Alfie Evans 7

[StayingAtTamaras]

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Given that there were no legal or medical expenses, what was the fundraising originally envisaged for, does anyone know?

I think many of these pages are set up out of a knee jerk reaction to a life threatening or changing diagnosis. Out of the need to do something, for friends and family to feel like they are helping in an uncontrollable situation.

There is the concept that anyone with cancer or life threatening illness will need “treatment abroad”. Which i think stems from a misunderstanding of the reach of the nhs- it doesn’t simply treat, it does carry out clinical trials and experimental treatment, it will consider proposals. Generally the treatment here is as good as anywhere in the world.

The vast majority of these fundraising pages the funds have not been needed. Either the nhs treatment works, or it doesn’t- and again flying desperately sick children round the world for futile last ditch treatment isn’t an option either. So the money is the families to do what they want with.

I have no issue with people donating, but i do think it should be made clearer that it is basically a gift with no strings or stipulations attached.

I think it was for a diagnosis and treatment according to the fb page. A donation to Swan would seem appropriate under the circumstances, but it will be up to the family what they do with it.

Silvery, holier than though virtue signalling? I prefer to call it counteracting gossip and speculation about the death of a little boy and his family with a little compassion, respect and human decency, but there we go.
Of course people can comment within Mumsnet guidelines, doesn't make what they are saying right though and so other Mumsnet members are perfectly entitled to express their disgust at these comments. However, now it has been pointed out that commenting to fill this thread won't necessarily lead to it being deleted any quicker or at all, then I won't bother commenting anymore as that was half my intention.

Puzzledandpissedoff
You're right of course, but it's interesting that the self appointed, would-be censors now feel that we shouldn't discuss a fundraising page unless we ourselves have donated

Taking that principle to its logical conclusion would bar debate on just about anything we aren't personally involved in, which would be the end of a lot more than just these threads

How very true - I'm in my 70s and I don't have enough time left to study to become a world class paediatrician and/or barrister to enable me to be qualified enough to post.

I shall therefore continue to post to the best of my ability.

Interesting, thanks for the explanations.

I do agree that these things should be better regulated or at least more transparent

@GnotherGnu thank you for posting that intelligent and compassionate article. For those who haven't read it - it summarises many of the issues and the case from a legal perspective, and argues that the kinds of "Charlie's/Alfie's law" that have been proposed are regressive, unhelpful steps.

I do think that the discussion on the whole has been sensible and well balanced, and of course not everyone agrees, but there are important issues raised here that can be discussed beneficially rather than swept under the carpet.

I would hope that any action taken after Alfie's passing would mean that the next time something like this happens we DON'T have all this performance, people understanding facts and countering misinformation is important for the welfare of the child, most importantly the right to privacy that Alfie so sadly lost.

I am sure that there will be another case like Alfie's before long, but handled differently it needn't cause the uproar that poor Alfie's case has. That is what needs to be looked at, and it is unpleasant to discuss things around a childs death and grieving parents, but that doesn't mean that not discussing them would be right either.
As for the money, I think people donate to all sorts of things for all sorts of reasons and it is entirely up to them. My concerns are based on people apparently now asking for refunds, as I do think it could turn ugly if people feel they aren't being informed or treated fairly, they feel they have 'bought into' Alfie.

I didn't donate as I didn't agree with it, but I have donated to water aid, bought a malaria net which will save two people for three years from malaria for the princely sum of £1.44! I will be donating to AH, where I know for certain the money can be put to good use. I don't think that means I am unable to comment on things I haven't donated to though!

I am surprised UK has no regulations about donations and that anyone can open a fundraiser. What about tax and fraud?

Somebody please correct me if I'm wrong, but aren't "gifts" of this type tax free?

As for fraud it's a bit difficult, even if a case stood a chance, to see who'd be responsible for bringing it. People might moan that they've been "done", but I can't imagine anyone going to such trouble for the sake of a modest sum donated in emotion-fuelled haste

Which is doubtless how some get away with it ...

The other reasons discussion like this should be allowed is to counter the free running belief being spread on the likes of the aa page.

People are believing what they are reading. Without an opposing voice these beliefs will grow. It is why we have a multi party parliament, a monopolies commission, courts of law and the right to defence and prosecution lawyers.

I have seen more than one person on the dignity4life page starting to argue alfie’s case only to stop and say hang on, i didn’t realise or know x, y and z, that changes my view. People who honestly believed there was a chance of recovery from aa, faced the reality.

The objects of the CGF do not refer to trying to change the law. Pasted below. I would not personally advocate any change in the current laws, which put the best interests of the child first. I do think that Connie Yates and Chris Gard need to be very clear about the purpose of the charity, as some might donate in respect of these objects, but not advocate a change in law.
FOR THE PUBLIC BENEFIT, TO PROMOTE AND PROTECT THE PHYSICAL AND MENTAL HEALTH OF SUFFERERS OF MITOCHONDRIAL DISEASE AND THEIR FAMILIES AND CARERS BY ALL OR ANY OF THE FOLLOWING MEANS:
(1) PROVIDING FINANCIAL SUPPORT FOR RESEARCH INTO METHODS OF DIAGNOSIS, TREATMENT AND MANAGEMENT FOR MITOCHONDRIAL DISEASE AND RELATED SERVICES, AND TO HELP PUBLISH AND DISSEMINATE THE FINDINGS OF SUCH RESEARCH;

(2) RAISING AWARENESS ABOUT ALL AND ANY ISSUES RELATED TO MITOCHONDRIAL DISEASE AMONG THE PUBLIC, MEDIA, LEGISLATORS AND AMONGST HEALTHCARE PROFESSIONALS;

(3) PROVIDING TECHNICAL ADVICE TO GOVERNMENT AND OTHERS ON MATTERS RELATED TO MITOCHONDRIAL DISEASE, AND COMMENTING ON PROPOSED OR EXISTING LEGISLATION IMPACTING SERIOUS MEDICAL TREATMENT CASES; AND

(4) PROVIDING FAMILIES LIVING WITH MITOCHONDRIAL DISEASE WITH INFORMATION AND SUPPORT, INCLUDING FINANCIAL SUPPORT WHERE POSSIBLE. FOR THE PURPOSES OF THIS CLAUSE "MITOCHONDRIAL DISEASE" MEANS ANY OF THE GROUP OF CHRONIC, GENETIC DISORDERS CAUSED BY DYSFUNCTIONAL MITOCHONDRIA AND "SERIOUS MEDICAL TREATMENT CASE" HAS THE SAME MEANING AS GIVEN IN PRACTICE DIRECTION E, SUPPLEMENTING PART 9 OF THE COURT OF PROTECTION RULES, 2007. NOTHING IN THIS CONSTITUTION SHALL AUTHORISE AN APPLICATION OF THE PROPERTY OF THE CIO FOR THE PURPOSES WHICH ARE NOT CHARITABLE IN ACCORDANCE WITH SECTION 7 OF THE CHARITIES AND TRUSTEE INVESTMENT (SCOTLAND) ACT 2005 AND SECTION 2 OF THE CHARITIES ACT (NORTHERN IRELAND) 2008.

No one is saying in anyway that the parents shouldn't be able to give him the send off that they want.

Yes they are. A few posts back someone has said they hope they have a private funeral to 'grieve properly' fgs.

And just because some other dark corner of the web is slating the parents doesn't mean MN shouldn't think about how they want posters to behave.

I've posted a few times - I felt the disruptive behaviour was wrong but I cannot believe people are now expecting statements about money and moaning about balloons. And the funeral costs question was very disingenuous so let's not be all naive about it.

Noeuf, I was the poster who asked if funerals for children were free. I genuinely wanted to know. I honestly didn't think they were so was surprised that quite a few posters on another forum said they were.

There was no hidden agenda in my question

You'd been told they were on another forum and rather than google thought you'd check here? Because that wouldn't trigger any discussion would it?

I honesty wouldn't worry, @mydogisthebest; on MN there's often someone who clearly feels they have an inside track to your mind and is ready to tell you what you really meant, or even to claim you wrote something you didn't at all

It happens all the time and I find it's best ignored

You'd been told they were on another forum and rather than google thought you'd check here? Because that wouldn't trigger any discussion would it?

What is the problem with discussion? I wasn't aware funerals for children were free, so by posting here at least one person has learned something.

Lots have people have said they have learned a lot about end of life care, medical ethics etc from these threads.

Education is always valuable. And i think that is the problem I have with pages like the AA one- the absolute refusal to consider any other opinion or fact other than the party line.

Yeah don't worry. Wouldn't want anything to interrupt your cost chats about this - thread 7 is it?

I would like to point out that those commenting on this thread are not the ones who dragged the whole thing into the public domain and onto social media. Those who did so really can't do that and then expect people not to discuss it and not everyone is going to agree.

No-one has discussed any of the other children who may have died at AH this week simply because their families have preferred to deal with their grief in private.

The worry i am having now is that anyone who dares question is being blocked, deleted and bullied into being quiet.

Even here people are telling us to shut up.

Alfie’s page was set up and his case freely discussed by those on that page- a page that is being monitored by alfie’s own family- as long as the discussion doesn't question.

Same with the balloon argument, it’s just been shouted down. There was a lot of comment on a local page asking nicely not to do a balloon release at a local beauty spot. The admin have simply deleted all those posts because they are stirring trouble and they want a “peaceful” event.

If they do try to introduce alfie/charlies law i will not be shouted down. Everyone has a voice, even if we don’t all agree. As aa says, this is not a communist country and free speech is a right.

If they do try to introduce alfie/charlies law i will not be shouted down.

Nor will I. I am extremely uncomfortable with any change in law that will erode the rights of children in favour of the parents. I intend to be very vocal if this gains traction.

I agree about free speech, but also this has been an ongoing situation with lots of developments, of course it is going to go on for a few threads and while the balloons might seem a trivial issue, for some people it is a huge isssue with far reaching consequences.

The ramifications from this case could potentially affect everybody. Thankfully my children are adults now, but I would be hugely concerned for future generations without the protections our children currently have. I noticed somebody had suggested a tree or bench outside AH, but they were criticised as Alfie 'wouldnt want to have anything to do with that evil place', yes the place that supported him for over a year when he would otherwise have died and the knock on effects of parents now refusing to use an 'evil' hospital. I would stll speak out if I think an injustice is being done, keeping quiet benefits nobody.

@Newname12 it's not that discussion should be shut down, it's more that slagging off the family for releasing balloons just hours after the baby has died is crass beyond belief. As is discussing his funeral. This is the funeral of a baby people are speculating on. I'm no fan of AA but my god some posters on here are seriously lacking when it comes to empathy and respect for the dead.

Well said Newname12

Agree fenneltea I trust those who think the hospital is 'evil' will not be availing themselves of NHS care any time in the future?

BuntyII It's too late after hundreds of balloons have been released and caused who knows how many deaths to animals in the process. No-one is slagging anyone off but people are entitled to point out the negative outcome of such an event.

Silvery. Absolutely! Some people didn't know children's funerals were paid by the government in England. Including me.

My sister paid for her daughter's funeral but that's probably because they are not in England but are in the UK.

Maybe some people will have learnt about the selfishness of releasing hundreds of balloons and the devastating effects they cause.

There again you can't educate stupid!

I don't think that there is a lack of empathy in people questioning it, and as for respect, I just wish little Alfie had been afforded more respect in his short little life, it won't trouble him now bless him.

This discussion isn't unique to mumsnet, there are dozens of forums discussing it, I think this is one of the more reasoned sites tbh. It is part of the package when you use social media and the public in the way that they have been used, but you can't blame people for discussing the outfall of it all.