Protecting the NHS is important, but disabled people need some support, too.
I sit here still shaken and perturbed by what happened on Saturday evening. After forty-eight hours with agonising foot pain after a fall on Thursday, I finally made the call. I’d tried strapping it, resting it, icing it and taking more pain relief in the twenty-four hours that followed than I’d taken in any twenty-four hour period before. Nothing, but nothing had much impact.
“I think I need to make the call” I said grimly. It wasn’t easy for me, I’m not someone who gives in willingly, especially not now that I have Reflex Sympathetic Dystrophy. A little pain just isn’t usually that much of a deal when you live with it everyday.
So if I say that it really hurts, then you know that it’s probably pretty bad.
“Do you want to call 111 and see what they suggest?” Mum asked, I agreed. I didn’t want to be an added burden on the NHS right now anymore than they probably wanted me to be. From my experiences, I knew they’d be pretty busy.
“The thing is,” the nice NHS direct lady said when I explained my thinking, “that’s what the hospital is there for. If you’re sick or injured, it’s probably best you go.” Reluctantly, I agreed. It was going to be weird with everyone socially distancing and wearing face masks and visors, but I was already so prepared for such a bizarre experience that it no longer really phased me at all. Having a mother in the care industry kind of helped soothe my nerves.
“Can I come with my wife, or just her mother?” Matt asked the receptionist at A&E. He’d called ahead of time because under circumstances like these, they both make up part of my care team. My husband doesn’t currently drive but is my primary carer, and my mother drives and knows my medical history in great detail. Between them, they can help me access almost anything I need or want to.
“No, just your wife, just the patient” the receptionist said abruptly. Matt and I looked at one another, he knew this was going to be hard for me to do without his support.
“Call me when you get out” he urged, I nodded. I took this to mean that only I would be allowed onto the radiology ward maybe. Annoying, but no big deal.
Mum wound slowly through the hospital’s roads and the site of the main building struck me. I grimaced with pain, both in my foot and in my heart. The hospital is no longer an attractive landmark of my area to me but a reminder of the last time that I was there. Those days, the final days with my father.
It was a trapped nerve in his neck, that was what they told us. Even when he presented at A&E, they made the same diagnosis and sent him home again. I thought he was being melodramatic, a hypochondriac, just as Dad sometimes was. Sometimes Dad was in pain and we rolled our eyes. If he’d just stop spending so long on Google, we agreed, he’d worry himself a lot less.
“It’s not good news, I’m afraid” the young doctor began, “you’ve got Multiple Myloma”. I was in the room when the news was delivered. Multiple Myeloma. Cancer. My beautiful, loving, strong and doting Dad, had cancer. Give him credit, even when faced with news that would ultimately end his life, my Dad still shook her hand.
At this point, it’s understandable to wonder where the NHS failed him. If they detected it, then surely they succeeded? My friends you see, the Multiple Myeloma wasn’t detected until it was too late. The MRI which helped the doctor make the diagnosis was only ordered when my father was rushed into A&E, crying with pain, delirious and experiencing high calcium levels. When my mother begged for an MRI scan of my father’s neck, his doctor refused. According to her, only cancer patients got MRI scans.
Had she ordered the MRI, maybe the Multiple Myeloma would have been detected sooner, maybe treatment would have been successful, and maybe my best friend would still be alive today. Instead, she didn’t order it, he didn’t start treatment until it was too late and the man that I looked up to and doted on died in ICU among a heap of tubes and machines. All credit to the ICU team though, they were truly amazing.
Upon arrival at A&E, the sight that greeted me was nothing like I had seen before. There was a white PVC gazebo creating a waiting area between those who were waiting to sign in, and those who had signed in. There were bottles of hand gel, disposable face masks and the infamous social distancing markers. As we entered the hospital, a presumed prisoner was escorted from the building with two police officers in tow. Mum had provided us face coverings from home, so we fastened our scarves, cleaned our hands and waited behind the yellow-tape line.
Even in spite of me dialling 111 and being told to present at my local A&E, the receptionist had no recording of my impending attendance. Even when Matt called up and gave my name again, she had still somehow not logged that I was on my way. When I, in a very anxious state, gave the receptionist my name, her words to me were “Okay, so what are you telling me that for?”. Where is the care, where is the compassion, and why in there the need for such an attitude?
Back in 2010, patient care was our primary concern. No matter how they acted to you, you treated the patient with respect. Even if they really, really infuriated you, you didn’t let it be seen. When a child popped a packet of potato crisps on the floor and walked off just as I’d finished folding and stuffing more than 200 H1N1 vaccine letters and had shredded my hands to pieces, I didn’t curse his mother out or tell her to come back and clean up the mess. Instead I smiled, fetched the dustpan and brush, and cleaned it up myself. That was just what we admins had to do.
With my details logged at reception, the receptionist told me something that nobody had prepared me for;
“Mum won’t be allowed to stay”.
While I was in A&E for heaven knows how long and in spite of my disabilities, my Mum wasn’t allowed to stay. The lady who was watching me and making sure I didn’t have an anxiety-related meltdown or take a tumble on my crutches was told that she would now have to go and stay in the car. I looked at Mum and Mum looked at me. She was worried about me, and I was worried about me now, too.
Around us, groups of ward visitors chatted and none of them were socially distancing. Even at reception, three administration assistants huddled closely together for a chat and only one of them wore a face mask. Even as I waited to give over my name, the receptionists carried on chatting. None of the groups of people had been moved on, but for my Mum, who was attending as my carer, she couldn’t stay to keep me company.
“How long is the wait time?” Mum asked, the receptionist shrugged.
“Are you going to be okay?” Mum asked me. I nodded, but I knew I wasn’t. A&E was the very last place that I wanted to be, especially alone late on a Saturday night. As Mum turned to leave me, I felt my anxiety spike up.
“No Mum, I want to go home” I said through my tears. My foot hurt, but it didn’t hurt that much. It’s weird how fear can do that to the body.
“No! Stay, listen, you’re logged in now. I’ll just explain to them that I’m your carer..”, the receptionist refused to listen.
I stayed staring at the floor. I wanted to be anywhere, anywhere but here. I’d already been told not to eat my dinner prior to attending in case they had to cut me open to fix any broken bones. I’d only wanted some advice and now I was mentally preparing myself for same-day surgery. Suddenly, my visit to A&E was the stuff that not even nightmares are made of.
I could overhear the arguing, Mum argued that I’m a woman with multiple disabilities and I need a carer with me to make sure that I can talk to the doctor and to make sure that I don’t have a fall. The receptionist, who I decided not to defend for the attitude that she’d taken with me, argued that I don’t need a carer if my Mum doesn’t have a Carer’s Card for me.
A Carers Card, we’d never even heard about the Carers Card Scheme until Saturday. Suddenly, Bristol City Council were now failing me too!
We left, but not before Mum made a big scene.
“Ladies and gentlemen! Can I have your attention please?” Mum began, “My disabled daughter has just been refused treatment for a broken foot because she needs a carer with her, so clap for the NHS if you want, the NHS have failed her..”
“Umm, excuse me..” the receptionist interrupted, trying to get Mum’s attention,
“I was in this department last year with my husband and they misdiagnosed him then” Mum continued, “five weeks later, he was dead!”.
You could feel the anxiety in the air after that. Some I think booed at Mum’s visible display and anger at the NHS, and others I believe really were booing the NHS. If they misdiagnosed Dad and failed me, then maybe, just maybe, they could fail them, too?
I clicked my way out of A&E as fast as my crutches could carry me. I didn’t want any attention drawn to me, and now I was at the centre of it all. The A&E department fell silent in the wake of us, and the loudest sound to fill the air was the click, click, click of my crutches as I hobbled my way out of the doors.
I managed to click over to where Mum waited and we drove home in a bizarre atmosphere- cold, angry, anxious and numb. As we pulled around the corner, I became aware of Mum’s tears.
“Hey, what’s wrong?” I urged.
“I just feel like I failed Dad and now I’ve failed you too” she admitted between sobs.
“Don’t be silly!” I said, wafting away the suggestion, “You didn’t fail Dad and you haven’t failed me, the NHS failed us both.”
Back at home, I still didn’t feel that my night was over and I half expected a visit from the police after that little demonstration. Part of me even had to Google if I could be fined for leaving the A&E department once I’d signed in for treatment. No, the answer is no. That’s good.
The stark reality of this situation is how much I now need to look after my health. I no longer have any faith in my local hospital and I’ve refused to go back since, even if my foot hasn’t improved that much. Mum was right, the community life it once had is no longer there. Mum is still shaken up and angry by this incident and even my words of consolation have had little impact. She’s now planning to seek treatment for her psychological welfare from her own doctor, even in spite of no longer having much faith in them.
More than anything, I want you to be aware of the current situation in your local hospitals. Hospitals are saying that they are open if you need treatment during the Coronavirus pandemic, but all is not as it seems. Some people do need some assistance, some people do need a carer and some people do just need someone with them for a bit of emotional support. In the UK, we’ve been allowed out with members of our household for a while and disabled people can be accompanied by one person if they need help to go shopping. Given that then, I don’t see how a disabled person should have been prevented from being accompanied by a carer in order to be able to attend the hospital.
Perhaps the saddest part of all of this for me was losing my “little blue heart”. Even if I didn’t clap on Thursdays (because clapping hurts when you have RSD in your wrist), I was at least immensely proud of the NHS with their efforts against Covid-19 and I was immensely proud of being able to be part of my local NHS team during a previous pandemic. Even if I didn’t clap, my little blue heart beat strong.
Not anymore, not after Saturday.
Now my little blue heart is still.