Following years of campaigning to transform the way people with a learning disability are treated in hospitals, learning disability charity Mencap is calling on the government to take swift action to stop further unavoidable deaths in light of its consultation on mandatory training for staff who work in health and social care activities which are regulated by the Care Quality Commission.

Whilst welcoming the consultation, research carried out by Mencap showed that 45% thought the lack of training may contribute to avoidable deaths and 1 in 4 doctors and nurses have never been given training about learning disability.  

Shockingly, 1200 people with a learning disability die avoidably each and every year, when timely access to good quality care could have saved them, highlighting the unequal healthcare many people with a learning disability still receive. 75% of people with a learning disability said their experience of going to the hospital would be improved if staff explained things in a way that was easy to understand.

A petition led by bereaved mother and campaigner, Paula McGowan, received over 50,000 signatures after her 18-year-old son Oliver passed away in 2016. Paula believes his death could have been avoided if the nurses and doctors were trained about learning disability and autism and understood how to make reasonable adjustments for him.

Leroy Binns, who works on Treat me well as a Campaigns Assistant for Mencap, said:

"A few years ago I had a mild heart attack, but because of the inaccessible information I was given by the doctors I didn't even know that I had until over a year later. Having a learning disability means I need healthcare workers to communicate clearly to help me understand so if doctors and nurses had this training and had the time to explain what was happening it would make things much better.  

“This consultation is a great opportunity for the government to listen to the voices of people with a learning disability as many are already working with local hospital trusts to deliver training so can help share their own expertise and experiences for the future." 

Commenting on the consultation, Dan Scorer, Head of Policy and Public Affairs for Mencap, said:

“Pressure to change the system continues to grow and this consultation is a vital sign of commitment to reducing premature mortality among people with a learning disability. 

“It’s a scandal that a lack of knowledge may be contributing to avoidable deaths in England each year, so the Government and NHS must ensure that no doctor or nurse sets foot on a ward without proper learning disability training. No family should ever have to go through what happened to Oliver McGowan.

“People with a learning disability and their families should be at the heart of helping to shape and deliver this training, so we can learn from their knowledge and experiences. Simple things like more time, better communication and clearer information can all help to make sure someone with a learning disability is given the best possible care whilst in hospital.” 

As part of its national Treat me well campaign, Mencap is now urging people with a learning disability, their families and carers, as well as health and care professionals to tell the Government their views to ensure urgent and lasting change is introduced to help save lives.

Mencap wants to see training introduced that meets their five Treat me well Standards, meaning it must: 

  • be co-designed and co-delivered by people with a learning disability
  • include general learning disability awareness
  • include information about the Mental Capacity Act
  • include training about reasonable adjustments
  • be face to face and allow time for discussion.

To sign up to Mencap’s Treat me well campaign visit www.mencap.org.uk/tmwsignup

Ends

For further information or to arrange interviews, contact the Mencap press office on:

Notes to editors

About Mencap 

There are 1.4 million people with a learning disability in the UK. Mencap works to support people with a learning disability, their families and carers by fighting to change laws, improve services and access to education, employment and leisure facilities. Mencap supports thousands of people with a learning disability to live their lives the way they want. www.mencap.org.uk   

For advice and information about learning disability and Mencap services in your area, contact Mencap Direct on 0808 808 1111 (9am-5pm, Monday-Friday) or email help@mencap.org.uk 

What is a learning disability?

  • A learning disability is a reduced intellectual ability which can cause problems with everyday tasks – for example shopping and cooking, or travelling to new places – which affects someone for their whole life;
  • Learning disability is NOT a mental illness or a learning difficulty, such as dyslexia. Very often the term ‘learning difficulty’ is wrongly used interchangeably with ‘learning disability’; 

People with a learning disability can take longer to learn new things and may need support to develop new skills, understand difficult information and engage with other people. The level of support someone needs is different with every individual. For example, someone with a severe learning disability might need much more support with daily tasks