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News

Charlie Gard 12

999 replies

muckypup73 · 19/07/2017 11:58

This is a thread following the legal and ethical questions raised by the recent court case involving Charlie Gard.

Please could we refrain from insulting or otherwise "bashing" his parents. It isn't in the spirit of Mumsnet and will get the threads removed.

Please could we also remember that at the heart of this case is a terminally ill baby and his heartbroken parents. There are those participating in and watching this thread for whom these issues are painful. Please let's try and be mindful of them when we post. This isn't a place for name calling or trivialising the very real pain they feel. Many parents of severely disabled children are on here.

Lastly, here are some hopefully useful reference points of facts surrounding the case.

13 July GOSH position statement on latest hearing (includes update on Charlie's condition):
www.gosh.nhs.uk/file/23611/download?token=aTPZchww

7 July GOSH statement on Charlie:
www.gosh.nhs.uk/news/latest-press-releases/latest-statement-charlie-gard

June 2017 Supreme Court decision:

May 2017 Court of Appeal Decision:
www.bailii.org/ew/cases/EWCA/Civ/2017/410.html

April 2017 High Court Decision:
www.bailii.org/ew/cases/EWHC/Fam/2017/972.html

GOSH FAQ page on Charlie:
www.gosh.nhs.uk/frequently-asked-questions-about-charlie-gard-court-case

OP posts:
smilingmind · 19/07/2017 23:06

Someone posted earlier about their DH being medivaced, or potentially medivaced, from Africa.
The plane had to be unpressurised because as you say oak the patient could not withstand pressure.
I think the plane had to be a turbo prop. Propellor not jet as they can fly lower. Really getting out of my comfort zone here so happy to be corrected.
The propellor planes I have flown in were unpressurised and didn't go higher than 10,000 feet as any higher could have caused altitude sickness and potential loss of consciousness. Not a good idea for the pilot even if it kept the passengers quiet.
I think they said it took 5 days home with frequent stops for refuelling.
When I worked in aid in Africa I had a sticker on my landrover with the name of a medivac company to contact if I had a serious accident. The company was based in South Africa.
Luckily I never had to use it and nor did anyone I knew so know little about the logistics of it.

smilingmind · 19/07/2017 23:10

Thank you Bubbles was trying to find out what a ward of court is and wasn't sure if what I read applied to Charlie.

WeDoNotSow · 19/07/2017 23:20

If Charlie was a ward of the court, I don't think his parents would be in a position to take the hospital to court? As they wouldn't have parental responsibility, it would be out of their hands

GabsAlot · 19/07/2017 23:21

som similarites from th othr case namly accusing nurses an doctors of not caring etc

but this struck me as important

the feelings of the parent although understandable are irrelevant

sorry if it sound harsh but its tru even in this case

its whats best for charlie not for them

Deux · 19/07/2017 23:35

@smilingmind. That was me. I think the logistics are really poorly understood, you're right. That's what drew me into these threads as I kept thinking how on earth are you safely going to get a very ill ventilated baby to America without him dying on the way?

I realise Africa to UK is a different kettle of fish as the air route had to take into account airspace that was too dangerous to fly over at lower altitudes e.g. Somalia.

It was quickly ruled out as the doctors were fairly confident DH would not have survived the journey (ventilated, dialysis, numerous pumps and drips).

They described it as hugely "stressful" for the patient, stressful in a medical sense. But importantly it was not in the patient's best interests.

The insurers via DH's work were South African and did try and push it but didn't get very far. We also had an international clean blood service. Was weird coming face to face with Milk Tray man (he was actually French wearing a blue boiler suit thing with SAMU written on the back)and his cooler full of blood at 10pm at night. It was surreal.

Jux · 19/07/2017 23:48

Have been at work all day and trying catch up since I got home (in between doing all normal household tasks), not caught up yet.

Am finding the posts about social media influencing social media very interesting and quite scary!

smilingmind · 19/07/2017 23:50

Thank you Deux I hope I didn't misquote you too badly or make too many technical mistakes.
Also, and most importantly, that your DH got home safely.

Holliewantstobehot · 20/07/2017 00:02

Don't know if anyone's seen this www.macleans.ca/opinion/the-charlie-gard-story-reveals-what-we-wont-accept-about-medicine/ but seems to sum up a lot of what has been said.

I particularly like the bit about having time to say goodbye as I still remember the time we had with my df after he moved to palliative care.

Sandthefloor · 20/07/2017 00:09

Where I work we have had ventilated patients repatriated from overseas. It always takes much longer than a standard flight and depending on the distance can involve a stop over. What I will say is the medivac teams are always incredible chilled and seem to take everything in their stride. It's not a job I would ever consider doing.

Butteredparsnip1ps · 20/07/2017 00:17

I suspect the transport arrangements are moot. I am struggling to imagine any appropriately qualified individual, or indeed any competent medical organisation would accept the risk of transporting a gravely ill baby.

I'm prepared for a few more newspaper articles informing their readers that GOSH have prevented such a rescue though.

Enchantedflamingo · 20/07/2017 00:22

That article is excellent Hollie.

Deux · 20/07/2017 00:40

@smilingmind. My detailed memory is fuzzy and tbh when I think about it too much my heart starts racing and I get a fear-adrenaline rush all over again. DH was 6 months in hospital, 2 in ICU, in Kenya and had amazing, amazing care. A long rehabilitation but he recovered.

I'm not going to bang on about my experiences (see fear-adrenaline rush above).

But, I do get so mad and furious when people criticise the NHS. They won't know how good it is till it's gone. It's just taken for granted.

The fear of not knowing if you'll get to medical treatment in time because there's nothing available that isn't a flight away or a 12 hour drive away. Where at the local clinic an unhealing broken finger will be amputated as you've got another 9 anyway Shock.

OK so,it may be 2 weeks before I can see my GP, but I can see a nurse practitioner, I can go to a walk n centre, I can pitch up at A and E..

Deux · 20/07/2017 00:47

@Butteredparsnip. I think they probably could find staff but possibly they would charge a premium. As I understand it Air Ambulance/Medevac companies have highly experienced Flight Medics on a bank type system. So they're very experienced in Flight medicine. There are even Flight Surgeons. Lots of ex military medics.

smilingmind · 20/07/2017 01:18

@Deux my greatest help was a book called 'Where there is no Doctor'.
My small children also loved 'reading' it. I remember finding two of them giggling over a picture of a breech birth saying 'Look they are putting that baby back'.
I am a very good armchair doctor and did learn what could be treated at home with medication sold openly, no questions asked, at the local pharmacy and what required an up to 7 hour dash to the nearest city depending on where we were at the time.
I luckily was never inspired to perform surgery with a rusty penknife.
Only surpassed by my uncanny ability to diagnose what was wrong with our frequently breaking down vehicles. Of course I had absolutely no idea where the parts I was claiming needed fixing could even be. Sort of well maybe the clutch is at the bottom somewhere.
I'm glad your DH had such good treatment in Kenya and recovered. It must have been so frightening for you and yes it certainly makes you appreciate the NHS (and reliable, clean running water).

NikiBabe · 20/07/2017 01:29

TBH I just wish they would arrange transport privately and go now he is allegedly a USA citizen.

There are £1.3+ million reasons why that doctor in the US wants him over there for treatment. When the treatment doesn't have the effect they want and the money runs out lets see if the USA will give medicare or medicaid for a life time on life support. I doubt it.

These people have made a mockery of our NHS and of one of the greatest children's hospitals in the world. There are Americans saying online that they are glad Obamacare will be gone as this is what state healthcare leads to: murdering sick people because of funds which is exactly what the US does on a daily basis to patients who cant afford it.

One particularly ignorant US citizen said thank god they threw off our tyrannical rule 200 years ago. Obviously forgetting they couldn't get along after we left and descended into civil war, slaughtering each other barely a century later. They also forget that thousands of children in the US suffer without basic healthcare they cannot afford but don't seem to care.

As far as I am concerned they should just get out and let the US taxes pay for him. Once he has gone and as a US citizen we have no obligation to ever take him back and I doubt there is a hospital here that would.

I wonder how willing the US govt will be to keep him alive off the backs of their tax payers. In the US it is all about money whereas over here it is about the childs welfare. If we thought it would work he'd have had it by now. We deem it unethical to experiment on a terminally ill child whereas the US Drs will do anything as long as you pay them to.

Deux · 20/07/2017 01:33

smilingmind. And don't forget the electricity! We had regular outages at inopportune moments. I can laugh about it now but it was grim at times. I could have done with that book. You could buy diazepam over the counter, my friend's MIL used to go home with a ton of stuff.

Our house help stole all our paracetamol and teaspoons. She screamed her head off muttering 'Juju' and ran out when I was showing her how to use the hoover. Smile. She brought me a live chicken with its feet tied together after we got back from hospital. A hundred lifetimes.

NikiBabe · 20/07/2017 02:14

Also that US Dr has a golden opportunity here. I would wager he knows full well it wont help.

However he has likely never worked with charlies strain before given he is the 15th person to have it. Genuine research takes a lifetime of painstaking work but here the Dr gets to take a shortcut right through living tissue. He can write papers, use the data from Charlie to do so and advance himself all whilst being paid millions of dollars to do it. It is all self aggrandising.

Jux · 20/07/2017 02:40

TBh, I think Dr H is actually a pretty normal guy, who will be truthful about his belief in whether he can help Charlie or not. He won't lie, I don't think.

However, if his belief is at variance with GOSH medics etc, they will say so.

The Judge will decide on the evidence, not on the belief of one expert unless it's sufficiently backed up, and especially not if the other experts disagree.

Well that's what I think, anyway. I have a strong belief in the Court system despite the fact that sometimes they make mistakes.

annandale · 20/07/2017 05:50

I don't think there's any evidence that Dr Hirano is an overweening or unethical doctor. He has shown absolutely no tendency to grab this opportunity for research - quite the opposite. As for the original '10% success' claim that appears to be almost hypnotising the parents (and our media) we don't know what questions he has been asked. I think having had some posts on here about snake oil, after the court case I have certainly learned more about the sheer glittering promise of this therapy for mitochondrial disorders. Very exciting and i think we all now feel simply sad that it's about 3 -5 years too early for it to be any use for the baby here.

Sostenueto · 20/07/2017 06:01

It is false news about US citizenship.

RMC123 · 20/07/2017 06:55

Great article Hollie

Sostenueto · 20/07/2017 07:40

Muckypuppy are you about?

oakleaffy · 20/07/2017 07:41

Smilingmind Thanks for info re.pressure and medivac planes.

muckypup73 · 20/07/2017 07:42

Sostenueto, good morning, I am now.

OP posts:
opinionatedfreak · 20/07/2017 07:44

Retrieval (moving kids from DGHs into centralised Paediatric Intensive Care Units, or moving kids between intensive care units for more specialised services e.g.ECMO) is one of my areas of professional interest.

Moving an intensive care patient is a big undertaking especially when there are multiple modes of transport involved.

Typically a team consists of a doctor or highly trained nurse (Retrieval Nurse Practitioner). These people can intubate, put in specialised lines, prescribe drugs, decide to change drugs/treatment tack and make ventilation decisions. They will be accompanied by an experienced ITU nurse who has specialised training to work on the team. Between them the hcp will usually have a wealth of experience of critical care and the ability to troubleshoot any patient or equipment issues that may arise.
Most UK services have their own ambulances and ambulance technicians who bring complimentary skills to the table - setting up kit: ambulance restraints (special harness to keep children safe on the trolley in the event of an accident), setting up the monitor and most importantly for the team I work on they often spend time with the family - running through the process, telling them clearly (often with maps) where there child is going, what will happen, reinforcing that if any family members are travelling independently to the new hospital they shouldn't tail gate the ambulance for safety reasons. They don't deliver clinical information but families need practical info (parking, will they get accommodation) and our techs deliver it brilliantly freeing up the clinical team to stabilise and move the patient onto the transfer kit.
Flying requires modifications to kit for space and clinical reasons - smaller monitoring devices, more batteries (as not all planes/helicopters have a power source that can be used). If it is a long journey you need to calculate that you are carrying enough medical gases (oxygen/air) and drugs, extra blankets as it can be cold. You need to make sure you have provision for team rest breaks eg. You might take a third clinical person to facilitate this.

Logistically you need to calculate where you are flying from & to (london- Iceland-USA has been my experience) how you are going to get to the uk airport (usually easy), how you are going to get to&from the foreign airfield. This is often more complex and the lack of certainty e.g. Will they have medical gases you can use, will they have a power supply often results in even more redundancy being built into the transport plan (more oxygen/ more batteries!).
You need to make sure you know exactly where the patient is going to eg.my hospital has about 6 itus over two sites - transfer team needs to know which ITU on which site.
You need to make sure staff and patient (and parents if travelling with you) all have appropriate travel documentation and visas.

On a practical level during a long transfer you need to make sure staff have food/fluid, access to the loo and comfortable clothing - a cold helicopter is not the place to be wearing a flimsy nursing tunic!

Retrieval is very process driven with lots of checklists. Families often find it disorientating as we stand there checking off - patient labelled, ventilator attached, spare gas, monitor on, drugs attached, phones present, notes on trolley but it is really important. You don't want to be the doctor who left the notes in Manchester and brought the patient to London...

I hope this helps to answer some of the "how would they move him questions". In summary it is eminently possible, but it is a big faff and poses risks to the patient but also parents and staff. Travelling in a blue light ambulance carries considerably more risk than a standard car journey... as a result where possible most retrieval services will travel off blue lights if their patients clinical condition allows eg. Moving round london in rush hour - blue lights to get through traffic. Moving at 5am on a Sunday morning = no blue lights and generally driving on the correct side of the road!