Our response to the Leder review – we need a new care system

2018’s Leder review, published this morning and the second report published today on the unfair treatment of disabled people, again reports ongoing concerns about the deaths of people with a learning disability. It says:

• the reported cause of death for 40% of people with a learning disability, was pneumonia, which is treatable if caught in time.
• 19 people were not resuscitated because they had a learning disability or Downs Syndrome.
• 40% of deaths of people with a learning disability remain unreviewed.

Alex Fox, Shared Lives Plus, CEO says: “Disabled people deserve the same standard of health care as everyone else. Yet, it is shocking that the Leder review highlights again that if you have a learning disability or Downs’ syndrome, your life is valued less than a non-disabled person.

This continues to be unacceptable and shows unchanging inequality bias in our health and care services.

We call on government to learn from models of care whose ethos is valuing people as human, with preferences, interests and meaningful relationships. We want health and care services to be inspired by the social model of disability where disabled people are valued, prioritised and enabled to enjoy their human right to a family and community life.

Alongside other services where individuals are the centre of their own lives, over 10,000 Shared Lives carers across the UK already offer nearly 14,000 people an ordinary life, by sharing their home and community together. Half the people who live with, or visit a Shared Lives carer, have a learning disability and 8% have mental ill health.

We know we can do better. The NHS must learn from Shared Lives and other community models to radically transform and  treat people as fully human, with equally valued lives.