Gary Bourlet, Membership and Engagement Lead – “When people get the right care and treatment they live happier, longer, healthier lives. People need to work together to create a national strategy and then we need to hold people accountable for making the action happen.”
Learning Disability England members are worried that ending the national LeDeR reports could make people with learning disabilities and autistic people’s lives and deaths even easier to ignore and harder to learn from.
While the Government has announced a new patient-level dataset, it is not clear how this information will be used to effectively identify every person who has a learning disability and drive improvement. As well as how progress will be measured, and importantly, who will be accountable for acting on what it shows.
Data alone will not reduce health inequalities. It must lead to action. That is why Learning Disability England members continue to call for a dedicated national health strategy for people with learning disabilities, as set out in their open letter signed by over 1, 700 people with learning disabilities, families, organisations and allies.
In addition, Learning Disability England supports Inquest’s campaign for a National Oversight Mechanism to ensure the life saving recommendations that are made following inquests and inquiries are acted on and further deaths are prevented. There is currently no system in place to make sure changes are made.
People and families want to see clear accountability for turning learning into action, with named organisations responsible for making improvements. We see no meaningful accountability from the 2024 report, which like previous reports found serious inequalities between health outcomes for people with a learning disability compared to people without a learning disability, and no mention of how it will happen going forward using the dataset.
Mary Woodall, Self advocate Member Representative – “People with learning disabilities need to be involved in decision making going forward – a coproduced plan that listens to people.”
We will continue to try and find out more detail and share with members.
In this blog, Simba Ngwarati,Percussianist with the CityLits Orchestra, shares how music helps him tell stories, express his feelings and connect with others. He also reflects on this year’s Learning Disability Week theme, Do You See Me?, and explains why it is important for people with learning disabilities to be able to explore their talents and have their voices heard.
My name is Simba, I grew up in Zimbabwe and I moved to the UK in 2007.
For me, I grew up listening to reggae music early in life as my mum used to play it a lot, and that’s how my love for music started.
This Carers Week, Family Member Representatives of Learning Disability England – Kate Chate, Liz Wilson, Paula Strike and James O’Rourke – reflect on this years theme ‘Building Carer Friendly Communities’.
The theme of this years Carers Week ‘Building Carer Friendly Communities’ is a reminder to recognise, value and support carers in every part of society, including the workplace.
As Family Member Representatives, we know members share a commitment to people with learning disabilities, and to the families and carers who support them.
We also know that one cannot live a good life without the other.
The UK Supreme Court has changed the way the law on whether a disabled person is being deprived of their liberty if they cannot make the decision themselves.
This means that the rules on Deprivation Liberty Safeguards (DoLS) has changed.
The Court has ruled that the long-standing “acid test” should no longer be used on its own.
The acid test asked two questions:
Is the person under continuous supervision and control?
Is the person free to leave?
If the answer to the first question was yes and the second was no, then the person could be deprived of their liberty.
Instead some new things must now be looked at when deciding if someone is deprived of their liberty.
As we approach the 15th anniversary of the BBC Panorama investigation that exposed abuse at Winterbourne View, self-advocate Steven Chapman reflects on his work challenging institutionalisation and the role peer advocacy plays in supporting people to leave long-stay hospitals.
His work is just one example of the determination and leadership shown by people with learning disabilities, families and allies over the past 15 years to fight for people’s rights to live safe, good lives in their communities.
Learning Disability England is recruiting a Project Co-Ordinator.
The Project Co-Ordinator will join the team on a 2-year basis to manage a grant funded project. This is an important project, and the role will lead Learning Disability England’s contribution to tackling unfairness in cancer care for people with a learning disability from Black, Asian and minoritised ethnic backgrounds.
The postholder will work closely with people with learning disabilities, families and health and social care partners to deliver this project.
The job is part-time, working 22.5 hours per week. It is a home-based role with some travel expected. The salary for the jobis £32,000 – £35,000 full time (£19,200 – £21,000 for this role).
We particularly welcome applications from people from Black, Asian or minority ethnic backgrounds as they are currently underrepresented in our organisation.
