PSP Association
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Advance Directive/Living Wills

Hi All

Quick question and a couple of points

I went to my GP today and said I want to put a DNR order in place for myself

May seem strange but as I’m coming up to 50 I want this in place because as we all know unless your about 25 or under, the chance of being as you were after resuscitation is quite slim!

Any GP suggested I should have an advance directive/living will as she said once in place it doesn’t need updating unlike a DNR

Only thing is how would anyone know you have an advanced directive unless you have a tattoo (which I won’t be doing)! Or maybe a bracelet?

Secondly I now understand that for example if you are at home or in a nursing home and you call 111 out of hours, the GP’s cannot access your advanced care plan or advanced directive!

So now I’m totally confused

Anyone? X

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Hi

Take a look at the nhs website. It has all the info you need about getting one set up, who to tell etc..

nhs.uk/Planners/end-of-life...

Pj

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Aww thx you x

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Colin had both. The DNR certificate had to be taken everywhere we went. I forgot to take it to the hospice once and had to go home for it as if C had had a heart attack, the hospice staff would have to try and start his heart again, even though the DNR was sorted out at the hospice.

Every time he went into A&E the ambulance staff asked for it.

I did tell one I was going to tattoo DNR across his chest.

XxxX

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Thanks Bev, so you think having both is best? X

Ps think a tattoo is probably the answer lol x

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I’m not sure about best but both were done at the hospice at different times. When they asked if C had a DNR I told them they had helped him do an advance directive and they said that wasn’t a DNR and resuscitation would be tried if he didn’t complete one. I’ve just checked the internet and that states, “ Even if your advance Directive or Living Will states that you wish not to be resuscitated, you need to fill out the specific DNR forms with your doctor”.

I hadn’t looked at this before but did what the hospice told me to.

X

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Aww thank you Bev, what I’m going to do, is speak to the clinical nurse specialist at the hospice and see what he says, sounds to me like it’s a good idea to have both......does the advanced directive have to be signed by a solicitor?

Once again you’ve come up trumps!! X

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Colin’s wasn’t so I don’t think so.

XxxX

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Thanks again Bev x

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Yep, I agree. NHS website has all the info. It’s something that obviously needs thinking about long and hard babe as many people can be resuscitated without further complications, esp us young ones 🙃 We had a DNR in place for mum because she already had no quality of life. xxxx

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Thanks Michele

I’m just trying to make a plan for myself as for me it’s important x

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Of course love. I totally respect your view and admire your strength too xxxxx

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Thanks for this post. Am doing same thing for myself, but thru lawyer as an Advance Directive. Your reference will be useful.

I feel full of life at present! So making this directive seems surreal and scary.

Hugs

Jen xxx

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I agree but it’s sensible x

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Although no longer with us, my lady had a DNR done when she was hospitalised with UTI about 6 months before she died.

After she recovered, we went to see her GP and asked about making provision for how she would be treated later on her PSP "journey". He recommended making an Advanced Directive and a website called mydecisions.org.uk. (He had already used it for himself and said how easy it was to navigate.) It was! We had a copy kept with her medical records at the surgery and carried another with her DNR. I never really thought about how to ensure it was available as I was always there!!

Not sure if that's any help!

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Yes it’s a massive help and I’ll check out that website, thank you!! X

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Hi Amanda

Check out the site Coordinate my care. This allows London Ambulance Service to check DNR’s not sure if it is countrywide now. As I recall was set up by the Royal Marsden Hospitsl originally.

Love Tippy

Ps not sure about the tattoo unless a gorgeous ambulance man decides to rip off your clothes before resuscitateing you - just saying.....

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Brilliant, thanks Tippy! And I see your point about the tattoo lol x

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He might rip off your clothes and not be gorgeous !!! You been at the gin ??

Jean xx

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