Tag Archives: NHS

Meaning and Metaphor: Dispatches from the Front Line of an Illness and Disability

I have to confess to being somewhat neglectful in my blog posting of late. The truth of the matter is that having a close family member with cancer for a while became all consuming, our family has had its normal rhythm disrupted. Several weeks ago I came across an article in The Times about the different metaphors we use to describe illness. These it seemed were most often to do with war. I think for the individual affected by serious illness the war metaphors can become both descriptive and prescriptive, many people have described my mum as tough and a fighter. Both are true of her and in many ways appropriate as she attacks life in general with a type of military precision I have found nowhere else in civilian life. I believe it was Christopher Hitchens objected to this type of description, he felt that cancer was attacking him, not that he was battling the disease. I suppose having a positive mental attitude can improve your quality of life, but I am not sure how much impact it has on the progression of the disease.

Spending a lifetime living in this order and routine I now feel adrift, when cancer a strongly disruptive force unexpectedly landed in my wider family life. The strangest thing was that many things carried on as normal. Cancer is a word that makes you stop and take an involuntary deep breath, the surprise comes when you breath out and and find that all other aspects of life are the same, life it seems still happens. The paperwork generated by my disability, normally so deftly filed by my mother has piled up meaning that my once ascetically pleasing work top has all but become engulfed. For several weeks I felt like I was camping out in my own life, just as when you are on holiday, you get to the hotel, live out of suitcases and experience and do things you would not normally do, so to with the wider family experience of illness.

My life has been ordered and routinised by virtue of the assistance I require in order to live. Every day of my life has its own structure, different activity and mini plan. Cancer has disrupted things on every level. So used to being the subject of medical intervention myself it felt like an odd kind of out of body experience to watch it from another perspective. People are always telling me how much I sound like my mum, now I catch myself thinking she sounds like me. She uses medical lingo like a pro and would rival some of my friends from my special school days, comfortably using terms like PIC line and spiking a temperature. For all my adult life my mum has served me well as a clothing mannequin, while shopping she would try outfits against her body to see if the trousers would be too short as we are the same height. I never thought this role would reverse in the form of the loan of my spare wheelchair and pressure relief cushion, the latter becoming necessary because of a serious reduction in body mass.

We have a deeper and in some way better understanding of each other, perhaps that can only come via a shared experience. I have learned to be less idealistic and judgmental of those who make choices for loved ones based on the information given at the time, and we both know well that medicine can be both miraculous and cruel, tearing to the depths of ones soul on both counts.

Recently I was struck by media reaction to statistics that indicated that over 50 percent of woman and 43 percent of man took a drug that was prescribed to them, most “popular” were pain killers, cholesterol medication and antidepressants. The inference being that we could do without these if we just shaped up and pulled ourselves together. It saddens me greatly that even in the 21st Century it can be inferred that to experience mental ill-heath is a negative lifestyle choice that should be discouraged. Yes such drugs are costly, but like treatments for cancer and heart disease they save many lives and improve the quality of those lives.

Too Much of a Bad Thing

One Sunday night about 18 months ago there was a knock at my door, I opened it to be greeted by a smartly dressed young man. He proffered his badge and informed me he was working to collect donations for a cancer charity. He gave me a statistic that one in three people will be affected by cancer during their lifetime and went on to ask if I would like to donate money regularly to fund research into cancer and its treatments. I responded that I would give money regularly to cancer charities when neurological disability such as cerebral palsy got the same level of publicity and financial backing.

I have to confess, it had been a bad day. I was coming to the end of my battle with Social Services to obtain support to enhance my quality of life, give me a purpose and help me achieve some life goals. Whatever I did, I felt like I was falling through the cracks. I felt very vulnerable with only family members and a bit of private support I was able to fund with my Disability Living Allowance. It exasperated me that people grasped the need to provide good support services and treatment for cancer but seemed to be blind to my situation.

However, three months ago now my political stance regarding cancer charities came back to haunt me in the very worst possible way. My mum, who had been ill for some months, was finally diagnosed with a rare form of cancer. You see the adverts on TV of people falling backwards having been hit by the tsunami of their diagnosis, that’s exactly what it was like. Cancer has always been in the background, like the mist and fog which comes with the onset of winter. The women in my family carry the predisposition to develop breast cancer, lumps, bumps and breast changes all of which were openly discussed. I was almost blas√©, when my mum told me that a breast biopsy had revealed a high risk of malignancy and she had decided to undergo a mastectomy.

I have to say mum sailed through the whole thing; applying the same logic and fortitude to her recovery as in the past she had to my physiotherapy, that good old ‘no pain no gain’ ethos. Within a month she was back to helping me with physical tasks and even lifting my wheelchair in and out of the boot of the car, not medically recommended. I have to confess to breathing a sigh of relief as the risk, in my eyes, was gone and the panic was over.

Two things are interesting about the current situation: one, the cancer was a type that was entirely unexpected and two, the diagnosis has led to some odd conversations with my mum. For example, immediately after announcing that she had cancer she told me not to worry as my dad would be able to epilate my legs. This was the first of my personal care issues that she reassured me that dad was going to learn to support me with. I find it fascinating that of all the things she could worry about, leg hair was a priority.

I have now found myself judging mum’s health and wellbeing by whether or not she comments on my posture. Historically she has been like a human spirit level when it comes to how I sit and stand, whether my clothes are on straight and if my trousers need pulling up. When she has been really poorly, this level of awareness disappeared and I thought I would find it restful, but found that I do not. I have resolved never to internally whinge about this ever again.

Similarly, now dad has taken over many of the household chores he has begun to apply his engineering training and logic to various scenarios. He has a complex spreadsheet to help him organise the weekly food shopping, column headings are: item; need it; got it. Despite this he managed to forget the milk recently as they fell off the end of his sheet. Interestingly, mum has noticed that the food bill has inexplicably gone up.

Mum has developed more of an understanding of the necessity for television, the lack of which created a 2 day stand off when she was allocated the 1 bed in hospital where the TV did not work. She had been in there for 7 weeks and felt isolated from the outside world. It proved to me that the little things really do matter.

Once someone close to you has this diagnosis, you feel that it is everywhere. Dad and I went to the canteen at the hospital and the lady at the till asked if she could interest us in a cancer awareness badge, I told dad that I thought we were aware enough of cancer without the need for a physical reminder.

Dad’s car previously used to be an engineer’s mobile office and now routinely carries 2 wheelchairs. It has begun to resemble a patient transport ambulance. Dad is now becoming as conversant with the lingo of hospital as mum and me and has to work out what to do when both mum and I have a hospital simultaneously, which has happened more than once.

Dads are much less tolerant of NHS idiosyncrasies, he will ask the question, “Why is that desk so high?” and “Why are all the bins in this hospital foot operated when half the people in here lack the use of their lower limbs?” Compare this with mum’s perspective that yes, in an ideal world there would be a low counter but we have more pressing issues so, we have to pick our battles wisely.

The transition of moving from mum’s care to my dad’s is taking some adjustment for me. Dad and I are not so polished as my mum but, like many British institutions, we get there in the end.

Disability, Fashion and Moving in High Society

The first magazine feature I ever wrote was about disability in the world of fashion, this was a few years before BBC Three’s Britain’s Missing Top Model in which 8 young women with a range of physical disabilities competed to win a fashion shoot in Marie Claire. I had never seen bodies that resembled my own in the world of high fashion, so it became a groundbreaking moment for me.

Previously, the disabled body was confined to the pages of disability equipment or specialised clothing brochures. I was a star of one such photo-shoot for a range of special needs tracksuits, all zips and elastic, functional yes, but certainly not catwalk worthy. I did however, borrow the zip concept recently.

Skinny jeans have become a bit of a nemesis for me. I have tried to acquire the art of wearing this figure flattering item only to be defeated by my lack of body flexibility. Now skinny jeans seem to be remaining a high street staple so I wanted to find a way to make the look work for me. I took my 3 pairs to a local alterations shop, explained my problem and asked if the jeans could be fitted with a zip from the ankle to the knee to enable them to be taken on and off more easily. I was thrilled with the result, a perfect blend of function and style. The alterations cost more than the jeans themselves, but it was definitely worth it.

Adapted skinny jeans

Having a physical disability can all too often mean that style and fashion are denied us, or come at a heavy price. Earlier this year I developed ulcerated feet and I was told in no uncertain terms that my stylish ankle boots had to go and be replaced with orthopaedic soft fabric sandals. I was somewhat put out as I thought my suede/ leather flat ankle boots were sensible enough. From the look the podiatrist gave them you would be forgiven for thinking I had rolled into her office resplendent in six inch wedge platform sling backs. It’s funny but shoes were always one thing that really made me feel different, the thing that no matter what I did, marked me out as disabled. I would be wearing a nice dress and the look would be ruined by my specialist orthopaedic boots, clunky monstrosities in a very limited colour range of black, blue, brown and the much coveted red.

In my life normal shoes were a rare event, reserved for special occasions. I think I remember every pair of normal shoes I ever had and the event that each pair related to. For the wedding of a lifelong friend of my Dad I wore a green and while frilly dress and little black patent shoes. I was bridesmaid at a cousin’s wedding and I had a pair of white canvas pump type shoes to wear under my dress, then on family holidays to the USA and Denmark I had training shoes. I can remember saying once that the underside of my feet hurt after walking in my normal footwear for a while. My parents were puzzled and tried to determine the cause of my discomfort, after some detective work they discovered that it was the terrain itself. The soles on orthopaedic boots are thicker than average and I had never become accustomed to feeling the ground under my feet.

The ability to wear normal shoes was just about the one positive I found in losing my mobility. I no longer had to pay mind to the support my ankles and feet needed. I also didn’t have to worry anymore about how durable the sole was because yay, I wasn’t going to be wearing them out by dragging my feet. However, my joy was comparatively short-lived, I quickly discovered that feet that have been fixed in position by an orthopaedic surgeon do not necessarily comply with or like being introduced to heels. The one time I found a pair my feet could be cajoled into I snapped the heel off the left one when my leg went into spasm and the boot heel was behind the footrest. This resulted in several Star Wars related jokes about feeling the force. To add insult to injury my feet became chronically swollen due to my reduced mobility, so much so that I had to start wearing men’s shoes which are correspondingly wider. I saw the NHS shoe fitter and the made to measure results made my childhood shoes look positively hip. Even my Mum christened the boots the ‘Passion Killers’, which coming from her was a damming indeed.

My friend Lorraine, keen to help solve my footwear issues, told me that Evans one of the leading UK, plus size, high street shops, had EEE fitting boots available. It was a lovely experience to put on a pair of shoes that were meant for a woman. It opened up new possibilities in clothing; I could now wear dresses and I felt attractive. I was determined to hang on to my new acquisitions, I had over 12 months of fierce arguments with my podiatrist before ulceration forced me to give in. I agreed to give the Pullman sandals a go. I have to say I was pleasantly surprised, while definitely not Manolo Blahnik, they were not an assault on my femininity.

The Pullman Sandal

Last Christmas my aunty’s present to me was afternoon tea at the Ritz, we arranged to go along recently and I had a lovely day out with her. The Pullman sandals were donned along with my semi-designer dress. I have to say that I certainly did not feel out of place, clunky or unattractive, in fact I am beginning to think I was a posh Victorian and have inhabited high society in a former life. The Ritz had ramps for my wheelchair, the best dairy-free cakes I have ever tasted in my life along with an extensive range of teas, always a winner with me.

Aunty Sue and me at The Ritz

Adventures of a Sociologist

This week has been a productive one dare I say it. Although looking at my diary I was a little depressed to see that I had three hospital appointments within a 48 hour period. I have began wishing that health care had loyalty points like the Air Miles scheme. Seriously if it did I reckon I would probably have made it round the world by now in first class style. As it is I have to content myself with a lukewarm cup of tea and a slice of dried out toast in the cafe at the hospital.

At the moment I dread my medical interactions. My case is managed by three teams, all of whom have differing Ideas about how to manage my care and treatment. A few weeks ago we had the great, ‘Who is responsible for swabbing the pressure sores on Anika’s foot?’ I rolled up for my regular hospital review which includes any arising issues. I dutifully mentioned my sores. I had not been feeling that great and my legs were stiffer than normal even with the high doses of muscle relaxant drugs that are pumped directly into my spine. I have to concede that yes, pain does make spasticity worse.

One of the specialist nurses took a look and suggested a swab, and then had a mini debate about whose responsibility it was to do a swab of the offending wound. I thought this seemed a little petty. Inwardly I fumed, I don’t care who does it, you, the Queen or even God, whilst outwardly involved deep breathing and keeping a tenuous grasp on my cool. It seems that the swabbing process is not as simple as you might expect. The physical act is simple enough. Lightly introduce small cotton bud like implement to wound and put it in a tube and send it for testing; no big deal. The issue is, ‘Who pays?’ Apparently GPs are charged by the hospital if a swab is done there, whereas if it is done at the practice there is no extra charge. This, as one of the hospital staff pointed out, is far more economical. Also, if they didn’t swab they would not be treading on the toes of the other teams treating me. To cut a long story short, the swab got done and showed an infection. I took the required medication, (it was simple really), I am newly invigorated thanks to antibiotics and ready for a challenge.

This is just as well as I am going to the British Sociological Association’s council meeting on Friday. I started planning for this a month ago and it is only one day in London. The thing is disability, particularly mobility problems, can turn the simplest journeys into a Herculean task. I read, ‘Around the World in 80 Days’ as a child and watched Michael Palin’s 90s recreation of it many years ago as my family were glued to it. They all have a wanderlust that in adult life I have singularly failed to acquire. For me London is a positively exotic destination. When you have to book Boarding Assistance for your train a week in advance and have to arrive 30 minutes before it departs, a day out begins to feel like a package holiday. Also, if I want a specific wheelchair accessible taxi I may have to book it 14 days in advance to avoid the special school and social service transport issues that arise during rush hour. At times my days out and trips to conferences begin to resemble one of those holidays ‘On the Edge’ you see on TV.

Having made it to London, I then had to deal with the people that I met there! The taxi that was taking me from the train station to the venue, dropped me off at the wrong destination. As I looked at the high rise flats I began to question if this was a suitable venue for our meeting. Now, I am not one of those disabled people that gets ratty if you try to help them. I frequently look a little bewildered and unsure when my face is at rest, so am accustomed to Good Samaritans offering assistance. This happened on that day.

A very kind lady buzzed me into what turned out to be residential flats and not the conference centre I was expecting. We quickly established that I was in the wrong place. She was reluctant to leave me in the hallway, as this is a security risk apparently, so she grabbed my handles, pushed me down the road and advised me to wait in the reception of a children’s soft-play area two doors down from the flats and advised me to wait there until my fellow Sociologists arrived for our meeting. She then nipped over to Tesco Express to get me a cup of coffee, I took the opportunity of her leaving to come out of the soft-play area and discovered where I needed to be was only around the corner.

So if you see a 30-something in a bright orange wheelchair, looking a bit bewildered in London one day, it’s probably me. And I only drink tea!

Catheter Life Charts and Other Dispatches

I never fail to be surprised by the bureaucracy within the NHS which then gets thrown in my direction. This week I was scheduled for a routine catheter change, something that has been part of my life every six weeks for almost a decade. The change itself is relatively simple; a short but not necessarily sweet procedure and, until last year, I thought beyond the imposition of NHS paperwork.

It seems I really tempted fate because some well meaning healthcare operative introduced the ‘Catheter Life Chart’. This is a multipage booklet that looks at the process of, need for and alternatives to a urinary catheter. This form was introduced with the aim of reducing ‘unnecessary’ use of catheters and thereby their complications such as the infections having a catheter in situ can cause. I bet you’re thinking great, sounds really positive, what is there to whinge about?

The problem is that the form is not designed for us long-termers, who are managed in the community by a health care team. It is so clearly meant for the hospital ward. Questions include: reason for insertion, removal, change; does the patient understand why they have a catheter; does the patient know and understand how to manage and care for it. I have watched a fifteen minute treatment appointment creep up to almost an hour, just because of this form. I complain fiercely at every appointment, the nurse always tells me orders from on high say it just has to be done! To be fair she did add in the box for additional comments that, “The patient thinks this chart is a complete waste of time and resources”. A small victory for all the prodded, poked, relentlessly scrutinised and documented disabled populace. Two weeks ago I was reading The Times journalist, Melanie Reid’s “The Spinal Column”. She talked about the relentless questions and repetitive documentation that she has also experienced. When you are in clinic or being admitted into hospital, you are suddenly bombarded with these questions about your day to day care needs, ironic really as I often think as I am answering, “Yes, and when I was struggling to get my jeans on without falling out of my wheelchair this morning, nobody cared. And they won’t care tomorrow when I’m home once again either.”

If these questions were asked with a view to your needs being met and your life changing for the better, which of us would argue? But to be constantly asked the same questions with no expectation of improvement and to do it at every appointment you have, becomes ridiculous. Just look back through the notes, my answers have not changed, because my disability hasn’t!