In what situations have you felt unfairly trea... - CLL Support
In what situations have you felt unfairly treated since diagnosis? Please tick all that apply and add comments describing your experience.
Please select all that apply:
I've been fortunate in really having just one inequitable (in my view) problem which can't be resolved. I quit my job early, partly as a result of having CLL, and subsequently took my pension early. Because I took it early, and therefore in my employer's eyes, they would be paying it for longer, it was reduced by some 40%. They refused to consider that my illness was incurable and would likely affect my life expectancy, thereby reducing the time my pension would have to be paid. To be fair, the issue would have been the same for any illness, not just CLL.
I too took the decision to take my pension early but if we all knew what the future held for us then there would be no need for an insurance or pension industry.
I had a similar experience after also quitting my job early and coming to the realisation that I wouldn't be able to stay in employment due to my compromised immunity. I wanted to transfer my superannuation from my last job, with was with a government authority, into my private super fund from earlier employment. The tax rate payable was to my advantage if my disability was recognised, yet despite support from my GP and haematologist, I also required a character reference from my previous manager and it still took nearly two years to resolve in my favour.
I decided to retire and take life easier or should I say partly retire leaving only the essentials that I needed to get involved with which meant far less stress as when first diagnosed I did not know what lay ahead and how much time I had to put my affairs in order. Fortunately, although I did not have a pension I had financial security for any future which made the decision easier. However eight years on from diagnosis and I still need more time to finalise issues but then with the passing of time I became more confident in some future and therefore less attentive to my outstanding issues but now my mind has to concentrate once more on finalisation as I face treatment in the form of an Ibrutinib trial starting in the next two weeks.
I was very lucky, the last few years I was at work I had CLL, but my doctor didn't tell me! I did get lots of infections, but luckily I worked for a Health Insurance Company who were very understanding. I retired and had a year travelling, feeling very tired on occasions, but blissfully unaware that I had something that should be declared on travel insurance. Good job I never needed it. Feb 2008 I went to my doctor with exhaustion that wouldn't go away. I had moved, so it was a different doctor. Oh that will be the leukaemia he said, blithely. After I had picked myself up of the floor I saw the specialist, researched everything I could on CLL and accepted the bouts of exhaustion and got on with my life. The knackeredness comes and goes and I have a sleep during the afternoon and I've had had a bout of cancer and an infection that hospitalised me, but I have never felt discriminated against and have in that time obtained a new partner bless him. 13q deletion so I know I'm lucky.
I was initially refused travel insurance and those that offered cover were both expensive and excluded any CLL related illness (what is the point!). I am in the early stages of CLL and stable at the moment. I want to travel whilst I am able and safe to do so especially to see family overseas. I even asked my MP if the government would consider waiving air duty tax for travel to compensate CLL travellers for the additional costs associated with insurance.Needless to say they refused after I had chased them up twice for a response. Now that I have been diagnosed for over a year I have found travel insurance easier to find and more cost effective and they will cover my CLL
Like Dave above, I declared my CLL to my travel insurance company, who promptly said they would cover nothing CLL-related (including the temporary steroid treatment I was on). As CLL is early stage (so no risk) and I appeared to have minimal reaction to steroids (risk, as I was coming off them whilst away), I took risk in going on holiday to US. Mercifully just back and no problems. However, I will to need to research travel insurance that does cover CLL (preferably early stage, so don't charge more.....any ideas anyone?)
When planning a trip from the US to Canada I was initially told I could not get insurance. When I read the fine print it was only if I had been treated for any condition within the last 6 months - I hadn't been, so i went back and educated the company I was dealing with.
Hey
If it is any interest - unfortunately for UK people!
I have used:- It's So Easy Travel Insurance, 27 Old Gloucester Street, London WC1N 3XX. We are registered in England as It's So Easy Travel Insurance Limited, company number 3931540.
Their telephone numbers are:-
For our general travel insurance that includes other medical conditions: 0844 357 1315
OK you have to declare a few things - but nothing too personal
Also you can not insure months in advance - i guess because CLL can develop.
Also don't forget the free European Health Insurance Card (EHIC), you can avoid huge medical bills if you have an emergency during your trip.
Healthcare is free at the point of delivery in the UK, but don't assume it's the same abroad. You will often have to pay part, if not all, of your medical bills. If it's serious, the costs could easily be very high.
Having travel insurance and the EHIC can avoid large medical bills, delays in treatment and undue stress in the event of a medical emergency.
The EHIC, which is free of charge, replaces the now obsolete E111 form. It entitles UK residents to free or reduced-cost medical treatment in European Economic Area countries and Switzerland.
Marty
Marty, you were right in the first place, the EHIC card is free. Applying through some websites may charge you but it's not necessary to do so. I've just renewed ours over the phone without charge.
nhs.uk/NHSEngland/Healthcar...
Newdawn
Hi. Neal hope this is a good way of asking you a question re travel insurance in Australia? I'm going on a cruise up to Singapore and I must take out travel insurance. I have just searched HU. But most info is from UK or US. Do you have anything to recommend with pre exisiting etc. or direct me to browse here for us in oz?
Sheila
Hi Sheila,
You are best off asking your question as a new post. Sorry, but I don't recall any prior Australian travel insurance discussion. I'd love to travel, but I don't think I could afford the travel insurance given the state of my immunity, so I can't help you with recommendations, other than to check what cover you may have under your private health insurance if you have that. You might be able to get a quote for additional cover via your health insurance too - check it out.
How to create a post:
support.healthunlocked.com/...
Note particularly point 6 on how to set your question viewable to this community only - you don't want to advertise to the entire Internet when you'll be away 
.
Neil
