“Can it wait until tomorrow?” I asked my friend when she told me I needed to go to Urgent Care. The ugly red rash on my lower leg had been rapidly spreading upwards and did not look good.
I felt as if I had flu and indeed had assumed that a fainting episode the previous morning was due to a common virus and that I would just need to ride it out. As it was I had lots of things to do and an unplanned visit to hospital on a Friday afternoon would seriously impact on my schedule. Paracetamol every 4 hours was helping me maintain a semblance of normality.
“No, it can’t wait, said my friend. That looks like Cellulitis and it can be very dangerous.” I vaguely remembered a friend of a friend who had been hospitalised with Cellulitis after being bitten by a spider in Serbia but I was not aware of having been bitten and I could not imagine how I would end up in a similar situation.
The duty doctor in Urgent Care did not feel qualified to make a diagnosis. I was to present myself instead at the Acute Medical Unit (AMU) of Durham University Hospital. On the way I stopped at a supermarket and bought a few vegetables, fully intending to cook tea later on that evening.
Staff on the AMU were expecting me. Blood and urine samples were taken and I had a chest x-ray. My temperature and blood pressure were recorded. The Paracetamol was wearing off and the red rash continued to spread. I did not feel good. Eventually I was admitted and told that a consultant would see me in the morning when all the test results were back.
I called my son and asked him to bring me a nightie and toothbrush. When he came late in the eve he knelt by my bed and cried; I was a pathetic thing, drifting in and out of fevered sleep, barely able to lift my head off the pillow or hold a conversation. The curtains around my bed were closed. Through that long, lonely first night I was woken every 2 hours by a young Lithuanian nurse who took my temperature and blood pressure and, when morning came, a black South African agency nurse took over as my principal carer.
There were 3 other women in the room, one who was discharged quickly whilst the other two remained, both waiting for lumbar punctures. The consultant on weekend duty, a doctor of Indian origin, did indeed diagnose Cellulitis and I was promptly hooked up to an intravenous supply of hard-core antibiotics. As the day wore on various nurses and orderlies came and went making sure we were fed and watered, our beds made and our bodies washed so that we could be as comfortable as possible in the circumstances. The women waiting for lumbar punctures waited a very long time as more urgent cases took precedence. There was obviously a shortage of staff on the weekend shift.
Everyone on the ward was asked if they smoked and if so would they like help to stop? A visiting husband said he was interested but that the Smoking Cessation Clinic at his local GP surgery only ran on an afternoon and as he worked full time he could not attend. Here was a clear indication of a good idea limited most likely by budget and staff capacity. Where was the joined up thinking that linked preventative public health strategies with the money-saving exercises the health service is so desperate to achieve? Evening and/or weekend smoking cessation clinics or work-based initiatives in partnership with employers and unions would be relatively simple to implement. The long-term cost benefits to the country’s economy through reduced smoking-related illness seem obvious to me. There are estimated to be 10 million smokers in the UK and the NHS spends approximately £2 Billion per year treating smoking related deseases. Yet the treasury earns £12 Billion per year in taxation from tobacco duties. Surely the treasury should be spending more of this money to ensure everyone who wishes to is helped to quit smoking?
Having waited all day for their lumbar punctures the women then had to wait a very long time whilst samples of their spinal fluid were sent to Darlington for analysis, but in the end both were given the all clear and allowed to go home. My visitors came and went and now the long lonely night stretched ahead. The intravenous antibiotics had reduced my temperature and the flu symptoms had all but gone but the rash had continued to grow and was now a throbbing, tingling, stinging hot band around my lower leg. I began to panic. What if the diagnosis was wrong? At my lowest ebb amputation seemed inevitable.
Distraction came in the form of Irene, a very confused and very old lady who was wheeled in and given the bed next to me. She breathed noisily and moaned like a small child or animal. Sleep evaded both of us. I got up and hobbled to the toilet and when I returned I realised she was watching me, her sunken eyes alert to my unsteady gait. I decided that I should at least say ‘hello’ and share some pleasantries with my room-mate, no matter how far apart our minds might be. And there, in the small hours, began a brief but profoundly significant relationship as I sat by Irene’s bed and held her hand, tears pouring down my cheeks, sad for everything we have both lost that is near and dear. Somehow, in a most strange and satisfying way, sleep came easier after that.
In the morning the orderlies came to make our beds. They work in teams of two. A young woman and a very young man attended to Irene and me, chatting all the while. I learned about their holidays and their favourite clubs and pubs. He was partial to corned beef pie! Poor immobile Irene needed to be washed. They pulled the curtains around her bed but I could hear every word. Their love and care for this sad demented old lady was a privilege to observe. “Hasn’t she got lovely soft skin?” said the young man. “You’ve got beautiful skin Irene,” he said, addressing her directly, “just like my Nana’s”. Then he told how he loved to visit his Gran and do things to help her. When the dominant narrative about young people is so full of negativity it was wonderful to witness what I believe is a much truer version of compassionate youth and inter-generational relations. These young people were just starting out on their chosen paths in the caring profession and one can only hope that they and others like them will be persuaded to stay the course despite the long hours and poor renumeration.
Irene and I were joined by Evie and Janet who both needed to be hooked up to oxygen. Evie had a multitude of other tubes and contraptions attached to her bruised body yet this old lady was the most cheerful soul I have ever met. She had a way of laughing through pain so that when the nurses came to insert more needles she could take it in her stride. I want to be valiant like that but still I turned away and bit my quivering lips whenever they wanted more blood. Evie was trying to overcome a chest infection so she could receive yet more treatment for cancer which she thought she had beaten some years before. Her husband was also a cancer survivor but now he had Alzheimers and Evie was his principal carer. So who was looking after him whilst she was in hospital? Her bachelor son had had to take time off from work. They both came visiting, apparently all at sea because the woman in their lives was incapacitated. It transpired that Janet was also a carer, looking after not just a husband but also grandchildren while her daughter went out to work.
I’m no mathematician but if one added up all the unpaid hours of caring duties that these two women alone performed on a daily basis you begin to appreciate the vital role they play in propping up our economy. Neither women begrudged the caregivers’ role but there was an unnecessary burden of anxiety that threatened to impede their own paths to recovery and wellbeing.
Helped along by Evie’s wheezing cheerfulness I became almost jolly that day. The rash on my leg was beginning to reduce in size and redness and the doctor assured me that amputation was not necessary and that he was in fact “quite hopeful” about my recovery. Irene perked up too, singing little ditties and joining in the conversation with random remarks. She also banged a spoon on the table with rhythmic regularity and called for ice-cream, always remembering her manners by saying “please”. This polite persistence was rewarded.
After only 2 nights in hospital I realised I had become institutionalised. The world beyond the ward seemed like another planet. Only the minutiae of hospital routine had any meaning for us; the doctor’s ward round, the nurses with their trolleys of pills and creams, the WRVS with their newspaper round, the bed-makers and the floor-washers, the 3 meals a day, the shuffling back and forwards to the bathroom, the drawing round of curtains, the pumping of the contraption that measured our blood pressure, the taking and labelling of bloods, the waiting and watching for visitors, the softly spoken night nurses giving way to cheerful day staff, the switching on and off of lights.
The weekend over there were other medical professionals who came and went; nutritionists to visit Irene and a dermatologist to visit me and confirm once and for all that I had indeed suffered an attack of Cellulitis rather than the more serious Vasculitis. Poor Evie was told she was too ill to attend the cancer clinic for a biopsy later that week and was subsequently moved onto another ward that specialised in chest problems. Janet went with her and Irene was wheeled off too. I began to feel like part of the furniture as I welcomed 3 new inmates and gave them precise visiting times, excluding dinner times which were inconvenient for staff, most of whom I now knew by their first names.
On his Monday morning ward round the doctor said I could probably go home, but I didn’t feel ready to give up the intravenous therapy; the red rash was still visibly angry on the back of my leg. I wanted the strongest of whatever they could give me and penicillin by mouth did not have the same appeal. However, my arm was sore where the drip had been inserted into my vein so a new entry point was made on the back of my hand where the vein was smaller. Sometimes the drip stopped working and, like a junkie, I learnt how to jiggle the flow to get my fix. Tuesday morning and I had had enough – discharge was imminent. Shortly after lunch I emerged into the hospital car-park blinking, dazzled by natural light and still unsteady on my feet. I was armed with two kinds of penicillin to aid my on-going recovery and a jar of cream to soothe my fragile skin cells. I also had a bundle of personal stories to carry with me about those who care for others whether in the medical profession or whether simply carrying out an affectionate personal duty for a loved one.
Being ill puts one at the mercy of others and reduces us all to atoms of need. I marched for the NHS in Manchester in September 2013. I also joined the Darlington mums on the first leg of their journey from Jarrow to London in August 2014 to raise awareness of the importance of the NHS and the current threats posed by flatline budgets and increasing fragmentation, paving the way for privatisation. I know I speak for Evie, Janet, Irene and all the others and all their family members when I say the NHS matters. Without it some of us may have chosen to carry on taking more Paracetamol and gone home to cook tea and care for our families, ignorant of the serious long-term effects of our disabling conditions. A healthy population is a healthy workforce and valued carers are more valuable than the government can ever imagine.