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I have to put in writing that I am taking responsibility for the risk that my baby might die from not vaccination

(315 Posts)

The exact words the nurse spoke!? shock

I'll put something in writing if that is what they want but not that.

Apparently they have a duty to inform the HV of the risks that I am taking and have I heard the recent news oday of all the babies dying?

I'm bloody cross with this nurse tbh.

zzzzz Thu 06-Dec-12 17:20:46

star she sounds utterly dreadful. sad

Some people are just limited, step around her and don't waste any energy letting her till you.

The nurse sounds as if she has a real bee in her bonnet. Funny really, the more senior we went I found the more medical staff were happy to discuss our situation with ds1 and the more able they were to understand the complexities of the decision. The paediatric neurologist and paediatrician have both said we're about ten years too early with our questions, to give them time and they may be able to tell us more although they appreciate our concerns and look forward to the day when they'll be able to answer them.

I think I would ask the nurse to summarise the latest research on autism and the immune system for you (it's not directly relevant to vax tbh but it will at least show her that she knows sweet FA about autism). Or I'd ask her to sign to say that she is advising that vaccinations need to be given and she agrees to be held responsible for any damage that occurs because of that advice. She may then remember that it's not actually her decision to make.

I've always found GP's fine tbh, have never been hassled about it (they only hassle me about getting a carer's check - must book one!)

GalaxyDisaster Thu 06-Dec-12 12:58:08

Nah, I suspect you had a reasonable GP and a bonkers nurse!

I think following up on stuff generally is nice, if there is no coercion. My old GP if you dared to mention anything that wasn't the official reason for your appt you got told off. Maybe she was just ensuring that you realised you could talk about it if you wanted to. If her last update was you were 'considering' you might well have had more questions.

StarOfLightMcKings3 Thu 06-Dec-12 12:51:05

Funny though, I actually saw the GP (about something else) this morning when I handed in my note and she mentioned the vaccs as I had ds with me and she remembered that I was considering it in light of my DB and just asked if I had given it any more thought.

A bit cheeky given I wasn't there for that, but I took it as just a GP showing in an interest in the family health in a general sense. However, when I said we're not doing it for the moment that was the end of it. Wonder why the nurse then hounded me, or do you think there is a good cop bad cop thing going on?

GalaxyDisaster Thu 06-Dec-12 12:00:33

Oh my goodness. That is awful. Glad you stood your ground. I could understand a note on the file so they know your decision, but beyond that it's just bullying.

StarOfLightMcKings3 Thu 06-Dec-12 11:40:22

I wrote my note. I just got a phonecall telling me that I haven't put a reason.

I said it was very complicated. The nurse said well she had to put a reason into her file, so I said well, my ds has autism.

She responded that vaccinations don't cause autism.

So I asked her what reason would she find acceptable. She didn't have an answer.

I got cross at that point and told her that she can think about it and then put whatever reason she feels is an acceptable in her file but that I had done as I was asked even though I wasn't obliged to and that's as far as I was willing to go.

Eek! Teens and tweens is bad enough!

lisalisa Tue 04-Dec-12 22:34:39

Ah glad to hear that . I've got the puberty stage too - in fact toddlers and teenagers!

6 children -wow, that's brilliant.

He eats so well now - everything and anything, those dark days of no meat, fish, eggs, veg, cheese have gone. Loves a roast dinner!

Bit younger than 16 but well into puberty :shudder: grin

lisalisa Tue 04-Dec-12 22:26:06

Wow saintlyjimjams- only just seen your reply. MN has become such a big place now that its hard when you only log on occasionally to " see" those you " know". Do you think we may be the oldest posters here? I suppose this is one advantage of keeping original posting names - that we can still identify eachother aeons later!

Your ds must be about 16 ish now? So glad to hear he's doing well. I will never forget your posts about him running into doors and eating " crap " food when all around were tucking into wholemeal bread and fruit because that is all he would eat and the judgey faces of those around you.

I thnink - shamefacedly - that 10 years ago before I read your post and had no idea of autism at all - that I may have been a judgey face too. After I read your post I certainly viewed things very differently.

How lovely to still see you around and I wish all your family well x

It's nice to see others who don't vax on this thread too. We are at 6 dcs now and all mainly unvax apart from first dd who is partially vax . I say mainly unvax as dd4 caught natural measles when a young baby ( 9 months) and all dcs were advised to get MMR which they did. Still don't know if I would have given it had circumstances been differnt but unfortunately my darling daddy was dying at the time and passed away on the day the dcs had the vaxs so I was quite out of it and just remember nodding mutely when my GP in my lounge suggested it be done now without delay.

zzzzz Mon 03-Dec-12 15:39:18

So in effect everyone is on dialisys before they hit the transplant list aka stage 5???

My brother said that when he was called in to receive his kidney, there were others being called into their local transplant hospitals for the same kidney, should there be any indication after tests that he was not the best match on that day. They had to establish who, at which hospital was going to receive it before it could be transported.

Truly awful for all involved I imagine.

Luckily for him he got it. He was in a ward with 5 others and his was the only Kidney that suck. Awful again.

He was given an estimate of 10 years if he was lucky. He's had the odd rejection issue along the way but he's had a good 15 years so far.

Yes, in the case of two people with the same match that comes in to play.

Lougle Mon 03-Dec-12 14:15:18

The link I posted shows the wait time being allocated between 0.5 and 5 points, favouring the longest waiting. Having said that, points are only allocated where there is a criteria tie-break.

I think you do get some extra points for having waited a long time but it's the match that's the main thing and some people will never match. Some people will be on the list and come off it because of health and some people will start dialysis being unfit for transplant and then ultimately get on the list when their health improves. Patients on the list have regular ecgs etc and if unwell or aware from their base unit they would be suspended from the list.
As with all organ donation, the more people who are willing to, on the worst day of their lives, make an incredibly generous gesture, the more lives will be improved and prolonged.

Lougle Mon 03-Dec-12 13:40:32

No, it shouldn't do, Star. There are two issues to be considered:

1. Best match - ABO blood group match, as many 'minor antigens' as possible match.

2. Recipient health - can they withstand the demands of surgery, do they have any conditions which mean that a transplant isn't viable?

Link here to the allocation criteria

Doesn't that mean that the longer you are on the waiting list getting progressively unwell the less and less chance of being considered as able to give the rare available kidney it's best chance?

When you reach Chronic kidney disease stage 5 aka end stage renal failure that means you either need some sort of renal replacement therapy - dialysis or transplant or you will decide not to follow that route and only have supportive care.

In terms of ethics, the match is done on the basis of best possible match because that kidney has the best possible chance with the best matching person - and each person has the best possible chance with the best possible match. There is nothing more miserable than a transplant that doesn't work. You can't predict which will and which won't but by getting the best match you give it the best chance. Somewhere hard choices have to be made unfortunately.

ArthurPewty Mon 03-Dec-12 11:42:55
ArthurPewty Mon 03-Dec-12 11:42:35

there was a US congressional hearing about autism recently. It is interesting to [[http://www.ageofautism.com/2012/12/congressional-autism-hearing-take-note.html read what was written] by those involved, present, and affected by autism in the USA.

perhaps the UK will take note of what was said?

zzzzz Mon 03-Dec-12 10:53:06

People are precious.

Why is it not ethical to put a kidney into someone if it will work better in someone else?

Surely 2 people alive with pretty good matches are better than one with a very good match?

Is end stage disease the same as saying you are on dialisys?

Kidneys are a precious resource. They are also a fairly fussy and vulnerable organ. It's not ethical to put a kidney in to a person if you think it will work better in somebody else. Kidney failure tends to be a bit different from liver, lung or heart failure. If your function drops down to below 10% (ish - varies from person to person) then you can be put on dialysis. Dialysis is a pretty crap experience but it will give you enough function to keep you going for some time. Life expectancy and quality of life are massively improved by transplant but you need to be well enough to receive one. Some patients with renal failure will also have massive problems with their vascular system and the bottom line is that nobody will put a new kidney in to you if your body won't support it. Nobody gets on to the list without having end stage disease. You might have 12% function when transplanted, you might have 5%. Doesn't really make any odds, people with that degree of disfunction need a transplant. Everybody is urgent and everybody can wait iyswim. Some people will die waiting but they'll die because they have renal failure not because they didn't get a transplant at a certain point. Does that make sense?

zzzzz Mon 03-Dec-12 10:34:58

I think the process for my sibling went something like,

Presented with kidney infections in thirties
After several times went for scan of kidneys
Found to have cysts
Over the next decade
Diagnosed with poly cystic kidneys
Investigation into siblings and parents kidneys to see if shared condition or if sib is a mutant grin
Blood pressure and other side effects treated with ever higher doses of drugs put on transfer list
Dialysis by early Fortys followed by transplant.

Possibly others get on to the list earlier in the process, but I'm not sure how that would have happened for us.

I didn't realise the best fit got the kidney! I thought level of need came into it too.

I am quite shocked by that to be honest.

I don't like the thought that someone with an urgent need might be turned down in favour of an individual with working kidneys, because they are not quite such a good match. sad

You don't need genetic testing to match for transplant. You need antibody whatsit grin

ZZZZZ - no you absolutely should not be waiting till on dialysis before getting in a transplant list. Having a pr-emptive transplant would avoid dialysis altogether and that is a good thing. There's no way to bump up the list. Kidneys are given on the basis of compatibility match. If you're the best match on the list then you get the kidney. I have known people be on the list between just a couple of days and several years.

Thank you zzzzz. Perhaps that's what they were doing. My mum told me it was to see if I was a)a credible match and b)at risk of the same.

They didn't give the results to either of those questions but said we were similar. All of us in fact.

I suppose under the data protection act I have an entitlement to access whatever it was they found. Perhaps I'll do that in the first instance. It really never occured to me before now.

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