Alfie Evans’ parents deserve our sympathy for an outcome that has always been inevitable

I have nothing but sympathy for Alfie Evans’ parents. For the last 18 months, they have been going through the worst kind of trauma. Before Alfie was born, they would have had ideas of the sorts of things they would have done as a family, none of which have come to pass. None of them ever had any hope of coming to pass.

It’s even more difficult when nobody can actually tell you what is wrong. Whatever happened to Alfie’s brain is unique. It doesn’t have a name. The doctors couldn’t say “He has this disease and in all these other cases of that disease this is how it’s happened.”

Some friends of mine had a baby who would be 9 this year. He had a very rare condition and he died when he was 14 weeks old. His short life had a huge impact on them and his wider family and he is remembered every day. They will never fully recover from the trauma they went through. They dealt with it with more grace and love than I could ever have found in that situation.

It is completely understandable for any parent in that position to fight as hard as they can for their child. They don’t want to look in any mirrors and think “I wish I had done more.”

In these circumstances, where parents can’t accept what the doctors say about future courses of action, it is right that should be a legal process to decide. Having read the court judgment, I am confident the the doctors were right. Their conclusions were independently reviewed and enough people came to the same, sad, conclusion for the outcome to be credible. It’s the last thing anyone wanted. Doctors don’t want to have to deliver this sort of news. They want to save people. There are times when they can’t and this is one of them.

I found this Twitter thread written by a junior doctor useful in explaining the background:

While I understand the grief of Alfie’s parents and family and the effect that this 18 month ordeal must have had on them, I can’t see any excuse for angry and bitter protests outside a children’s hospital The doctors and nurses and other staff, other parents and children do not deserve to have to run the gauntlet of abuse. The Alder Hey staff have provided Alfie with the best possible care to the highest professional standards. Those who stoke the fires against them should be utterly ashamed of themselves, especially when they come from a country and a party which baulks at providing even the most basic health care for people.

These places are emotionally charged enough. When I think of how seriously ill my husband was a year and a half ago and how anxious and fearful I was for weeks on end, not knowing if he was going to be ok, I know how much more difficult it would have been if I’d had to deal with angry crowds there every day. I’m not sure how easy it would have been for him and the other patients to hear constant protests. What they are doing is not fair and there are more appropriate ways and places for them to express their anger. And while we’re on the subject, let’s think about how bloody awful a society where someone’s health care was determined by a baying mob outside the hospital would be. These individual decisions should always be decided on the basis of clinical need and, if required, due legal process, not in the court of public opinion.  My Google search is not equivalent to decades of medical training and experience. That’s not to say that public opinion has no place in health care. Over the past few decades there has been a marked shift from the “do as you’re told” culture to one where people are much more involved in their individual care plans, but that’s a different issue.

The doctors should not be abused for a tragic set of circumstances that was only ever going to have one outcome. My thoughts are with Alfie’s parents. I hope that one day they are able to get some peace of mind about these awful events and that they have the support to enable them to do so.

* Caron Lindsay is Editor of Liberal Democrat Voice and blogs at Caron's Musings

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3 Comments

  • Malcolm Todd 27th Apr '18 - 1:29pm

    Well said, Caron. And thank you for that link to the doctor’s Twitter-thread, which was very informative. (Obviously, reading on to the responses was a mistake; I should have learned my lesson by now…)

  • Again well said Caron. There are lot of cultural issues swirling around these cases. Rampant individualism, unhelpful understandings of “choice”, media exploitation of family tragedies etc. The meditation on children by Kahlil Gibran suggests to me more spiritual sustenance than dragging in the Pope. There will no doubt be more such cases.

  • John Wheaver 28th Apr '18 - 10:54am

    My having great sympathy and understanding for Alfie’s parents does not put me near the view of those who abused medical – or legal – personnel. Indeed the unsupported assumption of knowledge, and sometimes a blind certainty of rectitude, is an alarming feature of public interest when it spills into mob-rule. Having “friends” like this cannot be helping the family’s grieving.

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