• About
    • Privacy Policy
  • GSW
  • Guide To Making A Subject Access Request
  • In Dad’s Shoes
    • An Overview
    • Invitation
    • Media
    • Photos
    • Press Release
    • Soft Launch
    • Speeches
    • Summary
  • Media Coverage
  • Parliamentary Debates
  • Voice of the Child Podcasts

Researching Reform

Researching Reform

Daily Archives: April 12, 2017

London Live Interviews Researching Reform On Charlie Gard

12 Wednesday Apr 2017

Posted by Natasha in child welfare, Interview, Researching Reform

≈ 27 Comments

Yesterday London Live invited Researching Reform to discuss the distressing decision to take Charlie Gard, the baby suffering from Mitochondrial Depletion Syndrome, off life support. The decision was made yesterday by Justice Francis in the family division, after reviewing expert medical opinions in the case. Charlie’s parents had been fighting to get pioneering treatment for their son, which may have prevented him from dying.

We spoke to London Live about the ruling, and why, despite the arguments put forward by medical experts, we strongly felt the decision was wrong.

Mitochondrial Depletion Syndrome is a rare disease which affects the brain, kidneys and muscles. There are currently only 16 known children carrying the symptoms of the disease, and of those none are as severe as Charlie’s. The pioneering treatment on offer is available in the US, and has helped to treat patients with this condition by reducing the symptoms. And whilst medical experts in the UK and the US all agreed that the treatment if given would not be able to reverse Charlie’s brain damage, no evidence currently exists to suggest that the treatment would not be successful in saving Charlie’s life, or would not improve his quality of life as it stands now.

The entire premise relied upon to remove Charlie from life support was based on subjective opinions by medical experts who admit that the effects of the pioneering treatment on offer are unknown.

Arguments for denying Charlie treatment are highly questionable. Doctors took the view that although no evidence of Charlie being in pain has been registered by diagnostic machines or professionals themselves, they concluded that further treatment elsewhere could cause him to suffer. Again, a purely subjective observation and one which contradicts the parents’ who felt that Charlie was not in any pain and with a greater level of brain function than suggested by professionals. 

Bizarrely, a doctor involved also called the parents a “spanner in the works” for trying to seek out what could be potentially life saving treatment.

The email reads: “The spanner in the works has been a parent-driven exploration of all alternatives internationally leading to a new specialist in New York who has recommended a three-month trial of nucleosides.”

When asked about this choice of wording, the doctor told the court that it was just a “clumsy” turn of phrase, saying: “I was trying to suggest that our previous decision to take this to the court as urgently as we could was being held up by something being explored which needed to be explored.”

Not convinced? Neither are we. Professional arrogance is a huge problem in the medical sector, and no doubt having a US doctor muscle in on the diagnosis and decision making process would have put a few UK doctors’ noses out of joint. It’s something we’ve seen in other high profile cases, such as the now infamous story of Ashya King, whose parents took him abroad for pioneering treatment against UK doctors’ wishes. (Ashya is now cancer free and back at school). In this case too, UK doctors played down any success the treatment might have and tried to convince the court that the treatment would not work.

In Charlie Gard’s case, medical professionals told the court that even if treatment was allowed, the end result would be so minimal as to be outweighed by what would remain a very poor quality of life. A view not based in any tangible evidence, because treatment on someone like Charlie has never been attempted.

The anti treatment lobby ignore two fundamental points: no one actually knows what the end result of the treatment might be. There is also the possibility that in a few years’ time we may have pioneering treatment which can reduce the symptoms of the disease further, and even reverse the brain damage it causes. If Charlie is still alive, he can benefit immensely from that development.

Given that the parents have managed to raise all the funds necessary to have the treatment, and that medical professionals have conceded that Charlie could travel to America for the pioneering therapy, it seems unbelievably reckless to deny Charlie and his parents this chance.

A chance every parent would take for their child.

Charlie Gard

Share this:

  • WhatsApp
  • Pocket
  • Telegram
  • Share on Tumblr
  • Email
  • Print

Like this:

Like Loading...

Enter your email address to follow this blog and receive notifications of new posts by email.

Join 8,070 other followers

Contact Researching Reform

Huff Post Contributer

For Litigants in Person

Child Welfare Debates

April 2017
M T W T F S S
 12
3456789
10111213141516
17181920212223
24252627282930
« Mar   May »

Children In The Vine : Stories From The Family Justice System

Categories

  • Adoption
  • All Party Parliamentary Group on Family Law and The Court of Protection
  • Articles
  • Big Data
  • Bills
  • Case Study
  • child abuse
  • child abuse inquiry
  • child welfare
  • Children
  • Children In The Vine
  • Circumcision
  • Civil Partnerships
  • Consultation
  • Conversations With…
  • Corporal Punishment
  • CSA
  • CSE
  • Data Pack
  • Domestic Violence
  • Encyclopaedia on Family and The Law
  • event
  • Family Law
  • Family Law Cases
  • FGM
  • FOI
  • forced adoption
  • Foster Care
  • Fudge of the Week
  • Fultemian Project
  • Huffington Post
  • Human Rights
  • IGM
  • Inquiry
  • Interesting Things
  • Interview
  • Judge of the Week
  • Judges
  • judicial bias
  • Law to lust for
  • legal aid
  • LexisNexis Family Law
  • LIP Service
  • LIPs
  • Marriage
  • McKenzie Friends
  • MGM
  • News
  • Notes
  • petition
  • Picture of the Month
  • Podcast
  • Question It
  • Random Review
  • Real Live Interviews
  • Research
  • Researching Reform
  • social services
  • social work
  • Spotlight
  • Stats
  • Terrorism
  • The Buzz
  • The Times
  • Troubled Families Programme
  • Twitter Conversations
  • Update
  • Voice of the Child
  • Voice of the Child Podcast
  • Westminster Debate
  • Who's Who Cabinet Ministers
  • Your Story

Recommended

  • Blawg Review
  • BlogCatalog
  • DaddyNatal
  • DadsHouse
  • Divorce Survivor
  • Enough Abuse UK
  • Family Law Week
  • Family Lore
  • Flawbord
  • GeekLawyer's Blog
  • Head of Legal
  • Just for Kids Law
  • Kensington Mums
  • Law Diva
  • Legal Aid Barristers
  • Lib Dem Lords
  • Lords of The Blog
  • Overlawyered
  • PAIN
  • Paul Bernal's Blog
  • Public Law Guide
  • Pupillage Blog
  • Real Lawyers Have Blogs
  • Story of Mum
  • Sue Atkins, BBC Parenting Coach
  • The Barrister Blog
  • The Magistrate's Blog
  • The Not So Big Society
  • Tracey McMahon
  • UK Freedom of Information Blog
  • WardBlawg

Archives

  • Follow Following
    • Researching Reform
    • Join 8,070 other followers
    • Already have a WordPress.com account? Log in now.
    • Researching Reform
    • Customize
    • Follow Following
    • Sign up
    • Log in
    • Report this content
    • View site in Reader
    • Manage subscriptions
    • Collapse this bar
 

Loading Comments...
 

    %d bloggers like this: