Should I test my Genes?: Did anyone see... - Cholesterol Support

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Should I test my Genes?

Aliwally profile image
6 Replies

Did anyone see Adam Wishart's documentary about genetic testing during the week? There was an interesting piece about FH being one of the conditions where testing makes a huge and cost effective difference. The other condition was sickle cell anaemia where sufferers seem to get an even rawer deal.

Prof. Steve Humphries described the situation in England as a "scandal" with 100,000 people undiagnosed.

I do not understand why it is so difficult to get genetic testing in England when Wales, Scotland and Northern Ireland can do it. Why do some clinics in England have a budget for it and others don't ? Who makes those sort of decisions?

Sorry, this should have gone in the questions slot!

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Aliwally profile image
Aliwally
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6 Replies
Aliwally profile image
Aliwally

It was on BBC 2 Tuesday 5th July and well worth seeing. He also made 23 Week Babies earlier on this year and is a sensitive and sympathetic presenter.

Seahorse profile image
Seahorse

Someone at my work told me this had been on so I watched it on BBC iplayer. I am so pleased I moved from England to Scotland as my care has been top class. However, I did have to ask my GP for a cholesterol test in the first place and he was reluctant to do it but this was 16 years ago so hopefully things have changed since then. Another bonus of living in Scotland is free prescriptions so I even get my statins for nothing.

suki65 profile image
suki65 in reply toSeahorse

hi seahorse i had my levels checked and have the genetic type 3 hyperlipidemia i was 12.1 cholesterol and high triglycerides ,statin after statin have made me ill if anyone starts to see side efects i would advise them to stop .

i am trying intermittent fasting at the moment eating every day between the hours of 11am and 7pm and my cholesterol is now 6.2 all my readings have come down in 2 months and i will never take another statin ever .

I have to prove statins are to blame for all the things that are happening to my body

please try it and your 16 year old all i take with it are opti omega capsules from healthspan .

i hope you try it and it works

I saw this programme too. I also don't understand how the Welsh, Scottish and Irish health infrastructures differ so greatly to England. How did they implement cascade screening? Is it just the funding issue we have a problem with in England? Do health professionals and patients need more education? I hope more people are listening to Prof. Steve Humphries now that FH is becoming more talked about.

Aliwally profile image
Aliwally

Please Seahorse, don't even mention uni fees. Husband's BP high enough!

The irony in my case is that I probably don't have FH anyway. It was only due to a misdiagnosis that I was told it was possible but they couldn't give a definite answer without genetic testing. I was then told " You can't have it because we've run out of money." Well, at least that was honest I suppose.

The year that followed was one of the worst of my life, especially as one of my daughters had moderately raised levels. Got second opinion, more likely to have familial combined hyperlipidaemia but I think the situation in England is a "scandal" and a total postcode lottery.

Aliwally profile image
Aliwally

I still don't understand why some clinics in England have a budget for testing and some don't. I'm afraid I am totally ignorant about who in a hospital decides what department has what money. Is it the Local Strategic Health Authority or don't they exist any more?

I suppose we hear the same about the availability of IVF and expensive cancer drugs, everybody is fighting for their share of the cake and hospitals have to prioritise.

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