Appendices

Theme

We said…

We Did…

Cancer

We will work with the cancer and cancer screening programmes to ensure that we understand the factors influencing avoidable deaths from cancer including prevention and treatment and determine actions to target awareness raising.

We commissioned our academic partners (KCL et al) to undertake two deep dives to help us to:

1. Understand why people with a learning disability and cancer are more likely to die from an avoidable death

2. Establish if reducing the age at which bowel cancer screening should be lower for people with a learning disability

We commissioned a project in South East London which aims to identify and reduce barriers to cancer screening experienced by people with a learning disability.

We presented cancer related LeDeR findings and best practice in the care of people with a learning disability and cancer to the Faster Diagnosis Cancer Network.

We have collated a range of resources on cancer and screening which may be of use to heath and care professionals supporting people with a learning disability and autistic people in the new LeDeR Resource Bank.

In 2023/24 Round 5 of the cancer improvement collaboratives will focus on people with additional conditions which include people with a learning disability and autistic people – at least 7 of the 11 collaboratives will consider how they can improve cancer services for people with a learning disability or autistic people and their carers.

Constipation

We will deliver a social media campaign around constipation co-produced with people with lived experience and their families and carers and general practice staff.

We commissioned a new national constipation campaign which launched in July 2023 to raise awareness of the risks that constipation can pose to people with a learning disability.

We have also added constipation resources to our new Resource Bank on the LeDeR website.

We produced accessible materials and content for GP practices and websites used by social care staff.

We supported a new app to help clinicians to check if the medication they are prescribing to someone with a learning disability could contribute to constipation.

And our academic partner KCL also led a ‘deep dive’ about constipation. https://www.kcl.ac.uk/research/leder

(See above report for more details of all of the above.)

Circulatory Conditions

We understand the prevalence of circulatory conditions as a cause of death and will work with the CVD programme to take appropriate actions to tackle hypertension and CVD in people with a learning disability.

We are working with the CVDPREVENT team to make data available on the quality of preventative CVD care that people with a learning disability receive on the CVD PREVENT website

We commissioned our academic partners to undertake a deep dive to establish which circulatory diseases are causing the death of people with a learning disability so that we can target resources most effectively. It is anticipated that this will be completed by Summer 2024.

The new LeDeR Resource Bank has a range of CVD resource available.

CPAP

We will develop advice and support on sleep apnoea and continuous positive airway pressure machine usage (CPAP).

We worked with Baywater and Pathways Associates to deliver a project designed to support people with a learning disability and autistic people with sleep apnoea use their CPAP machines as prescribed.

Over the last year Baywater and Pathways Associates have been working with people with a learning disability, autistic people, carers and health professionals to identify the barriers and enablers of using a CPAP machine. Using this information, the team have coproduced a range of resources (in different formats) for people with a learning disability, autistic people, health professionals and paid and unpaid carers. The information is designed to support people overcome the most reported barriers to prescribed use. 

End of Life Care

We will work with the end of life care team, the Care Quality Commission (CQC) and others to further promote the use of appropriate documentation for DNACPR across all services over and above the SNOMED code for DNACPR documentation which is now in place.

We delivered training to CQC inspection teams and staff on end of life care for people with a learning disability and a general session about LeDeR.

We commissioned our academic partners to undertake a deep dive to look at the appropriateness and effectiveness of CPR decisions in people with a learning disability.

We have a range of resources to support with end of life care for people with a learning disability in the new LeDeR Resource Bank.

In March 2023 we sent a letter to clinical leads and chief nurses in ICBs among many others (see more details in above report) to remind them and their systems of the importance of the appropriate use of DNACPR decisions for people with a learning disability and autistic people.

Identifying deterioration in health

We will work with partners to support more carers / staff to be trained in the soft signs of deterioration.

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

We worked with 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 slides are now available on the Skills for Care website.

The NHS Long Term Workforce Plan has committed by 2028/29 to increase training places for learning disability nursing by 46%.

Health and Care Passports

We will consider the findings of the ‘hospital passport digital discovery’ work to understand the best way to ensure that more people with a learning disability and autistic people have hospital passports which are taken account of when accessing health care.

Rather than a ‘hospital passport’ we have worked on a national template for a ‘health and care passport’ – in recognition that hospitals might play only a small part in people’s health and care, with the information contained in ‘hospital’ passports is applicable to primary and community care too.

We have established a Task and Finish group with representatives from ICBs, NHS Trusts and people with lived experience who are creating a template health and care passport with accompanying guidance for ICBs.

The passport template will be based on the About Me standard, from the Professional Records Standards Body. About Me information includes the most important details that a person wants to share with professionals in health and social care, for example, how best to communicate with a person, or clarity on any health issues such as swallowing difficulties.

The PRSB has created national standards for sharing the ‘About Me’ information between health and social care. These standards will enable systems to integrate health and care passports into local patient records while keeping ownership of the passport with the individual.

Respiratory Health

We will roll out quality improvement initiatives for the respiratory projects which will be completed this year around pneumonia to support pathway change and improvement.

We commissioned BTS to deliver new guidelines on the management of pneumonia in people with a learning disability, which were published in March 2023 after extensive consultation. These are:

- Guidance on aspiration pneumonia (AP)

- Guidance on community acquired pneumonia (CAP) in people with a learning disability.

We co-hosted a respiratory webinar for healthcare professionals in March 2023 to present the new BTS statements.

The LeDeR and NHS RightCare teams have worked together to develop a new RightCare scenario focused on learning disability and aspiration pneumonia.

This RightCare scenario was developed to support stakeholders in primary and secondary care to understand how the needs of people with a learning disability can be met. Two fictional stories are told which show the difference between a suboptimal and an optimal care pathway. The scenarios are designed to help all stakeholders in local care systems consider how they can ensure optimal care is delivered.

We commissioned Sussex ICB to support the roll out of quality improvement initiatives using the new BTS guidelines and based on the RightCare scenario. The project used this work to support pathway change and improvement.

We commissioned our academic partners to undertake a deep dive to help understand more about the prevalence of aspiration pneumonia in people with a learning disability.

We also commissioned a deep dive into the facilitators and barriers to uptake of vaccines for respiratory conditions in adults with a learning disability 

Working with our NHS colleagues and academic partners

We will work across the system to ensure that LeDeR reviews are high quality and can support local service improvement; that LeDeR data is accessible to local systems for them to interrogate to support local service improvement, improved commissioning and service provision; and that King’s College London are commissioned to deliver deep dives into specific areas identified to support service improvement for people with a learning disability and autistic people.

We published a new LeDeR data tool in April 2023 which now enables NHS England and ICBs to access the latest data from LeDeR reviews. It will be used to inform national, regional and local service improvement planning by enabling users to have a much more detailed understanding of their populations, causes of death, and the inequalities people face.

We commissioned a ‘train the trainer’ programme to support LeDeR reviewers and local systems to consider ‘intersectionality’ – that is how the different aspects of someone’s identity such as race, culture and religion, can overlap – or ‘intersect’ – and significantly increase health inequalities in the quality of care and support provided to the person during their life. (See above report for more details).

KCL have produced a deep dive comparing inpatient care and the use of restrictive practices for autistic children and young people, and those with a learning disability, in England, Scotland, Germany, Canada, and the US. The report is available at https://www.kcl.ac.uk/research/leder.

KCL have also undertaken a deep dive into the onset and care of type 2 diabetes mellitus in people with a learning disability.