Cholesterol Support
7,557 members2,143 posts

Genetic Testing for FH in England

Could somebody explain the funding for FH genetic testing in England and why it is so different in Wales and Scotland.

This is a continuation of the discussion on the Facebook FH page and Traci and I have been exchanging messages about it.

8 Replies
oldestnewest

I am in England and due to have a FH genetic test next week. How is this service different in Wales and Scotland?

Reply

As usual there is a postcode lottery of treatment or development of research. Unless the drug companies can see money involved in any research then there is no hope for any expansion in advanced medication of any condition, and it is not a political thing but a financial one.

No matter what NHS says they are certainly ageist.

Scotland and Wales have many free services (prescriptions, alternative therapies, physiotherapy, etc) which is being supported by central government resources as part of the financial support given when both countries became "separated" from London. People in England are supporting those in Scotland and Wales to the tune of £1,500 per head per year. My sister lives in Scotland and has much more support as a 74 year old pensioner than anyone in England. She has worked all her life, has a good private pension but still was eligible to a free health care involving physiotherapy in her own home (she is NOT disabled) and she was able to get a visit in one week. This is not an isolated incident, it is the norm in Scotland. When I told her about the hoops I have had to jump through just to get an appointment at the hospital here in England she was appalled.

Reply

A lot of people migrate from Wales and Scotland to England, particularly London, for work, so it's probably right that some money is sent home.

The basic reason that England gets it in the bottom - again - is that we do not govern ourselves. We're ruled by the UK government directly and that's currently the cuts coalition, do it's easy for them to cut English services and not annoy the whole UK.

Reply

My consultant says she gets funding for 1 test a year if she is lucky. My sister in Wales has been tested and has FH so my consultant who corresponds with my sisters consultant says that given my tests, previous heart attack etc she is working on the assumption that I would also test positive so is not even going to wait list me for a test.

Reply

Thanks for the responses. I think this is a really important issue and one that has affected me and others.

I know HEARTUK are working on this as well. Would it be possible to have a database of clinics in England that offer it...or wouldn't this work...everyone would want to go there.

Reply

Ali,

I don't even think it's as straight forward as on a clinic per clinic basis.... for example I have been tested. My PCT is Bury, but the test has been ordered under the jurisdiction of my consultant, which is within the Manchester PCT based at the Manchester Royal Infirmary. That being said this has only been tested as I am undertaking a drug trial on a voluntary basis and the mutations involved were needed as part of the trial data.

I did get tested and diagnosed with homozygous FH years ago under Nottingham City PCT (in 95) but was never given the details of my mutations only that I was homozygous with 10% receptor activity.... Thus you can see it is extremely variable.

I think the difficulty lies in that it is an extremely costly test (as I understand there is 1 lab in Holland that can do the PCR testing) and ultimately it doesn't massively change the treatment plan, thus as such it is difficult to justify on a cost per head basis, hence I suspect the reluctance to bring it in place on such a widespread basis.

This being said, it is very frustrating that there is such variation, I for one know i'm onto a good thing where I am based currently, in fact my fiance and I discussed moving to another area for various reasons but one of the main factors we have decided to stay put is that I am getting such good care here (certainly in comparison to when I was based in the west midlands....!)

HEART uk are certainly doing some good work in this area and i'm trying to focus my attention on helping them in their quest to make sure everyone has access to the same level of care... otherwise I am concerned for my consultants capacity to keep up with the sudden influx of FH sufferers into the Manchester PCT!! On a final point however it also took me 5 years of living in Manchester to be recognised and transferred to the consultant here having to travel to Birmingham in interim period (every 2 weeks for apheresis) but thats a whole other story!

Ultimately i'm certain we will get there but equally I know it will take time, a lot of time, nothing moves fast in the NHS, unless you threaten to go to the press... again a whole other story!

Reply

Hi Elle,

It's really interesting to hear about the experience of others in different parts of the country. Talk about confusing!

Where I think genetic testing would make a real difference is where there is uncertainty over the diagnosis (which is what happened to me and my daughter) and this would affect the treatment options. What have you got with an LDL of 5.5.....it may or may not be FH.

I have had problems tolerating statins, but if I knew I had FH I would consider it worth persevering with them. Now I know I don't have it, I don't feel there is such a need for more agressive treatment. I might be wrong...but ruling out FH (rather than ruling it in) has given me and ultimately my daughter much more choice.

Reply

I live in Birmingham, West Midlands and have waited just 1 month for an FH test. Sad to hear of Elle C's experience in this location.

Reply

You may also like...