With the easing of lockdown, you’d be mistaken for thinking that the world was returning to some sense of normality, but this is not the case for disabled people, writes Rachel Charlton-Dailey
It’s been highly frustrating seeing everyone “go back to normal” when disabled people still feel unsafe to do so. When I heard that the government were announcing schemes to help the public get back out I expected some provision for health – maybe more doctors or nurses or appointments or taking hospital clinics into community primary care centres.
So I was shocked that the extent of this was money off meals out, this is no good for those of us with low immune systems. I don’t know when I’m going to feel safe enough to go to a restaurant again, if ever. And a half-price voucher won’t change that.
While we all shield indoors, many of us with disabilities have barely left the house over the last five months. We expected that those we rely on for our health care would have our backs, but we were let down. We feel neglected and ignored by the government and inadvertently the NHS as tackling the spread of the virus became a priority.
I suffer from chronic migraines, asthma, celiac disease and depression but I feel my illnesses are under control enough that I don’t need constant monitoring. I see a musculoskeletal rheumatologist every nine months for lupus, arthritis and osteoporosis.
The one area I was let down was unsurprisingly my gynaecological care. I say unsurprisingly because it’s been an uphill battle for over a decade to have my chronic ovarian and pelvic pain believed. When after six years of countless tests and I had reached my limit with being patronised by doctors, I began self-advocating for my own hysterectomy, I was treated like a child who didn’t understand her own body. One doctor even asked me if I realised this wasn’t reversible. Thankfully I eventually got the operation, but my condition still remains undiagnosed.
In December, I was put on Zoladex injections, which induce chemical menopause. As lupus can cause blood clots, I have to be careful with any treatment that involves hormones so I was told I could only use it for a maximum of four months.
Unfortunately, my gynaecology review fell just as the world went into lockdown, so I was told I could either stay on the treatment or come off it completely with no alternative. Not prepared to be plunged back into pain again I took the risk, surely I wouldn’t be waiting too long?
We’re now six months into the pandemic and I’m deep in the menopause. My body has changed in every way, some days I can barely walk from pain and I’ve had to up the dose of my antidepressants. My next appointment in mid-September will take place over the phone, and because they can’t review my health in person, I feel strongly that my treatment plan won’t change.
I have also struggled with delays in my Zoladex injections being administered late due to lockdown. As Covid-19 has either taken a priority or meant that health centres are short-staffed. My end of March injection was cancelled six times and was almost a whole month late. I spent most of that time in excruciating pain and when I cried on the phone to a receptionist I was reminded there was a pandemic happening.
Unfortunately, I’m far from the only one, as part of the online disabled community I’ve heard from people with reproductive problems, mental health issues, those about to give birth, chronic illnesses, newly diagnosed or in remission with cancer and more all just feeling utterly abandoned by the NHS and the government because of the pandemic.
Ellen Morrison is under eight different hospital trusts across London for Ehlers-Danlos syndrome (EDS), Postural tachycardia syndrome (PoTS), mast cell activation syndrome and suspected endometriosis. She’d typically have eight appointments but over the last six months, they have become two phone appointments and one phone assessment.
“Over the past few years, it’s been a lot of work to get access to the healthcare I need, sometimes spending years on waiting lists for clinics. I feel like the pandemic has made accessing the healthcare I need almost impossible. I have no idea when I’ll get back to where I was pre-pandemic,” she tells me.
For Ellen, she regularly has dislocations and injuries due to EDS. She’d constantly seize up so she found a physiotherapy appointment to ease the pain. In May, this was changed to a phone appointment – but the call never came. Instead, she was copied into a letter to her GP informing them she’d get a new appointment when clinics reopen.
After months of asking doctors to take her suspected endometriosis pain seriously, she underwent an ultrasound where they found irregularities. But doctors told her it would likely be some time before this can properly be investigated again. “Each month I’m in tears from the pain,” Ellen explains.
Ruby Rouson had appointments for colonoscopy, laparoscopy and gallbladder surgery, and an ultrasound scan on her underarm but due to lockdown, they have all been cancelled.
“The colonoscopy has taken two to three years of fighting and I’ve not heard anything about rebooking it yet.” She told me. A running theme in this piece, Ruby also struggled to get help with her reproductive health. The appointment to remove her Nexplanon contraceptive implant in March was on the day the surgery the lockdown commenced. It took five months of begging and panicked late-night emails to get it removed.
“Honestly, there are more procedures, but I can’t keep track of them all. It’s felt so disheartening.” Ruby tells me.“Covid-19 has just added to the nerves and unease about getting forgotten about and lost in a system that’s too overworked to function properly. I’d feel better if there were at least occasional updates, but there’s nothing”.
James Taylor, Executive Director of Strategy, Impact and Social Change at disability equality charity Scope, said: “When lockdown began, access to healthcare was one of the main worries for many disabled people. Research shows that more than a third of disabled people have had difficulty getting medical consultations, treatments or services,1 which poses risks to their health.
“59% of disabled people feel concerned they have been forgotten by the Government. Amidst a pandemic, the needs of disabled people cannot be forgotten when it comes to something as critical as healthcare. Disabled people must get assurances around safe and prompt access to healthcare support both now and in the future.”
It’s understandable that the pandemic has taken priority, but it shouldn’t be the only health condition that is taken care of. If continues, coronavirus may not be the only killer illness in this pandemic.
Image: courtesy of Rachel Charlton-Dailey and Ellen Morrison