NHS City-Wide Screening Lottery in Nottinghamshire Unnecessarily Condemns One in 100 Children at Risk of Downs Syndrome to Death in Cases Where Parent/s Cannot Afford Private Blood Tests!
Regular readers of Bent Society will know that Mrs Hood is expecting our unborn child. Being 43, she starts out statistically with a one in 45 chance of having a Downs Syndrome child.
Mrs Hood and I wanted to know as far as it is possible whether or not she is carrying a child with Downs Syndrome - or any other syndrome for that matter. Nottingham's Queen's Medical Centre performed an ultrasound scan which produced some good news. By observing the amount of fluid behind our unborn baby's neck and entering data into a computer they were able to inform us that she now had a one in 133 chance of carrying a Downs Syndrome child.
We then went to see our obstetric consultant who said that the only sure way to know 100 per cent for sure whether or not a child had Downs Syndrome was for him to perform a procedure where he either (1) performed an amniocentesis , which involves using a needle to take some fluid from within the womb or else (2) taking a small biopsy from the placenta . He said that he preferred the second method and that both had a one in 100 chance of causing the mother to have a miscarriage. He said that he could perform the procedure for us the next day. Noting our silence he then reached for a leaflet (see picture below) and said that we could have a blood test performed on a small sample of Mrs Hood's blood that would give us a more accurate diagnosis of risk, but not the 100 percent knowledge provided by the invasive procedures described above.
He explained to us that, unfortunately, Nottinghamshire National Health Service (NHS) Trust (trust what exactly?) does not provide this service. Neighbouring Derby does, as does Leeds. The residents in those catchment areas get the blood test free on the NHS (well it's not exactly free as it's all paid for by taxpayers). We could have the test but it would cost £98 and we would have to arrange the whole thing ourselves - getting the blood taken by Mrs Hood's GP and then sending the blood along with a cheque to Leeds by 24 hour guaranteed delivery post.We went for it.
Yesterday we got the results back. The picture below shows the results. Mrs Hood's original one in 45 chance had been thankfully reduced to 1 in 14,000. That's good enough for us. And as a result Mrs Hood and I most certainly will not now be risking that one in 100 chance of a perfectly healthy and normal and wanted unborn baby being aborted due to an invasive test.
But what happens to one in 100 babies belonging to parents at risk of having a Downs Syndrome child who cannot afford £98? It stands to reason that statistically, a higher percentage of wanted unborn babies are being killed by unnecessary invasive screening for Downs Syndrome in Nottingham than in Leeds and Derby and other parts of the UK where these blood tests are available on the NHS. How Bent is that?100 CHILDREN TESTED AT £98 PER CHILD COMES TO JUST £9,800.
NOTTINGHAM NHS TRUST BELIEVE THAT £9,800 IS TOO MUCH TO PAY TO SAVE THE LIFE OF ONE IN 100 CHILDREN THAT THEY SCREEN FOR DOWNS SYNDROME IN CASES WHERE THERE IS A SIGNIFICANT RISK OF THE CHILD HAVING DOWNS SYNDROME.
IS £9,800 TOO MUCH TO PAY TO SAVE A CHILD'S LIFE?
IT IS IN NOTTINGHAM - BUT IT'S A POSTCODE LOTTERY OF LIFE AND DEATH FOR SOME PEOPLE IN THE UK BEFORE THEY EVEN GET STARTED IN LIFE.
How many have died so far? How do Nottingham's NHS Trust Managers sleep at night?In the past week we have learned that a new genetic test can replace these invasive procedures and also give a 100 per cent accurate diagnosis. But will they be available on the NHS in your NHS catchment area?
If you are appalled by the facts revealed in this blog today please lobby your MP for change today!
Help End the Unborn Wanted-Baby Killing UK-Roulette Played on the NHS Postcode Lottery.
Robin
FURTHER INFORMATION:
The test we had performed was carried out by:
Genome Ltd
Leeds Screening Centre
Gemini Park
Sheepscar Way
Leeds LS7 3JB
Tel: 0113 262 1675
email info@genomeltd.co.uk
Website: http://www.genomeltd.co.uk/
"Genome offers a range of screening tests, including those previously carried out at the University of Leeds since 1991, under the direction of Professor Howard Cuckle, a leading international authority on screening."
It took a week from drawing the blood to receiving our results both by phone and post.
3 comments:
It is not just restricted to these kinds of tests; my father was dagnosed with bowel cancer, and in a particularly bad period of health for me my GP ascertained that not only did my fathers mother also die of the disease (it claimed my father a few years later)my mothers father also had this type of the disease.
Apparently my chances of getting it were frighteningly higer.
Firstly, the NHS were brilliant; an immediate colonoscopy (not pleasant but a hell of a lot better that the alternative)and the promise of a five year repeat screening.
Around 5 years later i was getting the sort of symptoms my father seemingly ignored, and for which he paid the price, so I enquired when my next screening was to be.
'Ah' they said; we've abandoned this type of screening. After further enquiry, yes it was revealed it had been abandoned on cost grounds!
So one of the biggest killers can run unchecked in this fine city because some bloody NHS manager (parasite) deems it not to be a priority for cash.
Good luck to Mrs Hood
A STATISTIC - and all their claims for the need to be cost effective in terms of differing demographic health trends - i.e. higher incidence of lung disease etc in Nottingham (that they have to give priority to) than say Brighton is nonsense when you see what they squander money on that could be spent on these screening tests. For one thing the managers and chief accountants do not need their own private parking places and expense accounts. And they do not need to attend junket conferences.
The public pay for a National Health Service - we need to complain about the postcode lottery that the bean counters have created for their own glorification.
Have any of you heard of Frontline Consultants? This is a group of 'management gurus' who seem to have got their claws into many of our major institutions. If you have the stomach for it, go and look at the gobbledegook on their website: http://www.frontline-consultants.co.uk/newsarchive.cfm?PageNum_rsNewsList=2
All of you who are wondering what is happening to our tax and National Insurance contributions will be pleased to know that the NHS is pouring millions of pounds of our money into the quackery (good word, Robin) that is Frontline Consultants, when it could be used instead to fund frontline screening programmes like those mentioned here.
I don't mind in the least that consultants get to go to conferences - they need to keep up to date. But it galls me when the management send themselves off for 'Away Days' and 'Time Outs'. As for f****** management gurus - oops, there goes the blood pressure!
All the best to Mrs Hood and congrats on those good results - they're what I'd call excellent betting odds.
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