to think this is disgusting and wrong

[threeOrangesocksmorgan]

here
surely the man and his family should have had a say before this was put in place .
how can it be right?

[GOLDdebka]

That opens a huge can of worms. So wrong.

My local hospital trust as well, scary.

[SminkoPinko]

I agree with you. Unbelievable that they cite Downs syndrome as a stand alone reason not to resuscitate.

[threeOrangesocksmorgan]

I just cannot get my head around it, how can they decide something like that without talking to him or at the very least his family.

[madmouse]

The flippant judgment of the quality of the life of someone with learning difficulties is shocking and frightening. Glad it's being fought.

[SminkoPinko]

They are bang out of order both morally and legally. Mental Capacity Act makes it very clear that they need to try and help him make a decision and talking to family/carers is crucial to making a decision in his best interests if he cannot make the decision himself. I suspect the NHS trust will be crucified in court- judges tend to hate it when family are excluded like this.

[AmethystMoon]

That I'd disgusting. It makes me so angry. Who the hell do they think they are taking that decision? I hope this gets thoroughly investigated and someone pays for that evil prejudiced decision

[AmethystMoon]

Is not I'd, bloody iPhone!

[Glitterknickaz]

That is appalling. There's nothing they describe there that would even indicate a DNR.

Sadly not surprised though. Plenty want rid of these 'defective' 'drains on resources' that happen to be our children.

[ArthurShappey]

Good grief! How awful. I did not realise that this was common practice (according to mencap), I'd hope it was a mistake (but that is even more unlikely).

A journalist or mencap needs to write to every trust and under the freedom for information act ask each trust what their policy is with regard to patients with disabilities and/or learning difficulties.

And the matter needs addressing NHS wide.

[devientenigma]

worrying to say the least

[FizzyLaces]

He sounds like he is not at the end stage which makes the ruling surprising but it is fairly standard for people with end stage dementia and Downs Syndrome to be DNR (although usually with family consent as families do not want their family member to suffer any more as the end of dementia is awful).

3 years into dementia with Downs Syndrome is quite a long time. Dementia for people who have Downs Syndrome is often much more rapid than with folk without and generally it is pnemonia which is the cause of death.

Dementia is the final insult for people who have lived with Downs Syndrome all their lives and, towards the end, (at least for people I have know in this situaltion and I have known quite a few) the 'motor keeps running' long after there is any quality of life. It is terribly sad and upsetting for families.

[5inthebed]

Bloody disgusting and wrong in so many ways.

[FizzyLaces]

Sorry, just reread my post and I come across as a bit horrible. I do not agree with this DNR, though. He sounds like he has a good quality of life still. Shocking.

[OneHandFlapping]

The BBC says that it is illegal to put a DNR on a patient without the family's consent. So is someone going to be prosecuted? It's the only thing that will stop this arrogant behaviour.

[devientenigma]

so something to look forward to then Fizzy

I already have been through my DS being cancelled for heart ops etc for silly reasons and what it boils down to is quality of life and NT before SN and so on iyswim

[threeOrangesocksmorgan]

I am just shocked by this and hope this case will get more publicity and make people more aware of the discrimination and blatant rule breaking

[Knobbers]

The Medical teams can overide the families wishes of a resuscitation order if the medical reasons justify it, but I'm sure they have to do this through a court.

But for them to not discuss this with the family beforehand is wrong, and for the reasons given are not totally justified.

There maybe more about this man's medical condition as to why that decision was made, so there should be some sort of investigation and a huge apology to the patient and the family.

[NCForNow]

Terrible! Just so upsetting. The carers say he has a good life....that means an enjoyable one...where he gets pleasure from the things he takes part in....I can't fathom WHO would do this??

[CailinDana]

I've said it before and I'll say it again. As long as the NHS offers pregnant women specific screening for Down syndrome on the understanding that the majority of women who are aware they have a child with the syndrome will terminate, no matter how wanted that child was previous to the diagnosis, then people with Down syndrome will never be viewed a fully human by British society. The NHS specifically offers the removal of children with Down syndrome before they're even born. So why is something like this horrible story surprising?

[threeOrangesocksmorgan]

CailinDana so agree,

[Peachy]

Bloody hell, that has made me feel sick.

I can't believe they did not speak to the family: I've worked with quite a few people with dementia and a DNR order but in every case the family were involved. It is never, ever acceptable not to involve someone who advocates for a patient when a clinical decision is being amde, especially one of this magnitude.

It just reflects many professional caregivers opinions of the worth of the lives of people with disability (even more pervasive in the psychiatric services I worked for) but as someone who has both worked for the services and is a carer of disabled children, thee is no excuse. none. There is after all a system in place for the minority of cases where the caregivers cannot make the loved one's needs a priority, and that has to be utilised if necessary. No get out clauses whatsoever.

Furious!

[Peachy]

Callin I agree.

We've just found out that ds4 has a genetic variation that could have been picked up antenatally: thank goodness we refused it! He does have SN, probably autism, but as we have 2 others with a firm diagnosis would we have panicked and said we couldn't cope? I don't know for sure. We refused because ds3 was given a very high risk for DS, we refused amnio but were quite heavily pressurised into it- we ran from the consultant's office the day it was booked, sneaked out and ran. DS3 doesn't have DS- he has autism in a way that mirrors the stereotypical (as opposed to realistic) presentation of many children with DS, and he is a wonderful blessing.
We are awaiitng genetics on ds1 and ds3 right now, and Dh and I of course. Thank goodness we know the child before the results.

[mellen]

It sounds like the way this was worded was inappropriate, and the lack of discussion with family.

A decision not to resuscitate someone in the event of a cardiac arrest isnt the same thing as holding back on any other aspect of care or treatment.
It isnt clear from the article whether this man would have had capacity to make a decision about DNR?

If I had dementia there is no way I would want CPR if I had a cardiac arrest.

[threeOrangesocksmorgan]

if he can't make it, then his family could, but they have to be given the chance.

[CailinDana]

Mellen - the family may well have decided that a DNR was best if they had been asked. The issue was that the DNR was issued without their knowledge, never mind their consent. So if their loved one had arrested during the night while they weren't there, nothing would have been done and they would only have found out after the fact that they planned not to help him. That is in no way acceptable, for anybody.

It is very very unlikely that the man could have made the decision about the DNR himself, but if he could have then they would have had to gain consent from him, which they didn't do either.