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Jenny Evans
Jenny Evans and her husband Rich run a marquee and outdoor bar business
A woman who relies on liquid food after having most of her intestines removed was left without supplies for 10 days after a safety alert.
Jenny Evans, 31, from Grosmont near Abergavenny, is fed intravenously with a liquid that is tailored exactly to her needs.
She hooks up to it four nights a week, and while she sleeps it infuses into her blood over the course of 12 hours.
But she feared she would end up in hospital after the supply was delayed.
Supplier Calea UK said it was working to “restore a reliable supply as soon as possible”.
Jenny only has 20cm of her small bowel left after her intestines twisted so much that they died.
She had surgery to remove most of them in 2010 and what is left is not enough for her body to absorb the nutrients she needs from food.
Instead, the mother of two relies on a liquid, known as home parenteral nutrition (HPN), or total parenteral nutrition (TPN), which goes straight into her blood supply.
She hooks up to it four nights a week, and while she sleeps it infuses into her blood over the course of 12 hours.
She is one of about 130 patients in Wales who can live at home and administer parenteral nutrition themselves or with the help of a nurse.
But in summer, the supply was drastically reduced, and Jenny first knew about it when her bags did not turn up on the usual delivery van in July.
“I went ten days without a TPN delivery,” she told BBC Eye on Wales.
“I was very tired, I was losing weight rapidly, and my hair began to fall out.
“It was really nerve wrecking thinking I’m going to end up in hospital because of malnutrition.
“It was the busiest time for my business and I couldn’t afford for that to happen.”
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Jenny Evans
Jenny is fed intravenously with a liquid tailored exactly to her needs
Parenteral nutrition bags for home patients in Wales are supplied by Calea UK.
The bags are bespoke, and based on the patient’s blood results, containing proteins, sugars, fats as well as electrolytes, vitamins and essential minerals.
In June, the Medicines and Healthcare products Regulatory Agency (MHRA) conducted a routine inspection of the Calea UK production plant in Runcorn, Cheshire.
As a result of the inspection, the MHRA requested that Calea UK make immediate changes to their production process to ensure the safety of the product.
In order to do so, Calea UK had to reduce its output.
Overnight, its capacity to supply HPN patients in Wales dropped by 40%, leaving the pan-Wales parenteral nutrition service, which is run by Cardiff and Vale University Health Board, in a state of shock.
“If you can imagine someone phoning you up saying you can’t have any food or drink and we can’t get you any for the next week or so, that’s the analogy,” said Dr Rhys Hewitt, who heads up the team.
“My patients are more or less dependent on this intravenous feed and if they don’t get it, then worst case scenario, people could be very unwell and have to be admitted to hospital within a few days.”
The team risk assessed every patient in their care and then went through a process of prioritising who would continue to get the bespoke compounded bags and who would be given “off the shelf” bags, which don’t contain all the nutrients that a patient needs and should only be used temporarily.
Meanwhile, desperate patients tried to get through to Calea UK to find out what was happening and when their usual deliveries would resume.
“The low point was when I spoke to Calea every day requesting to speak to a manager to find out what was going on,” said Jenny.
“It was like they were speaking off a script.
“It took 10 days for me to get a manager’s call and me threatening them with legal action before someone called me back.”
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Cardiff and Vale University Health Board
The pan-Wales parenteral nutrition service had to work out which patients should continue to get bespoke compounded bags
Calea UK said that patients have telephone access to a “team of dedicated patient care co-ordinators in addition to an out-of-hours advice line, which is supported by Calea nurses”.
“We understand that the continued disruption is frustrating and this telephone service provides patients with the most accurate information available at the time,” it added.
According to the latest figure from the parenteral nutrition service in Wales, 75 patients are now back on Calea UK’s supply list.
But 48 patients still don’t have a compounding place.
In north Wales, five people are under the care of Wrexham hospital and are back on their compounded bags.
Some patients are being cared for over the border at Salford Hospital.
Calea said it is working with the MHRA and NHS Action Group to “restore a reliable supply as soon as possible”.
But it said that “it is unlikely that our production capacity will have reached the required volume before the end of the year”.
Jenny is back on her compounded bags but she is aware that at any point she may be switched back over to ‘off the shelf’ bags.
“People need to realise how important this TPN is,” she said.
“It’s not just a case of giving someone a paracetamol when they have a headache. This keeps me alive.”
Eye on Wales is on BBC Radio Wales at 18:30 BST on Wednesday and it is also available on BBC Sounds.