The UK National Health Service turned 70 on 5 July, and celebrations are ongoing as I begin this piece. We have a public health service that is the envy of the world and many of us are fighting the creeping privatization that has grown over many years, and to keep it as a no-cost service for all who need it. I was born some two and a half years after it was founded, so have always known it and benefited from it. I consider myself to be in very good health, but some of you who read to the end of this article may not agree with my self-perception. However, I am thankful for the care I have received that helped me get and stay the way I am, and kept my parents alive beyond their expectations.
Apart from routine visits to the general practitioner (GP) for everyday ailments, the first more serious encounter was when aged 38, I had a miscarriage and needed attention. I was OK, if a little sad, but had read enough to know that this was not preventable, and there was nothing I could have done differently. However, I was still grateful for a doctor who sat with me beforehand and explained what the procedure involved and also reassured me that there was nothing I could have changed. He was also there when I came round from the anaesthetic, explaining that the procedure had worked and offering space to grieve if I needed it, which I didn’t. The woman in the next bed who had also come in with a miscarriage reacted differently though, blaming ‘God’ and herself and the shame it had brought on the family. Some of you might think she was from a minority ethnic background, but she was white and English, showing how reactions to trauma can cut across class, culture and ethnic group. I was there overnight and felt cared for.
My next serious encounter was a couple of years later when I was pregnant with our daughter. I was classed as an older parent as I was 40 and this was my first child, so I felt the services kept an extra eye on me. With almost a month to go, a routine test found I had pre-eclampsia, with high blood pressure and ankle swelling. This can be dangerous for the baby and the mother if not treated, although it is quite common in first pregnancies, but the NHS took no chances. I spent the last month of pregnancy in hospital, totally resting and having the time of my life. This was because amazingly, I was allocated a single room, and am glad to say I loved the food. So different from the stereotype image of hospitals. There were no private facilities like toilets, televisions or audio-visual pods but I spent the time categorizing and labelling the photographic slides we had collected, reading and also finishing off my work before I took maternity leave. I don’t consider myself to be that sociable, but I found it easy to talk to other pregnant women there, and did the rounds in the wards daily. As I was there for so long, I saw many women come and go. It was interesting to track other women’s progress and the advice they had been given. I learned a lot. We had planned a natural birth but a week before my due date, the consultant found baby was lying across the womb rather than upside or downside, and they advised a caesarean operation. Again, the care was excellent, I felt I was given space and choice, and baby Kiran was born a week early, just a little distressed and cold but otherwise fine. I will always be grateful to the anaesthetist who visited me just after the birth, and who latched Kiran onto my nipple so she could feed. Also the amazingly strong painkillers!
Roll on another 16 years to 2007 and the discovery of a lump in my right breast. When I was growing up, breast cancer seemed to mean certain death, but now the chances of cure and survival were much, much higher. It was a weekday and luckily I was working from home so was able to get a doctor’s appointment that day, and a referral to the hospital for a mammogram a few days later. Within two weeks I was booked in for surgery and had the lump removed. I stayed in a single room in a brand new Urgent Care Centre for four nights, by this time with a media hub which you could pay for. So good to have enforced relaxation, and the painkillers again. I had to return for a second operation as the lump was bigger than they thought and had not been completely removed, but this time I only stayed overnight. The cancer had been found in one lymph gland, which meant I was offered chemotherapy as well as radiotherapy. I discussed the risks with the specialist and decided to just have the radiotherapy, not wanting to take on extra discomfort unnecessarily. I went back to work after two weeks, and a couple of months later worked from home for a month while I had daily radiotherapy at a hospital 20 miles away. I had no side effects from the radiotherapy and never felt ill with the cancer. I was a cancer survivor but didn’t feel cancer was part of my identity. The after care was brilliant, with regular check-ups, medication and access to advice. In a way, I was so blasé about the process that Kiran said much later with no unkindness at all, that there hadn’t been space for loved ones to grieve or be shocked, which was a thoughtful observation. Looking back through my diary for that period, I can find scant record of the operations, when I returned from hospital and the amount of time I was off work. My diary is full of meetings and work commitments; no space to be ill. I wonder how emotionally healthy that was and if I was masking my feelings, but it didn’t seem like that at the time, and I recovered well with no recurrence.
In 2009 I less dramatically had operations on both feet to remove painful and debilitating bunions. I had endured these for about 10 years and in winter they would host chilblains which swelled my feet made walking painful and sore. In 2001 I had been referred to a consultant at the hospital who had dismissed me in a humiliating way, in front of a male student, as ‘needing to wear bigger shoes’. This is the only time that I have felt patronised and demeaned by a clearly old school misogynist male clinician. Bigger shoes did not help, nor did toe separators, bunion pads or anything else I tried. Finally, a wonderful woman doctor I saw locally referred me for surgery, saying that I deserved quality of life. The bunions were so painful that I was finding it difficult to run, and to find shoes that fitted, which was affecting my fitness and my mental health! Again, I had superb care as an outpatient and I love my new feet, which have carried me thousands of kilometres since then.
Time again passed, with a very bad manager at work prompting my early retirement in 2010, plus a wonderful almost 18 months in Solomon Islands. This was followed by difficult times for Kiran while she finished her degree and struggled with life and adulthood, and I was forced to reflect on the part I had played in her difficulties. We also tried to buy a flat for her in London, which I negotiated alone as Brian was away, and which then fell through when she was revising for her finals. A second flat was found and this time progressed to completion but we nearly lost that one at the last minute too through no fault of ours.
The cumulative stress may have taken its toll and in mid 2013 I developed pain and stiffness in my joints and muscles, that kept me awake at night and affected my arms, shoulders and hips. A combination of being away on home exchanges, plus my doctor being away on holiday and me not really knowing what to do meant I didn’t see anyone about it for three months, by which time I was unable to exercise and felt dreadful, wanting to lie down but knowing even that didn’t help. I use the internet a lot to get advice and information on health matters, even if at times it’s alarming. For example, I read people’s accounts of radiotherapy when I had breast cancer, that some took two days to recover from a session and were in a great deal of discomfort; some people who took the drug I was prescribed had side effects and so on. So you hope for the best for yourself, and happily I feel I have had the best.
I self-diagnosed with Polymyalgia Rheumatica (PMR), which Brian’s mum had had for several years but had subsequently recovered from. I read that it most often affects white women over 50 in the northern hemisphere, yet I am not white. I read that it is not life threatening (hooray!), can be easily treated with cortico-steroids and can leave the body in around two years once the body makes its own cortisone again. When I finally got an appointment with my doctor, she sent me for a blood test, but again, due to staff holidays and me not treating it as urgent enough to make an emergency appointment, I didn’t get the results for a few weeks. I can’t believe why I waited, as I was in so much pain. Some ridiculous belief that it wasn’t urgent enough and because it wasn’t life threatening maybe? We were soon to be going away for four and a half months and I couldn’t face travelling with such pain. When I saw the doctor she was clearly not used to managing PMR and wanted to refer me to a specialist straight away, but we were going away and there were no appointments available before then. My sister in law was a nurse on the South coast where PMR is very common and general practitioners (GPs) manage it themselves. She advised me to go back to the GP and press for steroids. I also discovered a wonderful PMR support group where the woman on the helpline offered to telephone my GP to put the case for urgent attention with steroids. Later I read that if untreated, PMR can develop into another disease, which is life-threatening, so I was glad I had gone back. From then on life was better as the doctor took me seriously, issued a prescription, and within a week the steroids took effect and the pain reduced.
All that was five years ago. So I started on a relatively high daily dose of steroids that coincided with a four and a half month block of travelling, but in comfortable circumstances. I was so happy to be almost pain and stiffness-free, and to have energy again. I vowed to use the first month, spent in Solomon Islands, to regain some fitness. I had read about steroid weight gain, and ‘moon-face’ and hoped to avoid it. I couldn’t face running in Solomon Islands heat, but developed my skipping skills on the balcony in the mornings, and also swam every day. By the time we were in Cairns five weeks later, I was able to try running and cycling, and felt fit and well – as long as I took the drugs. I have never gained excessive weight, perhaps because I fear it so much. However, I can see how easy it is for the chain of pain=low energy =low motivation or inability to exercise = low mood = comfort eating = weight gain to take hold and be hard to break. My mother died while we were on this trip, and I have still not fully dealt with the grief and guilt that followed, for not being there for her and for the many things I had to leave unsaid. I rarely believe in cause and effect for these things, so do not link my ups and downs directly to her death, though acknowledge they may be associated.
Back in the UK my GP tried to manage the PMR by reducing the steroid dose as quickly as possible, and though the full-blown PMR did not return, I still had continuing shoulder pain. Ultrasound scanning revealed inflammation of specific shoulder tendons and this has been a recurring part of my PMR, often mistaken for the condition flaring up, when I am just getting withdrawal from taking a reduced dose. After a year, the GP was worried that I was not able to reduce my steroid dose enough, so referred me to a rheumatologist, under whose care I remain. She is a woman who listens and is willing to try different paths. With her help, I slowly reduced the dose some more, and with the help of intra-muscular steroid injections even cut out the tablets all together for six weeks at one stage. However, the arm pain and stiffness returned below a certain daily dose, so I was kind of ‘stuck’. It was never as bad as in those early days, but did interfere with sleep and my ability to exercise, though ibuprofen tablets helped but are not a long-term solution.
As well as the PMR, I have another auto-immune condition psoriasis, which can be anti-social and annoying, but is also not life threatening. Over the years, I must have spent hundreds of pounds of NHS money on creams and gels, but it has persisted. Very recently, my rheumatologist suggested that I might have Psoriac arthritis, and has prescribed a weekly dose of the immune-suppressant drug methotrexate, plus a supplement of folic acid. Internet research threw up a list of negative side effects, with some women feeling ill for two days after each dose. After 6 weeks I can report no side effects, and no adverse blood test results. Blood tests are taken every two weeks for the first six weeks, as the drug can affect the liver, kidneys and many other organs. Serious stuff! I am told the drug will help the psoriasis but so far there is no effect on anything – but I have to wait. One downside is that I cannot drink alcohol while the drug is in my system, which limits it to three days a week and then only a little. Probably no bad thing, and better than a total ban.
I am SO grateful that we have the National Health Service. I am over 60 years of age, so automatically don’t even pay for prescriptions. Yet the current government is dead set on privatizing our greatest asset, despite ample evidence that the UK system is cost-effective and outperforms other wealthy countries (1); continuing scandals on what the private sector has done to our schools, care homes, prison service, railways and other former public assets. Ideology and personal greed seem to be triumphing over evidence (2). As the late Stephen Hawking who acknowledged that the NHS kept him alive for most of his life said:
“…the NHS has always been political. It was set up in the face of political opposition. It is Britain’s finest public service and a cornerstone of our society, something that binds us together. People value the NHS, and are proud that we treat everyone equally when they are sick. The NHS brings out the best in us. We cannot lose it.’’ (3)
I have pledged to fight. And with the NHS helping me to manage my high blood pressure, I will survive!