The Charlie Gard case

Ouch.

I ran into the story a while ago, and couldn’t find too much information about it back then. However, the parents have just been turned down by the next court and now apparently plan to take the case to the Supreme Court. That’s resulted in more attention for the story, with more background.

Here are two places where you can read more about the case if you’re not familiar with it:
http://www.bbc.co.uk/news/uk-england-london-40047485

https://researchingreform.net/2017/04/12/london-live-interviews-researching-reform-on-charlie-gard/

http://www.bailii.org/cgi-bin/format.cgi?doc=/ew/cases/EWHC/Fam/2017/972.html

In the online discussions, I see something that I also recently mentioned in an essay I wrote and I feel the need to say something about that. (I have also submitted a comment elsewhere.)

Yes, it is true that the British medical profession can be extremely arrogant. As a Dutchwoman who previously lived in the US and is now based in Britain (in Ashya King’s city, I might add), I too feel that the medical profession generally still has that ridiculously old-fashioned god status in Britain. I’ve for instance been ridiculed by an ophthalmologist for asking about possible side effects of a medication, only to find that it did cause serious problems for me. (Thankfully, we have the internet now, which can help us solve such relatively minor problems and bypass physicians who don’t like assisting emancipated patients.) Some people have mentioned Ashya King’s case within this context.

Having said that, Charlie Gard’s case – heart-breaking and difficult – also has a strong element of the opposite. We are now in an era in which doctors are increasingly often perceived as “playing God” when they do NOT do everything in their power to prolong a baby or an adult’s life artificially, no matter how high the cost to the individual in question.

Charlie Gard’s case is not comparable with Ashya King’s case.

Charlie was born with a condition that normally means the infant won’t live very long. I understand that of the few children with his condition, his situation is the worst. Ouch. One can ask whom prolonging Charlie’s life benefits, Charlie or his parents. This will sound incredibly harsh to many and I understand that. It is okay to be very angry with me for that comment.

(I understand, really. I grew up with illnesses and deaths in my very close surroundings; it concerned my mother, one of her sisters and one of her brothers. They died of different kinds of cancer. My mother suffered greatly and for many years, after having been misdiagnosed twice. My youngest sister almost died after she was misdiagnosed when she was 4 or 5. She ended up in critical condition and had to be cooled with ice to keep her fever alone from killing her.) If it hadn’t been for the persistence of my dad, she would never have had the chance to develop into the successful business owner she is today. So, yes, I do know about losing people and wanting to hold on to them.)

On the other hand, allowing Charlie the experimental treatment in the US could yield very important information that may not benefit Charlie but could benefit future infants with mitochondrial DNA depletion syndrome or even other conditions. Could that be worth it? Hard to say.

What would Charlie want? Can you place yourself in Charlie’s situation for even a moment?

Ashya King, by contrast, was a healthy and much older kid who developed a brain tumor. Even with the traditional treatment, Ashya had a fighting chance and treating Ashya as well as possible was certainly going to benefit Ashya (even though there is never a 100% guarantee).

And it has.

One of our problems is that we badly need global regulations for all kinds of medical situations, regulations that people from all sorts of backgrounds all over the world can agree with. The lack of it currently not only causes medical tourism but also the kind of heartbreak we now see in the Charlie Gard case.

If I put myself in the parents’ shoes, I say that most of the hurt and upset for them is currently coming from the legal process. The uncertainty. Even possibly the knowledge that every day they spend in court is one day on which he is not getting the experimental treatment in the US. Unassisted, nature would have already allowed Charlie to cross the rainbow bridge and be at peace and the parents could have had a more normal mourning process.

Is Charlie at peace now? Is he not? How can we know?

It might be possible to avoid this kind of agony if we had much more clarity about what to do to limit harm to such a child as much as possible. Such regulations will have to be a compromise, obviously, and can never avoid heartbreak (but heartbreak is also a normal part of life; life does not come with guarantees and the losses make us cherish what we have).

Conditions like Charlie Gard’s also play a role in the new eugenics, currently particularly in the selection of embryos for IVF procedures, a rapidly growing practice, and soon in the creation of designer babies. It is an incredibly difficult topic that is screaming for attention. So I just wrote a rather provocative essay on it, in a hurry. It is called “We need to talk about this” (the second edition is already in the works) and includes a definition of what constitutes a life not worth living. I have based it on the principle of humanity, namely that every human being has the right to a life in dignity. During the writing of that essay, I grew very depressed a few times, because it is such a hard and dark topic. But we really do need to talk about this, sooner rather than later.

I wish the judges and the parents wisdom and strength and little Charlie lots of eternal sunshine of every possible kind.

 

 

Policing matters at the Supreme Court

Today brings the start of three days of policing matters at the Supreme Court:
courthouse

  • R (on the application of Catt) (Respondent) v Commissioner of Police of the Metropolis and another (Appellants)
  • R (on the application of T) (Respondent) v Commissioner of Police of the Metropolis (Appellant)

Both cases concern the right to the protection of citizens’ privacy, notably regarding the length of the time certain matters remain part of police records.

The first case looks at whether the retention by police of data relating to an individual’s involvement in one or more protests was lawful in terms of art.8 ECHR.

The second case is a judicial review on whether the retention by police of information relating to a letter issued to the respondent following an allegation of harassment was lawful in terms of art.8 ECHR.

Continue reading

Housing matters at the Supreme Court-2

Another case coming up soon is Hotak v London Borough of Southwark. This case centres on the question “Is a vulnerable person still a vulnerable person in terms of housing needs if he has a family member to look after him?”

The background is more or less the opposite of bedroom tax craziness. Two brothers were living with a friend; one brother was looking after the other. The two were informed that this was overcrowding, and that they had to leave.

So they applied for housing assistance. The council agreed that they were “unintentionally” homeless, but the council didn’t consider the vulnerable brother a priority because his brother looks after him. (That essentially is a go-ahead for making them both homeless.)

The vulnerable party has learning difficulties, has self-harmed and has had symptoms of depression and post-traumatic stress disorder. He relies on his brother to be able to cope with life, including matters of personal hygiene.

Housing matters at the Supreme Court

The Supreme Court will soon deal with two interesting cases concerning housing law and homelessness. The one that has most of my attention is Aster Communities Ltd v Akerman-Livingstone.

court houseQuickly summed up, it is about a man whose specific medical condition (a psychiatric injury as a result of a series of traumatic stressors) led to his local housing authority wanting to evict him from his temporary home, and then rehome him somewhere else. I think I understand his housing authority’s reasoning (which sees this differently, namely as purely following the rules), as well as the tenant’s situation.

In 2010, Mr Akerman-Livingstone was homeless. He has a severe prolonged duress stress disorder (PDSD, which I explain at the bottom of this post). When he went to his local housing authority, the Mendip District Council, the Council accepted that it had a housing duty toward him, a vulnerable citizen with priority needs. It gave him a home.

It is not entirely clear to me whether his disability is generally accepted or not, but that does appear to be so. The Court of Appeal’s judgment states that ‘he is a very sick man’ under 2, but ‘even assuming that Mr Akerman-Livingstone is able to prove his disability to the full’ under 5. In 2010, the District Council agreed that it owed a duty to him as someone with priority needs. This means that the District Council accepted that he has a disability. In 2012, the District Council again accepted that Mr Akerman-Livingstone has this disability, when he applied to them again as he was being threatened with homelessness as a result of the eviction proceedings that are at the heart of this case. So his disability appears to be fully accepted.

Why is he being evicted, you ask? Was he was causing problems for neighbours or had he developed serious rent arrears? No. There were no problems. The underlying reason for the eviction is that the District Council saw his current flat as merely the man’s temporary home. He cannot continue to live in his current home, says the District Council, because it wants to be able to give his current home to someone else who is homeless (likely also on a temporary basis). One can reasonably ask why the District Council does not simply give the homes they offered to Mr Akerman-Livingstone to other persons who are homeless and let Mr Mr Akerman-Livingstone continue to live in his current home. Problem solved, one would think, but real life is rarely that simple.

The problem started when the District Council wanted Mr Akerman-Livingstone to leave his current home and choose a different property where he would then have to move to. Because of his disability, he could not cope with that idea and everything it involved. His uncooperative response was considered ‘rejection of offers of suitable accommodation’ although it is a direct result of his specific psychiatric condition. It is like faulting a blind person for nor passing a vision test, in this very specific case. If Mr Akerman-Livingstone had not had this specific psychiatric injury, he would not have had such a problem coping. Essentially, the man requires peace and quiet and needs to be left in peace. Anyway, the District Council gave up and considered itself released from its obligation to house Mr Akerman-Livingstone.

The District Council then asked the housing association (Aster Communities Ltd, formerly Flourish Homes Limited) to start eviction proceedings against Mr Akerman-Livingstone so that the District Council could give his home to a different homeless person. When the housing association did this, Mr Akerman-Livingstone (presumably someone acting for him as his solicitor) responded that this was discrimination against him because of his disability (the PDSD). That, so he said, was in breach of Section 15 of the Equality Act 2010.

The court had two options for dealing with this: to proceed to a full trial to decide about the discrimination issue and then rule on the eviction or deal with the matter summarily, that is, take the shortcut that takes up a lot less time and money and which is what usually happens in eviction proceedings.

Not surprisingly, Mr Akerman-Livingstone wanted a full trial. Equally unsurprising is that the housing association did not. On 7 June 2013, the sitting judge agreed with the housing association.

To be allowed a full trial, Mr Akerman-Livingstone needed to have a seriously arguable case (that is, a fighting chance to win that case) in the eyes of the judge (judge Denyer). The judge did not think so and ordered the immediate eviction. Mr Akerman-Livingstone’s lawyer filed an appeal against this, but that appeal was rejected on 14 October 2013 by a second judge, at the High Court. Next, Mr Akerman-Livingstone’s lawyer appealed against the decision of the second judge. That appeal was heard in London, at the Court of Appeal, by Lady Justice Arden, Lady Justice Black and Lord Justice Briggs.

The Court of Appeal felt that it needed to answer two questions:

  • Should there be a full trial or not?
  • What would Mr Akerman-Livingstone have to show to prove his case? That was needed in order to be able to answer the first question because if Mr Akerman-Livingstone’s lawyer would not be able to prove his case, then there is no obligation to hold a full trial to decide about the eviction.

Well, said the Court of Appeal, even ‘if Mr Akerman-Livingstone is able to prove his disability to the full’, if Aster can show that the eviction proceedings are ‘a proportionate means of achieving a legitimate aim’ in the sense of Section 15(1)(b) of the Equality Act 2010, there will not have been unlawful discrimination.

That said, the burden of proof is shared (Section 136 of the Equality Act 2010), continued the Court of Appeal, and that means that Mr Akerman-Livingstone ‘has to do no more than show that there are facts from which, in the absence of some other explanation, the court could conclude that Aster had discriminated against him.’

The Court of Appeal then looked at what the lower courts had done, and at what the European Court on Human Rights (located in Strassbourg, France) had said about related matters and similar cases. The Court of Appeal ended up agreeing with the judge who had sat in the High Court (the second judge, Justice Cranston). It felt that Mr Akerman-Livingstone’s case was not seriously arguable as his interests were not seen as heavily outweighing those of the housing association (proportionality).

The question as to what kind of tenancy Mr Akerman-Livingstone has did come up at some point, but is not important within this context.

First, Mr Akerman-Livingstone would have to show that to be evicted would amount to discrimination because of his condition (the PDSD).

Section 15 (Discrimination arising from disability) of the Equality Act 2010 says:

  • 15(1) A person (A) discriminates against a disabled person (B) if—
    (a) A treats B unfavourably because of something arising in consequence of B’s disability, and
    (b) A cannot show that the treatment is a proportionate means of achieving a legitimate aim.
  • 15(2) Subsection (1) does not apply if A shows that A did not know, and could not reasonably have been expected to know, that B had the disability.

This shows that the case hinges on 15(1)(b). 15(1)(a) appears to be the case and 15(2) does not apply. If the housing association and the District Council had not known about Mr Akerman-Livingstone’s disability condition, it would have been impossible for them to be guilty of discrimination, as a person is not able to discriminate on the grounds of something he or she does not know. That was likely never a serious point of debate, as Mr Akerman-Livingstone had been given his current home in 2010 because the disability classified him as a vulnerable person with priority needs and in 2012, the District Council again accepted him as a person with priority needs.

It is often very hard to prove discrimination; that is why the burden of proof is shared (Section 136, Equality Act 2010), which means that the other party also has to show that it did not discriminate:

  • 136(2) If there are facts from which the court could decide, in the absence of any other explanation, that a person (A) contravened the provision concerned, the court must hold that the contravention occurred.
  • 136(3) But subsection (2) does not apply if A shows that A did not contravene the provision.

The real problem seems to be that it is the Housing Act that appears to be doing the discriminating – puts Mr Akerman-Livingstone at a disadvantage because of his disability – because it does not define ‘refuse’ and appears to contain no provisions for anyone who can be seen as ‘refusing’ an offer of housing when that ‘refusal’ is a direct consequence of a disability. In this case, the ‘refusal’ is an integral part of Mr Akerman-Livingstone’s disability. His condition led to the tick mark in that box that allowed the District Council to consider itself released of its duties toward Mr Akerman-Livingstone (which then in itself led to new duties, as the District Council releasing itself of its duties and starting eviction proceedings against him threatened to make him homeless again).

The man requires peace and quiet, not yet another upheaval and series of stressors. Moving home is one of the major life stressors, and the mere thought of having to decide on where he wants to move to next apparently already is too much for him. Moving home may aggravate his condition.

Frankly, I believe that the housing authority (the District Council) and housing association would have done a better job managing everyone’s resources including their own if the District Council had simply housed someone else in the properties offered to Mr Akerman-Livingstone and allowed Mr Akerman-Livingstone to continue to live in his current flat, as I already mentioned. Generally speaking, though, any party is free to choose to either carry out bad management or good management if it has the right to carry out that management and does not infringe on other parties’ rights.

There is another twist to the story. The head lessor is not Aster Communities Ltd but a property developer and the property developer apparently has asked Aster to deliver up the premises without any tenants in them. If that is the case, then the argument that the rights of other homeless persons are just as important as the rights of Mr Akerman-Livingstone might no longer apply (although the District Council’s new housing duties toward Mr Akerman-Livingstone appear to be less than what they were in 2010).

If it is indeed the case, however, that the District Council wants to evict Mr Akerman-Livingstone from his flat so that it can give the flat to someone else who is homeless, then in theory, it could end up rehoming Mr Akerman-Livingstone in the same flat from which he is being evicted (and that might even be with the head lessor as his new landlord, instead of Aster Communities Ltd).

Moreover, perhaps the District Council could have foreseen this course of events – in view of the man’s specific medical condition – when it housed the man in 2010. It could have prevented it. It could have given him a home it considered long-term housing and not just temporary. (It may not have been in a position to do that; it depends on the circumstances.)

It appears to be the housing and homelessness charity Shelter that is instructing the lawyers acting for Mr Akerman-Livingstone.

I am interested in the response from the Supreme Court. Decisions by the Supreme Court can have far-reaching consequences.

I emphasise that the above is just a general description of the background of this case. I also add that, unlike what the public may often think, justices and judges rarely have the freedom to apply their personal view and sometimes are forced to decide in a way they wish they did not have to. They have to take other cases into consideration, for example, and apply the law consistently.

—–

PDSD stands for Prolonged Duress Stress Disorder, but this is an outdated phrase. The correct name of the condition is Complex Post-Traumatic Stress Disorder or Complex PTSD. The current Diagnostic and Statistical Manual of Mental Disorders (DSM-5) considers PTSD a condition related to trauma and stressors, and includes Complex PTSD (or PDSD). DSM-5 was published on May 18, 2013. The previous edition of the DSM included PTSD but not the variant Complex PTSD, so I understand.

Someone with PTSD, complex or otherwise, can either be the victim or the witness of trauma. More specifically, it can concern:
1. Directly experiencing the traumatic event(s);
2. Witnessing the event(s);
3. Learning that the event(s) occurred to one or more close relatives or close friends;
4. Experiencing repeated or extreme exposure to aversive details of the event(s).

I guess you could see someone with Complex PTSD as someone who has been hit with a  baseball bat very badly, figuratively speaking, over and over and over, again and again, and who never got the chance to recover. That is just my lay person’s view, however.

See also this short later post.