs the value of an audit and training to improve the lives of those with a learning disability
• primary care clinicians ask ‘why?’ when someone does not attend their AHC

Contact

For more information please contact: This email address is being protected from spambots. You need JavaScript enabled to view it.

Resources

• NHS England: Constipation resources for people with a learning disability
• NHS England: Constipation campaign toolkit
• LeDeR resource bank – constipation guidance and resources
• NHS England: STOMP and STAMP website
• NHS England: Poo Matters – resources for healthcare professionals

Ensuring cardiopulmonary resuscitation (CPR) decisions for people with a learning disability are made well – South West

The challenge

The NHS is clear that ‘learning disability’ and ‘Down’s syndrome’ should never be recorded as a reason for do not attempt cardiopulmonary resuscitation (DNACPR) decisions, or used to describe a person’s immediate or direct cause of death.

LeDeR reviews continue to highlight issues for people with a learning disability and their families around informed choices for end of life care and decisions around CPR.

The response

In 2023 the South West region audited patient notes for people with a learning disability to understand how treatment was escalated and CPR decisions made for this group. Each of the region’s 7 ICSs reviewed the records of up to 100 living patients with a learning disability in their area. The NHS England South West LeDeR Operational Group acted as the steering group for this audit.

Specifically, the audit considered if appropriate steps are being taken to discuss treatment options with a person and document their wishes in a treatment escalation plan should their health deteriorate, and how CPR decisions documented in hospital records had been made for people with a learning disability. The plan should reflect a person’s values and decisions on treatments, for example ventilation, blood transfusion as well as CPR. All staff treating the person should refer to it and it is reviewed whenever a patient is readmitted to hospital.

ICSs assessed CPR decisions by collating data from patient records. This information was then further considered within structured interviews with key staff.

Auditing hospital records: As some ICSs in the South West use the ReSPECT (Recommended Summary Plan for Emergency Care and Treatment) form developed by the Resuscitation Council UK and others use a local treatment evaluation plan, 2 versions of the audit form were needed. Both forms used a combination of ‘yes/no’ and free text responses.

ICSs were expected to answer a set of core questions agreed by the steering group, but they could add locally applicable questions if they wished. The questions asked:

• whether learning disability was recorded as the sole reason for DNACPR (something that should never happen)
• how the person’s mental capacity had been assessed and documented
• whether the person, their family or advocate were involved in discussions about resuscitation status
• whether the person had an advanced care plan documenting their individual preferences and priorities for care and if this was followed

One ICS used the local audit team to complete the audit forms while the others used ICS staff or staff from acute hospital teams, such as junior medical staff or lead nurses. 6 ICSs referred to patient data in the acute care record, with some including outpatient data; 1 ICS collated data from primary care records.

Interviews: A commissioning support unit conducted semi-structured interviews with 10 core members of acute and community-based teams to probe issues identified by the audit results: advanced care planning; how and when conversations about a person’s wishes might take place; and applying the Mental Capacity Act in CPR planning for people with a learning disability. Those interviewed included a community learning disability nurse, a GP, a palliative care nurse, a safeguarding adults and Mental Capacity Act lead nurse, a palliative care consultant and a chief nursing officer.

The outcome

The South West ICSs audited 589 patient records and found:

• 11% of records with a DNACPR in place for the person gave ‘learning disability’ as a reason for DNACPR alongside other health condition(s); it was recorded as the sole reason in only 1 record
• the Mental Capacity Act was not always applied properly; that is, reasonable adjustments were not always made to assist a person’s decision-making and capacity assessments were not always clearly documented
• 20% of people were involved in discussions about their CPR status
• family or next of kin were involved in 63% of discussions about CPR status
• learning disability acute liaison nurses often acted as the catalyst for communication with family members around CPR decision-making and application of reasonable adjustments in acute settings, in some cases advising that capacity decisions should be changed and helping to ensure that ‘best interest’ processes were followed

These findings suggested the following actions for the region:

• share a single advanced care plan across local health and care systems
• focus on increasing the completion of advanced care plans by people when they are well and with the support of the people who know them best
• trusts’ Mental Capacity Act training should include how to apply reasonable adjustments for people with a learning disability and autistic people
• use of ‘learning disability’ as a sole reason for DNACPR on CPR forms should be explicitly identified as inappropriate, supported by clinical leaders and training
• engage people who know the person well in CPR decisions, particularly where the person has a profound and multiple learning disability

EacEach ICS is creating an action plan for system-level improvements based on learning from its own local audit. ICSs will then re-audit to evaluate the impact of their improvement programme, but some changes are already showing an impact:

• Bristol, North Somerset and South Gloucestershire: the CPR plan now states at the top that ‘learning disability’ is not a reason for DNACPR, the Chief Medical Officer has told staff that it is not acceptable and staff training around this has been provided.
• Devon: has increased community access to forms by rolling out an electronic version of the ReSPECT form, and improved form completion by increasing staff training
• Gloucestershire: working with the Resuscitation Council UK and Inclusion Gloucestershire, has produced 2 videos for people with a learning disability about the ReSPECT process: Jenny and John’s stories. It has also co-produced easy read guides and presented to learning disability providers about ReSPECT
• Cornwall: has developed an easy read leaflet about completing treatment escalation plans. Also, Cornwall People First is running ‘speak up’ groups with a counsellor where people with a learning disability can discuss their experiences of death, dying and loss
• Somerset: is piloting an advanced care planning clinic for people with a learning disability and their family/carers. It is also trialling a part-time post in the end of life care education team to train and support staff working with people with a learning disability. The LeDeR team commissioned the video We need to talk about death

Contact:

For more information about this audit, please contact: This email address is being protected from spambots. You need JavaScript enabled to view it. 

Resources

• NHS England: resources to ensure equality in palliative care
• NHS England: Universal principles for advance care planning (an easy read version is available)
• East and North Hertfordshire NHS Trust: Treatment escalation planning – information for patients
• LeDeR resource bank – end of life care resources and guidance