Danny Tozer died on 22nd September 2015 after having a seizure in his bedroom in a shared house where he was supported by Mencap.

There has been an investigation, which you can read more about here.

Learning Disability England is disturbed to hear that Danny’s parents, Rosemary and Tim, raised many concerns about his care before he died. We know that providers and commissioners should and must work alongside the people they support and their families to create the care that people want, need and have a right to.

When services have not been up to minimum standards, even if this is not a direct cause of death, we need to ask ourselves difficult questions and we need to be open and honest with families, loved ones and others we support.

Learning Disability England urges our provider and commissioner members to have the courage and confidence to not only ask those difficult questions, but act on the answers we get. Only then can we restore trust and confidence in good care and support that we know is out there.

Gary Bourlet, self-advocate and Co-Founder of Learning Disability England said:

“It doesn’t matter if it’s public services, private services or charity, let’s get them round the table with self-advocates, families, friends and organisations to move forward together, learning lessons from this and previous tragedies.   These things should not be happening, it’s the 21st Century and we need to take action now rather than later.”

Liz Wilson, family carer and LDE Steering Group member said:

“Rosie and I were working jointly with other families and providers to develop resources to enable better listening and understanding between families and providers when Danny died in September 2015.  There could not be a more powerful reminder that something in this system is deeply broken than the moment I shared the message of Danny’s death with a roomful of people.

People at all levels of providing support must accept and listen to the wisdom of dedicated and loving families.  Families are the beating heart of personalisation.  How many people have to die before this truth is understood?

Family networks remain strong despite disappearing resources.  I know I speak for many when I say to providers; have those difficult conversations with us, witness our pain and anger, have the courage to learn from us.  We can help you but you have to give up some of your power and be open to real change.”

Dr Alison Rose-Quirie, CEO Swanton Care & Community and LDE Trustee said:

“This is a tragic waste of a young life, our hearts go out to Danny’s family and friends. I have no doubt Mencap will be implementing major changes following this tragedy.

“As a sector we should all learn from the circumstances that resulted in this tragedy. Our care staff  are entrusted with supporting the most vulnerable in our society, this is a huge responsibility and one that must be taken very seriously at all times. Our first duty is to ensure the safety of the people in our care and we must never forget that.”

Our thoughts are with the family and loved ones of Danny Tozer.

You can make a donation to Epilepsy Action in memory of Danny here.