Legacy of a ‘pioneer for change in specialist health care’ continues to live on

The legacy of a ‘pioneer for change in specialist health care’, who died from a rare genetic disorder, continues to live on.
When Darren Williams, who could not walk or talk, was diagnosed in September 2016 at the age of 29 with PURA syndrome, he was, at that time, the oldest person in the world living with the syndrome.

PURA syndrome, caused by a chromosome mutation or, more simply, as described by his mum, ‘a spelling mistake in the brain’, was only discovered in 2014, and leads to developmental delay, seizures, low muscle tone, feeding difficulties and breathing problems.

From 2014, Darren helped manage his condition with the use of a personal health budget (PHB), funded by NHS Kernow’s Continuing Health Care team. He was the first person to pilot a PHB in the county.

A PHB is an amount of money to support a person’s individual health and wellbeing needs, and is agreed between the person and their local NHS team.

There is currently about 48 people across Cornwall and the Isles of Scilly who receive a PHB.

Darren’s mum Jane Williams, from Foxhole, said:

“Up until 2016 we had no diagnosis for Darren whatsoever. We accepted him for the wonderful, kind, caring, unique young man that he was, however, it felt good on behalf of him, when there was a diagnosis.”

Sadly, Darren died in June last year, eight weeks before his 30th birthday.

In the last year of his life he had suffered more than 3,000 seizures and despite trying all different types of medication for his epilepsy it was very difficult to treat.

The mum-of-two said: “We loved everything about Darren, from his smile and hugs to his fight and his laughter. He was incredibly cheeky and flirtatious with the women and his infectious personality shone through to everyone he met.”

Darren was also incredibly determined, she added, and over the years he helped develop a number of services and paved the way for new ways of thinking and working. Darren’s PHB helped him to manage this care in a way he wanted by putting him in control of what support he needed.

Mrs Williams said: “He had five carers, they became like our extended family. I’d like to heap praise on Katie Collings and Jackie Horne who put in place the PHB for Darren, and the team that supported Darren in his care.

“The PHB gave him a quality of life that he really did deserve and you could tell how much it meant to him from the smile on his face –that’s something you really can’t put a price on. I am so very grateful that we had that opportunity.”

Katie Collings, NHS Kernow’s interim operations manager for continuing healthcare, said:

“I would describe Darren as a pioneer for changing how specialist health care services in Cornwall and the Isles of Scilly are delivered. Jane’s tenacity, her openness and honesty couple alongside Darren’s resolve meant we were able to develop and commission a safe, effective and holistic service, delivered in the community and tailored to the individual’s needs.”

NHS Kernow is helping Mrs Williams raise the profile of her fundraising efforts to support others with PURA syndrome to keep the memory of Darren shining brightly.

Her next event will be at quiz night and raffle at the White Pyramid, Trewoon, on Friday (16 November) from 8pm.

All the money raised in Darren’s name will go to support the research academies into PURA syndrome at the University of Southampton.

Added on 03/12/2018, in News - News