We held a ‘Stop Social Murder’ session at our Oxford offices and were joined in person and online by 6 other organisations: Dudley Voices for Choice, Lewisham Speaking Up, Speak Up, Inclusion North, Brighton and Hove Speak Out and Leicestershire SPUDY.

The day aimed to clarify what we mean by Social Murder, why it happens, and to agree on solutions to take to government and other decision-makers. We also wanted to make sure everyone enjoyed the day!

Social Murder is when people with learning disabilities die sooner than they should have because they have been given poor support or ignored.

The 8 reasons why we believe Social Murder happens are (not in any order):

1. No law says things like LeDeR must happen.
2. Learning Disabled voices are not heard often enough.
3. Information is not in Easy Read or is not shared.
4. Organisations do not talk to one another or ‘pass the buck’.
5. When people with learning disabilities die, nothing is learnt.
6. Family and friends of people with learning disabilities are left alone to fight.
7. Local systems need to be made for people with learning disabilities, not by them.
8. The national government never puts people with learning disabilities first.

The group discussed things like:

• Using existing laws better, including the Human Rights Act and Equality Act.
• Lord Scriven’s proposed law.
• They want partnership working between government, the Care Quality Commission (CQC), NHS organisations and care providers, so someone is responsible and lessons lead to action.
• People with learning disabilities and their families must be listened to.
• People should be able to communicate with speech, communication cards, computers, pictures, movement, drama or other methods. 
• Hospital passports and reasonable adjustments should be read and used, not ignored.
• Partnership boards should have a complaints focus group, sometimes called a “green table”. It should include people with learning disabilities, and the results of complaints should be shared openly.
• The system should not wait for someone to die before trying to improve care.
• When a death does happen, reviews must include the doctors, nurses, care staff, social workers, family and other people who knew the person well.
• Reviews should look for poor care and system failures, rather than blaming the person’s disability.
• Families and friends should not have to fight alone for safe care, answers or justice.
• Lived experience must help shape services, meetings, complaints systems and decisions.
• National government must treat the lives of people with learning disabilities as a priority.
• The group wants a strong, long-term advisory voice for self-advocates, with people with lived experience speaking directly to ministers, Parliament and national leaders.

The final recommendations will be sent to the government, Integrated Care Boards and NHS regional leads.

The group will meet up regularly to discuss progress.

The group are planning a joint action event for next year to apply more pressure.

For more information, please contact James by calling 01865 204214 or by emailing james@mylifemychoice.org.uk.