After the last goodbye.

[BongoJim]

I know the last thread was removed because there was too much speculation and I get that. I believe a lot of people shared a lot of personal stories and experiences which were important and gave powerful insights. Would we be able to continue the debate without the speculation (start your own topic for that) and instead just continue to debate where cases like this need to change going forward, how court processes can change as a result of such difficult cases and what lessons can be taken from this awful case without it being a thread about a thread? It would be a shame to lose being able to discuss every other aspect of an important debate just because one aspect of it is problematic for MN. Is it even possible to continue debating the wider implications thrown up by a case like this? If it's not then my all means MN please delete. 🥺

Precisely. That could well be an area for change. Nobody is saying parents should not be allowed to take photos, it's just what happens with those photos afterwards that can be problematic. If we want anonymity for the patient then wider sharing of pictures can undermine that and compromise patient and staff safety. I'm glad some people understand what we are debating anyway, thank you. ☺️

www.expressandstar.com/news/health/2019/10/17/walsall-council-and-nhs-apologised-as-father-wins-one-man-battle-over-daughters-care/
This is just one example where anonymity which was actually what the health service tried to engorce would have meant dreadful treatment. Public scrutiny is important in many cases.

After speaking publicly about his daughters care - The case took a new twist when Walsall Council took out an injunction to try and prevent the father from complaining about her care.

I remember the case of the child with the brain tumour. The parents wanted proton beam therapy as opposed to the radiotherapy that was standard in the UK at the time. The child was made a ward of court and the parents took him to Prague via Spain I think. They were tracked down but weren’t prosecuted as far as i remember. I would be interested to know what the long term outcome was although the child had a fairly good prognosis anyway so it may not be clear whether the benefits of what they did outweighed the risks.

Read the actual OP

No one is suggesting drs are always right. No one is suggesting not to use the court system.

Everyone agrees they need to be there for the protection of all parties - in this case it was a child who 2 parties couldn't agree what was best for them. Best interests must always be the priority.

And if people read the timeline properly the initial court proceedings were brought by the hospital because the parents refused to allow tests that would determine the full medical picture.

What we are discussing and have done quite well for a number of weeks is the media reporting, the freedom of speech allowing some awful emotionally charged accusations to be said and then broadcast and how we can protect the person who is the subject of the court proceedings because they can't do this for themselves. Also how to protect parties from having their names posted on SM on letters etc. that puts them at risk.

And especially when one of your legal arguments is about dignity!

Also staff support and protection needs to be considered. We won’t be able to staff picu if this isn’t addressed. In a previous high profile case - 40% of the staff left. The statements Bart’s Health released were good so hopefully they have a proactive senior management team.

I caught some of the BBC interview - lots of emphasis on communication which absolutely is key but there will always be some cases where it just isn’t achievable despite best efforts from nhs teams. Mediation often doesn’t work as people perceive a them and us scenario.

The nhs team may not have got the communication wrong but the message was too
unbearable to hear.

Not saying nhs is perfect but the staff can’t explain their experience to provide balance.

This is a reminder important point. The staff need support and protection. In this case they (as a group) were essentially being accused of trying to murder the child they were caring for round the clock. I don't know how you would tackle this - you certainly can't ban parents from raising concerns - but I have so much sympathy for the medics here.

@Nat6999 the Antony Bland case actually in many ways shows how it should be done.

The parents and doctors were in agreement that it should be withdrawn and that he should be allowed to die peacefully and with dignity. But at this point the removal of life support was not legally allowed and they were informed by the coroner and local police it would be potentially seen as murder - the House of Lords though allowed the withdrawal and started it on the grounds that it was no in the best interests of the patient to continue.

The lessons though should really be with how to get CAMHs support etc out to those who need it.

Itsgettingweird
If in the case I posted the father had been silenced, what would the outcome have been? The health authority had argued in court that on privacy grounds, Beth's dad should not have been allowed to speak about his daughters treatment in the media.

There is a naivety on this thread which is astonishing. Courts are used by powerful people to silence others.

I think we have to allow people to say what they want.

The media has a duty not to uncritically share what's been said- either gently challenge, or raise the contrary view at the end (though medics have said that xyz...), or edit out the untrue/slanderous bits.

Social media should be using its vaunted algorithms that remove photos of women breastfeeding to remove false news and mentions of a child's name.

It only builds momentum when no one is trying to contain it.

I read widely on MN about this case and your comments were the first ever that made sense to me. Thank you for that. I don't understand how so many people can lack empathy. If my child was "likely" brain stem dead, and nothing is ever 100%, (and I'm a scientist can read evidence thank you very much) I might have behaved the same way as this family, go to every court possible to give him one more day of chance. Why the rush? Why couldn't they move him to a hospice? "not in the interest of the child, he may deteriorate" said, the same doctors who believed he's dead anyway. In the UK you apparently need to go through legal battles to move your dc to another hospital or out of the country. Why?! How can there be so much hubris the one hospital believes they know the best?

This poor family's lives have been ruined, they lost their child, everyone is criticising them.maybe the loudest critiques aren't parents or cannot for some reason imagine being in their shoes.

communication
managing expectations
are a large part of hospital processes

i am sure nhs will learn from this case, further conversations will be had about the above

I'm concerned that the Christian Centre are in the headlines touting reform. We already know they have an agenda grounded in their ideology that a heartbeat equals life. So just say for instance they did bring reform based on that ideology, what would happen in cases of rape where a foetus has a heartbeat?

Did you not read the last thread?
It started off OK but by the end people were just being vile about his family and speculating ,and digging up dirt it was awful regardless of how is mother and family have acted this is a grieving family .

Banning parents from taking photos of their own children in hospital is a frankly idiotic idea.

This goes back to the concept of consent. If a child (or adult for that matter) is unconscious, they are unable to consent, and nok and staff have to decide what is in their best interests. Not in the parent’s best interests.

I wouldn’t want a picture of me, unresponsive and ventilated and in a nappy, sent to anyone

Was Tony Bland actually on life support?
I remember this case as I was brought up as a Catholic and it was discussed regularly during mass along with abortion ( I know ,I know ) as I recall he had his feeding tubes and fluids removed to allow him to die .

apart from social media, i think there is too much media coverage.
top story, front pages
other issues, other deaths are happening

This is what I feel went wrong. So many personal stories were shared and a much wider discussion was sparked which was interesting. That's the discussion I'm hoping to continue because it really was quite thought provoking.

I’m not a lawyer, but I thought that signs saying you cannot take photos here mostly had no standing?

In most healthcare setting I’ve worked in, people are asked not to include staff or other patients but are able to take photos of their own family member. The issue of consent is relevant, but parents of children mostly have assumed consent.

Perhaps when cases do reach court issues of anonymity including photographs should be considered on an individual basis as part of proceedings.

There were concerns on a previous thread about photos of X rays and medical equipment being on social media. Let’s be careful what we are pushing back against here. I started my training when medicine was more paternalistic and patients not allowed to read their own notes. We have made a great deal of progress, but I have colleagues who are still reluctant to share patients information with them because of an outdated prevailing dogma. Just this week, I encouraged someone to take a picture of a new medication she was struggling to remember the name of so that she could discuss it with her daughter, only for a misguided (junior) colleague to tell me she didn’t think that was allowed.

To me, good healthcare is open and accountable. Banning photos without good reason just doesn’t sit right.

Concur with the comments on protecting the identity/image of children from the public domain in such situations. I think it helps if parents may take some phoptos with a careful explanation of what is okay- i.e only of your child and only with staff with clear permission of said staff, safequarding means be careful and wise who you share such images with and so on. For older children a few gentle photos taken of them may help to explain where they were for a period of time they cannot recall if they are in the blessed group and do recover.

DD was involved in a very nasty RTA needing immeadiate life saving and changing surgery. I did not take photos of her for her first round of ops as I was far more concerned if she was able to survive. When she was able to be home she asked what had happened to her as she remembered sometimes waking to a lot of pain before blankness but not the reason why she had such pain. I had not images to show her of why she her leg had such big incissions and the rest of her still had deep cuts and bruises. That blankness of time really bothered her. Thankfully the police liason told her what they had seen and her orthopeadic team made time to talk her through all her scans and xrays and why they gave her such strong drugs so her body could rest and heal a bit before she woke up.

Going forward for all subsequent surgeries she has asked for 'nice' photos to be taken so she could share with her friends so they knew why she is not around for a while.

I have a suggestion for what seems to me to be a missing piece, a void into which groups like the CLC are able to step and exacerbate rather than help the situation.
My working assumption is that the NHS and the legal system have behaved impeccably and have excellent systems in place for the vast majority of cases like Archie’s.
Also the vast majority of families who find themselves in this desperate situation are able to come to a place of cooperation, understanding, and trust with the medical practitioners looking after their child or loved one.

What happens in cases where these relationships break down then is that there is a family who for whatever reason is unable to come to terms with what’s happening to them and for what’s often long established and deep seated reasons can’t trust the people they perceive to be ‘officials’ in the care of their family member.
I know that people in this position are offered counselling and I imagine that again, in many cases, counselling serves both parties to enable the family to cope to the best of their ability and therefore helps to mitigate the effects of the potentially most angry, uncomprehending and disruptive families.
Let me say clearly at this point that I am not judging or blaming people who behave disruptively within these situations; my view is these families in nearly 100% of cases have already been vastly failed by society and society is therefore reaping what it sows.

But what I think needs to be put in place is a specialist team of psychologists and therapists who, when a family is identified as being in danger of going down the disruptive antagonist route, are able to spring into full-time action to give the family maximum attention and maximum opportunity to have all their concerns sympathetically heard and taken seriously as emotional but not factual truth. It is because the Armies and the extreme Christian groups validate the emotions of the families that they gain such dangerous traction.
That validation of emotions (which is what good psychotherapy achieves) needs, therefore, to be taken back in-house by the NHS and the state.
In short, we need to demonstrate a higher level of care for people whose obvious disenfranchisement is given a performative outlet by the drama in which they find themselves.
They are ‘acting out’ in psychological parlance.
At the moment the system seems incapable of recognizing that there will be families that need to do this, that are pre-disposed and primed to do this.
Once we can as a society accept that these cases will arise and that we therefore need to demonstrate a high level of care in place for them in advance, we’ll no longer be on the back foot.
And at that point there’ll be no void for the Armies and the CLC to step into with their whipping up and their nefarious agendas.

Another thing is as much as i believe people should have freedom to express their religion and practice it, i believe the law needs to have no basis in religion. Your religion should have no basis in court so organisations the the CC should have absolutely no skin in the game in regards to reforms.

Also interestingly as a catholic we support life support being switched off. If I remember correctly the catholic angle was what the previous high profile child's family tried to play on and the pope got involved and in the end the pope had to admit Catholics are not against life support being removed to allow someone to die.

Is it a stupid idea to think the curriculum could be updated to include some mandatory useful stuff like financial management and health management- basic medical stuff that everyone should be aware of but aren't eg how the nhs operates, the role of medical stuff, the limitations of medicine, basic knowledge of the most common conditions and their symptoms, the process of dying?