On one of the other posts someone said that they wanted everyone with FH in the country to be identified. That's fine, but what if they don't want to be identified themselves?
I really really wish that the GP I saw at the doctors surgery had never mentioned my cholesterol level. I hadn't asked for a cholesterol test, and I didn't want my cholesterol tested, she took the results from a complete blood test for something else that was completely unrelated - I wish the medical profession had just left me alone.
I know I'm not the only one this applies to, so surely there is a huge ethical problem with medics contacting people who haven't expressed any interest in knowing whether they've got FH or not, and haven't specifically sought advice on their cholesterol level? In that they haven't consented to being contacted in this way?
If you don't want to take statins there's really no point in being told your cholesterol is high or what your risk is.
I think I did a post a while back asking "Do you wish you never had your cholesterol levels tested ?"
I suppose some people might say it was a life saver and others take an entirely different view.
The bottom line is, if you have high cholesterol you will be prescribed statins for life. Discuss whether this is a good or a bad thing and take individual circumstances into account at the same time . I agree blood tests shouldn't be done without people being told the consequences of the results.
GP says we need to do a blood test? Do we ask what the blood test is for or walk out and give blood for testing in the hospital or blood clinic at the GP surgery. There is always a printed paper that the GP tick and sign. Can we ordinary people understand this paper work?
If we only want a particular blood test to be carried then we can ask for that only.
When I ask for a printout of my blood test I can see more than 30 information, some I understand the others I do not understand!!!!
One life, we the individual can ask for full blood test or just what is necessary for a particular problem?
As I understand it Bala, GPs aren't just meant to do random blood tests, and the one I had wasn't, it was to see if there was any underlying cause because I'd had two skin infections.
One problem is that the doctor I saw was a trainee and I'm not even sure she should have done what she did. I hadn't phoned the surgery for the test results and they hadn't contacted me, I just went in to check I didn't need any more antibiotics. The original doctor who ordered the tests didn't contact me about my cholesterol.
But if we do what was advocated below and proactively try to identify people with FH then people will be contacted out of the blue, which in my view is just wrong. Especially with the state of FH diagnosis as it is at the moment - blood test aren't offered so you can't get a definite diagnosis anyway and the information and communication is dire.
It would be better if GPs just offered cholesterol tests to anyone who wants them and is worried. Then they would only be targeting people who are prepared to take statins.
My GPs surgery is basically in a mess and they are employing a lot of trainees who are inadequately supervised. Some of them are very good, but this particular woman was a disaster zone.
A university is planning to offer a PhD to improve the system (GPS and HCP) including access to GP via modern technology, Skype, email, face time and web).
I have had three blood tests in the last six months, all included cholesterol, each time they flagged up my level was high. I know from a nurse i spoke to a few years ago when they reduced the( acceptable ) level that she felt it was going to be mostly unattainable for people. Herself included! Hence , i guess the increase statin dole out.
I suppose im one of the lucky ones in respect that my gp hasnt persued my need for statins at the moment because i have issues with my cholesterol level and the blood pressure tablets i am on.
Im more than sure that my levels havent altered dramatically over the years but the goal posts have moved!
I used gp recommended weight loss some years ago which worked. Lost 3 stone, felt good health and mind wise but since it is only offered shortish term and not as a continued thing the weight has crept back on. My chol level went down during this time as well so there must be a link.
I would consider myself fairly fit, walk ( not hike!) almost every day for at least an hour.as i always have. I eat healthily but do still eat things which they would say is unhealthy, but noway in excess.
Its got to be an age thing! Lol if it doesnt fall off, down or out it grows out of all proportion! Lol
well it would have been nice to be given the chance to say no when it mattered, which was before they did drive by cholesterol testing.
As for 'it can't be that difficult'. Well I was already very stressed when they did this, and a trainee GP scared me half to death by sending me a letter asking me to contact the surgery urgently. This was after I'd seen her and she had just told me not to eat butter.
You then google 'familial hypercholesterolaemia' and read about people dying at the age of 30. Everything you read is terrifying and suggests you're about to drop dead there and then.
You then go to the lipid clinic and try to discuss risk with the consultant, who refuses to discuss it.
Yes I have said no, yes I have walked out. But it isn't easy in the face of a lack of information, doctors who refuse to discuss everything and a lot of scaremongering.
If you haven't been in this position, which I gather you haven't from your other posts, I don't think you actually realise what it is like.
'Drive by cholesterol testing' had me laughing idontbelieveit. I do agree with everything you've said though. Dr's don't have alot to say other than trying to statinate us. And researching just scares the life out of you
Hmmm. You got this blood test done two years ago and are still holding a bludgeon against the ones who, by all accounts, tied you up, drained you of blood without consent and then shoved you out of the door.
You have posted many times of your experiences as well as concerns about cholesterol but the end result is the same, you go off ranting about the doctors.
Now you're accusing them of breaching ethics. What ethics have been breached?
You might not have approached the doctor about cholesterol but some people have clinical signs such as being overweight or having xanthelasma, which is lightish blobs just under the surface of the skin. These are clinical indicators that clinicians find very easy to spot as they are usually on the face.
I am a nurse and have been given many corridor chats by doctors over the years about my cholesterol! I am not even their patient yet they must point it out as it is a clinical indicator. I just answer "Yep, I got my statins, thank you"
I think you might be getting yourself is an awful tizz about this instead of looking at it from the view that the doctor took some blood, found you had high cholesterol and are trying to advise you. It is their duty, after all, to help if they can.
Is it really that bad if a doctor is trying to look after you?
I strongly believe in doctors doing their duty and responsibility.
Can a doctor see cholesterol on you for them to talk to you while on duty?
"I am a nurse and have been given many corridor chats by doctors over the years about my cholesterol! I am not even their patient yet they must point it out as it is a clinical indicator. I just answer "Yep, I got my statins, thank you"
We human different shape and size have different level of cholesterol?
For a consultant or even a doctor new or experienced to comment on cholesterol "corridor chats", I am unable to accept this in medical terms!
I am from a family of medical people (from professor , cardiologist, dentist to GPs)., we have discussion after dinner, no one ever looked at another family member and said you need blood test to check you cholesterol level and blood glucose.
It's quite odd to say you don't accept it bala. It matters not if you do or don't. It's happened to me as well as other colleagues. If we can't help each other what hope as carers do we have?
• in reply to
I haven't been helped, this has made my life hell.
• in reply to
Why, does it help someone to be diagnosed on the go so casually? Load of rubbish with a big R.
• in reply to
Hi petalline
I don't believe for one minute that doctors stop their colleagues in corridors andt give them lectures about cholesterol. It certainly ISN'T something they have a professional duty to do - quite the opposite if they were to start giving advice to people who aren't officially their patients they could find themselves in a lot of trouble. And most doctors don't really like working for free in their spare time either.....If a doctor did see that a colleague had Xanthoma/Xanthelasma, they would probably just assume that it was already being dealt with.
I also know various people who work in hospitals, or,as I say are related to medics and this has never happened to them.
I think it's made up and is probably based on something this particular commenter saw on a TV show.
I think they'd take a very dim view of doctors dishing out ad hoc advice to work colleagues. My friends dad is a GP and he was always clear that he wasn't allowed to treat them, and even now when he is retired, just tells her to go to her own GP for advice.
Do not offer any advice, always ask us to see our GP.
• in reply to
I am a nurse and have been given many corridor chats by doctors over the years about my cholesterol! I am not even their patient yet they must point it out as it is a clinical indicator. "
Well I AM my doctor's patient and I expect them to behave properly. I am not their work colleague which is a completely different relationship.
What you are happy with doesn't affect that, and from all the guidance I can see on the subject, they're not meant to give treatment without proper consent. In addition the NICE guidelines on lipid modification state
"Patients should have the opportunity to make informed decisions about their care and treatment, in partnership with their healthcare professionals. Healthcare professionals should follow the Department of Health's advice on consent. "
I agreed to a blood test for a specific purpose, it was not a cholesterol test. My cholesterol level is entirely irrelevant to the condition I had which is a skin infection.
Now if you're a nurse and don't believe informed consent is important, then I find that worrying, though frankly not all that surprising.
• in reply to
Now you're making words fit which were never uttered nor considered AND getting nasty about it.
Now we know how you conduct yourself.
• in reply to
I'm quoting your own words, verbatim.
• in reply to
and as I already said, it's quite worrying that a health professional doesn't seem to think informed consent is important.
• in reply to
You might not have approached the doctor about cholesterol but some people have clinical signs such as being overweight or having xanthelasma, which is lightish blobs just under the surface of the skin. These are clinical indicators that clinicians find very easy to spot as they are usually on the face. "
I approached my GP about a skin infection whicih needed antbiotics. I went on the advice of a pharmacist in boots.
I do not have Xanthelasma and being overweight isn't a clinical sign of FH last time I checked, or 2/3 of the population have it.
Good job one of us knows that.
• in reply to
When I stated that "such as being overweight or having xanthelasma" note that that are examples. The word "such" indicates that.
Not understanding is quite a talent you have.
• in reply to
"I think you might be getting yourself is an awful tizz about this instead of looking at it from the view that the doctor took some blood, found you had high cholesterol and are trying to advise you. It is their duty, after all, to help if they can.
Is it really that bad if a doctor is trying to look after you?"
I didn't consent to a procedure, I didn't want it, and it has made my life worse.
If a doctor thinks a treatment will help me, that's irrelevant. What matters, legally and ethically is what I want. If a doctor thinks chemotherapy will help a patient, they can't just give it to them without consent. Even if the result is that the patient dies, the patient's choice is what matters.
My doctors could easily have asked me if I WANTED a cholesterol test under the NHS health check system.
I think that's OK if you don't have side effects from statins and are happy that the benefits of taking a drug for life outweigh the risks and even doctors can't agree on statins for primary prevention.
Listened to the end of "Inside Health" last night on Radio 4 and they were saying how standardised medicine has become in general practice. Some poor elderly people are on such a cocktail of drugs that they are causing serious falls. What ever happened to looking at patients as individuals.
Department of Health guidelines on consent to treatment:
It is a general legal and ethical principle that valid consent must be obtained before
starting treatment
or physical investigation, or providing personal care, for a person.
This principle reflects the right of patients to determine what happens to their own
bodies, and is a fundamental part of good practice. A healthcare professional (or other
healthcare staff) who does not respect this principle may be liable both to legal action
by the patient and to action by their professional body. Employing bodies may also
be liable for the actions of their staff.
To give valid consent, the person needs to understand the nature AND PURPOSE of
the procedure.
Any misrepresentation of these elements will invalidate consent."
It would seem that taking a blood test for one purpose which the patient agrees to and using it for another they have not agreed to is in breach of these guidelines.
It's also interesting to contrast the situation with FH with NICE guidelines on familial breast cancer which state:
"Healthcare professionals should respond to a person who presents with concerns but should not, in most instances, actively seek to identify people with a family history of breast cancer. "
I have a high cholesterol total level of 8.0, was 8.5 and my dr wanted me to go on statins but I refused as I'm on enough medication for other problems that I didn't want to take another that could possibly worsen what I already have and my Dr was pretty okay with it especially in view of my medical history. Since then I've lost 1 stone 10 1/2 lbs which may have some effect on the cholesterol though I rather doubt it as my research indicates that my cholesterol is high because it's trying to dampen downtown the inflammation in my body, inflammation which is ongoing.
Label me all you want. Test my bloods all you want. Tell me I have high cholesterol. You will never ever get me to take statins. so what have you achieved? Waste of time and money and you know I have high cholesterol that you know I will never take statins. It is my body. You may advise me what its doing, but I and I alone will action anything to do with it.
I think you're absolutely right, it is our body to do what we want with, and that's why it's so important medics don't try to impose their views on patients.
And given that doctors themselves don't agree about statins, we can't say there's a clear consensus.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Being treated for FH but no marker gene found when tested and have stopped statins
Coronary Calcification
Do I really have FH
FH risk factors
