One of my major beefs with the way suspected FH is treated is the complete lack of any kind of psychological support. You talk to a specialist for half an hour if you're lucky (who in my experience, and I've seen 3 all have very poor communication skills and refuse to answer difficult questions, discuss anything, or deviate from the party line of you must take statins or you will die by next week at the latest, and that's it. Although my last one repeated 'it's a patient's choice' about taking statins, it sounded like he'd been told to say it, and he still put the pressure on to take statins.
I'm just wondering what others think about this. I think you should have the chance to see a medically trained but UNBIASED person to talk about the surrounding issues. Ideally the consultants would be this unbiased person, but that seems to be very unlikely
Is everyone's experience as poor as mine, or have others had better experiences?
There are an awful lot of people stressed out when diagnosed with FH, and it seems, as you say, 'It's my way or the highway!'
I think there's a lot more to the issue than is generally accepted. I'm in the middle of writing a piece looking at things from another angle which I hope to post shortly.
what absolutely NONE of my the consultants I've seen has done is explain in any way the evdence base forr their recommendations.
Two have said 'well I'd take statins if I were you', to which I was tempted to reply 'you're not me.'
I showed the last one the study I linked elsewhere on the forum which suggests that heart disease in FH patients is caused by a mutation which makes blood more prone to clot and that LDL levels weren't significant in any way. He didn't even look at it and said 'this is centre of international excellence, we know all about that'.
It all seems to be based on fear mongering and bullying tactics, which Just make me angry, and certainly don't make me take statins. I actually had one cardiac nurse say to me 'you're going on a cholesterol pill!'
I also think a BIG problem is that lipid clinics are run by endocrinologists who aren't experts in heart disease anyway, Cardiologists as a whole seem to have a much more rounded view - a lot, like Aseem Malhotra, are against mass prescription of statins and recommend improving diet and exercise as preventive measures But you never get to see a cardiologist unless you have a heart attack.
In my experience, this varies from clinic to clinic, unless they've all been taken over by endocrinologists since I last changed clinic 3 years ago. Maybe it would be good to add to the HEART-UK lipid clinic map heartuk.org.uk/lipid-clinic... who's in charge of a clinic? Sometimes you can tell from the address or by searching for the contact's name on the hospital website, but not always.
Psychological support, I am afraid there in none for any problems identified by blood tests. In my GP practice there is no standard answer, every one have their own answers. We are the expert, listen to us and go for medication. No one want to discuss the findings and not have time to discuss the findings.
I am involved in Oxford University training programme research for GP practice, starting from consultation, support, medication and new technology. It will take many years to implement this.
HCA, New GPs and GP practice nurses all need training in communication and support.
apparently there's a bit of a mass statin revolt going on, with only one in three patients who are recommended to taking them actually agreeing.
Most people who have FH are offered a combination of a medicine, called a statin, and guidance and support to improve their diet and lifestyle. - See more at: heartuk.org.uk/fh-familial-...
Hi Bala
The study sounds interesting, do you have any more details?
There are public lecturers coming up next month at Oxford university. If you are interested in it, please send me a message with your email address, I can forward the mail.
I've had similar experiences with lots of docs. Most recently with a 20 stone diabetic nurse who was blown away by my success, asked me how I did it and then when she heard that I did it using my own research/contradictory to NHS guidelines - she suggested I should look on the nice website for guidance. I told her the NHS was presiding over a diabetes epidemic and asked her why I would do that. Initially she was suggesting I could do a chat to their patients to help them control their diabetes with just diet and exrcise - but then I was quickly ushered out of the door...
Docs generally ignore everything I say - rarely do anything to intervene in my issues except this intimidating/controlling urge to stick me on statins.. at time it has been frightening because you follow your instincts but you worry that all these medical professionals might be right. Now of course we know that they're not and despite all the new information - they still want to put everyone on statins.. unbelievable.
Well, I experienced similar experience. The Surgery was sending me letter after letter to join this and that. What I did not like was the "GP practice nurse saying, I can confirm that your are diabetic, you need to go on medication and here are some information and we will be putting you in the diabetic register".
four years on I am on food intake control and regular exercise. Only time will tell.
Yes - I'm in my 12th year of controlling it with just diet an exercise - but when you see what the disease actually is and oes and how it works - you just know that it's being caused by something in our diets that has changed in recent years - GM food..? Growth hormones in animal feeds? I don't know - but when we find out - the disease will go away
I definitely agree about the lack of emotional and psychological help especially if your children are involved as well.
I do not think there is enough information about FH and why some people have early heart disease and others don't.
There is also this blanket approach that if you can't or don't statins (or any other medication) then it's goodbye Mrs Aliwally, you are going against our advice, not co-operating and we have plenty of other patients.....fair enough I suppose in their eyes. We could form a large control group of patients with high lipid levels who don't take medication and see how we do. It is now considered "unethical" not to treat people with suspected FH with statins.
Well that control group already exists in my case, it's called my parents - who both lived until their 70's despite both being smokers for a large part of their lives, didn't take statins because they weren't around at the time, my five older siblings, only one of whom is taking statins, and my 8 first cousins, six alive, the other two died of cancer.
Not one of my non smoking siblings (oldest is 70, three males over 60) have had a heart attack or stroke, and none of my cousins have either, which is why I am very sceptical that I am about to drop dead if I don't take statins. If I have got a mutation at least one of my parents must have had it.
But there is also already a LOT of evidence suggest FH risk is down to other factors than cholesterol levels and only a few unlucky people are at very high risk. In the case of my family, the risk is clearly in smokers, and it's not that extraordinarily high.
in reply to
And I don't think it's fair that they refuse to provide support. In my case, I definitely didn't initiate this process and they've caused me a lot of stress. Which has had knock on effects on the NHS because I've ended up in A&E twice with chest pain. One A&E admission costs £500 apparently and I've had two.
It's considered unethical not to offer them, but many medics have no problems with trying alternative treatments if that's what you want.
I think if you don't/won't try statins, there's probably more risk of them saying goodbye, but if you try and can't, then there'll be continuing care, as has happened to me... once you've found a way around any cloth-eared know-it-all medic who won't believe the pain statins are causing because it isn't bad at the precise moment they see you!
I couldn't agree more: psychological care for FH seems completely absent. Most people are basically being told that they've an incurable illness that's basically fatal if untreated, which is a huge psychological trauma if you've not already made peace with your own mortality.
Newly-diagnosed people probably won't be told about HEART UK which I think is basically the only group offering support for us. Few medics would dream of just telling people "you've got cancer, here try some pills and don't look so worried about it" so why does FH get screwed again? (like we do on prescription charges)
Then if non-drug treatement (diet, no-smoking, exercise, ...) doesn't do enough, you have to deal with the idea of being medicated forever, which isn't easy either.
Then there can be another heavy hammer-blow if you suffer intolerable side-effects from treatment, which many people seem to, because it feels like a promised ordinary-but-perpetually-medicated lifespan is being snatched away from you for being a bad person and complaining about Almighty Atorvastatin and Christlike Crestor!
If I didn't have so many relatives also dealing with this, who I could compare notes with and generally get mutual support from, I would probably have gone crazy long ago. Does anyone know if FH patients are at increased risk of mental health problems or suicide?
I have obviously accepted that I'm going to die, it seems to be the consultants who have an issue with it.
I said to one I've got to die of something (and given the alternatives, a heart attack or stroke seems preferable to dying of cancer, or ending up in as one 90 year old I know of is, in an old folks home with Alzheimers, but surviving heart attacks because she's been on statins for years, ) and the consultant said 'well you don't want to die in your prime'.
Given my medical history (both parents survived until their 70's despite difficult and not particularly healthy lives and my mother had 6 children, which doubles your risk of CVD anyway, apart from smoking) I think it's very unlikely I'm going to drop dead now if I live a healthy life.
Yet the consultants continue to insist, in the face of all the evidence that I am likely to drop dead tomorrow if I don't take statins.
They seem to think that if they ramp up the fear factor they can make you take statins.
in reply to
I also haven't even been advised to try non drug treatment, despite the fact that I am only 'possible' FH, have only once been over the cut off point of 7.5 total cholesterol (because I was very overweight at that point and had been through a very stressful period when I was basically just eating junk food), it dropped back to 7.4 as soon as I lost 8kg.
The consultants have all just said statins, statins, statins, you MUST take statins.
Also (at risk of being deleted or kicked off this forum), yes I was told about Heart UK and I already knew about it anwyay. My latest consultant is apparently heavily involved with them, I wonder if he ever reads these forums.
BUT - and I understand it's a cholesterol lowering charity, the debate about cholesterol as a risk factor for heart disease and statin prescription is now mainstream, but both the BHF and heart UK are not acknowledging this.
I don't think it really offers support to patients to say, as Heart UK do in their patients charter, that you must take medication you are prescribed. NICE is very clear that all patients should be told they have the rigt to refuse any treatment.
The other factor with FH of course is children, parents are having to make the unbelievably difficult decision to start their young children on statins.
In my earlier "cholesterol" days I often said that I didn't care about myself, but I wanted to know if my children were affected and protect them. 6 years later, I know it's not as simple as that.
I used to follow the FH group on Facebook when it was an open group. The comments from the US were very pro statin for young children with statements like "we have virtually eliminated his cardiac threat" but others from the UK and Europe were more cautious. I am referring to the heterozygous form of FH not the homozygous form which, I think, is a very different kettle of fish.
Agree, we need more debate about FH and support those who don't want or can't take medication and follow them up for goodness sake not just abandon them as "non-conformists". As Dak says, you wouldn't do it with cancer patients.
well fortunately I am not in that position, and even if I do have a positive test (if I ever get at test at all) I won't be giving permission to contact other members of my family because currently FH treatment in this country is such an unholy mess I want to protect them from it. They've all (adults) mostly been advised to take statins in any case, and refused.
In my view (and it is just my view) unless you have a terrifying family history with people having heart attacks in their 20's or earlier, there is no justification for giving a 10 year old a statin. Most of those who do have a higher chance of developing heart disease will do so in their 40's and 50's. Therefore an 18 year old can decide for themselves if they want to take statins.
In the USA they prescribe statins to 8 year olds and not even ones with FH, just with 'high' cholesterol. I find that terrifying.
Talking about children and cholesterol I found this site
"If you have FH, your children should be screened as early as possible.1 The latest guidelines from the National Heart, Lung, and Blood Institute (NHLBI) and The American Academy of Pediatrics (AAP) recommend that children in families with a pattern of early heart attacks or heart disease should get special attention. In these families, the NHLBI/AAP says that children should have their cholesterol screened between the ages of 2 and 8. In addition, the new NHLBI/AAP guidelines recommend that all children be screened for high cholesterol between ages 9 and 11.2"
This is what I mean about scaremongering. I accept some unlucky people have very early heart disease in their families. Yet here I am stuck with 'possible FH' and not only has a non smoker not had heart disease at all in my family that I know of, my father (a smoker as I keep pointing out) had a heart attack in his 50's.
So why on earth, even if I was diagnosed with FH and some of my nephews and nieces were positive would they be recommended to go on statins at age 10?
Another reason I would not let them inform my family. We already have a very seriously ill chld with a congenital heart defect - nothing to do with FH - and I'm not up for terrifying my relatives, sorry.
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