Photo: Danny Tozer
In 2016 I walked hundreds of kilometres across the north of Spain with self advocates and families who had loved ones with learning disabilities die in care. One of those families was Rosie Tozer, whose son Danny died in the ‘care’ of Royal Mencap. I heard the shocking details first hand of what happened to him, the two years of documented appalling care, the complaints ignored, the good staff sacked and the bad staff moved to other services and his death, the journey in the ambulance to the hospital alone with no-one to hold his hand as he died. Then the private admission that the services were poor from the then CEO and the public denial and cover up that followed. Royal Mencap, unlike most care providers, did not have an internal review or commission an independent review of Danny’s death. The Tozer family fought for an Article 2 inquest with a jury, paying the significant legal fees from their own funds, and Mencap fought successfully to reduce the scope of the inquest to 6 months before Danny died and to not have a jury. The inquest blamed Danny for masturbating, his family for not complaining enough and all of Danny’s records for the last 6 months that he was with Mencap had ‘disappeared’. Mencap lawyers brutalised and blamed the family in the inquest.
As with most inquests of the deaths of people with learning disabilities, neglect was not found — to give this some perspective it wasn’t found in the inquest of Stephanie Bincliffe either after 9 years in solitary confinement and left to become so obese that she died, or with Oliver McGowan who was given drugs he was allergic to against his family’s advice. Royal Mencap used this finding (which they themselves had criticised in other inquests when it was found) to exonerate themselves. They didn’t apologise for the poor care and instead proclaimed in interviews on national television that the services were some of the best in the country, despite the CQC rating them as requires improvement. This lying and gaslighting of Danny’s family was unforgivable. I have campaigned with and for Danny’s family since his inquest for Royal Mencap to do the right thing and apologise and commission an independent review. They have not only ignored me and other campaigners, but they have tried to use their might to stop me campaigning. As well as leaving a family in pain and limbo, as ‘the voice of learning disability’ who have had the ear of the government and press, they give a clear message by their actions that the lives of people with learning disabilities can be brushed under the carpet if you put your fingers in your ears for long enough. I had hoped Royal Mencap was at a turning point with new leadership, but they have never contacted the Tozer family despite being asked to.
I was part of founding Learning Disability England to take a stand against the gross inequalities that people with learning disabilities face alongside people with learning disabilities , families and organisations . Learning Disability England recently told Royal Mencap that they could not join Learning Disability England as members. This was because they had not done the right thing by Danny Tozer and his family and therefore did not meet the required organisational values that Learning Disability England asks of its members. This was the right decision for Learning Disability England to make, and is brave in this ‘sector’ where professional politeness often trumps speaking out for people’s rights.
The saying ‘the standard you walk by is the standard you accept’ is a saying that holds strongly for me in how I make decisions about which organisations to work and engage with. Many care organisations get things wrong, it is inevitable when providing care services, but I judge an organisation by how they respond to mistakes, how they reflect on and rectify them. I also judge organisations by how they treat the people they support and families after they get things wrong. Royal Mencap have failed miserably on all counts and have deliberately inflicted further pain on a grieving family.
I wonder what would happen if all organisations behaved as Learning Disability England has and refused to allow membership of organisations that treat people with learning disabilities and families with such contempt? There is of course an argument for bringing such organisations in to the fold and teaching them the right way, and in fact it is something I have done on many occasions with struggling organisations as the former CEO of a membership organisation. However, in order to improve, an organisation needs to accept responsibility for what it gets wrong.
Peer pressure is powerful and boycotts often work to stop bad behaviour. Why do we always call for a top down approach on this, make the government or Care Quality Commission solely responsible for doing something about such terrible treatment when we could also do something ourselves? We all know who we are going to boycott when it comes to the terrible treatment of employees during the pandemic. Brunei changed laws and Bodyshop changed animal testing policy after boycotts. I wonder why we don’t use it more to uphold the human rights of people with learning disabilities?
Like it or not, Royal Mencap is the most powerful and influential learning disability charity. Their behaviour sets a standard yet they have a significant number of services that are rated as requires improvement. by the Care Quality Commission and they have very publicly treated a family appallingly after poor care and a death in their services. A chair who brazenly lied in a television interview to protect their reputation remains in the job. They have cynically relied on the fact that people with learning disabilities don’t matter to most people so honesty, openness and accountability can be overlooked- nothing going on here guv.
Of course there will be many good people working for Royal Mencap doing a good job, I have no doubt, but the saying ‘the culture of any organisation is shaped by the worst behaviour the leader is willing to tolerate’ rings true here. The elected representative body of Learning Disability England has shown real leadership and I congratulate them for this. I just hope that this forces Royal Mencap to finally do the right thing by Danny Tozer’s family.