Fine words are a start, but progress must be measured by the positive impact on people’s lives, says Mencap’s Jan Tregelles

For NHS Change Day, NHS England chief executive Simon Stevens has pledged to drive through change in the NHS for people with a learning disability.

NHS Change Day was created in 2013 and involves hundreds of thousands of health and care staff, patients, carers, volunteers and members of the public from across the UK, sharing both pledges for change and getting support for new ideas.

Jan Tregelles is chief executive of Mencap

Jan Tregelles, chief executive of Mencap

Many see NHS Change Day as a PR exercise but Mr Stevens’ pledge is significant for thousands of people with a learning disability, their families and carers. It is something for which we need to hold him to account.

There are 1.4 million people with a learning disability in the UK.

Many people with a learning disability and their families have been fundamentally failed by our NHS – from the 1,200 who die avoidably in the NHS every year to the 3,230 people in inpatient settings such as Winterbourne View, where they are at increased risk of abuse and often far from home.

On 4 February the National Audit Office published a heavily critical report on attempts by NHS England and other organisations to honour commitments in the 2012 Winterbourne View Concordat.

‘Thousands of people with a learning disability remain trapped in this system of outdated institutional care’

This involved moving people with a learning disability out of places like Winterbourne View, which was an assessment and treatment unit, and back into their communities with the right support. 

The NAO report was confirmation of what we already knew: that despite pledges from the government and NHS England to end this system of inpatient care, there has been an ongoing failure to deliver change.

There has been extensive media coverage of people who have been stuck in assessment and treatment units, where they are at increased risk of abuse and are often hundreds of miles from their loved ones.

NHS England, as the largest single commissioner of inpatient places and charged by government to change the system, has a vital role to play.  

On 9 February Simon Stevens told the Commons public accounts committee that a closure programme of inpatient units would be drawn up over the next six months. 

He also said that extra funding will be allocated to make sure people who have been in these places for many years can leave them and receive the support that they need in their communities. However, this will not be offered to people who have been recently admitted.    

Not far enough

This is a start but is by no means enough, especially after so many years of delay and inaction since the Winterbourne View abuse scandal was exposed. Thousands of people with a learning disability remain trapped in this system of outdated institutional care.

It is draining and heartbreaking for families at the centre of this to see constant new reports, commitments and promises, but without any change on the ground.

Mr Stevens’ pledge cannot end here. More has to be done to end the scandal of avoidable deaths and to stop people with a learning disability dying, on average, 16 years earlier than the general population.

One such person was Kirsty Jayne Pearce, who was just 17-years-old when she died avoidably within the NHS in 2003. It took Chas, her father, nearly 10 years to get answers and he is still fighting today.

‘All too often hospital staff wrongly believe a person’s illness is part of their disability when it’s separate’

Gerald Yilmaz was another person who died avoidably within the NHS in 2012, when staff did not take his symptoms seriously and kept sending him home. 

Around 100 families of people with a learning disability have told Mencap about the death of a loved one over the last decade.

They feel poor quality care, lack of well trained staff and indifferent attitudes to the wellbeing of people with a learning disability are to blame for their loved ones’ deaths.

As a result of many years of campaigning by families and Mencap, the government and NHS England have committed to establishing a learning disability mortality review. We expect this to be in place by the summer.

This review will not just tell us how many people with a learning disability are dying avoidably every year, but why.

Good practice

Learning why is not enough though, and we need to ensure that good practice is identified and used to improve care for all people with a learning disability.   

There is a serious lack of learning disability awareness training for NHS staff, evidenced by Learning Disability Practice’s recent research into university nursing schools.

Of the 55 institutions that responded, 26 stated that teaching about care of people with a learning disability accounts for 3 per cent or less of overall teaching time.

‘Fine words are a start, but progress must be measured by the positive impact on people’s lives’

Mencap research also shows that 42 per cent of acute NHS trusts do not have learning disability liaison nurses. 

This is deeply worrying. All too often hospital staff wrongly believe a person’s illness is simply part of their learning disability, when in fact it is completely separate.

Learning disability liaison nurses support people with a learning disability, their families and carers, and also train existing staff in how to care for people with a learning disability.

Mr Stevens’ pledge is important. It is recognition of the improvements that need to be made by everyone in the NHS to the care they commission and provide for people with a learning disability.

Fine words are a start, but progress must be measured by the positive impact on people’s lives.   

Jan Tregelles is chief executive of Mencap

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