‘My brother died after failings at hospital so we worked with NHS to make things better’
Paul Ridd, who had a learning disability, suffered a ‘dire level of care’ according to a scathing report, but his family have turned the tragedy into huge change for the NHS, as Lucy John reports
BEFORE his untimely death at just 53 years old, Paul Ridd absolutely idolised his family, loved drinking cups of tea and had a terrific sense of humour.
He also happened to have the mental age of an 18-month-old child and tragically died in 2009 following neglect at Morriston Hospital in Swansea.
“He was like having a little child in a man’s body. He gave us so much joy as a person because he always had a smile on his face and he never complained despite all his health problems,” said Paul’s sister Jayne Nicholls, who has since dedicated her life to improving healthcare for those with learning difficulties.
“He would love holding a balloon and watching your face to see how you’d react if it was going to burst. He would love you to put something over your head and play peepo. He had epilepsy and would have fit after fit, but he’d still be there, heavily sedated with a smile for you.”
Paul, whose family is from Baglan, underwent a major bowel operation at Swansea’s Morriston Hospital in December, 2008, before he died three weeks later on a general ward. But, despite the seriousness of Paul’s bowel condition, it ultimately wasn’t what ended his life. He in fact died from respiratory problems after he was transferred from intensive care to a general ward without the “lifeline” equipment he needed. It was determined that neglect “contributed” to his death.
In a scathing report on Mr Ridd’s care, published in 2011, Peter Tyndall, the Public Health Services Ombudsman for Wales, said: “Paul’s nursing care on the general ward was abject and a long way below reasonable standards. It greatly concerns me the dire level of care to which Paul was subjected to on the ward could have happened in the 21st century.”
Sadly for Paul and his family, what happened to him in the weeks leading up to his death was far from his first experience of mistakes by healthcare professionals which negatively impacted his health and wellbeing.
“He was born in 1955 with a cord wrapped around his neck following a mistake by the health service at the beginning of his life,” said 57-year-old Jayne. “This is what caused his learning difficulties. He lived with our mum and dad and in those days there was no help or respite for people looking after people like him. They tried him in special schools and they couldn’t look after him either, so Paul went to live in Hensol Castle at the age of nine, which was a specialist facility looking after people with learning disabilities. Mum was desperate. Many people who went there were forgotten about, but we were always part of his life and would visit him every week until he left in 2001.”
Jayne said Paul then lived in assisted housing nearby and that the family maintained their close relationship with him, and would all get so excited whenever he came around to visit. He was always a huge part of their lives and Jayne believed her children had grown up to be better people because they had him in their life.
In the 12 months prior to his death,
Jayne sought medical help for his bowel issues. She said: “I must have taken him about a dozen times, saying he hadn’t been to the toilet in 10 days, his tummy’s hard, his tummy’s swollen. At first we were told to go home and try things like Movicol (laxative), prunes, to exercise more, to play games with him on the toilet.”
She believes that if someone without Paul’s condition had presented like that they would have been MRI scanned and checked over. In Paul’s case though, he would have needed sedation to be checked.
“On New Year’s Eve, Paul ended up being admitted to hospital requiring an emergency major surgery because his bowel had perforated. If he had been checked properly before, he possibly would have had an operation, he possibly would have had a stoma bag.”
Despite the seriousness of Paul’s bowel condition, the family believe he would still be alive today if his true needs had been recognised at every stage.
“Paul died in Morriston Hospital following what they call diagnostic overshadowing, which means they put his symptoms down to his disability and not down to the fact he was dying,” said Jayne. “When [Paul’s carer] was telling [hospital staff ] that Paul wasn’t right, they were putting it down to agitation and they put him on diazepam. I had been with Paul in the morning and he had been on a high dependency unit and then I got a call saying he was getting moved to a general ward, which we saw as a good thing.”
Jayne explained that, unlike most people, Paul could not cough on demand to clear his airways. He needed a tracheotomy tube to clear any mucus or saliva form the back of his throat so it did not block his airways.
“But when they moved him they removed his tracheotomy because that ward couldn’t take him if he had one, so he drowned in his own secre
tions and died of diagnostic overshadowing. They let him down at birth, they let him down in primary care and they let him down at hospital when he died,” she said.
Other failures Paul experienced while at the hospital, according to Jayne, included him going 19 hours without any observations and there being no nursing care plan to highlight his personal needs.
Jayne said: “When we lost Paul, we felt like we let him down for not asking the right questions, but at the time he was in a hospital and we thought he was in the best place for himself and that he would get the care he needed and deserved. Losing him left a massive hole in our family unit. When you see what it does to a mum and a dad to lose a child, it’s just really, really painful. We lost so much losing Paul as a family and we always say that we don’t think he was valued in the healthcare setting.”
Sadly, Paul’s family are not alone in grieving the early death of a learning
disabled person. The 2018 Learning Disabilities Mortality Review (LeDeR) found that on average, people with a learning disability (aged four and over) died on average 23 years early if they are a man and 27 years early if they are a woman. Also, the more profound the learning disability, the shorter the life expectancy was found to be.
The report stated that poor quality healthcare was more likely to happen to people with learning disabilities, meaning they were more at risk of avoidable and premature deaths. The average age of death for a person with “severe” difficulties like Paul is 57. A compatible mortality review in Wales is still pending.
When Paul died the family were surprised to find that there was no awareness training for staff or tools for them to use in secondary care for dealing with a person with a learning disability.
“It was tough for us,” said Jayne. “But Jonathan and I decided to stop being bi angry and dd decided id d t to work k with ith the NHS instead to help make things better. We went to every ward in Morriston Hospital asking people what could be done better. We found that staff wanted to work hard to make things better for people with learning disabilities, they just didn’t know how to. A big part of our work now is making sure doctors and hospitals make reasonable adjustments to make sure people like Paul are checked at that stage so that their illnesses are picked up early enough, so they don’t end up like him.”
Motivated by their pain, Jayne, along with her brother, Jonathan, started The Paul Ridd Foundation in 2017, and keeping to their promise, they have helped to transform health care in Wales to be able to recognise and act on the specific challenges faced by those with learning disabilities.
But even with all they have achieved, Jayne insists there is still a long way to go and that each success still frustratingly feels like a battle rather than a given.
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Jayne said: “When Paul died, there were two learning disability liaison nurses working in Wales in acute care. These nurses are learning disability trained and can interact with patients about their needs. We now, after lots of campaigning, have 19 learning disability liaison nurses and we’ve trained over 2,000 champions who work alongside the liaison nurses.
“Part of our latest project as a foundation is we’re trying to empower families, caregivers, people, individuals with a learning disability, to understand what level of health care they should be given, how they access it and just explain to them why need to have access - we’re working alongside learning disability charity Mencap and looking to do events.”
The charity’s logo is made up of three little peop people inside a speech bubble to highlight hig the importance of communication and patient-centred pat care so that tha health professionals siona see the person, not the disability. This logo log will sometimes appear ap above the hospital h beds or the hospital tags of people with learnin ing disabilities.
“We funded 1 12,000 of these pa packs including lar large laminated log logos, adhesive stickers a and took them to every hospital in Wales. They are a for wristbands and hosp hospital notes, magnets and posters. po It’s not just a badge, it’s a re reminder that these people are different differen and might need their care tweaked,” said Jayne.
“A “Another th h huge thing t we did was implementing mandatory training. We lobbied the government and had over 5,000 signatures on our petition to make learning disability training mandatory across the healthcare setting. They did a debate in the Senedd and from that a framework has been done to make sure all hospital staff will have a form of mandatory training around learning disabilities -from the receptionist, to the doctors, and the GP to the CEO of the health board.
“What we need to know is that these things are there, but we’re finding that a lot of carers, families and people with learning disabilities don’t know they’re there. Our latest focus is to tie up links between those people and hospitals. There is tremendous work going on out there at the moment, but now it’s all about joining up the dots and making it consistent across Wales.”
However, keeping their important - and life saving - work going has proved more difficult over the last year-and-a-half because of the pandemic. Jayne and her brother are completely voluntary and employ one staff member to help them once a week. They are entirely self-funded and rely on fundraising events to stay afloat, which have all been cancelled due to Covid-19 restrictions.
To try to top up funds, Jayne has given herself the challenge of walking 100 times up Church Hill in Baglan throughout the month of May.
Though Jayne said it really was a challenge for her, it didn’t compare to the historical and existing challenges faced by many disabled people who simply needed adequate healthcare.
“We as a family have paid the ultimate price for the lack of training, ignorance and complacency towards our brother,” she said. “We want people with a learning disability to be valued in society and receive a fair and equitable service when receiving healthcare.”