Social Care Nursing Must Be at the Heart of Tackling Health Inequalities for people with learning disabilities and autistic people

Michael Fullerton our Director of Wellbeing, Strategy and Collaboration responds to the latest LeDeR report.

The most recent LeDeR report sadly reiterates what those of us working in the learning disability sector have known for too long: too many people with a learning disability are still dying far too young, and from an unacceptably high proportion of avoidable deaths.

The report shows that in 2023 the average age of death for people with learning disabilities and autism was 19.5 years younger than the general population, and the rate of avoidable deaths was twice as high. Avoidable deaths were predominantly caused by pneumonia, digestive cancers, and heart disease: all conditions that can be prevented, managed, or treated through early intervention, screenings, vaccinations and consistent healthcare monitoring. And yet, access rates for these interventions remain far lower for people with learning disabilities and autistic people.

Initiatives

There are promising initiatives underway to help to address this stark inequality. Alongside our co-production group of lived experience experts Campaign 4 Change I was pleased to be able to feed into the forthcoming acute liaison nurse competency framework, developed by Changing Our Lives for NHS England. Once rolled out, it will provide a much-needed national standard for liaison nurses in hospitals, helping to ensure that people with learning disabilities consistently receive the right adjustments, information, and continuity of care.

At Achieve together, we welcome this focus on consistency and standardisation, as it mirrors what we know from our own practice: the difference specialist knowledge can make to people’s health outcomes is profound.

The Power of Social Care Nursing

As a learning disability nurse myself, I see at Achieve together, and more widely, the impact of a robust nursing team in providing consistent proactive health promotion and planning, and supporting social care teams with enhanced clinical advice.As nurses we work closely and directly with home managers and support teamsensuring they are supported, sufficiently skilled, competent and confident to perform clinical tasks, identify any issues and prioritise health interventions when needed. Through the direct oversight of nurses working in social care, we can support specialist community health teams in delivering excellent Delegated Healthcare Activities, safely and ensuring people can live in their own homes and community.

The roles and importance of learning disability, adult and mental health nurses in social care is largely misunderstood and overlooked. Nurses working directly in social care reduce both the burden on local health services, ensure people have access to flexible health support, teams have access to bespoke training and competency assessment and there are untold economic benefits to health services.

We are also increasingly connecting people with lived experience directly into this work. Achieve together employ Unity, ( a Coproduction Partner) to make sure that when it comes to health promotion and prevention there is a really strong voice of people we support. The Unity Health Group meet regularly with our internal nursing team to collaborate on health prevention, planning and promotion issues, to ensure the voice of people with lived experience is heard and any health promotions are jointly agreed.

Raising the Profile of Social Care Nursing

One of the greatest challenges facing our sector is the low take up of learning disability nursing at university level, with courses experiencing low take-up or ceasing to offer the learning disability branch. This means we are seeing fewer nurses entering the profession at such a crucial moment for the sector.

That is why we are working with national leaders, including Professor Deborah Sturdy OBE at DHSC and colleagues at Skills for Care, to raise the profile of social care nursing. We are feeding into the new nursing strategy consultation to ensure social care voices are heard, and to demonstrate the unique value of learning disability nursing in enhancing wellbeing and reducing NHS pressures.

By creating more capacity and consistency in nursing, we can begin to close the equalities gap highlighted in the LeDeR report. Clinical expertise does not need to be limited to clinical settings – social care nurses can champion preventative health checks, offer clinical support when needed in the comfort of a person’s home, and support with safeguarding rights and mental capacity act implementation. Equally, within clinical services, nurses who have social care expertise and an understanding of how to best support people with learning disabilities and autism can make a huge positive difference to a person’s experience and health outcomes.

Integration and Partnership

Raising the profile of nursing options in social care is only part of the answer, we also need to encourage existing clinical teams to embrace integration and partnership working with social care services.

In Sussex, for example, our collaboration with the local LeDeR review team has been transformative – enabling joined-up thinking on health promotion and prevention, and delivering better outcomes for people. As the NHS faces structural challenges and uncertainty, we will continue to push for a focus on this type of joined-up working in the interests of the people we support.

Awareness and Action

As the LeDeR report shows, too many people with learning disabilities and autism are still dying too young from causes that are preventable. Social care nursing offers an important part of the solution – not in isolation, but in providing a vital link between home, community, and clinical services. By building nursing capacity in social care provision; standardising training and accountability; and raising the profile of the importance of learning disability nursing we can begin to deliver better health outcomes for people with learning disabilities and autistic people. Investment and attention on this is not a luxury, it is a necessity to deliver health equality.