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Written by Jonathan Beebee, PBS4 CEO and Professional Lead in Learning Disabilities at the Royal College of Nursing.

Read the full report here: 

Today the Care Quality Commission published its report “Who I am Matters” which reflects the experiences of some people with learning disabilities and autistic people in accessing acute healthcare. The report highlights that it is “a commentary on what people told us about their experiences of care in acute hospitals, at a specific point in time. It is intended to help start a conversation about the quality of care in acute hospitals and add to the wider conversation around care for people with a learning disability and autistic people”. Raising this conversation is greatly appreciated and I hope that this report is a conduit for further research to generate quantitative data to add to this important qualitative discussion piece.

I fully support the contents of this report, and I agree with the majority of its findings. I also value the experiences that people have shared. This is their experience and I wholeheartedly respect their perspective, so if any views expressed here appear to be critical of people’s experiences this is not my intention. I hope this commentary provides a platform for hearing more voices and experiences of people with learning disabilities about their experiences of accessing healthcare. 

The report is right to highlight the social model of disability. Society is what creates disability by not being accessible and expecting everyone to fit into “typical” expectations of living. We must endeavour to remove barriers for all diversities, creating equity for all. However, the lower age of mortality and greater health needs of people with learning disabilities are more complex than society creating barriers and hospitals not being accessible. We know from the LeDeR reports that 97% of people with learning disabilities have at least one other long-term condition, with an average of four co-existing long-term conditions. We know 94% of people with learning disabilities are taking at least one prescribed medication, with polypharmacy being very common.

Most learning disabilities occur as a result of neurological damage and this explains 33% of people with learning disabilities having epilepsy, with the incidence increasing the more significant the learning disability. Many learning disabilities are related to genetic conditions and these genetic conditions also create further associated health problems. People with learning disabilities often present health needs atypically which can make them harder to identify. 80% of people with learning disabilities also have a communication need, and many of these needs go beyond the support of Easier Read information. It is the complex interplay of multiple health needs, condition/syndrome-related health needs, complex communication needs, how the person interacts with their environment, their social supports, and society in general that needs to be understood if people with learning disabilities are to genuinely have access to equality in health and social care.

The report inaccurately describes learning disability nurses as “specialist staff”. Qualifying as a learning disability nurse is an entry point at registration as a nurse, one of the four fields of nursing, and not a specialism in itself. In comparison, mental health nurses would not be described as “specialist staff”. In some ways, there is a risk that services could be evolving in a way that does not give parity of esteem to learning disabilities that society gives to mental health needs. Mental health is equally understood as a strand of diversity and a protected characteristic. It is a given that no one should be discriminated against because of their mental health and all health and social care services should understand mental health needs, but this does not negate the need for mental health nurses and mental health services. When someone has a severe and enduring mental illness, they have the right to be able to access skilled support that has a deeper understanding of how to support people with these needs.

Reasonable adjustments, better understanding and acceptance are certainly needed and will go a long way, but this does not deny people the right to access skilled professionals who are specifically skilled in meeting their needs. Most of this report argues for better access to “specialist staff” and better consistency. There is perhaps a risk of an underlying message suggesting all NHS employees having better skills would avoid the need for learning disability nurses. I would suggest that expecting all health and social care staff to understand all the complexities and communication needs of all people with learning disabilities would be like expecting all GP Nurses to be able to speak every international language. Using the same comparison, increasing the availability of learning disability nurses would be similar to employing a multi-linguist. Learning Disability Nurses are often the Reasonable Adjustment, and not providing access to skilled nurses should be seen as discriminatory and disabling.

In 1995 the NHS in England employed 12,500 learning disability nurses. By 2011 this had reduced to around 6,000. Today, we understand there are about 3,000 learning disability nurses employed by the NHS in England. Most of this change has been due to huge shifts in how support for people with learning disabilities is provided, primarily moving from it being viewed as a health need/medical model, to being seen as a social care need/social model. In a drive to cut services that are perceived as no longer contemporary, there has not been adequate attention to what support people with learning disabilities need, nor where the skills of learning disability nurses are most needed. This has led to a blurred identity for the profession and a lack of clarity of where health and social care value the learning disability nurses’ skills. Subsequently, this creates challenges in the recruitment and retention of learning disability nurses, which ultimately leads to a shortage of availability of services that can effectively meet the needs of people with learning disabilities.

Access to learning disability nurses is inconsistent across the UK. Mandatory training for all health and social care staff will undoubtedly improve the experiences of people with learning disabilities and the skills of all health and social care staff in supporting them. Yet still, a short course in learning disability awareness will not replace the skills, knowledge, and understanding that learning disability nurses have in completing 3 years of pre-registration training and dedicated experience in the lives, experiences, and health needs of people with learning disabilities. The quality of understanding and support a learning disability nurse can provide is essential for true equity of access and learning disability nurses should be viewed as the essential reasonable adjustment.

A commitment to training for all health and social care staff and a call for better reasonable adjustments in all health care settings will undoubtedly improve the experiences for many people with learning disabilities when accessing acute care. However, for a significant number of people having access to the skills of a learning disability nurse will be essential, and this support is needed beyond the acute hospital setting.

LeDeR Mortality Review: