New here and any information on critical illness claim

Active Monitoring (Watch and Wait)
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Hello everyone, eventually plucked up courage to write and post.

I wanted to thank you everyone, who has posted as it has given me reassurance and understanding of this condition, true compassion and empathy from the Community.

I was diagnosed last November with MPL mutated Essential Thrombocythemia , JAC negative and CAL negative. This was after 2 years lower abdo pain with no diagnosis until an endoscopy consultant requested full haematology panel, and the rest as they say is history.

Being Actively Monitored now after a few battles between GP and local hospital. But now, and thanks again to the BC specialist nurses, who helped prompt getting me the support I needed, I am now reviewed every 3 months, bloods and phone call.

I still don’t think of the diagnosis it in its entirety, until the days when I feel like I have had my batteries pulled out and all systems stop.

Fatigue and headaches are my worst parts. Platelets are stable on the asprin and on nortripyline nightime for the headaches.And recent D3 supplement as it was well below where it needs to be.

I’m still working full-time time, but work and my occupational health nurse and HR are pretty switched on.

Working from home when it fits in with needs of the service helps greatly.

A recent scare with a headache that didn’t calm down for 4 days and blurred vision and trip to A&E, started me thinking of reducing my hours or retire early. I turn 60 at the end of the month.

I’m wondering if anyone online has had a critical illness policy :thinking: and has had a successful claim?

It would really help in reducing my hours and looking to go early at work.

I know that the Essential Thrombocythaemia ('ET') is now WHO recognised but cautious of claiming as bit skeptical of being “stable” on the Platelets front and Actively monitored.

Does that have a impact on the claim, if anyone knows?

Does anyone have any advice?

Thank you all in advance for being here :folded_hands: :heart:

Jude

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Hi @EddieCat

Welcome to the forum.

You will find that this is a hugely supportive place.

It’s great to hear that your Occupational Health Nurse and HR are being really supportive.

I’ve never had Critical Illness Insurance. I know that my sister who passed 10 years ago with a different cancer claimed on her policy.

Obviously don’t know the details.

What I would suggest is speaking to a Macmillan Benefits Advisor as they are very good at offering support with financial matters. They have probably helped many others with this type of claim.

I’ve included a link to their web page below

Hope that helps. Take care.

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Thank you very much Duncan for taking the time to reply. I will contact Macmillan today.
Look after yourself and thank you for welcoming me.
Kindest wishes
Jude

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Pleasure Jude @EddieCat

Hopefully get the help you need through Macmillan.

They were excellent with me and I know they were for my sister.

Take care

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Hi @EddieCat,

Welcome to the forum! I’m so glad our supportive community has helped you feel able to post for the first time, and can see that you’ve already had some helpful replies.

As you’ve mentioned, Essential Thrombocythaemia ('ET') is now classed as a blood cancer. From what we understand, this means that it is often covered by critical illness policies. However, it is important to check the exact wording of your policy to see what is covered. Hopefully the information in your policy documents will be clear and may even mention Essential Thrombocythaemia ('ET') specifically.

If the wording is unclear and you’re not sure how this applies to you, your haematology team should be able to help. You can also ask them to provide supporting evidence, if this is something your insurance provider needs.

I hope this information helps!

Take care,

Tom

Support Services Manager

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Hello there Jude @EddieCat, welcome to the forum and may I just say I’m glad you joined. It does take courage to share here, and I’m sorry you had reason to.

I’m hoping the abdomen pain has passed, from my non-medical understanding that can be a common side effect of Myeloproliferative neoplasms ('MPN') like Essential Thrombocythaemia ('ET') and fades with treatment, but do check this with your specialist. Perhaps you’d like to read the Blood Cancer UK information about Essential Thrombocythaemia ('ET'): Essential thrombocythaemia | Blood Cancer UK

Glad to read that you’re under active monitoring. From what others around the forum say about living with Myeloproliferative neoplasms ('MPN'), active monitoring sounds like the ideal but is not always offered. My own treatment for Polycythaemia vera ('PV') is now essentially active monitoring too but with mild daily chemotherapy.

I know the fatigue you mention well and it’s no joke is it? Sadly it’s very common for those of us with blood disorders. Thankfully there are some tricks to improving energy that I’ve found really helped with my own disabling fatigue that may be of interest to you too: Fatigue | Blood Cancer UK and Tiredness (fatigue) and cancer | Macmillan Cancer Support

Can’t speak for critical illness policies, but I see you’ve received great advice from @DuncanB and Tom. If you’d like to speak with the Blood Cancer UK specialist nurses about further resources they can be called free on 0808 2080 888.

Do share any tips you discover please @EddieCat, I’d be interested to know what you find out and I’m sure other forum members will too.

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Oh and @EddieCat if you’d like to find others around the forum who live with Essential Thrombocythaemia ('ET') and Myeloproliferative neoplasms ('MPN') just use the search box at the top using terms like ‘Essential Thrombocythaemia ('ET')’. Do reach out, it’s a friendly bunch here living with Myeloproliferative neoplasms ('MPN')!

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Hi @EddieCat

Different blood cancer, I have multiple myeloma and was already in induction treatment ahead of stem cell transplant when I made my critical illness claim. There are lots of admin steps to go through and they contacted both my GP and Consultant and the process took about 12 weeks but it was settled in full.

I would suggest ringing the insurer to discuss before you open a claim, because I don’t know if being in active monitoring rather than treatment has a bearing on it.

Good luck xx

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Welcome to the forum, @EddieCat
so glad you plucked up the courage to post.

On the critical illness side of things, I can share my own experience with claiming.

I’d actually taken my cover out only three years before I ended up needing it. My sister had been diagnosed with breast cancer and it was a huge wake-up call for my husband and me, as we’d helped her with a few bills during her illness. When I became poorly myself just three years later with Non-Hodgkin Lymphoma, I was so relieved we had taken a policy out. It was a lifesaver financially.

The claim process itself was really straightforward. I got a letter from my consultant, filled in the form, and the payout came through before I’d even started my treatments. Being off work on reduced pay is stressful enough, so having that financial cushion made a world of difference.

Every policy has its own fine print around how conditions like Essential Thrombocythaemia ('ET') are defined—especially when you’re on active monitoring—so it’s definitely worth digging out your policy document or giving your provider a call to see where you stand. Having your consultant support the paperwork usually makes a big difference too.

Take care of yourself, and please keep us updated on how you get on.