2022 must mark a year of change

In the last few weeks there have been more people and families sharing their stories of system failures and  human rights abuses.

 

Today, 6 January 2022, the Independent newspaper has published a letter from 5 organisations including the Learning Disability England Rep Body Co Chairs about the lack of progress on Transforming Care.

 

The letter raises concerns about the number of people with learning disabilities and autistic people still being held in secure hospitals and ATUs.

 

And the number of people who have died unnecessarily whilst in these institutions.

 

 

The letter calls for the government to deliver on a “credible, evidence based, robust and detailed plan which redirects the half a billion pounds currently being spent on the wrong type of care”.

Read the Open Letter here 

It is now over 10 years since the abuse at Winterbourne View was uncovered.

 

Since then Learning Disability England members have been campaigning for abuse to stop.

 

And for people with learning disabilities and autistic people to get the right support in their own homes in the community.

Groups led by people with lived experience like Right2Home, #Rightful Lives,  the Stop People Dying Too Young group and We Are Human Too have worked hard to campaign for change.

 

Like the work they did during the Winterbourne 10 years on week of action

 

And Gary Bourlet’s blog and video he made with members 

Members have also been part of work to show how people can be supported well in the community.

 

Work like Helping People Thrive and Changing Our Lives Hospital to Home resources.

And members and partners have been part of the review of Building the Right Support.

 

Building the Right Support used to be called Transforming Care.

 

You can read the easy read update from NWTDT / Pathways about the review and the actions taken here

Rep Body members Ivan Olbrechts and James O’Rourke have been part of the All Party Parliamentary Group (APPG) on learning disability.

 

James and Ivan both have lived experience as family carers.

 

Read their update about the APPG on Transforming Care here

But despite all this work, the latest NHS data shows there are currently 2,085 people with a learning disability and/or are autistic in inpatient units.

 

This includes 200 children.

 

The average length of stay of those currently in units is 5.4 years, with 355 people having been in more than 10 years.

Like Tony Hickmott, who has been in an inpatient setting since 2001.

 

Despite the ongoing efforts of his family and others to help Tony get the right support in his own home in the community.

 

Read the BBC report about Tony here  

And there have been several reviews of deaths of people with learning disabilities in inpatient settings over the last few months.

 

 

Like Clive Treacey, who died on 31 January 2017 at the age of 47 after a seizure.

 

Read the review into Clive’s death here

 

Read the easy read summary here

And the findings of the Serious Case Review into the deaths of Joanna, Ben and Jon at Cawston Park private hospital.

 

They all died within a 27-month period between April 2018 and July 2020.

 

Read the Serious Case Review findings here

 

Read the easy read summary here

This is all evidence of a system that is not listening to people with learning disabilities and their families.

 

A system that continues to strip people of their human rights despite knowing many of the answers and solutions.

 

 

Let 2022 be the year when people’s Human Rights are respected.

 

When the abuse and inappropriate restrictive interventions end.

 

Let 2022 be the year when the government finally delivers on its plans.