Charlie Gard

A lawyer for GOSH has told the parents the scan makes for scan reading, nice man , they are devasted to be told before hearing the full details

wilma I agree it's not the same as CG, but it does concern me that the compassionate - and of course, self-serving - support for his case may encourage other parents to push for this kind of expensive treatment.

It's not clear to me - maybe you could explain - why the cost to the taxpayer would be more if the drug were not prescribed. I confess, I have no idea what the impact of PKU would be on the NHS. But at a cost of £100 per day, unless the drug becomes a lot cheaper surely that cost must vastly exceed the cost of non-treatment, surely?

I thought babies got a jab shortly after birth to prevent the development of PKU. Did that wee lad not get it?

devongirl I don't think that case is in the same category as the Charlie Gard case. For a start I've heard of PKU.

I do think the drug should be available on the NHS for the reasons given by the family's lawyer. Firstly it could transform the boy's life as it has for the other boy mentioned. He could complete his education and become a tax paying member of society. His family's life could be transformed by the changes in his behaviour. As things stand the cost to the tax payer of not paying for the drug could be much more in the long run.

Drugs cost so much because pharma companies have to recoup the costs not of the new drugs, but of all those that never made it to the end of the development process. The whole question of whether drug companies should drive what new drugs should be researched or public health bodies should drive the process has been under discussion for the last few years. The NHS should be able to pay for a new drug based on what it cost to develop. Until that happens (and I believe it will eventually), we will keep reading about NICE saying no to new drugs because of the cost. It's a chicken and egg situation right now.

The simple answer right now is to increase taxation. Remember that the current situation is a political choice, as it is for any of the public services currently under extreme pressure. That can change.

I've read the mumsnet thread, I'm so impressed by the level of compassion alongside professional and personal experience from posters.

Yes Gill absolutely and on twitter as well. You can't refute the FB comments because the group won't allow you to post if you're not a member, and if you join and disagree with them, they block you. However, on twitter, you can respond and when I've a spare ten minutes, I do so. MN is brilliant on CG - there is such a range of relevant professional on there ( medical, researchers, ethicists, legal etc) and parents who have shared their heartbreaking experiences. I have learned such a lot

When I log on to GN I am struck by how caring and understanding posters are, many validating their opinions by sharing their own personal tragic experiences of losing children or grandchildren to dreadful diseases or conditions. If you truly want to despair of society, take a read at the FB page for Charlie's Army, the so called supporters of Charlie's parents. The ignorance, bile, vicious comments and straight forward death threats to GOSH staff and the GOSH defence barrister take your breath away. There are a few on there who should be charged with inciting violence, rape, civil unrest. It is like lifting a stone and seeing disgusting things crawl out. The people in USA who are using these poor parents to push their own right wing propagande should be ashamed of themselves ( although I doubt they have the self awareness to do so), and I am sure that when Charlie dies, as he well, the supporters will melt away and then the tabloids will turn on the parents.

I am speaking from the point of view of a mother who lost 3 children albeit during pregnancy. If someone back then was able to say to me your children will live but due to the damage already suffered in their tiny bodies theirs will be a life confined to a wheelchair dependent on care from others 24/7 for the rest of their days then in all honesty I would not want that. The argument is often made we have no right to play God but doesn't modern medicine do that every day? Only a couple of generations ago people died from conditions that now are 100% treatable. Keeping someone alive on a ventilator for years is artificially prolonging their lives. I can fully understand Charlie's parents fighting for their son but sometimes parental love can completely blind us to what is actually the kindest option for our child. Will this treatment available in America mean that Charlie will recover to be a more or less normal little boy who will one day walk, talk, eat, sleep and have normal bodily functions. If it will only stabilize his already poor health then is it really fair on the child. I see he has been given American citizenship and that a hospital in America is willing to treat him for free but even if the GB authorities allow him to travel there how will his parents live when they are there. Who will pay for their housing and other costs. They won't be entitled to the American social security system and the money raised so far was for Charlie's care so can't be used by them for their living expenses. It's my understanding this treatment (I could be wrong) is an ongoing treatment so the long term picture does need to be looked at. It's such a sad sad story but it needs resolution soon for all involved and by this I mean Charlie and his family.

Meanwhile this story on Tuesday:

www.bbc.co.uk/news/education-40594365

I feel very sorry for the family but the parents want the NHS to pay for a drug costing £100 per day, indefinitely as far as I can see; is it just me, or does this sound completely unreasonable? It makes me wonder if CG's case is spawning other claims..

The parents are legally aided annsixty, there was a hitch because of the cuts to legal aid but the judge made sure legal aid was available to them. The CG will be legally aided but GOSH are probably having to fund their own legal team. Of course, in the US, everyone would be paying their own legal fees, fighting each other to have fees paid by the 'loser' and the parents would be paying for Charlie's health care.

The parents are obviously spending all of their time either with Charlie or in court fighting their case.
If they go to America who will support them financially and pay all Charlie's medical expenses because £1.3 million won't go very far.?
Who is paying all the court costs now?
Money should not come into treating a very sick child of course but a huge bill is being racked up for someone to settle.
If he can be treated successfully it is money well spent but every report says it is highly unlikely that this will be the case.

I was horrified to hear on BBC Breakfast a man [I didn't catch his name] who was reporting on articles in today's papers saying that he'd never let his child be looked after by GOSH. For his sake I hope his child is never in that situation. What a horrible thing to say but I can imagine that he is not alone in using GOSH as a scapegoat. It's an horrendous situation for any parent to be in and it must be hard for the Courts too even though it's part of the job to remain impartial. As for Donald Trump getting involved........!

Old woman - what about the rights of the child? This baby is too young and too sick to say what he wants to happen. His parents are in dispute with the doctors. Charlie has an independent Children's Guardian who instructs a lawyer on the child's behalf. To date, the CG has supported GOSH, based on his/her understanding of all the evidence from the other parties, including Charlie's' oarents.

I fully understand his parents fighting to keep him alive and attempting to get any treatment possible for him. I believe they should be given as much information as possible regarding available treatments, hear the advice and opinions of doctors and consultants, including the risks of transporting him to America, and then be allowed to make the final decision themselves.

We are none of us privy to the full details of his condition so really can't make any judgement.

This report is very clear, no muscle function at all which means that no bodily functions can occur without mechanical intervention. That is not a life

Thanks Anya for the link to the document submitted at the recent Court hearing by the counsel for GOSH.
Those who say that only parents should speak for their children will hopefully accept that our legal system ensures the child has an independent voice in complex legal proceedings.

Yes it is Rigby - thank you for posting that.

The parents are thinking with their hearts and not their heads and wishful thinking comes into it too. It is awful for them but their judgment is clouded and little Charlie would not be even still be here but for GOSH. They will never accept the court's decision if it does not accord with them. Hugely sad.

Yes GOSH's position statement is very moving and clear isn't it?

I have read this document issued by GOSH a few days ago and it sums up the situation very clearly.

GOSH's position on Charlie Gard

Thanks Rigby I've been guilty of just reading the headlines re the citizenship thing. I've been more thorough reading up about this awful condition.

Anya he hasn't. I tried to explain it above - a US congressional committee has put forward an amendment to grant them permanent residency. Thiis amendment will be an amendment to a bill which is on a range of immigration matters. ( including the wall) which has to be passed by the House and Senats. Some informed commentators think this will take months, if it happens at all. The whole US involvement with little Charlie is coming from pro-lifers and the anti-Obama Care camps. Our right wing MSM are misreporting the story either because they just want to knock the NHS and/or because they are lazy journalists.

I'm reading that Charlie has been granted US citizenship ship. The irony of this is beyond me.

It's a terrible situation and there are no winners here.

The case resumes on 24/25 July. The judge has a transcript from the meeting of all the doctors involved that took place on Tuesday. He has said he will rule on the 25th. The media ( mainstream and social) is full of misleading , ill informed rubbish which is only stirring up emotions and false hope. The fall out afterwards is going to be horrendous. When a case like this occurs in the future, there should be restricted reporting for the sake of the child and not this media circus that is not helping anyone but worse is causing great harm.

Americans seem convinced that this has happened because of our evil "Socialised Medicine" and that Charlie is being held prisoner by the government. The concept of the legal system being something separate seems to be beyond them, but a few of them have managed to grasp that Charlie wouldn't have lasted this long if he'd had to pay for hospital treatment over there. Hopefully we will get some sort of decision from the American doctor.

I so agree Jalima - there are some truly evil people feeding on them at the moment.