Woman who inherited fatal disease sues NHS

"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.

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.

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?

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

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.

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.

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.

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.

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.

@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.

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.

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.

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.

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.

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.

When the dad found out he had it he specifically told them not to disclose to her the nhs cant do it under those circumstances

The NHS shouldn’t be responsible for informing people’s sexual partners of possible STDs.

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

what if the partner is sitting in front of you next to your patient and you know there is a 50 percent chance they have the same condition? Does a doctor owe any duty of care? What if there was a cure or treatment or even preventative treatment before you become symptomatic?

I think this case is going to throw up some very interesting questions and it isn't as simple as saying "of course she shouldn't have been told".

I have no idea. That doesn't change the fact it is feasible and clearly in common practice in many areas.

Is it a legal obligation though? I understand it’s a service offered but are the NHS legally obliged to do it?

Cheesecake factory partner notification is part of infection control. It's already happening.

Surely she is going after the wrong person. She should be blaming her father for non-disclosure, not the NHS.

Also, the daughter has a 50%chance of getting it, which means she has a 50%chance of not getting it. Where does that stop? Can we all sue the NHS because we have a one in xyz chance of getting Xzx disease?

How on earth could the NHS possibly inform all sexual partners a person has had. I mean you couldn’t even know whether they had given you all the names. Or the correct names. It’s bonkers to even think that is an option. The NHS shouldn’t be responsible for informing people’s sexual partners of possible STDs.

Lots of people have infected their partners with STDs they knew they had but didn’t disclose.

How do current sti partner notifications work? Are you allowed to say no you don't want people you've slept with to be contacted?