Just diagnosed - Essential Thrombocythemia - Travel Insurance and Critical Illness

[Janlol]

Hi, I am 45 years old and just diagnosed with Essential Thrombocythemia after suffering 2 painful splenic infarcts. I have travel,insurance with my bank account however they have refused to cover this illness, can anyone recommend a good company ? Also has anyone made a successful critical illness claim , I have a policy with Phoenix Life and unsure whether to try and claim or not. Any help greatly appreciated.

[Aime]

Hi Janlol, welcome to this forum where you will find lots of lovely people who don't know you but totally understand how you are feeling and what you are going through. You can also get reliable information from the MPN Voice website and a buddy to speak to or more advice from Maz our editor.

I think Staysure has been mentioned in the past as a company who will insure us but some of the other forum members will reply soon I'm sure to either confirm that or suggest other companies.

I received a payout from Legal and General not long after I was diagnosed with polycythemia in 2012 without any problem. Some people have had problems but I think a lot have been successful in receiving money.

Keep in touch, kindest regards Aime x😺😺

[Janlol in reply to Aime]

Thank you Aime. This has all been a bit of a shock. All my consultant has told me is that I am an unusual case as my platelets are not extremely high at 470 but as I have tested positive for JAK 2 and have had 2 blood clots that I'm high risk and need to start taking Hydroxyurea. Hopefully things will start making more sense soon and I can get back to work and some normality. Take care, best wishes, Lorraine.

[Aime in reply to Janlol]

Hi Janlol, I think everyone can remember when they were given their diagnosis, I can still vividly! It was a shock but a slight relief that I knew now what was wrong with me - it had a name.

You will see ET, Polycythemia and Myleofibrosis classed as cancers but don't panic as there are so many who have these conditions who are living a long life with them. The cancer tag lets you get free prescriptions in England and payouts from critical illness policies.

I found that once I found out more about my PV, spoke to a lot of lovely people on this forum, contacted MPN Voice and attended one of the forums which Maz organises every year, I felt I had some measure of control over my disease and what it was doing to my body.

If I have a low day, I just need to post on this forum and people will reply with so much support and empathy that it will help me so much! I have also asked Maz medical questions and she gets an answer from Professor Harrison who is a specialist and expert in the MPN field.

So keep in touch, have a look at the MPN website and if you need someone to talk to, Maz can organise a buddy.

Kindest regards and best wishes

Aime xx😺😺

[shankei]

Hi Janlol,

Welcome to the group, I only pop in occasionally, but I do know that the people on here are a hive of information and are very supportive. So you are in the right place.

I have ET and other conditions and I recently used Boots Travel insurance, it was the cheapest I found at the time and I felt reassured as they are reputable. In the past I have used others but it is worth shopping about.

Just search "Travel Insurance with pre existing medical conditions" in google.

Best wishes and kind regards

Shankei xx

[tracey13]

HI my husband has polycthamenia and I have a blood clotting abnormality. Our bank refused us travel insurance, so we are insured with staysure.

I made a claim from our critical illness policy and we were refused you've got to ring your insurance within 3months of diagnosis. After a year had passed I read up that mpn blood disorders were re classified under the ABI insurers. So I rang them back up and quoted this to them the lady assessor rang me up and filled out the forms over the telephone. She sent the forms out and we added more information to them. I sent the form back with photocopies of all my husbands hospital letters from his consultant. He also takes hydroxy which is a small doseage of chemotherapy tablet. Within 3 weeks we were paid out from our critical illness policy. I'm sure ours was with legal and general.

It says in our policy non invasive cancers aren't covered but the mpn mean nuroplasms which is new growth. They were mpd before hand and the D stood for disorder.

Phone then up its worth a try but make sure you quote the ABI that regrouped these blood cancers.

Good luck Tracey

[tracey13]

HI janlol

My husband is 45 he was diagnosed 4 years ago we both had a melt down. We were so scared I was researching for answers constantly.

My husband works full time he leads a normal life although he does suffer from fatigue. He's cut out coffee and it's made a huge difference to his tiredness the caffeine was making him worse.

The people on this forum are really nice people and help settle any unanswered questions.

Maz was a great help she sent out some booklets on my husbands pv and about the different medication available we found these really helpful.

These mpn can be managed there's no cure. Your employer has a duty of care under the mcmillan to help make reasonable adjustments for you as it's classed as a blood cancer.

My husbands company have been really good he works on site 4 days a week and works from home on a Friday as his consultant appointment are on Fridays.

We are so glad we came across this forum as we no longer feel frightened about the pv as people have had it over 40 years and still live a normal life.

Treatment has come on a long way and hopefully one day there might be a cure!

Take care

Tracey

[SuET2017]

I have just taken out travel insurance with a "pre-existing condition" of ET. I took it out with Virgin, but there were many other insurance companies that were fine with it. I just had to declare it.

Yes, I have recently had a successful claim on critical illness - no problems at all and was paid out within two weeks of the claim being submitted. My haematologist had to complete forms, but it was all back-paid from date of diagnosis.

[Mazcd Partner MPNVoice]

Hi Lorraine, welcome to our forum, you are in the right place for help and advice, I have replied to your message, I hope it helps. With regards to travel insurance we have a list of companies that have been recommended by people with MPNs mpnvoice.org.uk/documents/t...

Best wishes, Maz

[Susana7]

Hi Lorraine, I had no problems with my critical illness claim for my PV. As long as your policy covers cancer and does not explicitly exclude MPNs (myeloproliferative neoplasms) it should be fine. Just make sure you send in all the details and timeline of diagnosis and symptoms, and all the letters from your consultant, as evidence. Also, if you don't know that already, you are entitled to free meds on the NHS - you need to fill in a form to get your exemption card which you can get from the consultant. With regular monitoring and appropriate medication, you can hopefully get back to your normal life very soon: I work full time, commute, have kids but also great medical support, a medication that works very well for me (Pegasys interferon) and regular check ups. Good luck! Susana x

[Janlol]

Thank you all so much for the replies.

I have contacted Phoenix Life who my critical illness is with and they are sending forms out. I have had this insurance for about 20 years so I'm hoping it will cover MPN's. As suggested I have also looked at the ABI website and it does say that MPN s were re classified and that this covers new and existing policies so hopefully I will be able to make a successful claim, I will keep you all updated!

I have also had a travel insurance quote from Stay Sure which wasn't as bad as I thought it would be so it does seem there is light at the end of the tunnel.

I'm off to see my consultant this afternoon to discuss starting Hydroxyurea. I have my list of questions so they are not going to dismiss me today as I feel they have done on previous appointments.

I would just like to thank everyone for their support as I feel so much better today knowing there are others I can speak to. I must admit I felt a little isolated before this.

Kind regards

Lorraine

[lizzziep]

Hi, I have ET, diagnosed nearly 6 years ago. I've haven't got travel insurance as we don't go abroad, we always holiday in this country - all you need for that is a good overcoat and scarf - and that's in July!

I've read on other posts that health insurance usually pay out for ET as it is classed as a cancer so best of luck with that.

Best wishes for the future and hope your ET doesn't impact much on your life. I have more trouble from my arthritis.

Best wishes Lizzie

[Stephen399b]

I have ET and systemic mastocytosis and Staysure have insured me for our last couple of holidays with not too much additional premium. My bank said they could not cover me as part of my account cover.

Stephen

[tracey13]

HI

I found a screen shot about pv been reclassified with critical illness.

I can't fathom outhouse to sent you the photo.

Can someone tell me how to attach a photo.

Tracey

[ChillyAsh34]

I took mine out with staysure not expensive either good travel insurers