People who suffer rare reactions after vaccines ‘left in the dark’ without any support, warn families

The government has been urged to introduce a bespoke Covid compensation scheme that better supports the “forgotten” people who suffer severe side effects following vaccination, as experts warned that a failure to do so could actively fuel disinformation surrounding the jabs.

Speaking to The Independent, a number of affected families said they continue to stand by the vaccines and urged the public to continue taking them. But more needs to be done, they argue, to provide greater financial, emotional and clinical help to individuals who, in very rare instances, experience an adverse reaction to the jabs.

The families all said there was a “frustrating” absence of information, making it hard to know what support they are entitled to, whether the vaccine was responsible for their loved ones’ condition, and how they might claim compensation if so.

They also claimed that there has been a reluctance among authorities to engage with their cases, out of fear of being seen to question the vaccine programme.

One woman said clinicians were initially dismissive of her husband’s deteriorating condition in the days after he received a first dose. Another woman who lost her partner to rare clotting in the brain said the current damages scheme seems “as though it was intentionally made to prevent claims”.

“They are in a state of bewilderment,” said Sarah Moore, a lawyer assisting the families. “They have loved ones who are in intensive care or suffering severe health effects. In one case the person affected died. The families feel that there is nowhere to go, no explanation, no help.”

As with any medicine that is commonly used by millions of people, rare side effects are to be expected from vaccination.

These can range from the extremely rare blood clots detected in some recipients of the AstraZeneca jab – a link that has been acknowledged by Britain’s medicines regulator – to other conditions, such as Guillain-Barré syndrome (GBS), a rare immune disorder, where the relationship between cause and effect is unproven.

Under legislation passed in 1979, people who suffer harm from vaccines can claim damages from the government of up to £120,000. But to do so, victims must prove that they are at least 60 per cent disabled as a result of vaccination – a threshold that is seen by some to be too high.

“You need to show severe disablement,” said Duncan Fairgrieve, a professor of comparative law. “And the issue of causation is not easy to prove either. These constitute relatively high obstacles to recovery of compensation, which add to already complicated circumstances in terms of understanding what’s going on.”

Medicines experts, lawyers and families have instead called for a complete overhaul of the Vaccine Damage Payments Scheme (VDPS), saying it is “dated” and “irrelevant to what’s going on” in the context of coronavirus.

Ms Moore said the government should implement a bespoke Covid vaccine scheme that accommodates the small but growing number of recipients who have experienced debilitating reactions to the jabs.

“In order to receive financial compensation, cause and effect would have to be established, and in cases of GBS that is difficult. However, any scheme could also provide support in a wider sense of the word,” she said, adding that there is a need for “clinical support and a hub of places where people can go to have sensible conversations with experts about what’s gone on”.

Amid the absence of information on “what you can do, what questions to ask”, Ms Moore added, this “gap” is going to be filled with social media and other unreliable sources, “potentially leading to disinformation and vaccine hesitancy”.

In one case handled by Ms Moore, a 32-year-old doctor, Stephen Wright, died as a result of rare clotting in the brain eight days after he had received the AstraZeneca vaccine. Dr Wright leaves behind a wife, Charlotte, and two children. In accordance with the VDPS, his family are entitled up to £120,000 in damages.

“Filling out such an archaic, solely paper-based form in a world of technology seemed as though it was intentionally made to prevent claims, rather than support the victims who needed that support in the midst of tremendous grief,” Ms Wright said, in comments provided through her lawyer.

“I had to create a ‘death application’ weeks after losing my husband. There is no way to track it. I have no idea if it’s even been received. The psychological trauma, on top of the grief my sons and I are experiencing, is unimaginable.”

With 49 people in the UK now having died from the blood clotting disorder, experts have demanded the government addresses this legislative “blind spot”.

Dr Claas Kirchhelle, a historian of medicine at University College Dublin, alongside other experts, first wrote to Downing Street in November, before the vaccine rollout began. They called for the scheme to be modernised, but “nothing was done”.

“Transparent and effective compensation is an important part of vaccine acceptance,” said Dr Kirchhelle. “The benefits of vaccination far outweigh any risks, but you still have a duty to take care of the people who suffer side effects, and make it easy for them to seek help. 

“If we’re going to move into a continuing rollout basis, which seems very likely, we need to address the issue of compensation now rather than later.”

Other people represented by Ms Moore include those suffering from GBS, an autoimmune disorder that attacks the nerves and is typically active for up to four weeks, but can last for longer. These cases are less clear-cut, with no definitive relationship established between the condition and vaccination.

There appears to be an occurrence of GBS in approximately one per million Covid vaccinations, according to the charity Gain, which supports sufferers of the condition. An estimated one to two people per 100,000 are normally affected by the condition annually in the UK.

Data from Britain’s medicines regulator, meanwhile, show that there have been 184 cases of GBS reported among the more than 22 million people who have received the AstraZeneca vaccine. On Friday, the European Medicines Agency said it was investigating possible connections between GBS and the jab. It said it was also looking into reports of heart inflammation linked to the Pfizer and Moderna vaccines.

Paul Skinner, from Liverpool, said his 75-year-old mother was hospitalised with GBS a week after receiving her vaccine in February. Previously “fit, healthy and active”, Barbara was paralysed across much of her body and is now facing a year-long recovery.

“My mum understands everyone needs to be vaccinated, she took that on board herself. The risks are higher from Covid, she knew that,” Mr Skinner said. “Scientifically and medically, we don’t know if there is link between her reaction and the vaccine. We know there’s a risk with any vaccine and medication but I’m desperate for answers and help.

“People may well say that these cases are almost one in a million, but that doesn’t help us. We’re just forgotten. It’s not fair to say that these things happen and that’s that. We’ve been left in the dark without any support.”

Mr Skinner is one of the 43 people who have submitted applications to the VDPS, but he has yet to receive a response from officials. “The scheme just seems so dated and irrelevant to what’s going on at the moment.”

Another family, from Stoke-on-Trent, said their “fit and healthy” father, Tony, 58, was diagnosed with GBS 12 days after being vaccinated. He is currently paralysed and receiving treatment in intensive care. His daughter, Natasha, said doctors initially dismissed the family’s concerns over his condition as he slowly deteriorated in early March.

“It was a battle to get him into hospital, never mind the battle we’re facing to sort financing and support,” Natasha said. Tony’s wife, Nicola, said even if they were able to prove that vaccination had triggered GBS, the payments available through the VDPS “won’t come anyway near what his earnings would have been” if he’s left with a long-term disability and cannot work.

“Genetic experts have asked for Tony’s DNA sample to be used in research to better understand why he reacted this way to the vaccine,” Nicola said. “Authorities need to be clearer about what the full scope of reactions can be. We know all medicine has risks, but we were oblivious.”

Regardless of whether a link is ever established between the jab and GBS, there needs to be greater willingness among authorities to actively engage with potential sufferers of side effects, said Dr Kirchhelle.

Otherwise, he explained, this could fuel dangerous speculation. In some cases, aggrieved families may feel inclined to bypass the VDPS scheme and pursue lawsuits that are “damaging for vaccine uptake, emotionally stressful for everyone involved, and potentially far more costly for the government”.

“Creating an updated compensation scheme would not only help defuse vaccine hesitancy but also signal government confidence in the products that have been licensed,” he added.

“Avoiding the issue because you are afraid of undermining vaccine confidence means that you risk really letting down those individuals who have taken a vaccine for the good of society and appear to have suffered adverse effects.”

The Medicines & Healthcare products Regulatory Agency said it continuously monitors suspected adverse reactions reported with the Covid jabs, to ascertain “whether the vaccine may have caused the event” or whether it is “likely to be purely coincidental and due to underlying illness”. 

The Department of Health and Social Care said the Covid-19 vaccines are safe, effective and provide the best route out of the pandemic, having already saved an estimated 10,000 lives.

“All vaccines being used in the UK have undergone robust clinical trials and have met the MHRA’s strict standards of safety, effectiveness and quality,” a spokesperson added.

“The vaccine damage payments scheme provides a financial safety net to help ease the burden on individuals who have, in extremely rare circumstances, experienced harm due to receiving a government-recommended vaccine for a listed disease.”

A group of experts, including Professor Duncan Fairgrieve and Dr Claas Kirchhelle, have written an open letter on the topic of vaccine compensation. Read it here.