Am I alone in feeling bewildered?

Marianne go back to the bottom of page 1 where I summarise the nature of the problems this little boy has. He has less than 30% of his brain remaining and you will realise that all the money in the world could not save his life.

The result would be the same whether he was the son of the Cambridges, Bill Gates and all those even richer than him or the parents he has. He has a degenerative brain disease that cannot be treated and is always fatal.

He has had the best possible treatment and even if he was taken to Italy the best they have offered is palliative care until the inevitable happens

Marianne1958 and mabon your opinion is ill-judged and entirely wrong on so many levels it hardly seems worth discussing how completely you are barking up the wrong tree.
Money does not come into it. How much is spent on gastric band surgery for people who continue to overeat? How much on patching people back together who have smashed their car at 150mph? How much on A&E services for those off their faces on drink or drugs on a Saturday night?
Money is not the issue even there ad certainly not here. Doctors may not be infallible but they stand a better chance of knowing the medical facts and the prognosis than rent-a-mob outside Alder Hey baying for blood. Or even sadly, the young parents.
We have not lost faith in the NHS and for serious things it is incomparable. Fair enough the wait for an ingrown toenail op might be longer than you or I might like, but when the chips are down I have seen outstanding expertise and care.

Thank you to those who have shared their own stories on here.
I applaud the parents for doing everything they can for their little boy, although I believe their actions are misguided. Alfie's parents presumably hoped for a miracle and while there is life there is hope, so I understand them not wanting their son's ventilator to be switched off. The people protesting outside have mixed reasons for their presence and I personally think some of their actions are reprehensible.

One woman described her reasons for joining the protest:
Steph feels she was let down by doctors when she was having her son Arlo, who was left deaf after developing sepsis, and feels the public need to be aware that 'doctors do make mistakes'. She said: "We've had so much stress with hospitals. Doctors aren't always right and they do make mistakes. I support Tom and Kate all the way and being there just gives them some extra support. M.E.N.

Menopaws your post is brave and humbling.
No-one knows the reality of living with a child with severe disabilities unless they have to do so themselves and none of us know how we would feel or cope.
I see the mother of a severely disabled girl occasionally who seems to cope so well with grace, love and a smile as well as caring for her other two children. The girl is 10 now and in mainstream school - but what does the future hold for them all?

The mob outside the hospital have jumped on to a bandwagon either to further their own causes or because they have been carried away by emotions without having any idea as to the medical reality of this little child's condition. Their behaviour in disrupting the everyday running of the hospital, to other patients and their families and the dreadful threats to the medical staff is verging on dangerous.

I hate this mob mentality which seems to pervade so many aspects of life today. A doctor on TV the other day articulated very well the anguish felt by hospital staff in such difficult circumstances, and how social media causes uninformed opinion to swell into something very ugly.

I don't condone the mob mentality and I don't know the full details of the case as no-one on here does.
Each case is different and unique and I am in humble awe of those on here who have, and still are, facing the very daunting task of raising children with challenging conditions.
I do know that another hospital in another country felt that they could offer something and that the parents were prevented from taking up that offer by a hospital which has the most shocking history of stealing organs from children without their parents' knowledge or consent.
So I'm not going to join in this condemnation of the parents or the pope or the arse licking of the NHS.
I will simply express a concern that, more and more, we are being ruled by a big brother establishment which refuses to allow any parent to accept and act upon informed advice from any other quarter but theirs.

How charmingly expressed.

The way that post is written says a great deal about it's author. Ignorant is one description.

I don’t think Noddinggangan has expressed ignorance, in fact I think those who condemn her post as ignorant are themselves at the very least rude. Nodding has written her opinions, just as many on this thread have done. She is entitled to those views, just as everyone else on here are entitled to their views.
This case has aroused strong emotional reactions in the general public, and indeed in many Gransnetters, especially perhaps, because the majority of us are both parents and grandparents. It has been disturbing to watch through the media how the case has evolved. However, whilst it’s probably fair to say that we all condemn the baying crowds outside the hospital, and the demonisation of the hospital staff who have undoubtably looked after little Alfie Evans in an exemplary manner, the sad situation in which parents find themselves in the event of their child becoming so ill and disabled must be heartbreaking for them, and then to find they are up against a system which seems to be almost predetermined to overlook the parental rights and responsibilities, but then at the same time the system must, without a doubt, put the rights and best interests of the child first.
It seems to me that as medical science advances, more and more children and parents will find themselves in this unhappy situation. Perhaps the law does need to be looked at again, apparently Charlie Gard’s parents are working with others, including medics and politicians, to try to change the law to give parents more rights about the treatment of their sick children. The hope is that then fewer of these very sad cases would reach the courts, and consequently hopefully, we would see rather less of these cases which seem to attract the horrible baying crowds we saw outside Alder Hey Hospital recently.

I’m sorry maddyone but I agree with eloethan and iam64 that the abusive terms that nodding used to express her opinions - describing those who supported the doctors as ‘arse-licking the NHS’ - were very far from the standards of language and debate that most of us on Gransnet usually employ.
You advocate giving parents ‘more rights’ with regard to the treatment of their children. Does that include parents who belong to certain religious groups who withhold their consent for blood transfusions, without which a child would die?
Parents already have rights. Doctors cannot proceed with treatment until parental consent has been given.
It is only in extreme cases, where the parents’ wishes are at variance with medical opinion and the courts judge that the child would be harmed, that parents’ wishes are overridden.

Firstly Jane, I agree with you about the use of totally inappropriate language by the OP. It is rude in the extreme, however the accusation that other posters are ignorant is also rude in my opinion. To respond rudely because another poster has been rude is not acceptable I believe. Two wrongs can never make a right.

Secondly, with regard to the point in question, which is should parents have greater rights to decide what is best for their sick child. The Charlie Gard Foundation is seeking to redress the balance in these difficult cases, apparently by a change in the law. It is seeking to clarify the law around ‘best interests’ and to ensure families going through these extremely difficult times are properly supported. The proposed bill would have three main clauses, 1) To focus on parents being able to access the help they need by a) better access to advice on ethics and their rights b) independent second opinions c) legal aid, in order to prevent families having to take on top-flight legal representation and having to rely on special interest groups 2) To help to prevent cases from reaching court by a) access to clinical ethics committees throughout the NHS b) access to medical mediation in cases of conflict c) access to medical records including raw data 3) To protect parental rights in these cases by preventing court orders being made except where there is a risk of significant harm to the child.
Doctors, lawyers, and others have been involved in the drafting of this proposal.
I think clause 3 answers your query about blood transfusions and some religious beliefs.
The document seems reasonable to me, and would redress the balance somewhat.
I speak as a parent and grandparent; two of my newborn children were admitted to NICU immediately following their births, they received blood transfusions in both cases. One of my grandchildren was admitted to NICU immediately after birth with breathing difficulties. Both my children and grandchildren have been admitted to paediatric wards at various times for the treatment of a variety of conditions, in particular my baby grandson was admitted with pyloric stenosis at five weeks of age. My baby son was admitted for a further blood transfusion aged six weeks. I am extremely grateful to the dedicated medics who treated my children and grandchildren on these occasions. But the fact that the NHS is wonderful in so many ways does not mean it can never be questioned or there can never be criticism. Mistakes can be, and are made. Differences of opinions and treatment occur. Medical ethics is a complex and difficult subject.

maddy I believe that in the vast majority of cases, medical staff work with parents to explain what is going on with their child and to agree on a treatment plan that is in the child’s best interests.
But the bottom line is that parents cannot force doctors to treat children in a way that isn’t in the child's best interests or would harm them, no matter how many ethics committees have their say.
Doctors are accountable to the GMC and if they carry out treatment that the body of medical opinion holds to be unwise or potentially harmful, they lay themselves open to charges of medical negligence, or worse.
And no amount of consultation with ethics committees will prevent the pro-life lobby jumping on the bandwagon and exploiting grieving parents for their own ends.

I will simply repeat, whilst the NHS is a wonderful institution the majority of the time, this does not mean it can never be criticised or questioned.
I am not discussing the pro-life lobby as my opinions have nothing whatsoever to do with pro-life.
As I write this the national news is highlighting the problem of thousands of missed breast screenings. As I said, the NHS cannot be in a position where it can never be criticised or questioned. All public bodies and institutions, funded by tax payers, must be open to scrutiny.
Finally, I respect your opinion, and whilst many agree with you, there are also many who do not.

I haven't seen anyone suggesting the NHS can never be questioned or criticised.
I don't see the missed breast screenings in the same league as the significant if rare difficulties that arise when medical teams and parents disagree so profoundly.
maddyone referred earlier to demands from Alfie's parents that legal aid be granted to parents in situations like the one they have faced. It seems obvious that legal aid should be available and I hope their demand is successful. There have been huge cuts to the legal aid budget, to the fees paid to legal representatives in family and criminal law. I don't want to take away from the important issues being discussed here but, the need to highlight the devastating impact of cuts to legal aid is so important.

I do agree with you Iam64 about the legal aid issue, unfortunately the lack of proper funding through legal aid means that all too often people are denied the ability to access the law when they need to, and of course this applies to all areas of law, not just the area we have been discussing.
It is The Charlie Gard Foundation that is seeking access to legal aid for parents caught up in these awful cases Iam64. But I agree that legal aid should be available in these cases (and others) because apart from anything else, it would prevent special interest groups such as pro-life organisations from funding the parents, and using these devastated parents and their child in order to push their own agenda.

I should have said that obviously the missed breast screening appointments is not in the same league as the devastating cases where parents and medical staff disagree so profoundly, so I agree with you again Iam64. I was simply using that as an exemplar of things which can, and do, go wrong in our NHS.