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‘If only I could give my sister my vaccine – but helping her is out of my hands’

Frances and Jo Whiley - William Penrice
Frances and Jo Whiley - William Penrice

My younger and only sibling, Frances, has a genetic disease called Cri Du Chat syndrome, a chromosomal condition which means she is severely learning disabled and has diabetes. When Covid reared its ugly head, my parents and I knew Frances was suddenly very vulnerable and that her life would shrink beyond all recognition.

For a year, she has been pretty much housebound – for the first lockdown with Mum and Dad, because we couldn’t bear not to see her, and later, when it became too much for our parents, she went back to her supported living home where some of her complex needs were better met.

When the pandemic first started, we worried she would struggle to cope without us because her family are her whole world. Frances, 53, is a force of nature, with fiery red hair and a temper to go with it. The truth is, living with her is exhausting for my elderly parents because her condition means that she can be controlling and is prone to outbursts. The syndrome affects around 1 in 50,000 live births and symptoms can include severe cognitive speech and motor disabilities and behavioural problems such as hyperactivity, aggression, outbursts and repetitive movements. Put it this way – there’s no good china left in my parents’ house. She also needs to be with people of a similar age so she is stimulated. The last thing we wanted was to let her go into a care home, but we also had to face the fact that her mental health, and that of my parents, was suffering too.

For Frances to fathom the concept of a pandemic is impossible. It’s hard enough being learning disabled, but since Covid came along she has been bewildered and even further out of step with a world that is not always terribly kind. She loved watching Boris on the news, along with Casualty, her favourite TV show. She knew something huge was going on but didn’t have any idea how it would and could affect her life – and that she was more vulnerable than she had ever been. Yet Frances wasn’t deemed sufficiently at risk, and her vaccination scheduled for the sixth phase of the vaccine roll-out.

Some days Frances was OK, and she would listen to her music or spend all day – and I mean that literally – on FaceTime contacting family and friends. During one of my two-hour radio shows, she’d sometimes ring me 20 times until I’d give in and pick up. Other times she just didn’t bother getting out of bed. There was so little for her to get up for. There are only so many jigsaws she can be enticed to do. She’d also given up on baths. All she’d do was sleep, eat, repeat, ad infinitum. This was worrying of course, but we knew we had to focus on what was most important: keeping her safe indoors until she was vaccinated. Then, we thought, we’d get her back to being the vibrant, chatty, social creature that she is.

We thought she was protected. Except she wasn’t.

Last Thursday, we were told that there was an outbreak of Covid in the home that she shares with four other people and a rotating team of carers. To say this was worrying would be an understatement. When I was first told, my blood ran cold and my head felt like it was going to explode with the terror of it all. All I could feel was an incapacitating surge of adrenaline and fear.

We spent the whole weekend thinking OK, there’s an outbreak but she is isolating in her room and the home is doing everything they can to keep her safe. Late on Monday night Frances’s care home called to say she, too, had tested positive for coronavirus. It was my worst nightmare come true. Just a few weeks ago I was voicing my concerns in The Telegraph about learning disabled people not being prioritised for vaccination, and now here I was seeing all my greatest fears realised.

Some of the residents had been vaccinated, but not Frances due to her GP surgery stringently following government guidelines set down by the Joint Committee on Vaccination and Immunisation, which groups her in with other people classed as severe or profoundly learning disabled. Other GPs have been more cognisant and compassionate in the face of the shocking statistics about the death rates among the entire learning disabled population.

Covid and learning disabilities
Covid and learning disabilities

There are many ironies here. I, a 55-year-old amateur triathlete, was offered the jab on the day that Frances tested positive, having not received hers. I think my GP’s practice classed me as one of her carers, therefore making me eligible. But it just doesn’t make sense to me that the person most vulnerable in this equation is still waiting.

Another irony is that Frances was meant to be coming home last weekend, something she had been looking forward to for weeks. The idea of being back in her bubble with Mum and Dad had been keeping her going, and then suddenly she could not because her care home is in quarantine. She simply couldn’t understand why and has gone from ringing me countless times a day to not at all. For the first time in her life she has not just stopped ringing our parents, but has refused to speak to them at all. This has been devastating for them. The care home are upbeat when we call to check in, but my big sister caring instinct has gone into overdrive.

Jo and Frances with their parents
Jo and Frances with their parents

I used to take Frances into town on the bus every Saturday to buy records. When people stopped and stared, or made comments, I used to unleash my coldest Paddington Bear stare because I was fiercely protective of her and still.

We are just one family living with learning disability, and we have been feeling utterly helpless during the pandemic. The reason I am speaking out is because I care about Frances, more deeply than any words could convey, and I also care about all the other learning disabled people in this country and their families.

Many of my social media followers have learning disabled family members. Time and time again I receive messages like this one from the mother of a learning disabled adult in hospital, who ‘sat watching the parents of a young lady with Down’s Syndrome who died of Covid in hospital, terrified and alone. The last words she said to her mum were, “Mummy, Mummy, I don’t like it.” This young lady was a Team GB Special Olympian, a loved daughter, a talented athlete. I have cried on and off since seeing those parents on Saturday. My heart is shattered for them.’

The learning disabled are the forgotten victims of this virus. I have been watching the heartbreaking statistics unfold and now it feels bizarre to find ourselves at the heart of them. Mum’s greatest fear is that Frances has to go to hospital and because of Covid restrictions she won’t be able to go with her. This has been our biggest fear since the start of all this. Mum keeps saying: ‘if only we’d had her home’, ‘if only she’d had the vaccine sooner’. If only I could have given her my vaccine. There are so many if onlys. I wish there was something I could do, but her protection is out of our hands.

Read more: ‘My brother is one of the Covid vaccine forgotten’