July 19 has been dubbed ‘Freedom Day’ – but Holly van Geffen feels like the relaxing of rules will force her back inside.
The double lung transplantee says: ‘While everyone else is celebrating, I’m mourning the loss of the little bit of freedom I had.’
The 28-year-old, from Leicester, has cystic fibrosis, a genetic condition that causes sticky mucus to build up in the lungs and digestive system.
Like almost four million people in the clinically extremely vulnerable group, she stayed at home for over a year to avoid catching coronavirus.
When the shielding advice ended in April and she had had both vaccinations, Holly started to take some small steps with precautions, meeting with friends from a social distance at restaurants where she could sit outside.
But the announcement that rules around mask wearing and social distancing will be left up to ‘personal choice’ after July 19 has brought back fears about the safety of CEV people like Holly and those who are unable to get the vaccine due to allergies or health conditions.
The vaccine offers a lot of protection – but no jab gives 100% immunity and there is always a risk of catching the virus, particularly as cases rise.
Holly’s condition means she is immunosuppressed and studies have shown that only around 54% have developed antibodies in response to the vaccine, and for those who have, it is often at much lower levels.
For these people, many feel they have to continue to wear masks and practice social distancing when outside their own homes but they can’t control what others around them do.
According to Sense, 56% of disabled people the charity surveyed said they were now fearful of going into public because of concerns about their health and not feeling safe.
Holly says: ‘I am worried that now social distancing is going, table service at bars is stopping and mask wearing is personal choice. I feel like I’m probably just not going to be able to go out.
‘I don’t want a return to lockdown but I think there is a middle ground between that and getting rid of everything. We could keep masks and social distancing until more people have both vaccines.
‘Anyone can be immunosuppressed for all sorts of very reasons. We don’t get that choice. We do try and protect ourselves and deal with it the best we can all the time but that this decision has been taken out of our hands.
‘If people would just continue to wear masks and practice social distancing for a little bit longer, that would really help people like me feel just that little bit safer.
‘I’ve been ventilated when I had my transplant and had to spend six weeks in intensive care. I am still traumatised by it and I never want to experience it again but if I got Covid it’s very likely that would be my fate.’
The recent announcements have had a real impact on Holly’s mental health as she feels she will be isolated once again.
Holly adds: ‘I just won’t gamble with my life. People with both vaccinations are still getting hospitalised and dying from Covid. I’m not ready to die.
‘I’ve had to watch my friends meeting up and going on holiday and it has been really difficult to stay positive.
‘Despite everything else, I’ve always managed to find hope – that’s always been my motto. Right now, I’m really struggling to find any hope in the current situation.
‘I hate lockdown and hate being stuck at home – I had such an active social life before the pandemic. There’s nothing I want more than to get back to that but my life is at stake here.’
Jane Manley, 58, from Surrey, is also in the high-risk immunosuppressed category because of an ABO incompatible kidney transplant.
This means her transplant is not compatible with her blood type but modern techniques allow the kidney to function.
Jane is also registered blind and has a guide dog named Rosie.
She says: ‘I feel like after the latest announcement about rules changing, nothing is different for me. I will continue to stay at home and shield.
‘I will potentially die if I catch Covid because of the nature of my transplant and my disability makes it more of a worry.
‘If I was sighted, I wouldn’t need to touch everything and I could see where I am in relation to other people to be able to distance or see they aren’t wearing a mask.’
Like Holly, Jane has been told there is a high likelihood the vaccine won’t have worked as well for her as it does in the rest of the general population.
She plans to continue staying inside as much as possible and will wear a mask when she goes out, but does worry that she will be judged because of this.
She says: ‘I’ve had bad experiences just as a blind person during the pandemic, with people being very rude to me if I don’t walk on the right side of the road or sit in an appropriate chair because I can’t see something.
‘I fear situations like that being replicated because I’m wearing a mask or because I’m having to visibly use hand sanitizers after I’ve touched everything. I know that if someone’s looking at me, they might think I’m being overprotective, but they won’t understand why.’
Jane has also made a huge personal sacrifice during the pandemic, sleeping in a ‘makeshift bedsit’ in her dining room to try to protect herself from her partner who works as a train driver.
They know that this situation will have to continue as cases rise because of the risk of him passing something onto her.
Jane adds: ‘It fractures your relationship. There are so many things we don’t have. We can’t hug on the sofa anymore. Instead we sit in separate rooms and shout through the wall – it’s not a proper conversation.’
As a blind person, staying inside also makes it more difficult for her to remember places and her guide dog is not working to the best of her ability.
‘There is this percentage of the population where nothing has changed and we almost feel abandoned. I don’t think everyone should stay in to protect me now but I would just like someone to remember that I am here,’ Jane says.
Liz Johnson, a Paralympic gold medallist and co-founder of The Ability People and Podium, adds that she would like to see individual companies step up to allow vulnerable people to still go out while feeling safer.
She has cerebral palsy and falls into the clinically vulnerable category.
‘Personally, I’ll be continuing to keep my distance from others and wear a mask because I know that being double vaccinated doesn’t mean I’m invincible and that I’d likely become very unwell – and certainly unable to do my job – if I did become infected,’ the disability campaigner says.
‘But everyone’s going to take different paths out of lockdown. It’s important that people are able to make their own choices and that there’s measures in place to mitigate the risks which come with this.
‘For example, that train companies provide separate carriages for those who choose to keep wearing masks and those who don’t.
‘Individually, all we can really do when ‘Freedom Day’ comes, is be kind and caring, respect others’ decisions, and be aware of how everyone’s situation is different.’
Although not classed as clinically vulnerable, Julianne Pona has been unable to have the vaccine because of her severe allergies.
She would like to see mask wearing continue for those who do not have the antibodies to protect them from the virus.
‘I’m allergic to peanuts, tree nuts, chickpeas, lentils and sesame as well as a host of medicines including penicillin. As a child there were many times when I was unable to have vaccinations at school however as an adult, I’ve been able to have tetanus and Hepatitis A,’ the CEO of Creative Nature says.
‘I was originally told the Covid-19 vaccine wouldn’t be a problem, but when I went to a vaccination centre they said there was no way they could administer it and it would have to be given to me in a controlled environment ie. hospital. I have been chasing the hospital and am still yet to hear when I can have the first jab.
‘Continuing to wear masks will help stop the spread anyway, and given that we’ve been doing it for a year and a half, is it really that hard to keep going for a bit? This will help someone like me who has had to keep waiting for the vaccine.’
Charities supporting those with disabilities and health conditions agree that the latest announcement puts many in a difficult position.
Jessica Leigh, campaigns manager at disability equality charity Scope, says: ‘Disabled people have been forgotten throughout the pandemic. Six in 10 of all those who’ve died from Covid were disabled people.
‘The Government’s decision to lift restrictions leaves some clinically extremely vulnerable people or those not yet vaccinated at the mercy of others’ goodwill. It does little to reassure disabled people that their needs, and the sacrifices they’ve made, are being considered by the government in these plans.
‘There’s been no mention of people who are at high risk because they either cannot have the vaccine, or who have conditions where the vaccine won’t be as effective, such as those who are immunocompromised.
‘We’re hearing from disabled people who are very anxious about returning to ‘normality’, and said they will be taking things at their own pace rather than the roadmap guidelines. In the rush to return to the office and to abandon face coverings, there will be some disabled people who will be rushing back indoors.
‘Covid 19 is still very much with us, with the Government themselves estimating that infections could soon reach 100,000 a day and that we should be reconciled to many more deaths. Many disabled people will be worried that plans to remove restrictions are gambling with their lives. The government must stop ignoring disabled people in its plans to unlock.’
Sense Chief Executive, Richard Kramer, adds: ‘We cannot afford for Government to forget disabled people again, and allow their concerns to be ignored or for them to be left behind as society moves out of lockdown. That’s why we’re calling for a dedicated recovery plan for disabled people, and for communities and businesses to think of the needs of disabled people as society reopens.’
A Department of Health and Social Care spokesperson said: ‘All vaccines offer some level of protection, even to those who are immunocompromised, so it’s important everyone gets their first and second dose.
‘People who suffer with long-term conditions or are vulnerable will want to take extra precautions to minimise any risk of exposure to Covid-19. As ever, if someone is worried they should speak to their GP for advice on how to manage the risks of Covid-19 according to their personal situation.
‘The standard guidance for clinically extremely vulnerable people will be updated ahead of step 4 to reflect the lifting of restrictions on 19 July, if the decision is taken to move to the next step of the roadmap.’
The Department also highlighted that the NHS is preparing for the rollout of potential antibody treatments being investigated by the Therapeutics Taskforce in the coming months.
Current shielding information is available at at Gov.uk.
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