Stansted patient's loss of life-saving medication "a death sentence".
A young Stansted woman who is being deprived of her life-saving medication says she feels as though she has been handed “ a death sentence”.
Lauren Mitchell (21) has not been able to eat food since she was diagnosed with Chronic Intestinal Pseudo-Obstruction at the age of 7. She is totally reliant on bespoke bags of fluid containing all the nutrients her body needs which is fed intravenously into her bloodstream via her heart.
But following production issues, manufacturer Calea, based in Cheshire, has had to reduce output, with normal service not likely to resume until the end of the year. NHS England has declared it a “national emergency”.
“I see a very long tunnel without a light at the end of it because there is absolutely nothing I can do about it,” said Lauren, who is virtually housebound in her Reeve Road flat because the condition leaves her feeling nauseous, dizzy, lightheaded and extremely tired.
She has to carry around a rucksack containing the 2.7litre bag while her body absorbs the liquid through a line directly into her chest. This can take anywhere between 12-16 hours a day and on Monday she had to undergo surgery to replace the line.
“I feel like I have been given a death sentence because they are saying we are not going to make the thing that is keeping you alive. How am I going to survive?
“I just want people to realise how serious this is. If a company that made insulin for diabetics stopped making it there would be an uproar, but because this condition is rare, no-one knows about it or realises how ill it has made people. I was quite stable before this, but this crisis has set me back a couple of years and affected me mentally, more than you can imagine.”
The rare condition means Lauren’s stomach muscles do not work to push food through her digestive system. TPN (total parenteral nutrition) keeps her alive.
But for the past three weeks she has had to rely on a “generalised” version. “It’s an off-the-shelf bag, but is not tailored to me or my needs.
“Calea has stopped delivering my bags so my mum is having to travel to the Royal London Hospital in Whitechapel once or twice a week to go and get them."
Lauren, a former Forest Hall School student who has a passion for writing and public speaking and briefly studied journalism at Harlow College before her illness meant she had to stop, said she was extremely lucky to have the support of her mum, Claire, who lives in Takeley; brothers Carl (25) Shane (15) and Joe (7) who also suffers from the condition, and her boyfriend, Grant (20).
The Medicines and Healthcare products Regulatory Agency said a routine inspection in June revealed a potential contamination issue and problems with the manufacturing process that did not meet current guidelines, dating from 2015.
"Even though this contamination was found in the production area, it is important to add that we found no evidence that the products manufactured and supplied to patients were contaminated."
But the two issues meant the MHRA had to take immediate action. "Calea had to reduce output in order to make necessary changes to maintain the safety of their product."
A Calea spokesperson said: “Supplying patients is Calea’s number one priority and we apologise to patients and their families for the distress caused.”
An NHS England spokesperson added: "The NHS is working hard to minimise disruption to patients while supporting Calea to find a solution.”