Wednesday, 19 August 2020

A Lady With A Special Mission

On Monday 14th September I will be republishing my book NOT THE CONCRETE COWS which was originally published in 1993.  Here is something from the book.

Lady with a special mission:
My own daughter has suffered from renal failure since she was three years old and so my interest in the donor card programme is deeply persona. After a third attempt at a kidney transplant in London’s Guys Hospital I was offered an interview with Mrs Elizabeth Ward, president of the British Kidney Patients Association, in order to prepare a feature for national magazine.

By her own admission Mrs Ward is a formidable lady and so I have to admit to a certain sense of apprehension as I prepared for our meeting. When the brief meeting was over my whole being resounded with shell shock- rather than my interviewing her Mrs Ward had clearly interviewed me and I'm not sure if I passed the test !  However, it was that strong personality which was directly responsible for the introduction of our familiar donor card.

Outwardly Nigel and Elizabeth Ward have everything in the world: a lovely house overlooking rolling countryside, a successful business, holidays abroad and a full social life and three three wonderful children. It was as their son Timothy, affectionately known as Timbo, was about to enter Harrow School that the family had to cope with the devastating news that he was suffering from a life threatening kidney disorder.

As one who's had to accept the same reality, I can empathise with Timbo's parents but in 1994 medical science has come a very long way from when the Ward Family had to cope with the situation. Then funding for renal dialysis provided but a few machines and organ transplantation was in its infancy. It looked as if Timbo did not have a very long life ahead of him.

Timbo attended school with the son of Sir Keith Joseph, then Minister of Health. When Elizabeth was sent a kidney donor card in use in the United States she began campaigning for a similar system to be introduced in Great Britain. She wrote many times to Sir Keith, at first suggesting, that urging and finally bullying him towards the introduction of a kidney donor card.

The first renal transplants had been performed in Boston, Massachusetts, as far back as 1954. Ten years later the first operation was attempted in this country. But without a supply of organs there was little future in transplant surgery.

In 1967 world attention unfortunately focused on South Africa where Christian Barnard performed the first human heart transplant on a 54 year old patient. The surrounding media circus, failure rate and questioning of the ethics involved in such programmes did little to prepare public opinion for transplant donor card.

There were those who found the idea of spare part surgery repulsive, almost akin to cannibalism, while others feared the removal of organs before the donor was honestly dead. Ignorance and prejudice ruled over medical science.

Eventually Sir Keith Joseph agreed to discuss Mrs Ward’s proposals and a card based on her own design was launched in 1971 as the kidney donor card. I remember the one I carried from the early 1970s, I must still have it somewhere, having to ask my father, as next of kin, to sign his agreement on it. Like many relatives of the time he was reluctant to agree. For others the reluctance became outright refusal.

A change of government saw Barbara Castle and Doctor David Owen at the Department of Health. The redoubtable Mrs Ward confronted them and the realisation that her husband could refuse legal permission for her to become a donor appalled Mrs Castle suffragette instincts. She demanded the condition be removed.

The next twenty years saw not only transplants being accepted as by far the best treatment for chronic renal failure but also the successful grafting of hearts, liver, cornea and more recently the spleen. To meet the widening of science health minister Doctor Gerard Vaugn oversaw the kidney donor card’s transformation into the organ donor card.

But this was a change the campaigning Mrs Ward did not exactly welcome. “The indelicate wording of the card makes it look like a butcher shopping list !” She complained to me in the sitting room of her Surrey home and the headquarters of the British Kidney Patients Association. And the widening of the scope most certainly denies in many cases the use of donor kidneys.”

Unlike the heart and liver the kidney is a resilient organ, it can survive for several hours outside the body and can be removed quite successfully for transplant after the heart has stopped beating. Mrs Ward went on to explain but this enabled relatives to serve proper and dignified goodbye to their loved ones whereas now donors bodies have to be clinically kept alive on a machine while the brain is dead and the soul departed.

Consistent high profile over more than two decades has kept the card ever in the public eye but, in spite of more than 60% of the populations supporting the programme,  only a fraction of this number actually carry one. The government’s multi million-pound advertising campaign of 1993 did absolutely nothing to increase the numbers carrying the donor card.

Even though an individual may carry a card and fully desire to help others after his death by offering organs for transplant, their wishes may not be complied with. Doctors faced with the difficult task of breaking the news to the next of kin that their loved one is dead often elect to avoid compounding matters by seeking permission to take organs. Strictly speaking this permission is not required by law but doctors simply will not proceed without it.

Professor Cyril Chantler of Guys Hospital, possibly the leading paediatric renal specialist in the country, explains: “… it doesn't seem to work very well and I am now personally convinced that we should have an opt out system. In other words it should be the convention, it should be the normal practise that after somebody has been pronounced dead their kidneys can be used for others unless they have said they do not wish it to happen.”

A Gallup Poll commissioned by the British Kidney Patients Association shows 61% of the population firmly in favour of such a system.

An opt out system already exists in Belgium, Austria, Finland, France, Norway and Singapore. There was an increase of 119% in the number of transplants carried out in Belgium during the first year of the change.

For the kidney patient, dialysis means being connected to a machine for three or more hours up to four times a week and the almost impossibility of leaving a normal life. Professor Chantler is quite clear, “To me the only satisfactory final treatment for somebody with serious kidney disease is a kidney transplant, only kidney transplants will restore normal life. Only a kidney transplant will restore normal life.”

Over five thousand patients are currently on call for an organ transplant but last year only 2,730 of which 1765 were kidneys, transplant operations were performed. Many of those still waiting will die before a donor is found. It is true that even with a transplant some of them may still die but without the opportunity of a transplant they are not even given a chance.

Mrs Ward son Timbo died undergoing surgery in 1989 but call it destiny, call it divine intent, his life was not without purpose. A devout christian, his mother, believes he was sent to spur action towards have done the card and the Formation of a National Association to promote the cause of kidney patience.

Although Mrs Ward now thinks the donor card is moving towards becoming a failure I feel she is perhaps a little too hard on the development of her own idea. While it may have many failings, from the point of view of the 2730 patients who did receive a transplant in last year alone it has been a miracle.

But what are the future ? Mrs Ward is now campaigning furiously for the opt out system
advocated by Professor Chantler and the government is taking a serious view of the proposals. However, without the full support of the medical profession, in particular the transplant surgeons, a change is not likely for a while yet, perhaps not for another generation.

Until that time it is vital we all give careful consideration to carried at all times a donor card. Do you have one ? Have you told your relatives about your wishes ?

Sitting at her hospital bedside my daughter turned to me and said; “Look Dad I have a donor card. I've crossed out kidneys, they would not be much use to anyone but they can have everything else !”

It brought a tear to my eye. Having been given back to us by the miracle of a transplant the idea of losing her in some tragic accident is unthinkable. But if it should be that I would have no hesitation at all in seeing her wishes were carried out.

You can pick up a donor card from your doctor's surgery, your local chemist shop or write to either myself or Mrs Ward and we will gladly send you one.  

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