EpiPens better for allergies than trip hospital
AWOMAN who has had her life potentially saved on numerous occasions due to adrenaline-filled EpiPens says she would rather risk managing any future severe allergic reaction in her own home due to her hospital experiences across the North West.
Since 2017, Anita Robertson, has suffered severe and extreme allergies including to everyday foods such as onion and mushrooms, with reactions coming on quickly.
One occasion saw Anita, from Banks, needing paramedics called out to help her after simply walking down the fabric softener aisle at an Asda supermarket near Switch Island in Liverpool, where she had inhaled the scents of the products.
Over the last four years, she has been forced to use an EpiPen between 30 and 40 times due to the severity of her reactions and has been hospitalised on numerous occasions due to severe vomiting, itching, and rashes appearing.
Husband Kevin said he has often seen her “turn blue” due to how low her oxygen levels have been.
But now both Kevin and Anita feel she would be better off managing any severe reaction at home with just her EpiPen if something were to happen again due to historical hospital issues they say they have had.
This has included doctors saying she has no history of anaphylaxis, resulting in her EpiPen prescription being removed for seven months during the Covid pandemic.
On one other occasion, medics reportedly said she might be allergic to adrenaline while in hospital despite taking the drug for a number of years.
It was in December 2019 that medics at Salford Royal Hospital wrote to Southport Hospital saying Anita had no history of anaphylaxis and mast cell activation syndrome; a condition where you have repeated episodes of the symptoms of anaphylaxis.
The letter – which the Visiter has a copy of – said the risk of a stroke was higher than the benefit of using an EpiPen as a result of this decision. This was despite Anita having at one point being rushed to A&E at Salford after suffering a suspected allergic reaction.
Instead, the letter said Anita had chronic spontaneous urticaria and angioedema.
When Anita tried to get a new EpiPen in January 2020 from her GP at Roe Lane Surgery in Southport, she was denied the prescription due to the letter. It is understood Southport and Formby CCG, which runs Roe Lane, were following clinical recommendations at the time.
It wasn’t until seven months later in August 2020 that a new prescription for an EpiPen was secured through experts at Guy’s and St Thomas’ NHS Foundation
Trust in London who said she had ‘probably recurrent anaphylaxis’. The seven-month wait was “touch and go”, Kevin said, with constant worries Anita might fall ill where she had no access to medical help.
When Anita was re-prescribed an EpiPen in August, medics at the London trust said the previous diagnosis of chronic spontaneous urticaria and angioedema was “unlikely in the face of acute and very intermittent episodes”.
A letter from the London trust to Southport Hospital said Anita “must have an adrenaline injector available at all times”.
The Visiter also understands that a medical specialist has recently informally diagnosed Anita with a form of mast cell activation syndrome, with further tests to be conducted next week.
During that time without an EpiPen, Anita suffered a severe allergic reaction in a store in Feb 2020; she and Kevin believe it may have been much worse if not for the on-site pharmacist administering an EpiPen she stocked in-store.
“Paramedics took 30 minutes to get there, so I really don’t know what would have happened to her if it wasn’t for the pharmacist,” Kevin said.
April this year then saw Anita admitted to Royal Preston Hospital with suspected chest pains. The Robertsons say that while consulting with staff at Southport Hospital over Anita’s medical records, there was a mention of her “potentially” being allergic to adrenaline. This was despite her using the drug since 2017 to cope with anaphylaxis incidents and adrenaline being approved on her care plan.
Kevin said: “One episode like Anita has suffered means it is likely to happen again. She had a history of this.”
Anita and Kevin now worry that in a post-lockdown world, she is more susceptible to having a reaction.
Even so, both believe Anita is better off managing a potential life threatening allergic reaction at home, hoping her EpiPen will be enough.
“One time in hospital at Preston I looked up and there were 10 doctors stood around my wife while she was receiving oxygen after suffering a reaction,” Kevin said, with Anita “turning blue” despite having had adrenaline.
“There’s no way they were there unless needed.
“So for professionals to say it was wrong is so insulting to us and their medical professionals that were standing by.
“She says to me ‘don’t take me to a hospital if it happens’ – how can I argue against it after this?”
A spokesperson for Southport and Ormskirk NHS Trust said: “Mrs Robertson’s previous concerns have been addressed and she has been provided with a plan to support her care should she present at Southport hospital again.”
Salford Royal NHS Foundation Trust was unable to publicly comment on the matter due to ongoing communication with the patient continuing in a direct manner.
But the Visiter understands the trust has previously written to Anita to address concerns raised with the trust. It is also understood that a trust investigation into matters raised by Anita have been concluded with the outcome fed back to her in writing.