Making sure everyone has a fair and equitable service
Understanding a patient’s needs can prove difficult when they have a learning disability. In the wake of one man’s tragic death, Mark Smith finds out how services are being improved in Welsh hospitals
There are 70,000 people in Wales with a learning disability, but a small minority have received an unacceptable standard of healthcare in hospital.
Paul Ridd, a vulnerable patient from Port Talbot, underwent a major bowel operation at Swansea’s Morriston Hospital in 2009 but died three weeks later.
The Public Services Ombudsman’s report into the circumstances of Paul’s death concluded that gross neglect, lack of staff training and ignorance were all contributory factors.
“We as a family have paid the ultimate price for the lack of training, ignorance and complacency,” said his siblings Jonathan Ridd and Jayne Nicholls.
But since his tragic passing, Paul’s brother and sister have dedicated their lives to making sure other families don’t suffer the same fate – by creating the Paul Ridd Foundation.
They have sat on numerous panels and groups and shared their story across Wales, in the Assembly and in Parliament, to increase awareness of the issues faced by patients with learning disabilities.
They now work with Mencap Cymru, Public Health Wales, Welsh Assembly Government and health boards around the country looking at the changes that need to be made. And they have even created their own disability logo, right, which is placed in Welsh hospitals as a trigger to encourage staff to communicate with the individual and think about patientcentred care.
The family said: “Thanks to fundraising we have been able to create and provide more than 1,200 learning disability logo packs for every ward and department in every hospital in Wales for medical staff to use with patients. “These packs contain badges, stickers and magnetic logos for use on patients’ wristbands, notes, lockers and above their beds as a gentle reminder that their patient needs special care.”
LWhat are the foundation’s key aims?
For the learning disability logo to be recognised and used across the UK
For learning disability awareness training to be mandatory for all NHS staff
To see an increase in the uptake of “quality” learning disability annual health checks and for everyone to have a Learning Disability Health Passport (Traffic Light Assessment)
To see learning disability liaison nurses and learning disability champions in every hospital across the UK
To see the implementation of a flagging system for learning disabled adults across every health board and the creation of a common system and standard as currently implemented in ABMU
To see an end to the “scandal” of 1,200 preventable deaths of people with a learning disability in hospital every year What has the foundation accomplished so far? Abertawe Bro Morgannwg University (ABMU) Health has joined forces with the foundation to implement changes in learning disability care. Christopher Griffiths, consultant nurse for mental health and learning disability, was the co-author of the innovative “care bundle” for adults with a learning disability. It was launched through the Welsh Assembly’s 1000 Lives campaign with the backing of the then Health Minister Mark Drakeford. The family of Paul Ridd added: “The care bundle was a big step forward for Paul’s legacy as it means hospital staff have to make reasonable adjustments when delivering care to people with a learning disability. “It has been designed to help hospital staff ensure that people with learning disabilities receive a fair and equitable service when they visit hospitals. “Our hope is that using the care bundle will help ensure that what happened to Paul does not happen to anyone else with learning disabilities. “We see implementation as the driving force to ensure that this happens and monitoring as key.” Have other health boards teamed up with the foundation? It’s not just ABMU which is taking on board the foundation’s new guidance.
The family said Hywel Dda Health Board has a resource box care bundle in place, Cardiff and Vale University Health Board has received funding for packs, and Hayley Tarrant, general manager of the learning disability service in Powys Teaching Health Board is in the process of organising funding too.
Betsi Cadwaladr UHB says it is launching its care bundle in July with Minister for Social Services and Public Health, Rebecca Evans. What changes have been made to hospital staffing? In 2016 ABMU launched its learning disabilities acute hospital liaison service in Morriston Hospital and now has full-time learning disability liaison nurses working for the health board.
Joanne Edwards is based in Morriston Hospital and Claire Jenkins is based in the Princess of Wales Hospital in Bridgend.
The family added: “Both are making a real difference to learning disability care, making sure reasonable adjustments are in place so patients can access the best possible healthcare.
“When liaison nurses are involved in the patient care they spend 45% less time in hospital.”
Betsi Cadwaladr and Aneurin Bevan health boards also offer a learning disability liaison service.
And by the end of the year, the foundation hopes to have learning disability liaison services in every health board across Wales.
“Prof Jean White, chief nursing officer for Wales, has been a great supporter of our work to ensure these changes happen,” the family added.
As part of the charity’s work, it supports the training of learning disability “champions”, volunteers who work in hospitals to improve learning disability care. There is now a network of 170 trained learning disabilities champions across ABMU health board’s four sites.
Their names are on ward noticeboards so staff know who to turn to with any questions or issues about learning disabilities care.
On June 21, Nicola Williams, nurse director of Morriston Hospital in Swansea, is holding a celebration day for these champions. What have hospitals done to improve their services? A number of innovative projects have been set up to improve the quality of care given to patients with learning disabilities.
One of them is called Soothing Patient Anxiety, or SPA for short, which aims to take the fear out of the operating theatre for patients.
SPA is designed for people who need dental work but cannot be treated in a traditional dentist’s surgery.
The anaesthetic team at the Princess of Wales Hospital in Bridgend says it has gone to extraordinary lengths to make sure they feel at ease.
The staff let the patient play their favourite film, music or video game as they go to sleep.
Operating department practitioner Paul Harris has also sourced an array of props, ranging from disco lights to children’s character toys.
The initiative has already won several awards, including the prestigious NHS Award last year, and been a finalist in others.
Now it has won the Anaesthesia Team of the Year Award in this year’s national BMJ Awards.
Another innovative change to learning disability care is taking place at Cardiff and Vale University Health Board.
Andy Jones, lead nurse has created an “automatic flagging system” to identify patients with a learning disability who access their services.
The foundation said: “This is important as they are naturally vulnerable and when presenting as emergencies they generally present late, find articulating symptoms hard and deteriorate quickly, so early recognition and prompt action is essential.”
Further information at www.paulriddfoundation.org and on Facebook.