Seven weeks ago I received a message from a father desperately seeking which started my role as Alfie Evan´s only political representative. He was at his wits end. Not one politician, doctor or person in power or authority would listen to or help him.
What sort of country are we that a 21 year wanting the best for his child was spurned and ignored by the country he lived in? His courage, Alfie’s mother courage, the determination of his family and supporters have led to this campaign for justice and equality before the law, something most of us would expect to be the norm. It is not. Little Alfie was born healthy but after a few months he became unwell. He been on ITU on a ventilator at Alder Hey for almost all his life and diagnosed with a neurodegenerative disorder without a firm diagnosis. The Trust´s doctors concluded that further treatment was futile and not in Alfie´s best interest. They decided that Alfie must die by having his treatment withdrawn and sought to bully his parents into agreeing. His parents disagreed.
Tom told me on the phone that Alfie had improved. He recognised sounds and speech and by reducing certain medication other visible improvements had occured. When I visited this lovely boy I could see what Tom had explained. Furthermore, his parents had obtained offers of assistance from Doctor’s and renowned international hospitals abroad to take care of Alfie, to treat him and see if they could help.
And here is where the might of unlimited funds to lawyers and medical experts was unleashed on two working class parents from Liverpool, barely into their 20s. The hospital refused Toms pleas. They said he was wrong and they were right. They went to the High Court where this courageous 21 year defend the right to treat his son against the might of the hospitals lawyers, solicitors leading Queen Counsel and court system. The State appointed their representative for Alfie and the parents had no one. No one is surprised that the system won and condemned Alfie to certain death for that is what withdrawal of treatment is.
But Alfies case is not isolated. It follows a pattern where the NHS and the Court, both arms of the state, proceed as a juggernaut to crush dissent and to refuse be open their minds let alone their hearts to new evidence. It is regularly happening across the UK.
Vincent Lambert, Charlie Gard, Eluana Englaro, Charlotte Wyatt and of course Ayesha King are just a few cases where the state has ordered termination of life. In the cases of Charlie Gard and Ayesha King offers of help from hospitals from the United States and Czech Republic and the world were fought against by the hospitals and denied by the courts.
The same argument is put forward that the state does not believe it is in the best interests of the child to allow them to go. Their illnesses are so severe the child will die and no hospital could save them. Their is an institutional arrogance that the U.K. is the self proclaimed status of all knowledge and care. They can do no wrong.
But they can make mistakes. Hospitals are not omnipotent. Charlotte Wyatt lived. Ayesha King lives. But not before the state came together to hunt Aysha Kings father down issuing a European Arrest Warrant as though he were a dangerous terrorist not a father wanted to keep his child alive. Aysha is now in remission from cancer following specialist therapy in the Czech Republic. His actions were right but not before the terror and suffering he had to go through first.
What of Alfie? In February the courts were told once life support was removed he would die in a few minutes or short time. But he hasn’t. This brave brave boy has been breathing on his own for nearly 3 days. As in Aysha King and Charlotte Wyatt Could the hospital and court be wrong?
The international community is shocked and astonished at the apparent heartless intransigence and stubbornness of the state in refusing all offers of help to Alfie’s family. Last week a team of Doctor’s from Poland flew to Liverpool in an air ambulance which waited at Speke airport. Equipment ambulances and staff were available to transport Alfie to the world recognised Bambino Basu Hospital in Rome. other offers in Italy and German exist. The doctors were refused and held in a room whilst the hospital sought injunctions prevent them from helping.
The Polish Prime Minister, Italian Prime Minister, the Pope, politicians across the globe have begged the hospital to reconsider. The Italian government gave Alfie citizenship and sent Ambassodorial assistance to the courts. The legal establishment doubled down and criticised their interference and called a legal assistance a fanatic. Yet Italian Head of healthcare Walter Ricciardi said “the way my English colleagues often deal with situations like this is in humane”
Threats of legal action, defamation and potential contempt of court have been issued as warnings to those supporting the family. Those in Alfie’s army or supporting at the hospital have been called a mob. The police have been on guard. It is then outrageous that Jeremy Hunt and Alder Hey have complained about protests outside the hospital. To say calm down dears when we know that decent working people in Liverpool only shout when no one listens to them speak.
Despite multiple appeals through the courts Alfie´s parents have relied on the thin gruel of legal aid where it is clear they need a fair defence. Alfie’s family fight on.
And That is why I am calling for Alfie´s Law. Alfie´s law requires the parents defending their child´s life before the state as equality of arms, namely a fully funded legal team with access to medical and legal expertise, as the NHS now enjoys without any scrutiny. This independent advocate must not be appointed by Court or the NHS but must be provided at the earliest opportunity, when a hospital is first applying to court. To ask many judges to simply roll back their opinion after a long fight seems to be too much to ask.
I have written twice to Jeremy Hunt and Theresa May, the health and head of our elected government in a democracy. Alfie was not deemed worthy of a response.
Any patient is entitled to a second opinion and there should be no obstruction to it. If a court seriously doubts Alfie´s parents lack his best interests on the grounds they are not medical specialists that is a tyranny of experts that every parent must now dread. To doubt so without any proof of ill intent is monstrous and sets out a government policy to nationalise our children. To decide specifically that a child is not allowed to be treated by another qualified and willing provider is to subject that child to non voluntary euthansia with withdrawal of treatment. It is shocking to see how far parents and family rights have been marginalised in the U.K. and criticised by the rest of the world. It is chilling to see how far the states powers to control our children have come and the power they will use to retain it. No one has a monopoly of truth nor the capacity for miracles. Doctors and judges must not confuse themselves with the one above and must not play God.
Today Alfie still has a chance. The world is watching and cannot understand the lack of humanity in holding Alfie in hospital against his will.
FOR THE SAKE OF HUMANITY LET HIM GO!
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