Only a few days to go: We’re raising £25,000 to keep TheyWorkForYou running and make sure people across the UK can hold their elected representatives to account.Donate to our crowdfunder
I endorse everything the right hon. Gentleman says, and his point about the evidence being here brings me to the main subject of my speech, which is to speak on behalf of my constituent Nathaniel Leahy and, in particular, his parents Lauren and James. His mum, Lauren, is here in the Gallery today. When Nathaniel was three months old he had his first seizure, and he was diagnosed with a rare genetic disorder that resulted in his experiencing up to 100 epileptic seizures every day. His mum and dad were told by the doctors that his condition was so rare that, as far as they could see, it was the only case anywhere in the world. Eventually, he was prescribed Epidiolex, via the NHS.
Lauren has told me that initially Epidiolex did bring some positive effects but they were not sustained and they “plateaued”, in her word, so she looked for something that would do more to ease the incredible pain that her son was facing. She was unable to secure a prescription via the NHS, so she went to the Portland Hospital here in London, where the specialist, who was previously at Great Ormond Street Hospital, gave a private prescription for Bedrolite. That is the prescription Nathaniel is now benefiting from; it is making a difference to the quality of his life. The cost to the family of that private prescription is £2,200 a month; they are fundraising and crowdsourcing funds in order to get that treatment for their son, but that surely cannot be right. We have heard from a number of speakers on both sides of the House about the principles of our national health service of meeting need and of people not having to contribute financially in that way. That figure of £2,200 a month is extraordinary, which is why I was keen to make a brief contribution in today’s debate.
We need to move forward based on the best available evidence, but part of that evidence is surely the voices of the families, and we need to make sure they are heard in this debate. Nathaniel recently celebrated his first birthday. I hope his mum does not mind my saying this, but she said to me earlier that it was a first birthday they were never sure he was going to see. They are very proud that he got to celebrate his first birthday. I hope that when the Minister closes the debate, she will be able to offer us not only some hope, but, perhaps more importantly, a sense of urgency that I can take back to my constituents and, in particular, to Nathaniel and his family.