South Ribble mum protests at local elections – saying epileptic son is being failed

A South Ribble mum is using the local elections to protest against what she says is a failure in her epileptic son’s medical treatment.

Joanne Griffiths is protesting outside St Andrew’s Church Hall in Longton on behalf of her nine-year-old son Ben, who can have up to 300 seizures a day due to intractable epilepsy.

Joanne, from Much Hoole, claims Conservative MP for South Ribble Seema Kennedy is failing to help her family, leaving them to pay for an expensive prescription that the NHS could now prescribe.

Blog Preston previously covered Joanne’s concerns about the treatment Ben was receiving from Alder Hey Children’s Hospital.

Joanne said: “Ben now has a private UK prescription for medicinal cannabis and I have been asking Seema Kennedy to help us get access to this drug via the NHS for nearly a year.

“We are still waiting for a meeting with Seema Kennedy. In 11 months Seema Kennedy has not even spoken to us on the phone or given us a meeting. She has got her staff to phone. All she does is write letters and some of these are not as discussed with her staff.

“We are now left fundraising for life-saving drugs to reduce our son’s seizures that at full dose will cost £2,000 + a month.

“Seema has now been appointed a new role in health and wrote to Matt Hancock over a month ago, who she must speak to every day, this was about a meeting.

“We are now left with no meeting yet again, no one answering her phone calls and no one answering our emails. Ben as one of her constituents deserves better.”

In response a statement provided to Blog Preston from Seema Kennedy MP said: “I have been working closely with the Griffiths’ family since July 2018 and have raised Ben’s case personally with the Secretary of State for Health, and Alder Hey Children’s Hospital to try and find a solution.

“I will continue to assist the Griffiths’ family as their MP. However, I am clear that NHS medical professionals should, in all cases, be able to make the final judgement about which drugs are prescribed to their patients.”

The family hope that paying for the medication will prove it works for Ben, and he will eventually be able to get an NHS prescription. They are fundraising for the treatment on JustGiving.com.