Critical illness for ET: Hello I was diagnosed... - MPN Voice

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Critical illness for ET

Dora1971 profile image
31 Replies

Hello

I was diagnosed with ET approx 11 years ago. It has been stable which is good because I was classed as being very young ( approx 35 years old) at the time of diagnosis. For the first couple of years I was under the care of a Heamatologist but for the last couple of years I have been under the care of my GP.

I have blood tests every six months to measure my platlet count. I only recently found out that ET is now classified as a blood cancer. If I'm honest I don't think my GP understands my condition, and it is me that has to remind him to refer me for my six monthly blood tests.

The word cancer is scary and I need to get my head around this.

After reading up again on the condition I have realised that I do suffer from some of the symptoms.

I have critical illness insurance and I'm wondering if I will be able to make a claim?

I'm thinking about calling Macmillan tomorrow for advice but if others members on this site can help I would really appreciate it.

Thanks

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Dora1971 profile image
Dora1971
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31 Replies
piggie50 profile image
piggie50

Hi Dora1971,

Yes you can claim. There have been numerous threads on this subject on the forum. On the right hand side of this page you will see Related Posts, there are a couple on Critical Illness, just click on those. I have never had the cover but a numbers of members have claimed and I am sure you will hear from them. The main advice seems to be - don't give up!

Good luck

Judy

Dora1971 profile image
Dora1971 in reply topiggie50

Lovely, thanks for replying x

tracey13 profile image
tracey13 in reply toDora1971

My husband claimed we were turned down at first, but the ABI re classified blood cancers . My husband had to claim within 3 months of diagnosis.

Just try ringing your insurance

Tracey

Ebot profile image
Ebot

Yes! As Judy says it is definitely worth making a claim. I posted the relevant extract from the ABI guidelines a couple of months ago so check the posts. Those guidelines specifically include ET and PV. Good luck.

(Having been refused some years back and having accepted that MPNs weren’t covered, thanks to the advice and support of the good people on this Forum I recently made a successful claim backdated to the date of my diagnosis.)

Dora1971 profile image
Dora1971 in reply toEbot

Thanks for the reply. What does ABI stand for?

Ebot profile image
Ebot in reply toDora1971

Association of British Insurers. But none of us could find the relevant document on their website. It was originally issued 11 or 12 years ago.

Ebot profile image
Ebot in reply toDora1971

Dora. I’ve tried the search facility to bring up that post with the statement but it doesn’t (the search facility here can be really frustrating). However, if you go to my home page you should be able to access the post from there. It’s headed CRITICAL ILLNESS AND ET / PV: THE A.B.I STATEMENT IN FULL

Solitairebtb profile image
Solitairebtb

Hi, keen to follow this. I'm in Australia and I looked at the wording of my policy and I think to a degree it hinges on if it is 'malignant'. But it also lists PV as a specific exclusion if it is treated with venesection only... but doesn't specifically mention ET or MF...

good luck!

Emhalliday profile image
Emhalliday

Hi

Yes you can claim, i did after being diagnosed with ET 3 years ago and my insurance company paid out straight away.

It was an easy process for me, 1 form to fill in, a telephone consultation and a form completed by my consultant and they paid within 4 weeks.

I hope your insurance company makes it as easy for you!

Good luck

Elaine

richs360 profile image
richs360

Hello, I was recently diagnosed and have made successful claim for critical illness.. Good luck

Dora1971 profile image
Dora1971

Thanks everyone for your speedy replies.

I'm a bit concerned because I was diagnosed in March 2006 (rang my GP and checked this morning) so I hope I'm not excluded but to be honest I had no idea that I might be able to make a claim.

I will update you all in regards to what the insurers say.

Aime profile image
Aime

Hi Dora, like everyone else says don't give up! I had a successful claim with no problems at all with Legal and General about 4 years ago.

Kind regards Aime xx😺

friendofpiglet profile image
friendofpiglet

You can pick up the 2011 ABI guidlines from my googledrive shared folder here.

drive.google.com/drive/fold...

Andy

Dora1971 profile image
Dora1971

Thanks everyone. I'm waiting for a call back from the underwriters.

I will be surprised if they pay out, but I've started the ball rolling.

Loubielou profile image
Loubielou

Hi,

I also have ET and definitely find the word "cancer" scary.... (I prefer to view it as a "disorder" but that's just my way of thinking about it :-)). I also share your experience of GPs not being very aware of the condition and its symptoms. I guess it is relatively rare..... But it must be very frustrating for you having to remind them each time you need a check up. Something I did a few years ago was to get referred to a specialist haematology department. This has been brilliant as I completely trust them to give me the best possible advice regarding treatment.

As others have already said, many of us have claimed on critical illness insurance. I made a successful claim about 5 years ago with Scottish Provident. They initially said that my ET was not covered, so it was not straightforward but worth persisting with!

When they told me I was not covered, I called the ABI and they gave me some great advice, which other people on here have already referred to. The ABI had published guidelines to the insurance industry to say that ET and PV were classified as cancerous and should therefore be covered by CI claims. The link to the press release no longer works, but I think other people have offered you copies of it? I also have a screen shot of the page and also the accompanying statement, both of which I can email to you if you would like?

My understanding is that the ABI acted based on the WHO re-classification from "myeloproliferative diseases" to "myeloproliferative neoplasms" to reflect the underlying clonal genetic changes that are a key feature of these diseases. So insurers could no longer classify them as "pre-cancerous".

My consultant at the time was reasonably supportive, but at the start of the process he didn't think I had a strong case - until I shared the ABI statement with him. He then filled in all the paperwork and helped me with the response to two key questions from Scottish Provident's Claims Team:

1. Is ET classified as malignant? Yes because it's a clonal disorder.

2. Is it invasive? Yes because it's present throughout the body in the blood.

My advice is to not give up, this is a lifelong condition and it does affect quality of life for many of us. But as you have seen - there are plenty of people on here who have made successful claims. :-)

I wish you well

Loubie x

Dora1971 profile image
Dora1971 in reply toLoubielou

Thank you Loubie, that is incredibly helpful. Xxx

Kelly2 profile image
Kelly2 in reply toLoubielou

Hi Loubie, as my haematologist has not given me much information do you have a check up every 6 months? Also this insurance claim is it a one time compensation or continuous coverage of expenses? One of the haermatologists I visited wanted to put me on Hydroxyouria years ago but I refused since my platelets at the time where 750. The other haem has me on aspirin and now I am around 550.

Good luck to all of us

Kelly

Loubielou profile image
Loubielou in reply toKelly2

Hi Kelly

I think frequency of check ups will depend on your particular situation. My own experience has been 6 monthly but more frequent appointments since I’ve been on pegasys.

As for the insurance, my policy was for a one off payment. I’m not sure if there are different types of schemes.

Loubie x

Kelly2 profile image
Kelly2 in reply toLoubielou

Thank you!

SueYoung profile image
SueYoung

I had critical illness cover but did not realise I could claim until 18 months after diagnosis. The process was quite straight forward and I sent in the ABI guidelines with my claim form. Interestingly they only paid out for the amount in the fund up till the date of diagnosis and then refunded the premiums from the date of diagnosis to the date of the claim. I think as long as you took out the policy before you were diagnosed there should not be a problem.

But I suppose it will all depend on the type of policy.

Good luck with your claim

Sue

Dora1971 profile image
Dora1971 in reply toSueYoung

I was diagnosed before I took the policy out but that was in 2006 before it was re classified as a cancer

I've only just realised that I may have a CI claim x

Dora1971 profile image
Dora1971

They have said I'm not covered because it was a pre existing condition. I will challenge them because it has been re classified as a cancer.

One of my motivations for taking out the cover was because I felt that I had had a near miss by having ET and not leukaemia.

It's like being told you have a cyst, not cancer, so you take out insurance and 11 years later that cyst becomes cancerous.

But they refuse to pay out cos you have had the cyst all along.

Disappointed and frustrated 😞

friendofpiglet profile image
friendofpiglet

Fight it. Who is the insurer?

And consider contacting the Financial Ombudsman (I think that's the right organisation).

Dora1971 profile image
Dora1971 in reply tofriendofpiglet

Halifax.

I intend to fight it because I think it's unfair. They have happily taken my premiums for the last 11 years.

So if I have a stroke caused by a blood clot will they also refuse to pay out?! Because I'm prone to blood clots as part of the ET or a heart attack for the same reason!

I didn't expect them to accept it easily but I'm very down about it.

But the fight isn't over yet.

piggie50 profile image
piggie50

Hi Dora1971,

I think the critical issue here is whether you commenced the cover before ET was re- classified and if so, when you applied for the cover you declared your medical history ie Diagnosis of ET. Friend of piglet is correct you can go to the financial ombudsman. You will need evidence that it was re-classified after your application. If they accepted you for critical illness cover knowing your medical history I would say they don't have a leg to stand on! If it was re - classified before your application and they were not aware of it, which wouldn't surprise me, then they should not have accepted you for cover. The ombudsman would then decide whether to award the full pay out or a refund of all your premiums.

Good luck, let us know how you get on.

Best wishes

Judy

Dora1971 profile image
Dora1971 in reply topiggie50

Thanks Judy

I was diagnosed in March 2006 which was before the re classification.

When I took the cover out I had to answer 3 questions, such as are you currently being investigated for cancer, has two or more family members had cancer before the age of 50, is there history of strokes etc. I can't remember the questions exactly but those are the just. I googled Halifax critical illness cover and the questions came up on there.

I answered the questions 100% truthfully. I believe the re classification was in 2008 ( according to the World Health Organisation) but I've also read on here it was 2007, either way it was after I took the cover.

If anyone knows where I can get evidence of it being re classified I would really appreciate it.

I've only very recently found out it has been re classified otherwise I would have tried to claim much sooner. I think this is partly due to being under the care of my GP rather than a specialist.

When I took the cover they didn't ask anything about pre existing conditions. I knew full well that they wouldn't cover pre existing conditions, but my arguement is, that this has now changed to a cancer. The same way if I had gone on to get leukaemia I would have expected to have been covered.

I will speak to them on Monday and I also have legal help through my job and my union so I can take further advice.

A HUGE thank you to everyone for their help, support, guideance and encouragement, it means an awful lot to me 💖

friendofpiglet profile image
friendofpiglet in reply toDora1971

See here for MPN history.

mpnresearchfoundation.org/M...

Dora1971 profile image
Dora1971 in reply tofriendofpiglet

Wonderful thank you so much

tracey13 profile image
tracey13

Yes my husband claimed but it has to be within the first 3 months of diagnosis. Your insurance might be different.

Give them a ring you can only try

Tracey

Ps quote the

Solitairebtb profile image
Solitairebtb

Anyone in Australia have a successful claim?

Trampline profile image
Trampline

Hi Dora. I realise this thread was quite some time ago. My Father has had ET for 30 years and started significant critical illness policies back in 1995. He disclosed he had a blood disorder on application and was accepted. He cancelled the insurance 2 years ago but now I believe we have a claim based on WHO reclassification in 2008. How did you end up going?

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