Supporting the NHS is important, but disabled people need some support, too.
After forty-eight hours with agonising foot pain, 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 at any time in my more than twenty-four years before. Nothing, but nothing eased the pain.
The day before had been a glorious sunny day. I’d flirted with my husband in the front garden and that was when disaster struck – I went over the edge of the path, taking all of my sausage rolls and Christmas puddings onto my right tippy toes. I knew something was wrong almost instantly because my foot was burning, with a stabbing, achy pain. A pain so intense that I could hardly breathe. Still, I decided to tough it out for an hour or so and see if it wouldn’t settle down.
“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 isn’t that much of a deal when you live with it everyday.
So if I say that it really hurts, then you know that it really, really f**king hurts.
“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 prepared for such a bizarre experience that it no longer really phased me. Having a mother in the care industry kind of helped soothe my nerves, too.
“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 he 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 that 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 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 a chord. 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, a bllood cancer. My beautiful, loving, strong and doting Dad had cancer. Still, even when faced with news that would ultimately end his life, my beloved 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 scan 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 get 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 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.
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 now I was worried about me, too. I didn’t want to go and make my condition any worse!
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 there. I’d already been told not to eat my dinner prior to attending in case they had to cut me open and now I was the topic of a feud. I’d only wanted some advice, and now I was half expecting some same-day surgery. Suddenly, my visit to A&E was the stuff that not even nightmares are made out 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.
A Carers Card? We’d never even heard of the Carers Card Scheme until now. 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 of 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 my way 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 Mum’s 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, it’s become about it’s ‘superhospital’ status. Mum is still shaken up and angry by this incident and even my words of consolation have had little impact. She tried to seek treatment for her psychological welfare from her own doctor, even in spite of no longer having much faith in them.
Perhaps though, the saddest part of all of this 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 that incident.
Now, my little blue heart is still.