My son has a learning disability. It doesn’t have to mean his early death | Lucy Burke

I have little faith in the government’s response to the avoidable deaths of people with learning difficulties

There has been a lot of talk about existential vulnerability recently, but not much of it has addressed the reality of life for people with learning disabilities. The second annual report of the Learning Disability Mortality Review (LeDeR) programme released in May proved that the system is ill-equipped to deal with people with learning disabilities. It indicated that, compared with the general population, they have a significantly reduced life span, the median age of death being 23 years younger for men and 29 years younger for women.

The majority of these early deaths are avoidable, and include respiratory and circulatory problems, and are the consequence of entrenched inequalities in access to healthcare, and appropriate care and support. These findings mean that a young person like my son, Danny, who is 17 and has autism and a learning disability may die before he reaches the age of 50. Imagine how it feels to entertain the possibility of attending your child’s funeral. Sadly, I have met a number of parents who have done this and who have faced the eviscerating experience of attending inquests that detail neglect and significant failings in care.

It has taken this government three months to respond to the review findings. Its report released on Wednesday contains some promising recommendations. However, it only partially addresses the fundamental issue that the review raised, namely how to challenge deeply engrained prejudice and negative attitudes towards the value and quality of life for people with learning disabilities. Recent inquests into the early and avoidable deaths of people with learning disabilities expose a catalogue of failures in understanding and communication with those people and their families; a refusal to listen, to act quickly, or to meet the most basic of needs. The pain of bereaved families has been exacerbated by a defensive attitude on the part of NHS trusts. This includes their endeavour to manage and contain negative publicity at the expense of a properly human response to deaths in their care, and a willingness to subject family members to hostile examination by their legal teams at inquests.

Unsurprisingly, the government response emphasises the importance of training. The word “learning” is used on 136 occasions, although the words “listen” and “listening” do not appear. This is a pity given that a number of premature deaths might have been avoided if medical professionals had listened to and acted upon the concerns of families. Learning from an avoidable death is important but only if it ensures that it does not happen again. I welcome the fact that the report recommends training in the workplace, but I would argue strongly for embedding training into medical and healthcare education at degree level. This training should be developed by self-advocates and families and carers and should be meaningful, addressing fundamental values and prejudice head on. It should also be mandatory and delivered face-to-face.

It is disappointing that the government response says nothing about monitoring, timeframes or any action that might arise from the failure to implement these standards. How will poor performance in relation to these recommendations be determined, reported, recorded and addressed? What will meaningful improvement look like? By what date does government hope to reduce this shameful 23/29 year gap in life expectancy?

Experience tells me that there is a huge gulf between the rhetoric of inclusion, accessibility and equality and its practice. Health inequalities are the product of broader social and economic inequalities and do not originate in the hospital waiting room, although they find their ultimate expression in poor medical care, neglect and premature mortality. The majority of people with learning disabilities are poor and dependent on benefits. They experience high levels of hate crime, abuse and social isolation and they are routinely denied basic choices, opportunities and access to experiences that make life worth living.

These forms of systemic inequality underpin the shameful gap in life expectancy that the review revealed. Until we recognise that austerity, and cuts to services and support also have a profound impact on health, it is doubtful that the gap in life expectancy will be reduced. We have to transform attitudes and culture and devote appropriate resources, not least time itself, to working with people with learning disabilities to shape a health service that meets their needs. Unfortunately, with a struggling NHS, facing a staffing crisis, it is difficult to have any faith that the necessary resources are available to implement the recommendations the government proposes.

• Lucy Burke is an academic at Manchester Metropolitan Universityand co-chair of Learning Disability England, representing families and carers


Lucy Burke

The GuardianTramp

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