Exposed: Suffolk’s EpiPen shortage
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While manufacturers and the NHS insist there is no supply issue, our reporter found a concerning shortage of the lifeline medicine in the county, leaving residents with allergies vulnerable.
A Suffolk businessman has told how he nearly died after a mixed-up dessert order triggered a food allergy and sent him into anaphylactic shock.
Mark Robinson, from Felixstowe, suffered the terrifying episode at the end of a family pub meal, and has now spoken of his ordeal to highlight an apparent shortage of life-saving EpiPens in many Suffolk pharmacies.
The EpiPens can rapidly reverse the symptoms of a potentially fatal allergic reactions.
A subsequent investigation by this newspaper has confirmed many Suffolk surgeries struggle to source EpiPens - though clinical commissioners insist there is not a problem.
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Mark's allergic reaction happened at New Year. He and his partner Victoria usually see the New Year in in Malta, but last year they decided to spend it with Mark's mum and stepdad in Hertfordshire.
When out for a meal, he and his stepdad both ordered sticky-toffee pudding, but Mark, who has a wheat allergy, ordered a gluten-free version.
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However, it appears they were accidentally swapped when delivered to the table. He went into anaphylactic shock.
As he was 40 minutes from the nearest big town, Mark, who runs The Fresh Sauce Company, was told that he was lucky an ambulance was close by to save his life.
"I got really angry when I got home. When it first happened, it was a shock. I thought I was going to die, and everyone was panicking. The first few days afterwards I was having nightmares and my hand and arms would go numb."
Back in Felixstowe, Mark's GP prescribed him two EpiPens, yet when he went to the local pharmacy he was told return in a week.
"After a week I went back - they almost laughed and said, 'we can't get this why don't you ring around?'. His partner called places in Felixstowe and Ipswich and eventually the pharmacist at Boots near the hospital in Ipswich said, 'OK bring the prescription in'. I filled out a form and a week later the pens arrived. It was about finding the right pharmacy."
Fortunately, Mark was also able to get an EpiPen privately online by next day delivery, but at a cost of £50 upwards, this option is not available to everyone.
After hearing of Mark's ordeal, this newspaper contacted 50 pharmacies in Suffolk to discover only three had EpiPens in stock - two of which were readily available. Seventeen of the 50 pharmacies could not confidently share when EpiPens would arrive in stock - even if a prescription was provided.
Eight believed they could obtain the lifeline within 48 hours or less, 12 estimated two to three working days, nine expected three to five working days or more, and one said it would take a full seven days.
Seven pharmacies had one EpiPen in stock, even though the EpiPen websites clearly states: 'It is important that patients at increased risk for anaphylaxis have two doses of epinephrine available.'
When questioned why only one pen was available, pharmacists came back with numerous reasons, including 'that's all we can get'.
Pharmaceutical company Mylan, one of the major manufacturers supplying Suffolk's pharmacies, says there is not a distribution problem with EpiPens.
However, the EpiPen website states: "EpiPen® has experienced manufacturing challenges which has resulted in interruptions in the production of EpiPen 0.3mg and EpiPen Jr 0.15mg Adrenaline Auto-Injectors (AAIs)."
A spokesman for NHS Ipswich and East Suffolk and NHS West Suffolk clinical commissioning groups said: "There have been supply issues affecting EpiPens and other adrenaline auto-injectors, however there are currently sufficient supplies overall to meet normal UK demand. If patients have any concerns they should speak with their pharmacist or GP."
This newspaper also looked at five different websites selling EpiPens privately online. One EpiPen on average costs £48.24 and two £93.19, but with next day delivery, two pens will on average cost £97.74.
It is understood there are other brands available.
Meanwhile, Mark says he had never had such a severe reaction until New Year's Eve, and that the attack, coupled with his difficulty in getting an EpiPen, has changed his life.
"It's put me off eating out. It's changed how I eat completely and my relationship with food, which isn't great for someone who runs a food company. When we started our business, we realised we couldn't afford to live in our house anymore, so we moved onto the little yacht we're renovating." The former sailing champion continues: "Now, the thought of having an anaphylactic shock in the North Sea where there's no help? I'm going to have to think twice about doing the sports I love. We've sailed to Holland and France - I can be 12 to 13 hours from any help! It puts everything into perspective."
Have you been struggled to get an EpiPen? Contact email@example.com