People with a learning disability face inequalities in all aspects of their lives, and access to good quality health and social care is no exception.
Many people may think asylums are a thing of the past, but 2,250 people with a learning disability and/or autism continue to be locked away in inpatient units across the country, where they are at increased risk of abuse and neglect.
The Department of Health and Social Care has just announced that it will ensure that children and adults with a learning disability locked away in these institutions will have their care plans reviewed within the next 12 months. An independent panel, chaired by Sheila Hollins, will also be established to oversee the reviews of those in long-term segregation in inpatient units.
We at Mencap welcome Lady Hollins’ appointment. But let’s be clear: a review will not fix the issue at the heart of this crisis, which is the consistent underfunding of the social care system.
One only has to look at the horrific treatment of Bethany, a young woman locked away in a prison-like cell in an inpatient unit and fed through a hatch. Her brave father, Jeremy, has campaigned tirelessly for Bethany to be allowed to return to the community. He says Bethany does not want to celebrate Christmas this year as she does not want the humiliation of receiving her presents in this locked room. Despite authorisation for her discharge, she is stuck due to a lack of available support in the community.
These hospitals are not homes. What is urgently needed is an emergency injection of investment into social care to ensure the right specialist support and housing in communities. This would help prevent people being admitted into these modern day asylums in the first place. For those who are locked away, it would also fund the services they need to finally come back home and live close to their loved ones.
While this human rights scandal is being allowed to continue, this month has at least brought some positive news: campaigners have helped bring about the government’s announcement that it will introduce mandatory learning disability and autism training for all health and social care staff. This is an important step in addressing the scandal of avoidable deaths of people with a learning disability.
On average, people with a learning disability die more than two decades younger than the general population. One study estimates that 1,200 people with a learning disability die avoidably each year when timely access to good quality healthcare could have saved them.
That’s why Mencap has launched our Treat me well campaign: to help improve how hospitals treat people with a learning disability, which will hopefully help save lives. We have long been calling for mandatory specialist training for all healthcare professionals.
A lack of understanding in the healthcare sector is stopping people with a learning disability from accessing good quality healthcare. We know from our research that almost a quarter of doctors and nurses have never been given training about learning disability, and half of doctors and nurses think a lack of knowledge might be contributing to avoidable deaths.
A better understanding and some simple reasonable adjustments – such as more time, clearer information and better communication – can make a big difference. It can be a matter of life or death for people with a learning disability who are in hospital.
While the mandatory training is an important step forward, there is still much more to be done to ensure everyone receives the support they deserve.
What is required to genuinely transform care – and close inpatient units for good – is urgent investment in social care to address the fundamental reasons why people are stuck in units or admitted in the first place.
• Dan Scorer is head of policy and public affairs at Mencap
