How a health risk register can improve the lives of people with learning disabilities

A health risk register created by Learning Disability Network London is helping to improve the health, wellbeing, and lives of people with learning disabilities.

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For most people, illness or health-related issues can be frightening. For individuals with learning disabilities, this anxiety is often compounded by a lack of understanding of their condition and by concerns about how they may be treated and supported by health and social care professionals.

Understanding someone’s medical history, their response to treatments, and their personal situation is therefore vital to providing good care and support.

To ensure this quality of care and support, health and social care professionals must see the person first and their disability second.¹ This means taking time to listen to the person, as well as to their family and supporters.

This article explores how Learning Disability Network London (LDN London) is implementing a health risk register across its social care support services for people with learning disabilities. This is to ensure better-tailored outcomes for individuals that improve their quality of life, health, and wellbeing.

What is LDN London?

LDN London is a charity operating across seven London boroughs, supporting over 200 people with learning disabilities, more than 400 families, and 130 children with special educational needs and disabilities (SEND).

The organisation provides a range of support, from a few hours a week to round-the-clock, and believes that every person with a learning disability has the right to stay healthy, be safe, live well, and have access to the same opportunities as everyone else. The overarching focus is on enabling individuals to lead good lives and receive the quality of service and support they need.

A learning disability involves significantly reduced intellectual and adaptive functioning that begins before adulthood. In England, around 1.3 million people live with a learning disability,² often accompanied by complex health conditions.

These individuals face striking health disparities: 42% of their deaths in 2022–2023 were avoidable,² and on average, people with a learning disability die 20 years earlier than the general population, avoidably, due to health and care failings.

From the Covid-19 pandemic to now

The Covid-19 pandemic illustrated the importance of the GP Learning Disability Register. At that time, only 150,000 people with a learning disability were registered on the GP register, despite there being over 1.2 million people with a learning disability in this country. This was approximately 2% of the overall population. As a result, the Covid-19 vaccine was available only to those individuals on the register.

Research shows that being on a GP register and having an alert on your records in local hospitals will significantly improve the health and well-being of people with a learning disability.³ In addition, being on the register ensures people are considered for screening in a timely manner and receive an annual health check.

Health profiles

LDN London Strategic plan identified that health inequalities are a fact of life for people with learning disabilities who receive support from the organisation.

Having an understanding of a person’s health profile is vital to supporting them and interpreting their communication when they are unable to explain pain, discomfort, ill health, or low mood. It is always essential to explore what lies behind a person’s communication, sometimes through behaviours, and whether any physical or mental health issues are impacting them. This ensures that staff are tuning into the person and tailoring how they seem to what is actually happening.

Without doing this, serious illnesses can be missed, leading to avoidable and preventable deaths. It also addresses diagnostic overshadowing.

The health risk register and diagnostic overshadowing

Diagnostic overshadowing occurs when a health or care professional makes the assumption that a person with learning disabilities’ behaviour is a part of their disability without exploring other factors, such as biological determinants.⁴ Diagnostic overshadowing is particularly pertinent when new behaviours develop, or existing ones increase.

Following the challenges of the pandemic, an LDN London health strategy was created. The focus and aims were to embed health literacy, advocacy, and digital innovation into its day-to-day practice, to reduce avoidable health inequalities for people with learning disabilities, with the ongoing focus on bridging the gap between health and social care.

The creation of the health risk register was instrumental in achieving these plans. It has since led to measurable improvements in screening uptake, personalised health monitoring, and appropriate escalation. It has also reduced hospital admissions and enhanced staff competencies and capabilities.

The approach prioritises prevention, holistic wellbeing, personalised care, and partnership with the NHS and community services to ensure the people it supports stay healthy and live well, with inclusive access to health systems, assistive health technology, and national initiatives.

Identifying health risk

The register was started in 2024 as a health database. The main goal was to improve the health outcomes of the people LDN London supports. The initial ideas were the development and adaptation of screening tools to identify and better manage health-related risks at the point of referral and throughout people’s journeys with them.

It is a digital tool that helps track individual health needs, identify risks early, and guide bespoke staff training and personalised support planning. The register was created to identify and assess health risks early (such as epilepsy, dysphagia, hypertension, and diabetes) and to monitor trends across services to inform better decision-making and planning for future strategies.

Health risk register and screening rates

This register has led to improved screening rates that are significantly ahead of national and learning disability statistics for breast and cervical screening and now exceed national averages. For example:

• 78.5% of women had breast screening (the national average for 2019/20 was 22%).
• 49% had cervical screening (national average for 2019/20 was 13%).⁵
• There were fewer hospital admissions for UTIs, and related hospital visits dropped 68% from 2023 to 2024, achieved through education, home testing kits, and follow-up.
• Better skin health due to rigorous proactive monitoring, including use of the Waterlow score and training; reduced hospital admissions for constipation; and the addition of constipation as a hospital admission to its “Never Events” policy.
•  98% of the people in its supported living services have signed up for the GP learning disability register.
• GP registration and hospital passports implementation improve health experiences and outcomes. LDN London can use the register to ensure that 100% of people who use its services have this. Prior to the register, this was a paper-based exercise, which made it difficult to ensure accurately who had or had not had a hospital passport.

Everything highlighted above has resulted in enhanced staff confidence in assessing health risk and managing health conditions, understanding changes, responding to changes in health status, and advocating for people’s needs and requirements in a timely manner.

The operations and quality team find the health register to be a powerful tool and said:

‘The register has helped me to see where we need to target training and to source the appropriate level for a specific location.

“It has also supported me when we have had an incident, such as a near miss with choking. We have looked at the risk register and targeted communication and actions to those people with dysphagia/pica for reviews of SALT guidelines and support records as a learning review process.”

This illustrates the significant impact the register has and continues to have on those using the service and those working in it.

Health digital register and long-term planning

A total of 245 people are recorded on the health digital register across all London boroughs where LDN London delivers supported living, respite, and outreach services, with ages ranging from 20 to 96. Using the health risk register data, it was established that 32% of the people it supports are aged 51 to 65 years, prompting consideration of the implications for long-term health planning and support needs.

It identified 34 women aged 36-50 years (13.8%); this indicates that menopause awareness was a significant area of under-representation in previous health surveys. 8 (3.2%) of the people it supports are aged 81–96 years. This is small, but it helps focus on longer lifespans, keeping people healthy in old age, and addressing other issues, such as frailty syndrome, falls prevention, keeping people active, skin integrity, healthy eating, and malnutrition prevention.

Epilepsy and learning disabilities

The health conditions data gathered illustrate that epilepsy is among the most frequently identified conditions, affecting 49 (20%) people in LDN London services. Its prevalence indicates a significant need for professionals’ care plans, staff training, and assistive technologies to support people effectively. Many will need emergency medication, which requires additional training.

Epilepsy deaths have also been highlighted as a serious concern in the Learning Disabilities Mortality Review (LeDeR), which investigates deaths in people with learning disabilities. In the most recent report, epilepsy was the second most frequently reported potentially treatable cause of death.⁶

It is suspected that approximately 50% of epilepsy-related deaths are attributed to sudden unexpected death in epilepsy (SUDEP), and over half of these could have been prevented.⁷ This demonstrates why it is so important for LDN London and all who support people with a learning disability to focus on this health concern.

Dysphagia and learning disabilities

Dysphagia affects 20 (8.9%) of the people it supports, indicating a significant need for staff training and awareness of early identification of changes in someone’s ability to swallow. Early intervention by Speech and Language Therapists (SALT) is critical for preventing choking and aspiration pneumonia.

Adverse outcomes resulting from dysphagia may be more likely in people with learning disabilities who are unable to verbally communicate their dysphagia-related experiences, as they are less likely to receive the support they need to eat and drink safely.⁸

Hypertension and learning disabilities

The prevalence of hypertension is 15 (6.1%) people, highlighting the need for increased staff awareness, proactive discussions with GPs about individuals’ baseline measures, improved monitoring and escalation processes, and the development of personalised health support plans. This should be complemented by wider proactive support to help people make positive lifestyle changes.

Hypercholesterolemia and diabetes

Hypercholesterolemia and diabetes data align with the LeDeR reviews, showing a higher number of people dying of cardiovascular disease. LDN London works collaboratively with the Camden learning disability team on an obesity project to promote healthier lifestyles, including better eating and more exercise.

Partnering with the LDN Eats team led them to address these issues and explore food swaps to encourage healthier food choices, as people with a learning disability are also more likely to be admitted to hospital for diabetes-related conditions.⁶

Although the prevalence of diabetes in people with a learning disability is not known, recent data indicate it is around 10% – nearly double the rate of the general population for both type 1 and type 2 diabetes. Further, there are also higher rates of obesity seen in people with a learning disability compared to those without, which is a risk factor for type 2 diabetes.⁶

Health risk register: impact and learning

As a result of employing the health risk register system, the organisation has been able to:

• Rethink how to assess support needs for complex health conditions and how to develop personalised support plans, monitoring and escalation for people we support.
• Launch Significant 7+ scheme: This tool was implemented in partnership with Camden learning disabilities services.⁹ This has become an embedded and valuable tool for the support staff on a day-to-day basis. It has equipped staff with the awareness, knowledge, and skills to identify early deterioration and access the best available support, including rapid response teams.
• Sepsis and frailty awareness have proven invaluable for identifying early deterioration, resourcing clinical input in a timely manner, and reducing the number of hospital admissions/ preventing prolonged hospital admissions.
• Increase health advocacy by ensuring that people receive the best possible health and medical care and are empowered to consider all treatment options, including surgical options, regardless of their disability. Using reasonable adjustments and accessible formats has proven essential components in planning hospital investigations and interventions, as well as in supporting treatment decision making and successful hospital discharge planning.
• Increase updates on vaccinations: proactive requests made to GPs to assess people’s eligibility for pneumococcal, shingles, flu, and other vaccinations.
• Target resources: Awareness sessions for staff, families, and the people the service supports that address high-prevalence and high-risk conditions (e.g., diabetes, heart disease, stroke, cancer screening). As well as access to medical equipment such as blood pressure monitors, oxygen monitors, and defibrillators for high-risk individuals.
• Contribute: The risk register gave LDN London confidence to support the London Ambulance in a survey of people’s experiences using their service to help understand the range of needs across LDN London and within geographic clusters.

Supporting social care via the health risk register

During the past years, LDN London linked its health risk register data to the Digital Social Care Record (Nourish), which now enables personalised support plans with a strong focus on health and wellbeing outcomes such as:

• Real-time alerts for critical tasks like medication, constipation and pressure ulcer management to ensure timely actions.
• Integrated tools like MUST score, Waterlow and Abbey Pain-Scale to detect and manage risks such as malnutrition, pressure ulcers, and unmanaged pain.
• Early detection tools such as Significant 7+ for trend analysis and proactive care.
• Secure sharing of health data within Emergency Health Packs (generated by Nourish) for hospital admissions or with authorised responders.
• People using technology devices such as Libra 2 for diabetes monitoring – checking blood sugar levels without using needles.

Health risk register and future challenge

These are challenges that LDN London and social and health care providers will face going forward. These include:

• Mental capacity assessment in the context of clinical decisions, ensuring the provision of information to the person in a way that supports informed decisions.
• Delegated health activities: there is an expressed need for enhanced partnership working with all local ICBs; however, a lack of a framework for delegation across various NHS trusts remains a significant barrier.
• Inconsistent approach to technology, such as Freestyle Lybra 2 sensors, epilepsy sensors, and fall sensors, despite significant steps forward in telehealth seen at care shows and events. The cost of purchase, ongoing subscriptions, and clinical sign-off are barriers faced in practice.
• Variety of health action plans, annual health checks and the new universal care plans. Each NHS trust/hospital has a different tool; they are all paper-based and change regularly in response to new initiatives. A more digital approach should be the way forward, such as an app or an integrated tool accessible to the person, their family, team, and clinicians, including paramedics, during a crisis.
• Dissolution of NHS England: The UK government’s decision to dissolve NHS England (NHSE) and integrate its functions into the Department of Health and Social Care (DHSC) will have an impact going forward.
• NHS digital Barriers: The supported living model consistently doesn’t integrate with NHS systems, including GP Connect and the capacity tracker, where CQC registration is a condition of access.  

Health risk register and solutions

These are a range of significant solutions, but there will always be other alternatives as the future is ever evolving. These include:

• Building collaborative partnership working with professionals and services, including Skills for Care, exploring a national issue to local challenges with delegated health responsibilities.
• Ensuring through close working with all relevant services to enable successful discharge planning and better follow-up in the community.
• Shifting care from hospitals to Neighbourhood Care Centres and integrated community diagnostics.
• Moving to a health improvement model through focusing on staff training around health awareness, knowledge and appropriate responses to health issues, such as nutrition, physical activity, and mental health resilience, striving to promote lifestyle and behavioural changes instead of escalation/action interventions.  LDN London is viewing the NHS approach in supporting people to be active participants in their own care by ensuring people with complex needs have an agreed universal care plan by 2027- trials in Camden
• Student learning disability nursing placement opportunities from London universities. ^10,11
• Books Beyond Words:  Every story is written by people with living experience and trialled with people with learning disabilities. There are over 70 titles covering health and well-being issues, from epilepsy and diabetes to when mum dies, to cancer, to keeping healthy up above and down below. Picture stories are accessible to everyone, whether or not you can read words. The word-free format enables readers to tell their own stories using their own communication methods.

Measuring future impact

Further development is needed to measure impact in other areas such as service delivery, workforce development, and digital transformation. In addition, there needs to be realistic Key Performance Indicators (KPIs) for preventive support, engagement, and satisfaction, defined through health outcome metrics. This can include a decrease in emergency hospital visits due to chronic conditions, a reduction in preventable conditions like aspiration pneumonia and pressure ulcers, a reduction in UTIs, improved sleep, an average urgent care response time (Sepsis), and community versus hospital intervention.

We are exploring solutions linked to the support-planning digital tool Nourish and RADAR healthcare, as well as the introduction of staff “specialist” roles (staff with health-related expertise, practice skills, and delegated healthcare competencies).

It is vital to ACT

• Assess what is happening to and for the person.
• Consider what is behind what is happening – is there a health problem?
• Take action, DON’T DELAY, get a person’s health checked out.⁴

Having the register set up as it is at LDN London enables the ACT approach and allows services and staff to be proactive in meeting the health needs of those they support.

This form of register should be in existence in every setting that provides social and health care support for people with learning disabilities. If this is done, individuals’ lives, health, and well-being will improve, and they are likely to live fuller, longer lives. Digital tools should reduce barriers to health care and treatment through easy sharing across organisations. This will enable services to know the person and their health and respond accordingly.

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Blair J, Independent Consultant Nurse Intellectual (Learning) Disabilities and Trustee Learning Disability Network London (LDN London), Professor of Learning Disability Nursing and Health and Social Care Engagement Lead Rix Centre University of East London

Crowford M, Assistant CEO- Growth, Innovation and Transformation Learning Disability Network London (LDN London)

Ignat C, Health Lead  Learning Disability Network London (LDN London)

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References

1. Blair J.(2010) ‘Service Quality’ Chapter in Talbot P, Astbury G, Mason T. (2010). Key concepts in Learning Disabilities.London: Sage; 217-224
2. NHS England (2023). Learning Disability Mortality Review (LeDeR) Report.
3. Bloomer A. (2021)  Health inequality and learning disability in a post-pandemic NHS https://www.learningdisabilitytoday.co.uk/topic/health/health-inequality-and-learning-disability-in-a-post-pandemic-nhs/
4. Blair J. (2023). Healthier Futures: Addressing the health inequalities faced by people with a learning disability and their families. Written submission to Select Committee https://committees.parliament.uk/writtenevidence/122329/html/
5. https://digital.nhs.uk/data-and-information/publications/statistical/health-and-care-of-people-with-learning-disabilities/experimental-statistics-2019-to-2020/cancer-screening
6. NHS England (2026). Learning from lives and deaths -People with a learning disability and autistic people (LeDeR). Available at: https://leder.nhs.uk/
7. Bloomer A. (2026) Learning disability and common health problems https://www.learningdisabilitytoday.co.uk/topic/health/learning-disability-and-common-health-problems/
8. NHS Inform. Dysphagia (swallowing problems). Available at: https://www.nhsinform.scot/illnesses-and-conditions/stomach-liver-and-gastrointestinal-tract/dysphagia-swallowing-problems
9. Camden Council (2021). https://www.local.gov.uk/case-studies/camden-avoiding-preventable-physical-health-admissions-people-learning-disabilities
10. Ainsworth T, Ainsworth V, Blair J, et al. (2025). Why we must secure the future of learning disability nurses: Addressing the health inequalities faced by people with a learning disability and their families through strengthening learning disability nursing. https://www.learningdisabilitytoday.co.uk/topic/health/why-we-must-secure-the-future-of-learning-disability-nurses/
11. Nuffield Trust (2023). The workforce crisis in learning disability nursing. Available at: https://www.nuffieldtrust.org.uk