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Petition for baby screening

(12 Posts)
Itscurtainsforyou Thu 31-Jul-14 01:08:01

I'm not sure if this is in the right place, but there's a petition online to improve new born baby screening, which seems to be less comprehensive than that carried out in other countries.

A friend of a friend has recently found out her baby has Krabb's disease is in unlikely to live past the age of two. If this had been detected before symptoms appeared he could have had a better chance if survival. Hence the petition (below) to increase screening.

It would be great if you could sign the petition to support this family and thousands more who could benefit from increased screening.

Itscurtainsforyou Thu 31-Jul-14 01:09:57

Sorry for the typos, I'm on my phone.

DiaDuit Thu 31-Jul-14 01:24:25

What do they already screen for and how common are those conditions in comparison to krabbs disease? (Ive never heard of it)

NatashaBee Thu 31-Jul-14 01:32:24

Message withdrawn at poster's request.

Itscurtainsforyou Thu 31-Jul-14 01:48:25

Thank you!

As I understand it, the uk screens for 5 conditions whereas in other areas in the world (some US states for example) they routinely screen for up to 60 conditions. So it's not just Krabb's disease, but potentially a whole host of other things that could be treated if screening were to be increased.

DiaDuit Thu 31-Jul-14 01:53:16

In the US parents pay for their ante and postnatal care and their baby's health screening.

In the UK the NHS pay for it. We cant fund screening for 60 different conditions because they are screened for elsewhere (where the state isnt paying for it) this is why i asked how common the (5?) conditions that are currently screened for are in comparison to krabb's disease. What are the 5 conditions and what are their stats? If krabb's disease is nowhere near as common (i have no idea btw) then it's going to be way down the list of things likely to be added to the screening list.

whatshallwedo Thu 31-Jul-14 03:20:41

Currently the UK screens for 5 conditions via the Newborn Bloodspot sample. From 1st September this will go upto to 9 conditions. From these new 4 they don't expect to diagnose more than 30 cases a year.

Unfortunately I am on my phone and haven't got a clue how to link but a quick google comes up with the new conditions to be screened for.

As these new ones appear to be so rare it does make me wonder if they are more 'common' rare conditions otherwise why have they chosen them?

PossumPoo Thu 31-Jul-14 07:49:24

But Dia most people are paying for ante and post natal care, the NHS is not "free" for the average person paying tax hmm

PossumPoo Thu 31-Jul-14 07:51:56

Op if you could put a link I can collect on (am on phone) I'll sign now too.

whereisshe Thu 31-Jul-14 07:57:51

It's not about who pays for it in the US, their healthcare just costs more. Combined public and private per capita healthcare spend is over double the UK. I'm not surprised they scan for more diseases and conditions.

I agree with the PPs who would like to know rarity of these conditions OP, the NHS has many underfunding issues to deal with and I think it should seek to spend where it helps the most people.

sashh Thu 31-Jul-14 08:28:29

I'm going to sound awfully callous here but that petition is badly worded and does not take in the realities of screening.

From what I read on the petition it would be better to screen the parents before a child is conceived.

For screening to be effective it has to:

a) be available, not all things can be tested for
b) be reliable, how many false positives and false negatives are there and what effect would this have on a family being told wither their child was fine when ill or being told the child will die when they are in fact healthy
c) be cost effective - a quick wikki tells me the incidence in the UK is 1 in 100 000, so if the test cost £1 that would be £100 000 spent to detect one child with Krabbes. UK birthrate is about 7-800 000 a year £800 000 to detect a disease that will effect 8 children who will all show symptoms. Is it better to spend that money detecting the 8 children or spend it on them after diagnosis? Obviously I have picked a figure out of the air, it might cost £0.01 or £5 or £50
d) have more benefit than risk

Finally just looking at the numbers of conditions screened for in other countries is irrelevant, say there is a hypothetical genetic disease that only effect native Americans it would make sense for US states to screen routinely particularly in states where most of the population have some native American ancestry it would not make sense to screen in the UK because the population of people potentially affected in the UK is tiny.

Itscurtainsforyou Thu 31-Jul-14 09:19:17

I've done a bit of investigation for those asking about stats etc.
Currently screening is carried out for:
sickle cell disease
cystic fibrosis
congenital hypothyroidism
These vary in terms of frequency, with the least common (I could find) being PKU of 1/10,000

As PPs have said, a further four conditions will be screened for in future. These are:
Homocystinuria 1/300,000
Maple syrup urine disease - 1/185,000
Glutaric aciduria type 1 - 1/100,000
isovaleric acidaemia - 1/200,000

Krabb's disease is 1/100,000 - so as common/more common than some of the additional tests.

It would be interesting to know what these additional four have been selected rather than others, but I do believe that if some countries can screen for more (not just the US, but many European countries) we should question why the UK cannot. Especially when some conditions are only treatable before the symptoms occur.

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