Elizabeth Despard Ward OBE
Fearless kidney patient advocate
'A life in the day'
Elizabeth Ward passed away on 20 July. Without her endeavours, thousands of UK kidney disease sufferers leading very hard lives would have perished before their time. The quality of thousands more lives has been improved dramatically.
Her key achievements were raising an estimated £70 million from the public for the direct benefit of patients and to fund research; challenging the medical establishment for withholding dialysis from patients for non-medical reasons; and persuading Government to introduce the kidney donor card. The opt out law we now have in all of the countries of the UK would never have come about without her. All the more astonishingly, the medical authority she challenged in the 1970s and 1980s was exclusively male; she played an important part in the sexual revolution of the 20th century. She was a role model as a woman, willing to challenge the patriarchy, and she helped to catalyse a change that now sees patients at the heart of medical research. Elizabeth was one of the greatest women of her time, in the UK and beyond.
I had the privilege of meeting her in April 2019 through my role as a Trustee of Kidney Research UK. She wrote to me afterwards:
‘I have been very fortunate in arriving on the renal scene when all was indeed not well and was therefore in a position to make a significant change to how things were. Now, it is for sure, more manageable and the possibility of a good functioning graft not just a desperate dream but a strong reality. So what is needed is a constant flow of cadaveric kidneys and energetic research towards a time when the majority of kidney problems have been wiped off the face of the Earth.’
She made such a profound impact on me that unknown to her, I nominated her for further honours to the Cabinet Office, and to HM the Queen with wholehearted support from Peers, MPs, eminent nephrologists and patients alike. Sadly, she didn’t live to see the outcome. The following is an account of my special day with her.
David Prosser, Vice Chair, Kidney Research UK, July 2020.
‘The mother is wholly inadequate and the father is a drunkard.’
‘Is that a good enough reason for murder?’
In the 1980s, Elizabeth received a call from a renal unit whistle blower to report the decision to withhold dialysis from a 6 year old girl. When Elizabeth challenged the Consultant Nephrologist he confirmed the allegation, offering parental shortcomings to justify his course of inaction. Consultants were exclusively ‘hims’ then.
I succumbed to kidney failure at 21, more or less at the time of this exchange. Until Elizabeth reported the conversation to me, it hadn’t occurred for a second that I might not be offered dialysis. How naïve.
Elizabeth is now 92, and I was glad of the opportunity to meet her, to say ‘thank you’ for a small kindness she had unknowingly done for me in 1985. Small in the sense of routine for her, significant for me. Her charity, now Kidney Care UK, ran a dialysis centre on the Mediterranean coast near Montpelier. She gave patients the opportunity to take a holiday. Doesn’t sound much, but family and friends apart, few things did more to sustain me psychologically: I was 25 with the life expectancy of a 75 year old man. Elizabeth’s charity made no charge for the treatment. I rose early to connect to the dialysis machine at 6am, avoiding the midday sun. Two weeks of laughter, barbecues, mucking about on the beach, and swimming in the sea: what fun. The opportunity was a patch of blue, a break in the uninterrupted grey clouds which hung over dialysing in my London flat. Kidney patients cling gratefully to dialysis, taxing though it is: damned if you do, dead if you don’t.
So it was that I motored down to Hampshire. I struggled to find the house. It was isolated and hidden off a minor road, up a track, the sole landmark being a tethered, ageing white nag grazing outside Elizabeth’s gate. At her age, I half expected Elizabeth to be metaphorically tethered too. But no. As I pulled up in her drive, she appeared without warning, scooting to and fro alongside, barking parking instructions astride her ‘trundle’, the name given to her bright red mobility scooter. Like a border collie snapping at sheep’s heels.
Greeting her, I was struck by her immaculate personal presentation: coordinated trousers, cardigan and blouse, with a splash of scarlet in each, and matching lipstick, applied with perfect precision.
I was ushered through to the lounge:
I surveyed the room. Not a speck of surface dust. Numerous gleaming silver picture frames on mahogany cabinets and sideboards. Some family shots, but mainly monochrome photos of her as a young woman. Fresh multicoloured tulips in a vase. Unblemished light green carpets and floral curtains. The room had got stuck in the 1980s, a judgement confirmed by the large wooden TV cabinet and VHS player, and the absence of web enabled devices of any kind.
‘Did you meet me at La Grande Motte?’
‘Well what do you remember?’ There was an undercurrent of affront.
‘A dialysis nurse called Fiona: her long brown legs.’
‘Are you sure it wasn’t me? I had great legs.’
‘Not unless you had a Geordie twang in those days.’ Elizabeth went to Cheltenham Ladies College in the1930s, a bluestocking with standard cut crystal accent. Her class nickname was Mad, which she pronounced ‘Med’.
In 1970, her 12 year old son Timbo presented with kidney failure as a result of a genetic defect. Reacting to his plight, in 1975 she’d formed her charity, the British Kidney Patient Association (BKPA, now Kidney Care UK).
How much did you raise for the BKPA, Elizabeth?’
‘My God! How?’
‘If you don’t ask, you don’t get.’
‘But it’s not even a sexy cause. The public assumes a life of debauchery, especially drinking, causes kidney failure.’
‘That’s pathetic’ she snaps, ‘my Blue Peter appeal raised £2.5m. A record. Hounded Biddy Baxter for 3 years. Telephoned her every day, until she was sick of me.’
I began to see why ‘formidable’ or ‘indomitable’ is appended to Elizabeth’s name. Others screw up their faces at the mention of her. She evokes strong emotions; positive and otherwise. My own nephrologist, now in his sixties and a longstanding fan, had briefed me: ‘An extreme psychological reaction to a personal tragedy’. I passed on his personal regards. She nodded, as if to say, ‘I expect no less.’ His own view was that the opprobrium of the medical fraternity, which still exists in pockets today, had resulted from the fact that she had the temerity to attach conditions to research grants. A woman too. Bloody cheek. But those curmudgeons had largely hung up their stethoscopes now.
She’d retained the emotional intelligence which had served her well at the height of her powers. Said all the right things: ‘I live alone but I have company today, how lovely.’ She was thrilled when a scotch arrived with her fish and chips in the pub at lunchtime. Elizabeth appeared to be without self-pity, despite being wracked with arthritis. She didn’t curse the pain it brought her, just winced. That too was endearing.
She’d lived in India and was caught up during Partition in 1947. Had been married at 21 to a soldier for a year. Divorced him. That can’t have been easy; divorces were rare then, particularly those initiated by wives who bore the onus of proof. In Jaipur, she and their infant daughter were abandoned by her Christian aide and left to fend for themselves for days on a troop train. She’d had to push her way to the front to get water from the locomotive for the baby. In addition to derailments, Elizabeth witnessed fighting and deaths on the journey. It had been a frightening time. Inoculated her with a healthy dose of self-interest. I conjectured that, after that, not much would have touched her, until Timbo’s death at age 30, after 3 transplants, the last donated by her late husband, Nigel. Timbo died in the year I received my kidney transplant, over 32 years ago.
Notwithstanding the odd comment, would be quite wrong to imagine that Elizabeth was showing signs of senility, or that her world and thinking had closed in. Far from having given up, it became clear that she’d been thinking proactively. She declared that she’d recently had a test run on the trundle; half a mile to the village shop and back. How she’d negotiated the track from her house without flipping the contraption was unfathomable. Secondly, the route included a right turn from her minor road onto a lethally busy road.
‘Elizabeth, why in God’s name did you do that?’
‘Sooner or later they’ll take away my licence. My daughter wasn’t best pleased I’d done it. She’s 72, you know.’
Elizabeth still drives an electric blue, spanking new two seater soft top Mercedes SLK. Another terrifying thought. Discretion prevented me from mentioning HRH The Duke of Edinburgh voluntarily turning in his licence.
Elizabeth wasn’t bashful of expressing forthright opinions, however contentious:
‘It’s criminal that healthy people should donate their kidneys when perfectly serviceable organs are buried or burned every day, don’t you think?’
Buried or burned, that was her phrase. She’d thought about the alliteration. It seemed to me this overlooked her husband donating a kidney to her son. She knew that my sister had donated a kidney to me. I was rather grateful for it.
‘Did she suffer any ill effects?’
Elizabeth casually mentioned that she had brought into existence the kidney donor card, now the organ donation card. It was a revelation to me. I read later that she knew the Home Secretary personally: his boy was at Harrow with Timbo. This must have been a proposition fraught with risk for a politician because of the ethical implications. The rebuttable presumption would have been for Sir Keith Joseph to decline or stall her. After encountering predictable resistance, Elizabeth asked Sir Keith how he would feel if it had been his son, not Timbo who had succumbed to renal failure. That clinched it. What an achievement, I mused; donor cards must have saved or extended thousands of lives. For this alone, I pictured Nelson’s effigy being removed from its perch and replaced with hers in Trafalgar Square. Yet she was self-critical; it didn’t go far enough:
‘We need relatives to consent to donate within an hour of death, not ten days later while lamenting the departed over sandwiches and cake.’
This encounter offered insight into the way Elizabeth operated to get things done. She had carefully targeted her quarry’s weak spot. For instance, she gleefully explained that she’d employed the threat of eternal damnation to prick the consciences of nuns when she wanted them to fund dialysis for a vagrant. I could see that an unswerving policy of the ends justifying the means could get people firmly offside. It sounded as though any available means would do, too. Something about the conviction with which she spoke suggested that Elizabeth didn’t strike me as the type to carefully mend fences afterwards either.
In 1986, she wrote an article, Dialysis or Death?, in The Journal of Medical Ethics instructing doctors to stop lying to patients to cover up an inadequately funded National Health Service. More alliteration, more altercation. She alleged that patients were often told that their condition was not suitable for responding to dialysis, when the real reason was a judgement by doctors about class or religion, or something else not medical, as a basis for rationing the available number of slots in clinics. It’s a strident, combative piece, not crafted to garner support.
What strikes me now is that in the 1970s and 80s, consultant physicians were still a bastion of the patriarchy. They wouldn’t have taken kindly to being challenged fiercely about their morality and ethics by a civilian and, what’s more, a woman. It seems to me, this makes her achievements all the greater. Perhaps the medical profession is more accountable today as a result of a culture shift that she helped to bring about. Was her willingness to challenge the medical establishment a part of the reason she wasn’t made a Dame? Today, people are knighted for riding a bike. She’s fiercely proud of her OBE, so becoming a Dame would have gratified her. Perhaps it isn’t too late.
She made me follow behind her stair lift to see her ‘ego wall’ as she calls it: Nigel’s old dressing room, now a gallery to her social accomplishments. Row upon row of photos featured her meeting Prime Minsters- including Thatcher, Blair, and Major. Other notables included the Poet Laureate Andrew Motion, Archbishop of Canterbury George Carey, Chief Rabbi Jonathan Sacks, The Dukes of Westminster and Edinburgh. She’s used her social capital for the benefit of kidney patients.
‘It’s now quarter to four and time for my nap, so you need to shove off.’
‘Yes, I mustn’t be late home,’ I lied.
As I stooped to kiss her, I wondered if I’d see her again. I had visited Elizabeth to repay a thirty year old debt. I don’t know what I’d been expecting to feel when I drove away but it wasn’t this. The thought returned that there must be thousands of people who would have perished before their time, but for her intervention.
In 1997, Elizabeth’s achievements were celebrated on a television programme, This is Your Life. A woman in her twenties walked on. Elizabeth hugged her. Nobody knew it, but Elizabeth told me she was the 6 year old girl who had been offered dialysis after all. This kept her alive until her ‘wholly inadequate’ mother donated a kidney to her.
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