Woman who inherited fatal disease sues NHS

[FrauleinF]

www.bbc.co.uk/news/health-50425039

Upshot - woman is suing NHS as they didn't inform her about her father's Huntingdon's diagnosis. (an incurable inherited degenerative condition hitting in mid life characterised as being like Parkinson's, Alzheimer's and MND all rolled into one)

He had shot and killed her mother in 2007, and was convicted of manslaughter on diminished responsibility due to his mental health issues - which were confirmed as Huntingdon's shortly afterwards.

On finding this out, and in spite of the NHS providing family therapy for them both together, ostensibly for both of their benefit, his wish for the, at the time, pregnant daughter not to be informed as she might have "killed herself or had an abortion" was enough for her not to be told of his diagnosis. She found out by mistake shortly after the child was born, got tested, and it turns out she has it too - her daughter has a 50% chance of also having the disease.

I know patient confidentiality is a somewhat grey area in the UK, even if any diagnosed medical issues are potentially damaging to other individuals.

This strikes me as a somewhat feminist issue - although she was always going to develop the disease whether she had been told or not, she has potentially made her child into her carer. She also maintains she would have aborted the baby rather than have subjected her to this horrific disease.

Personally, I hope she wins her case. I am a carrier of Cystic Fibrosis and am lucky that my father told me about his late brother and advised me to get tested before having children, so am very sympathetic.

You can't be tested for HD under the age of 18. Testing follows a lengthy counselling period. Adult children are tested for HD without parental history, happens when there has been suicides, other causes of death, or where family relationships have broken down (frequent in HD) absent fathers etc. The genetic counsellor does go through what happens if the parent is unaware that they have the gene. Of course, it isn't just that parent, its their siblings, children, grand-children who the positive result affects.
It is a very personal choice to test and as more families are becoming aware and wishing to contribute to research etc, there are more tests happening.

A lot of adults decide to test (if they know it is in the family) before having children, so to make a considered choice about the advances made in being able to have HD free children.

Just looked at the nice standard. People are supported to tell partners, so clearly the ball is on their court. Presumably the recent cases of people being charge for unprotected sex when they know they have an STI are related to this issue.

Some really interesting debate on this thread, on both sides.

More than one person has pinpointed exactly why I thought the lack of disclosure was a feminist issue in the first place - it effectively prevented the woman concerned from accessing a termination - which happened to be what her father wanted.

Of course, had she been a son (who had also gone on to have a child of his own), the same emotional turmoil would have been there over the omission of the father's diagnosis, the consequences for the child and the physical and mental ramifications of the Huntington's becoming active in the future - but as a pregnant woman, her actual bodily autonomy ended up being curtailed.

In the family therapy, knowing that what was a murder charge for killing her mother had become manslaughter due to his mental health issues, one would assume that the nature of the health problem would have had to be explored to some extent? Or the woman in question may even have asked what it was? How much deceit was there (by omission or otherwise) to not mention the exact nature of his condition at all on his say so? Surely both parties were (potentially) supposed to benefit just as much from the therapy in the first place, so a degree of openness had to be there?

I agree that it is a complex case, and the line between where rights end and resonsibilities begin is getting blurred in the world of medicine. There will be many other similar cases that will end up in court I'm sure. I just happen to believe that she should win this one.

i'm hoping that case does change things.
it's awful having to go through life not knowing anything about inherited conditions.
There could be anything and yes we should all have the right, but sadly as yet we don't.

That doesn't change the fact it is feasible and clearly in common practice in many areas.

It’s feasible as far as the information the person provides is accurate. So they could give you 3 names when they were actually sexually active with 5 people whilst infected. While the NHS has no legal responsibility to inform these people this isn’t a problem, and the person has consented to share that information. (Probably with the option not to disclose their name) but as soon as you make that the NHS’ legal responsibility then you are opening them up to legal action from people who weren’t informed that they had been out at risk.

Isn't notification already a thing for infectious diseases? If there is a measles outbreak, don't public health get involved?

Yes- that doesn’t involve disclosing an individual persons medical information.

She’d be suing under failure to warn. The NHS knew that there was a high chance she had the disease. The NHS knew that she was pregnant. The NHS knew that there was a chance that if the pregnancy was not terminated that it would result in the child becoming an orphan, a carer or, a victim of the disease themselves. It doesn’t matter where the information came from, the NHS knowingly allowed this to happen and they should pay for it. Doctors cannot be permitted to keep secret medical information which would affect a patient’s medical choices. Informed consent is more important than keeping a secret which arguably didn’t belong exclusively to the father in this case.

@IWorkAtTheCheescakeFactory that’s not how it works. The NHS would only ever be responsible for the other people it could reasonably believe to be at risk. The law in Britain is strongly biased towards public organisations like the NHS and only imposed liability where there has been a very clear failure in light of available knowledge a resources.

Mental health conditions within HD can manifest many years before physical. Without family history/knowledge, these would be labelled as psychosis, depression, anxiety etc without HD even considered. Even now, if you have had received a positive gene test, you wouldn't necessary be termed sympothamatic if you only displayed mental health/dementia difficulties. Once there is a positive result, teams of specialists don't suddenly spring into action, there is no national pathway for sufferers. Many with mental health difficulties will not even be under their local mental health providers and will only be so once there is a crisis - ie suicide attempt resulting in an in-patient admission to mental health hospitals. Once there, they are under the care of psychiatrists/psychologists with no experience of the disease at all and then discharged back into the community with no support.
What scares people with the positive gene is the cognitive decline and mental problems. It is actually easier to cope with the chorea, although this is still horrific.
From what I understand of the case, a prison/secure unit doctor had some experience of the disease and persuaded the man to be tested.
I'm not sure it helps to think of HD in the same way as some other inherited conditions, the HD protein can attack all your cognitive and thinking functions. Think of a person aged 30 with advanced dementia, who appears drunk because of chorea, that is the reality for many families. There is no way of knowing how and when it will affect you.
I feel so much for this woman, I didn't have a choice either, but would I have had an abortion of I had found out during pregnancy.... Probably not. None of know how we will feel until we are in the situation... I'm don't think sueing the NHS is the answer though.
I would rather NHS worked out a national care standard and treatment pathway for sufferers, no matter how the disease manifests itself.

The NHS would only ever be responsible for the other people it could reasonably believe to be at risk. The law in Britain is strongly biased towards public organisations like the NHS and only imposed liability where there has been a very clear failure in light of available knowledge a resources.

Good so hopefully it will never be made legally responsible for informing people’s former sexual partners of their medical status.

Informed consent is more important than keeping a secret which arguably didn’t belong exclusively to the father in this case.

his medical information is entirely his. If you were arguing that the NHS should tell the woman she was at risk of having this disease, without disclosing his name or medical condition, I could be on board. Obviously it wouldn’t take her long to understand she was at risk because her father had the disease, But they do not have a right to tell her her father has the disease.

I feel very strongly about this. My dad died of Huntington's Disease, I was his carer. I am at risk. I am in my 40s and not tested. I may have the disease, I don't know yet. I have the same 50% chance of getting it that she had.

I fell pregnant accidentally 10 years ago, I swore I'd terminate if I hadn't been tested. Went to clinic, couldn't go through with it and 10 years on I have gorgeous twins. Things don't always work out as you think; you don't always take the actions you expect when faced with the reality.

Of course it's preferable that she knew but absolutely 100%, I firmly believe that her father had the right to keep that information confidential. I didn't find out until my mid-20s - it was kept from me too, deliberately.

I feel that it's not my right to have information about someone else's health, even if it could potentially affect mine. There are many, many health conditions which could be genetic/affect someone else's well-being - where do we draw the line? How do doctors judge who is equipped mentally to deal with the news? Because believe me, finding out your dad has this horrible disease and you may well have it yourself is an absolute kick in the guts. Getting a call out of the blue if you don't have a support network, telling you that you might have this awful, awful fucking disease - there are lots of people that would not cope with this.

As soon as I heard it on the news and they said "brain condition" I thought to myself, I bet it's bloody Huntington's.

My heart goes out to this woman. My biggest fear is not whether I have it, but whether I've passed it on to my kids. I am also terrified of making them go through what I went through with my dad. Believe me when I say it's an absolute bastard of a disease.

However, there was some research recently that showed real progress. I have the link on my Facebook somewhere but there are growing signs that it might be cured - not quickly enough for me, but potentially quickly enough for my children, should they be affected. I hope the woman takes some comfort from that.

Quote from very start of the thread
I hope she doesn’t win. You cannot just go around telling people about other people’s medical diagnosis. It will drive a truck through patient confidentiality.

I think the idea is that there should be an exemption to confidentiality if you are a genetic child of someone who carries an inheritable disease.
You should have every right to be informed of this even without the parent's consent.

It's not about changing the system so that anyone can find out all about everyone and everyone else's medical diagnoses.

Have I said I want it to be the nhs's legal responsibility? I'm not sure where that all came from

Of course it's preferable that she knew but absolutely 100%, I firmly believe that her father had the right to keep that information confidential.
Confidential from the general population sure, but as a biological child you should have the right to be told.

Or are we all expect to get tested for every and any rare genetic disease which would cost the NHS a lot more?

Early in this thread it was stated that confidentiality is a somewhat grey area in the UK. This challenge demonstrates exactly why it isn’t a grey area.

Confidentiality is so important. People need to be assured that they are protected within the medical system. There are plenty of threads on mumsnet which demonstrate the anxiety & distress caused when people feel that their right to confidentiality hasn’t been maintained.

Having said that I think it will be interesting to explore these difficult and conflicting wishes. I don’t see this as a feminist issue though, the outcome in terms of maintaining confidentiality would have been the same.

"Or are we all expect to get tested for every and any rare genetic disease which would cost the NHS a lot more?"

But you could be carrying a whole host of other diseases that you know nothing about. You get tested if and when you become symptomatic - until then you live your life just like anyone else. We all know that life, illness and death are eventually inevitable. My right to know about something that MAY possibly affect me does not trump someone else's right to confidentiality.

And as I said, where would the NHS draw the line? What conditions do we need severe enough to tell someone? When does the risk become high enough to warrant passing it off? And how do you check the person you're telling can a) mentally cope with the information and b) has sufficient support around them?

For so many reasons, it's a big, huge no from me. And I say that as someone who's at risk of developing Huntington's Disease, and it was kept from me too for many years.

I understand the idealistic view that a person should have the right to know about their own health but I firmly believe that we're not entitled to demand information about someone else's health just in case it affects our own. I feel that's a very entitled way to look at things.

This is such a can of worms. If she wins this case then where does it stop? Just with HD or any genetic disease?

If you think that your parent might have inherited a genetic condition could you force them to have testing so that you, as their child, can be informed?

My husband's family have a history of breast cancer. The only surviving member was offered genetic testing to see if she carries the gene but she refused to have it done. We were concerned about our children being at an increased risk but we've been told that they will not test our children unless it's proven that the faulty gene is in the family, which we can't do because this relative has refused testing. So those of you arguing for this case, should this type of genetic testing be compelled?

Confidential from the general population sure, but as a biological child you should have the right to be told.

So, day she had been informed but decided to continue with her pregnancy. Should her child have the right to sue her for putting them at risk of developing a genetic disease?

If this is allowed it will end patient confidentiality simply because someone will always be able to make the case that they have potentially been harmed by not having information about someone else's medical condition.

In this kind of scenario duty of care to female partners of childbearing age and DC of the person with the condition outweigh confidentiality considerations IMO.

Exhausted Flamingo

I totally agree with everything you say. I have even known people not being offered/gently talked out of the test by professionals as they believe the person's fragile mental health would not cope with a positive result. It is a very personal decision that is different for everyone and no-one should be judged for the decision they make. I am so sorry to read about your situation and you seem like a courageous person making the very best of the shit hand you have been dealt.
There is absolutely a right not to know as well as a right to know.
The only people who are going to benefit from this case are the lawyers.

No one can be compelled to have these tests. What if the Dr says to a patient "we think you may have HD, we need to test for it" but the patients doesn't want their children informed and so they refuse to have the tests? Are you going to have a law that forces patients to be tested, against their will, so that their children can be informed?

Where does this end? Would you compel drs to tell partners of.patients who have tested positive too? If yes, is that a spouse or bf/gf? Long term? Short term? Ons who may have become pregnant?

A few years ago there was a manslaughter case where a woman had a breakdown and killed 3 of her children. Children had a genetic disease they discovered after all 3 of them were born. I think they had another child who didn't have disease.
I would definitely like to know. It gives you an option to make an informed decision about having a biological child.

How does "first do no harm" fit in? By not telling you are harming, passively but you are.
If a person is at a sexual health clinic because of chlamydia and they say they are having unprotected sex with person B, who the clinic know has another sti, an untreatable one, do they have a duty of care? Obviously the first action would be to convince b to tell. But if b refused?

www.telegraph.co.uk/news/uknews/law-and-order/12011350/Tania-Clarence-serious-case-review-into-mother-who-smothered-three-children.html

I hope she doesn't win because of the unintended consequences if she does.

It would mean the NHS has an obligation to tell the children of everyone with a genetic disease that they might have it.

The potential fall out from that is huge.

For example, imagine if it exposes a woman had a child with another father but had concealed the truth. What might be the implications of that?

What if someone does not wish to know something like this but the NHS come barging in. Why about their right to not know and enjoy life without having the spectre of a disease hanging over them? Not everyone would want to know like this woman, for exactly the opposite reasons.

What about the implications for insurance? If you have a known genetic disease within the family will insurers demand a declaration? And will this affect the premiums and opportunities of those people? Would it be a problem if you wanted to buy a house with a mortgage?

Would the NHS then come under state pressure to discourage known carriers of diseases from having children? Or would there be demands on the NHS to provide NHS funded ivf where embryos have been screened first? Or will there be a whole new private industry for someone to cash into, simply as the result of this court case?

And what about the social stimga of parents who decide to have children even if they know they potentially are carriers? How will society treat them in the long term? Will it pressure politicians to defund certain inherited diseases through the NHS because the public think its somehow 'selfish' to pass on these diseases and the cost of them to the taxpayer 'because they knew what they were doing'?

That's just off the top of my head. If I thought about it for a while I think there would be other concerns.

I think it's a massive subject which has huge ramifications for all of us, not just those who carry diseases.

Can of worms doesn't cover it IMO.