Death by Indifference – family campaigners who are real life superheroes

Guest blog by Beverley Dawkins, Policy Manager at the learning disability charity Mencap

Learning Disability Week is an annual awareness-raising campaign organised by Mencap. This year it is taking place from 19-25 August 2013 and will celebrate peoplewith a learning disability, their families and supporters by asking the question: Who is your real-life superhero?

Can you imagine what it would be like to lose a loved one? Not only that, but to lose someone you love because the NHS, a service we all rely on to protect us, failed to value the life of the person you loved so much?

I know I can’t even begin to imagine what that must feel like, let alone the strength it takes these families to pick themselves up and fight tirelessly for justice, not only for the person they lost, but for the many hundreds of people with a learning disability every year, whose deaths could have been avoided.

I dedicate this blog to all these families because they are real life heroes. I dedicate it to the 98 families who have told us their story, and to all the other families who are fighting the same battle.

 My name is Beverley Dawkins and I work at Mencap as a special adviser. I have worked in the field of learning disability for over 30 years and I am passionate that people with a learning disability and their families should have the same rights as everyone else and the same opportunities to lead a happy and full life.

Sadly this wish is not always a reality. We know that over 1,200 people with a learning disability die needlessly in the NHS every year.

Christine’s daughter Tina died in 2009 in Basildon Hospital after a catalogue of failings. In a blog she wrote for the Guardian Christine sums it up perfectly:

“Doctors should learn a lesson from these unnecessary deaths. They should treat every patient with the same care, compassion, dignity and respect. And they should treat the parents in the same way.”

In 2007, following the deaths of six people with a learning disability in NHS care, Mencap published Death by indifference, which exposed the unequal healthcare and institutional discrimination that people with learning disabilities often experience within the NHS.

The bravery of the six families who agreed to share their stories amazes me, because nothing like this had ever been done before. Without the loving parents and family members of Emma, Mark, Martin, Ted, Tom and Warren we could not have got this campaign off the ground. Death by indifference played an important role in influencing the Department of Health to commission the Confidential Inquiry into premature deaths of people with a learning disability.

In 2012 Mencap published a progress report Death by Indifference: 74 Deaths and Counting. We are now at a stage where, over the past decade, families and carers have reported 98 deaths of people with a learning disability to Mencap. They have told us that hospital blunders, poorly trained staff and indifference are to blame for their loved ones’ death.

On 19 March 2013, the Confidential Inquiry published the findings of its two year investigation. It found that 37% of deaths of people with a learning disability wereavoidable. The findings of the Inquiry confirms our fears, and those of many families, that people with a learning disability are still not receiving equal healthcare in all NHS settings and are continuing to die as a result.

Along with many of the families I was very disappointed by the response from the Department of Health to the Confidential Inquiry. It was the government’s chance to put the recommendations into action and really show that people with a learning disability are valued. We were especially disappointed that they did not take decisive action to implement a mortality register. Without this how will we be able to track any progress made towards tackling the issues?

In July I was asked to a debate in the Lords hosted by Baroness Hollins. Thanks to some of the families who came to the event we were able to talk about our shared disappointment at the response to the inquiry and make the issues real for the MPs and decision-makers who were there; thank you Chas, Peggy, Christine, Monica, Joan and Sue.

There are more people I would like to mention if I had space because together our campaigning has resulted in some real improvements that we should all be proud of. Thanks to these campaigners people with a learning disability now have annual health checks and there are many more specialist learning disability nurses in our hospitals.

It seems the fight is not over, but with the superhuman strength of these families, I truly believe they will be heard and things will continue to change for the better.

Tell us about your superheroes by visiting www.mencap.org.uk/LDW