Health Inequality: Autism and Learning Disabilities

Baroness Hollins Excerpts

Thursday 10th May 2018 Grand Committee

[Baroness Hollins (CB)]

My Lords, I, too, have a family interest. My son has a learning disability and is on the autistic spectrum.

The Learning Disabilities Mortality Review report was discussed briefly following an Urgent Question last night, and the Minister made some very reassuring comments about training, on which I hope that he will expand today. The mortality review is an extremely important programme, but it cannot change entrenched discriminatory attitudes on its own. Equally important is what action Ministers, NHS England and NHS trusts take to prevent avoidable deaths, given this important evidence.

Interestingly, the recommendations in the recent report are almost identical to recommendations made in 2007 Mencap’s game-changing Death by Indifference report: make sure that hospital staff understand about people with learning difficulties. Make sure that hospital staff work together with other agencies, including families, and that they understand the law on capacity and consent. They are the same recommendations every time, but we do not seem to be able to do anything about it.

It is critical that tackling health inequalities faced by people with a learning disability and/or autism is a priority among Ministers. NHS England must continue the funding of the mortality review programme beyond its current one-year extension and continue the good work of its learning disability programme beyond next March. Other confidential inquiries are permanent. Why is this group being treated differently?

In addition, individual NHS trusts must take urgent action in line with the recommendations of the review, not least in improving learning disability awareness training and practice in relation to the Mental Capacity Act. Doctors and nurses probably need a lower threshold for admission and to understand that sending a person with a learning disability home and suggesting that they come back if they are worried is inadequate. That may be one reason for the episodes of sepsis which underlie 11% of the deaths reported by the learning disability review.

The third sector is campaigning effectively, but it needs the Government and the NHS to commit, too. Mencap launched the Treat Me Well campaign in February, an aim of which is to ensure that no health professional sets foot on a hospital ward without learning disability awareness training. Dimensions, another national learning disability provider, is launching an initiative to offer training within primary care, and we have heard about SeeAbility’s report.

In my time at St George’s at the University of London, the most effective training for medical students was co-delivered by people with learning disabilities. Sadly, it ended on my retirement, because it depends on having a learning disability expert on the staff. If it was mandated, it will be different.

We know that involving people helps health professionals to understand what it is like to have difficulties communicating or understanding complex information. I look forward to working with the noble Lord, Lord Touhig, who has raised this important subject today, and other noble Lords, including the Minister, on this agenda.