A Skelmersdale mum is appealing for the right to be given a drug trial, which she says will transform her life.

Jacqueline Lloyd, 37, suffers from narcolepsy and cataplexy, which means she experiences extreme sleepiness and muscle weakness every day.

Jacqueline, who used to be a head chef, was diagnosed with the conditions in 2008 and has spent the last seven years trying to find something that will enable her to play with her two children for a few hours - something that is impossible now.

Jacqueline said: “I just don’t have a life. I fall asleep at the most inappropriate times, I’ve fallen asleep on the toilet, into my dinner, it’s just awful.

“The cataplexy means if I have any emotional response to anything such as laughing or crying I can collapse, I’ve caused myself so many injuries. Playing with my children is out of the question.

“Because my condition is so rare I’ve struggled to find help from the medical community and social services.

“I desperately want to be given a trial of sodium oxybate, which has been proven to help with both conditions, but I have repeatedly been told my case isn’t extreme enough. I don’t know how much extreme it can be though, I’ve been classed in the top 5% worst cases by a leading sleep specialist.

“My eight-year-old son Jack wrote a heartbreaking letter to the government after I was last refused the drugs. I cried so much when I saw it. It says ‘You should apologise and give my mum the medicine she needs, How would you feel if you couldn’t spend time with your mum.’ No little boy should have to write letters like that, that’s why I’m determined to carry on my fight.”

Jacqueline also lives with her partner Darren Kavanagh, 40 and daughter Charlotte, 15, who act as her carers, as she needs round the clock care.

She has tried various other treatments and has been referred to numerous consultants over the past few years, but nothing has helped her condition.

Jacqueline said: “Social services have told me they can put me into residential care, but I want to play an active role in my children’s life. Last year I finally got a wet room and special chair fitted, as I kept falling asleep in the shower.

“I feel I have been let down by everyone. I don’t know for sure if this medication will work, but I have tried everything else and I deserve some sort of life.”

The NHS West Lancashire Clinical Commissioning Group said: “NHS West Lancashire Clinical Commissioning Group makes decisions about the funding of medicines and other interventions on a population basis for the majority of treatments. Where a clinical need is identified for interventions that sit outside routine commissioning, these requests are subject to a process called Individual Funding Requests (IFR).

“The CCG’s commissioning request panel, consisting of representatives from medicine, public health, pharmacy, nursing and commissioning, would then fully consider the application and take account of all the evidence before making a decision. In all cases the decision made by the panel is based on the clinical effectiveness of the procedure for a particular patient and not on financial grounds.

“Sodium oxybate is not routinely funded by NHS West Lancashire CCG or any of the Lancashire CCGs. Following discussion at the panel it was agreed that there was insufficient clinical evidence provided to demonstrate that the patient would obtain greater clinical benefit from the treatment than other patients with a similar clinical presentation, and funding was declined. The CCG has received a further request for the case to be considered and this will again be reviewed in due course.”