A mum from Plumstead is calling for a review on the treatment of teens under hospital care after she lost her beloved son to a rare form of cancer earlier this year.
Football-mad and “happy-go-lucky” 16-year-old Ben Jay was told he had Hepatocellular Carcinoma Cancer (HCC) on July 5, 2021.
The primary site of the cancer was in Ben’s liver, and he died seven months after his diagnosis on February 4, 2022.
The Charlton Athletic football fan started to display symptoms 18 months before the diagnosis, but mum Sharon claims she was told that the symptoms were “nothing to worry about”.
Sharon says that due to the discordance of Ben being transferred from paediatric units to adult care, he was “not cared for in a timely way” – which she believes led to the death of her son.
While it is too late for Ben, the Jay family are now seeking to prevent other 16 and 17-year-olds from going through similar and are calling for a review of care of late teens through a UK Government petition.
Sharon told the News Shopper: “Ben did suffer with a condition called Von Willebrand Disease (VWD), which is a condition that can make you bleed more easily than normal, and doctors claimed his symptoms were because of this, but I knew there was something else wrong with my son.
“Evelina children’s hospital saw Ben in the March after I explained the symptoms, and a doctor said Ben will be transferred to the adult haemophilia department when he turns 17.
“But Ben was still 16 and wasn’t turning 17 until October - they didn’t do anything apart from take his bloods.”
A spokesperson for Guy’s and St Thomas’ Evelina London Children’s Hospital told the News Shopper that Ben’s blood tests showed "no concerns" for his condition, but after finding some changes, the hospital advised further investigations through his local paediatrician.
Sharon added: “Blackheath Private hospital then informed me that Ben had something wrong with his bowel, but I knew that wasn’t right because of the nosebleeds he was having.
“We still did a sample anyway, and on May 18, 2021, we were told there was ‘nothing wrong with him, and he should go home in the sunshine and chill’.
“I was also told, by doctors, that Ben’s symptoms were ‘all in my head’ and I was ‘looking for something wrong’.
“It’s just so devastating.”
A spokesperson for The Blackheath Hospital said it does not comment on individual cases but it is “committed to delivering outstanding care to all patients”.
After frequently attending A&E and as Ben’s symptoms were worsening, Sharon still believed she wasn’t receiving the care her son needed and so decided to call the urgent care line.
She added: “I phoned urgent care on July 2, and within minutes I was seen to a doctor who gave Ben antibiotics.
“Ben was admitted into hospital the next day, and on July 5, Ben was taken for an MRI scan and was told he had an 80 per cent liver tumour.
“My son was taken into his first chemotherapy on August 11, and he completed six sessions overall.
“In November, we were told that the chemo did not work, and a lymph node was found on his pancreas and squishing on his heart.
“My son was given 18 months to two years, but he lost his life three months later.
“All the care staff had to do was listen to me, and they didn’t, and now I have lost my son.”
Ben, who had the “kindest heart” and was always smiling, had a passion for football, as he played for the Cray Valley Under 18’s club, and frequently attended football matches at his number one team, Charlton Athletic.
Fellow Charlton fan and Ben’s dad, Garry Jay, told the News Shopper: “Ben and I used to go to Charlton and Tottenham games together.
“The club has been so amazing and sorted me a season ticket since Bens passing - I have been taking Ben’s friends to the games.
“We’re hosting a charity football game for Ben’s birthday, I am trying to make sure we have enough players, like his friends and the people who made an impact in Ben’s life.
“In a way, I am carrying on Ben’s journey.”
Since Ben’s passing, family, friends, and supporters from across south east London have come together to sign the petition and raise awareness of the lack of care elder teens may face when undergoing life-changing illnesses.
Ben’s school, Welling School, held a football fundraiser named the ‘Ben Jay Cup’ on February 11, 2022, and will hold this match every year in memory of the teen.
On what would have been Ben’s 18th birthday, crowds gathered at Ben’s primary school - Greenslade Primary School - to celebrate and remember his life.
The gathering saw dozens of people come together to release red, silver, and blue balloons into the sky.
Speaking at the balloon released, Sharon said: “Ben put up such a fight.
“We don’t want any other family to go through what we’ve been through, but there has been other children since bens passing that have been swallowed up by the system.
“My challenge is to change that.
“And that for me, will be in Ben’s memory.
“I love you, Ben; you’ve always got my back.”
Friends and family then gathered around a large screen projector, listening to songs in Ben’s memory and watching a picture slideshow of his life.
A spokesperson for Guy’s and St Thomas’ said: “Ben had been a patient at the haematology department of Evelina London Children’s Hospital for a number of years and we were saddened to hear of his death.
“Our deepest condolences go to his family.
“Ben was being treated for a mild blood condition at Evelina London.
“Blood tests showed no concerns for this condition but had some other changes for which we advised further investigation through his local paediatrician.
“This was already underway as he also had symptoms which were not related to his blood condition.
“At his family’s request, Ben’s haematology care was moved to adult services.”
A spokesperson for The Blackheath Hospital, said: “We are unfortunately unable to comment on individual cases, but we are committed to delivering outstanding care to all our patients.
“Should a patient or loved one feel as though their care did not meet that standard then we encourage them to raise their concerns with us through our robust complaints process.”
A spokesperson for Lewisham and Greenwich Trust said: “We’re unable to comment on individual cases due to patient confidentiality.
“However, we would encourage anyone with concerns about the care of a loved one to contact our PALS and complaints service, which will carry out a thorough investigation.”
On October 3, 2022, family friends Annabel Bhambra and Mark Baughen will be running the London Marathon for Children with Cancer UK in memory of Ben – donations can be made here.
Sharon Jay’s petition can be viewed here.
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