A MOTHER from West Yorkshire, whose son developed a sleeping disorder after having a swine flu vaccination, has said families are “desperate for help” in their fight for compensation.
Sam Forbes, 11, from Batley, was diagnosed with narcolepsy and a raft of other neurological conditions following a Pandemrix jab in 2010 when he was only four years-old.
His mother Di, 50, said he has to take around 15 naps a day, often passing out in the street or collapsing during school lessons.
The condition left him so depressed that he has tried to commit suicide multiple times and he often became disruptive or belligerent because he was so tired, she said.
Ms Forbes told the Press Association: “This wasn’t our little boy, who ran around playing any more. This wasn’t our little boy.
“It’s not something that is easily recognised. People don’t know. Everything from schools to the GP is not easy.”
Her comments came as a debate in Parliament saw Labour MP Tracy Brabin accuse the Government of delaying access to compensation.
The vaccine, manufactured by GlaxoSmithKline, was given to more than six million people during the 2009-10 swine flu pandemic but the Government stopped issuing Pandemrix to children in 2011 after researchers from the Health Protection Agency found evidence of a link to narcolepsy.
Legal proceedings are ongoing over whether the vaccine definitively caused the neurological disorder, which affected around one in every 52,000 people vaccinated.
Health minister Nicola Blackwood, who also suffers from a chronic illness, said she was “deeply concerned” about the issue and confirmed that the Government would not appeal against a recent High Court ruling that would take into account how an illness might affect someone in the future.
Ms Forbes, who had to close her engineering business to care for her son, said he would need life-long support but the family have failed to secure compensation from the Government as he was not deemed disabled enough.
Families are entitled to £120,000 through the Vaccine Damage Payments Scheme run by the Government, but only if they can prove ‘’severe’’ disability.
She said: “We need help going forward and getting compensation. We need recognition that narcolepsy is a serious disability. It is extremely serious.
“We are desperate for help. Anything that brings this to a wider audience as it is understanding that’s lacking, that’s a big thing.”
Ms Brabin (Batley and Spen), who led the Westminster Hall debate, said: “The suffering and distress families have endured from this ongoing foot-dragging is unacceptable and upsetting.”
She also warned of a “postcode lottery” for treatment, as the Forbes have to take a 60-mile round trip to get the medicines on private prescription.
Ms Brabin said: “In spite of government’s acceptance of the link between Pandemrix and narcolepsy, they have been delaying processing applications by denying them, disputing the severity of the disability.
“They even appealed a case in which they were ordered to make a payment to one such child affected.
“In my view, for government to make these appeals go through the court system is a poor use of public money and an insult to those families whose lives have already been turned upside down.”
Ms Blackwood agreed to look into claims of poor access to medicines and to ensure that treatments are available for as long as necessary.
Speaking during Wednesday’s debate, she said: “I would like to assure you that I do not underestimate how distressing narcolepsy and cataplexy can be.
“As somebody who lives with a chronic complex illness which causes me to collapse in the street at times, I know how vulnerable this can make you feel, both for those who live with the condition and for their families.
“It is important that anybody who lives with narcolepsy receives the appropriate care and attention to manage their condition.”