Among steps already taken by the Nursing and Midwifery Council include providing staff with learning disability and autism awareness training and creating accessible information about its procedures, revealed head of public support Jessie Cunnett.
“You don’t expect somebody to go into a hospital to be made better and come out worse”
This was part of wider efforts to try and make the NMC a more “human organisation”, she explained.
Ms Cunnett was speaking at conference where families of people with learning disabilities and autism told their stories of the appalling abuse and neglect suffered by their loved ones at the hands of nurses and others.
The conference heard from Claire Garrod whose son Ben’s jaw was fractured when he was punched in the face by a nurse while a resident at the now infamous Winterbourne View hospital, which has since been closed down.
He then moved to a care home in Devon run by the now defunct Atlas Project Team where he was “hideously abused” again including being locked in a bare room more than 100 times.
Ms Garrod, who described Ben as a funny, witty, caring and kind young man and “an absolute joy to be around”, said the family had seen him “changing before our eyes” after he arrived at Winterbourne View. “Behind his eyes he was dead,” she said.
She told of her utter shock when she received a call to say Ben’s jaw had been broken and he had lost teeth and part of his gum.
When she later saw the X-ray of his injuries she said she broke down in tears.
“The last time I saw an X-ray of his head was when he was a twin inside me,” she said.
“You don’t expect somebody to go into a hospital to be made better and come out worse,” she added.
At the Veilstone residential setting in Devon, now shut down, Ben was locked in a room with no bed, heating or toilet 117 times – sometimes overnight and often with no food, explained Ms Garrod.
She said the care home refused to let the family see Ben and – shockingly – he was told his mother was dead.
“So when we did eventually see each other again – I will never forget his face – it was horrendous,” said Ms Garrod.
Overall she said the abuse Ben had suffered had taken a “horrific toll” on him and his family.
She told the conference Ben had been left with acute post traumatic stress disorder and now “didn’t know the difference between right and wrong any more” because of the mistreatment he had suffered.
“He needs us to tell him that he is still loved because he must have felt so unloved at one point,” said Ms Garrod.
She went on to explain that the family had put their faith in the justice system but had felt badly let down by the courts and nursing regulator.
Six out of 11 care workers who admitted neglect and abuse at Winterbourne View were jailed while five others were given suspended sentences.
In all 13 directors, managers and carers were convicted of various offences as a result of the abusive regime overseen by the Atlas Project Team but only one director was jailed with others given suspended sentences or non-custodial sentences.
Ms Garrod said her family had gone into the criminal trials “with a heart full of hope but came out broken”.
In particular she said she was shocked by the way victims of abuse were portrayed in court and that “if you have a learning disability it doesn’t seem like you are as important as everybody else”.
“People went in as victims – suddenly it turned and they became the ones on trial,” she said.
“There was nothing about the environment or that they had been locked up, that they had been dragged around naked, that they had been beaten. That didn’t matter.”
Meanwhile, she said it took seven years for the learning disability nurse who broke Ben’s jaw to come before the NMC only for a hearing in December 2017 to conclude he had not used excessive force.
“The outcome was that the learning disability nurse was guilty of thumping Ben but not using unreasonable force,” said Ms Garrod. “Obviously as a family we couldn’t let that go.”
The family successfully appealed via the Professional Standards Authority for the NMC to re-investigate and after a second hearing in December last year nurse Maxwell Nyamukapa was struck off the nursing register after the panel determined he had used excessive force, ruling that punching a patient could never be appropriate.
“Often people feel very let down because they don’t understand why we have made a particular decision”
“Ben’s jaw does matter. Anybody else’s jaw that’s broken would have mattered and things have to change for people with learning disabilities because they deserve better,” said Ms Garrod. “And we as parents – and there are a lot of us – are going to fight and fight until people start listening.”
She revealed she was now working with the NMC to raise awareness of the needs of people with learning disabilities and to help the regulator improve the way it worked.
Ms Cunnett acknowledged Ben and his family had contrasting experiences of the NMC in action with the second of the two hearings resulting in a “much fairer outcome”.
“Claire has been incredibly generous in meeting with us to tell us about the difference between those two experiences and to help us understand how we can really learn from what happened and how we can take very particular action to make improvements,” said Ms Cunnett.
She said Ms Garrod would also be helping to launch the NMC’s forthcoming strategy and annual report.
Ms Cunnett went on to tell the conference about other specific steps the regulator was taking to look at ways to improve support for people with learning disabilities and autism – and their families and carers – although she admitted there was still “some way to go”.
She said the NMC had very recently signed up to NHS England’s Ask, Listen, Do initiative aimed at supporting organisations to learn from the experiences of people with learning disabilities.
“I believe very strongly that must be more than a signature and that we must be committed to doing things differently,” said Ms Cunnett.
The NMC has also developed a much wider range of information in easy-to-read and accessible formats covering topics like what fitness to practise actually means, what happens if someone raises a concern, how long the process takes and what it was like to be a witness – due to be launched imminently.
She said staff had undergone learning disability and autism training and the regulator was looking at how best to share this learning with all independent panel members who sit at hearings.
“Those members of staff who have been on that training found it an incredibly profound opportunity to think differently about the work that they do,” said Ms Cunnett.
She said the regulator had been meeting with people affected by poor care and was also in the process of introducing an independent support and advocacy service to help ensure raising concerns was as easy as possible.
“We will be offering people the chance to work with independent advocates from the very beginning when they want to tell us what happened right the way through until we make some decision,” she said.
She said the NMC was still in the “relatively early stages of putting that in place” but had been trialling the new service.
Other wider changes could include the introduction of a form of “impact statement” for all complainants to help explain the effect a nurse or midwife’s misconduct had on their life and wellbeing.
Ms Cunnett said the body had consulted a wide range of organisations and interest groups on this step that would see the NMC “treading new ground as a regulator”.
“One of the key groups we felt it was important to talk to were people with learning disabilities,” she explained and said the body had recently held a focus group on the idea with people with learning disabilities.
“We have a legal framework that should prevent these kind of abuses but isn’t doing so”
Meanwhile, the NMC was now offering people who raised concern the chance to meet staff face-to-face when they made a complaint and when a decision was reached.
“Often people feel very let down because they don’t understand why we have made a particular decision and it is really important whoever people are – but particularly people who have had experiences of care in learning disability and autism services – that we take time to explain very clearly what we have done, what the outcome is and to hear any further concerns they might have and look at how we can address those,” she said.
She said the NMC was at the start of developing a plan for the next five years and had been speaking to different people to get a sense of the issues that were most important.
“One of the things we will be doing is thinking about how we can include the particular interests of people with learning disabilities and autism and how we can continue to work with those people and organisations that represent them and the families and carers throughout the whole delivery of that plan,” noted Ms Cunnett.
She said the NMC also recognised the need to boost support for learning disability nurses in response to a question from a learning disability nurse during the conference who had worked in the field for 15 years and highlighted the huge drop in numbers.
Ms Cunnett said this had been a strong message to come out of initial work on the five-year plan.
“One of the things we have heard and seen is that quite clearly there is a real need to support learning disability nurses and I can see that is going to form quite a clear part of our plan going forward,” she said.
She also flagged up the need to support all nurses to have a better understanding of the needs of people with learning disabilities and autism.
The A Fair Hearing? conference was organised by law firm Leigh Day, which specialises in personal injury and medical negligence.
Allison Day, partner at Leigh Day, who was involved in representing residents of Winterbourne View, said it was clear the existing legal framework was not working when it came to protecting some of the most vulnerable people in society.
“As a lawyer I am extremely frustrated that we have a legal framework that enables action to be taken and should prevent these kind of abuses but it clearly isn’t doing so,” she said.
Overall she said the law in this area generally had been a “big fail” when it came to “providing a check on those abuses and making people accountable when things do go wrong”.
She said a key aim of the conference was to explore what needed to change “to ensure people with learning disabilities and autism can actually access and benefit from the legal protections that are in place”.