Updated and reviewed 10th June 2022
FOR UK NEUROENDOCRINE CANCER PATIENTS but some of my findings are potentially applicable in other countries although there will be different insurance underwriting rules for cancer patients. One thing is common, cancer patients present risk, and increased risk is normally more expensive in the insurance business.
Nothing in this article should be interpreted as a recommendation to travel or use any company or service mentioned. This is based entirely on my own experience and decisions. I also declare no interest in any of the companies listed, i.e. I am not receiving any free or reduced cover or any financial incentive for mentioning a particular company. I do this to try to help others. I first started supporting this issue via Macmillan in 2017 but they have now gone quiet on the issue. It’s also good to see other UK NET organisations now jumping onto the same bandwagon in 2022, long overdue.
Background. Ronny Allan was diagnosed with Stage IV Neuroendocrine Cancer in 2010. Following several surgeries and procedures in the first 2 years after diagnosis, he remains under surveillance, and he remains on a 28-day treatment plan. I mention this data because it is relevant to travel insurance underwriting.
My travel insurance experience since diagnosis
I’ve always had travel insurance, incidents or accidents overseas can costs thousands, many thousands in certain countries. If course if you are fit and healthy (and young) it’s not too expensive. Everything in the insurance industry is based on risk – I get that. As you get older, you get riskier in the underwriter’s eyes, and the price goes up. However, it’s still reasonably affordable when you are at the ‘young end of old’ if you get my meaning!
Add in a critical illness such as cancer and BANG, suddenly you are very risky, and your premiums are going to rise, particularly in scenarios where the cancer is metastatic and you remain on treatment and surveillance, as in my own case outlined above (even 11 years after diagnosis). When I was diagnosed and going through treatment, travel insurance wasn’t on my mind. Apart from recovery from surgery, I still felt fairly well and healthy to be honest. Within the UK wasn’t an issue and I did venture to fairly close places overseas within Europe. I had my EHIC card for hospital cover (see further below), and I understood it did not replace travel insurance, but it made everything less risky in my own eyes. If I felt an illness coming on which was related to Neuroendocrine Cancer, I would try to ‘limp’ home and seek help there, i.e. I’ll accept the risk.
However, after a few years, I wanted to explore wider. Understandably, many stage IV cancer patients focus more on their ‘bucket list’ after diagnosis (top tip, get that bucket list started before you get cancer, it’ll be cheaper). I ventured to USA and have plans for other popular holiday spots for Brits outside Europe and North America. I came across an excellent insurance policy for members of the Forces Pension Society, i.e. for veterans of the UK Armed Services. This was a reasonably priced policy on an annual worldwide basis and had minimum criteria for coverage of all pre-existing conditions. Perfect for someone like me who was as fit as a fiddle (probably fitter than many insurance underwriters) but had cancer at stage IV. However, the price seemed to jump every year by a much higher percentage than inflation, until 2021 when they announced the scheme would be shutting down. It appears it was a loss leader for Axa Insurance. Clearly, the cover was not ‘personalised’ enough.
The following information is the result of my research for affordable travel insurance for my own personal situation.
UK Government health card schemes
These are not insurance policies, but they do give some peace of mind in cases of medically necessary treatment and assistance when overseas from UK. But it’s important for UK citizens (including those living abroad) to understand recent changes following UK’s department from the EU.
The European Health Insurance Card (EHIC)
The UK EHIC is being phased out since the UK left the European Union (EU) but read on. If you have a UK European Health Insurance Card (EHIC) it will be valid until the expiry date on the card. Once it expires, you’ll need to apply for a GHIC (see below) to replace it (you can still apply for a GHIC right now though). You can use a GHIC or an in-date EHIC if you’re travelling to an EU country. However, an existing in-date EHIC can no longer be used in the European Economic Area (EEA) i.e. Norway, Iceland, Liechtenstein or European Free Trade Association (EFTA) i.e. Switzerland.
However, there is a new version of the EHIC called new UK European Health Insurance Card (new UK EHIC). This is only available if you have rights under the Withdrawal Agreement, i.e. People who can apply for the new card include:
- nationals from the EU, Norway, Iceland, Liechtenstein or Switzerland who started living in the UK before 1 January 2021, and their families
- some British State Pensioners who started living in the EU, Norway, Iceland, Liechtenstein or Switzerland before 1 January 2021, and their families
- UK students who started living and studying in the EU, Norway, Iceland, Liechtenstein or Switzerland before 1 January 2021
UK citizens working in the EU may have different arrangements.
Depending on your circumstances this will be either a:
- UK Global Health Insurance Card (GHIC)
- UK European Health Insurance Card (new UK EHIC), if you have rights under the Withdrawal Agreement
The Global Health Insurance Card (GHIC)
This is new and will replace the EHIC (for EU countries only) although in future it may cover more than EU cover. A GHIC entitles UK citizens to free or reduced-cost state-provided healthcare where treatment becomes medically necessary during a temporary visit to the EU. The GHIC will not cover the EEA or EFTA states (Norway, Iceland, Liechtenstein and Switzerland). The UK is seeking to conclude new, comprehensive agreements on social security coordination, including reciprocal healthcare and GHIC-type coverage, with the EEA/EFTA states. Until a new agreement is in place, the UK and Norway will apply, on a temporary basis, an amended version of the 1991 Convention on Social Security and Protocol on Medical Treatment between the Governments of the UK and Norway. See visiting Norway, Iceland, Liechtenstein and Switzerland for information on accessing healthcare while visiting these countries. The UK government is seeking to extend the use of the GHIC to these countries in the future.
Do I need to wait for my EHIC to run out?
No. I now have both EHIC until it’s run out date and a GHIC. I applied online and was also able to add members of my household. It took 5 minutes to apply, and they arrived 2 weeks later. Clearly, they don’t replace travel insurance, but they do provide some risk reduction if medically necessary treatment is required in an emergency. There are subtle changes though, for example, the wording of the GHIC states “your card gives you access to treatment at the same costs as residents of the country you are visiting. In some countries, state healthcare is not completely free to residents and you will have to pay a contribution towards the cost of your treatment. You will not be able to claim the money back for this contribution“.
What about beyond Europe – reciprocal healthcare arrangements?
Did you know the UK has reciprocal healthcare agreements with some non-EU countries? Within these countries, you’ll often be treated as if you were a resident of the country you’re visiting. Evidence required can vary depending on the specific agreement. For example, with Australia and New Zealand? See full list here.
To emphasise two things above, always check the arrangements in the country you are visiting, make sure you have travel insurance cover. It’s also worth noting that Insurance Companies do not appear to take policyholder possession of EHIC or GHIC into consideration, even though it does derisk claims for “medically necessary treatment” covered by such schemes, which will include cancer issues. As I said above, this should give some peace of mind about what can be covered and should therefore allow you to assess your own personal risk. The general advice is still to have travel insurance in place.
My travel insurance search in 2021
As explained above, after living with Neuroendocrine Cancer for 11 years and having had access to a special deal for insurance cover for all my pre-existing conditions at affordable rates, I once again find myself looking for affordable travel insurance from April 2022 onwards. I have a cruise booked in April 2022. Cruises add another dimension of risk to travel insurance and by default, more risk tends to mean more cost. What I found out below also applies in non-cruise situations except where I specifically talk about cruises.
Here is what I found:
Apart from the minefield that is COVID cover (which will eventually settle down and be a standard within every policy), I found these key things:
1. Most insurance companies online ask the same questions almost word for word. Make a list of your answers so you can copy for each quote. If you suddenly realise you and something wrong, go back to an older quote (most let you save) and update so every quote is the same. It’s therefore important your quotes are identical as insurance companies are known to share data. There was one exception – see ‘Insure With’ below, I was disappointed with my experience of getting an output due to their confusing quote layout and what appeared to be a widely different approach than their main competitors. I was contacted by one of their departments, who at least confirmed they use a different model of underwriting than all the other companies who gave me a quote below. Their system was still unable to provide a quote online. The quote they gave me over the phone while competitive in comparison to my selected company and while it wasn’t 100% the same cover, it would have been adequate for my needs. But they were unable to quote for an annual policy even over the phone.
2. At least “Neuroendocrine Tumours” is listed in the pre-existing conditions, it wasn’t when I checked 10 years ago. Before you jump for joy at the update in the reference data used by insurance underwriters, I did not see Neuroendocrine Carcinoma listed separately. But there is an entry which just says “Carcinoma”. It does list DIPNECH, Pheochromocytoma, Paraganglioma, Merkel cell tumour, Carcinoid Tumour, Carcinoid Syndrome. It did list Insulinoma but none of the other pancreatic NET functional syndromes. What this does show to me is that the reference data for Neuroendocrine Neoplasms are incomplete and the fact they have both Neuroendocrine Tumours and Carcinoid Tumours indicates to me a lack of understanding. (If you find others let me know, I could have spent all day on this task!).
What it also means is that Neuroendocrine Neoplasms have not been fully considered (not understood) by underwriters and this may be reflected in unnecessarily high-risk factors and therefore unnecessarily high premiums.
3. When you select Neuroendocrine Tumours, it asks other related questions, and this will be key in working out risk. It asks whether it is “cancerous or non-cancerous”. Non-cancerous is a synonym for benign. On selection of “cancerous” It also asks you if the “cancer spread from the original site to elsewhere in the body”. As I have liver and other metastases, I selected “yes – to other organs of the body”. They then ask a few questions about time since last treatment but it’s a pretty straightforward binary choice – “within the last 5 years” or “more than 5 years ago”. You’re then asked if you’re currently having or planning to have chemotherapy or radiotherapy, easy for most of us and then whether you refused to have chemotherapy, radiotherapy or surgery. They also ask the outcome of your most recent scan or x-ray – mine was stable, yours may not be. They also ask if you are taking strong painkillers and then lastly if you need assistance with day-to-day activities. For those with localised tumours (i.e. primary only) or regional spread (e.g. lymph nodes only), I suspect it will be a bit easier to get a quote online, i.e. more companies will quote for you than they did for me, and it should be cheaper too.
4. I had to declare all pre-existing conditions I was being treated for e.g. in my own case, somatostatin analogue for the tumours, a pulmonary embolism, a side effect of my surgery and I remain on anticoagulants. There were others. I did note some of them only changed the quote by a few quid, I guess some things are pretty common in the general population. You don’t have to list the medication but be aware in the event of a claim, insurance companies can write to your GP etc. Each pre-existing condition will have sub-questions to answer, and this goes into the algorithm. Everyone might be different here (stage, etc).
5. Some companies will halt the online quoting process as they find things, i.e. their process calls a halt as they are unable to cover. The message tends to say “unable to quote”. In these circumstances, always make sure you have entered something properly before dismissing the quotation. I was confident of what I had entered so I did not phone these companies up to ‘haggle’ – the questions would have been the same. Some people in patient groups say to call companies rather than do an online quote but in a patient group, be careful of thinking you can get cover because another patient did – it’s like comparing apples and pears as it is not just about ‘Neuroendocrine Tumours’, it’s about where you’re going, age, spread, comorbidities (i.e. other pre-existing conditions). Plus, if you call them, they will ask you the very same questions as you can do online. Although I had an online quote from the company I selected, they ran me though all the questions and said the quote is the quote. But when I spoke to Insure With, they said sometimes it’s better to call if the online system rejects the request for cover and I suspect that might be their own internal policy plus their online algorithm is too rigid.
6. Cruises. As mentioned elsewhere, I was looking for cover which includes a cruise. When you go on a non-cruise holiday, the risk is all on you to get your cover in place. With cruises, medical issues can be problematic for cruise companies. I suspect this is due to the limited healthcare facilities onboard plus the cost and inconvenience to other passengers is someone needs a casevac or diverting the ship to the nearest port for assistance. Consequently, there are processes in place prior to boarding to declare pre-existing conditions and provide evidence of insurance cover. Some cruise lines also identify a minimum cover you must have, this is mostly based on medical cover – my company insists on at least £2 million minimum, cover for emergency evacuations and medical expenses related to COVID-19 and cover for repatriation, cancellation and curtailment. I’m fairly certain most cruise companies will have something similar. Whether possession of appropriate insurance is robustly checked before being allowed to board is not known to me, never been on a cruise before. I guess in the current pandemic, this may now be heavily policed. I won’t be taking chances.
Which companies did I obtain or attempt to obtain quotes?
I selected companies that frequently come up in patient groups and on UK cancer org websites. I checked entries within my own patient community, on Neuroendocrine Cancer UK, and also Macmillan (covers all cancers and has a ton of information on insurance). Worth pointing out Macmillan do not recommend any particular companies. I whittled my list of companies down to around half a dozen and used online reviews to assess customer satisfaction plus if they specifically mentioned “pre-existing conditions” or “cancer” as a specialty.
I have a travel insurance policy with my bank account, had it for a long time. As you would expect with a bank account inclusive policy, it’s a low to medium risk affair in practice and I had already established some years ago, that they would not cover me for the cancer. Everything else is fine. I did try to call them to enquire, where it was reiterated to me that they were a low to medium risk insurance. Even after I told them I had to a low to medium risk cancer situation, they wouldn’t budge. I will return to that issue down a bit – because it became clear to me that to insurance companies and underwriters, cancer is a very broad-brush term and risk is also applied broadly across cancer types – and by default, so is cost. This is wrong.
I logged on and had my phone ready, here are the results. Bear in mind that it was based on my situation (including age, holiday location/type) – Neuroendocrine Tumour, metastatic to other organs, still being treated within the last 5 years, showing stable scans. Plus, a whole host of other stuff, some of which I covered above). I used exactly the same info on all quotes, and I reiterate in regard to my quote experience below, some of these companies might still work for you if you have (say) a localised tumour and you have not been treated for more than 5 years and you latest scans show no evidence of disease). My situation is the total opposite of that, but I know many people in the NET community are in the same boat as me.
I quoted for me as an individual on a single trip of one week on a cruise up the Norwegian Fjords, stopping at several Norwegian towns on the way. (I toggled cruise cover on every quote where it wasn’t standard cover and saw little difference in price). Most companies have different levels of cover, e.g. increased liabilities, medical cover amounts, etc. Most companies also offered an annual policy – these worked out about 2 to 3 times the value of the single quote I was looking for. I would have been tempted to take out annual but still have 6 months cover left on my current annual policy.
Tip: Do not accept a quote too quickly, most will follow up your online quote with an email. Two companies followed up a few days later with discount offers. However, in one example, despite taking 15% off, it ended up only being £3.57 as they only discount certain parts of the cover (extremely small print). Watch out for that, it seems borderline criminal. I called them to let them know how I felt as a customer. In other examples of alleged discount, the quote still seemed extortion.
All companies listed below are linked to their websites. In addition to my bank provided insurance policy, the following companies were unable to quote in my case (they may work for you, but it didn’t for me):
1. Making Insurance Accessible (MIA) – not accessible for me!
2. Insurance With – not giving out any quotes when I checked on 9th Sep 2021 – this is a temporary situation according to a notice on their website. I rechecked on 26th January 2022 and they had restarted quotes. I found their quote layout in terms of questions was quite different to the 5 online quotes I was able to get below and more confusing. In the end, their online quote system would not provide cover for me. I was contacted by one of their departments, who at least confirmed they use a different model of underwriting than all the other companies who gave me a quote below. The quote they gave me over the phone, while competitive in comparison to my selected company but wasn’t 100% the same cover, it would have been adequate for my needs. But they were unable to quote for an annual policy even over the phone. Their system is still unable to provide a single or annual quote online.
I managed to successfully obtain an online quote with the following companies:
Special insurance deals for UK Armed Forces Personnel and Veterans
I wrote about the ending of my current veteran’s policy (runs out next month) but there is news of a replacement also via membership of the Armed Forces Pension Society (2022 membership fees circa £42). There is inclusive membership for you and your spouse/partner so if only one of you is eligible, you still get cover for both of you. Travel insurance is only one of the benefits available.
All the information below is from the members’ area so you will not be able to see it unless you are a member. But you can read more details here if you are eligible to become a member. Also, without access to the members’ area, there is information on these membership travel insurance policies in an ‘FAQ’ here – Trinity-Travel-Insurance-FAQs.pdf (forcespensionsociety.org). I have extracted each of the 3 types of cover below:
The Trinity Travel Insurance Offer for the Forces Pension Society has three options:
FPStravelcover – annual travel insurance scheme for Over 50’s exclusive to Forces Pension Society members (available up to age 79 on joining during the 1st year – thereafter up to age 74). This is an annual travel insurance scheme covering multiple trips over a 12-month period. The costs are £270 for individuals £375 for couples and single parents and £395 for family cover. Only available to Forces Pension Society members. Once a member of the scheme you can remain on it indefinitely as long as you continue to pay the annual premium. There is no need to declare your medical conditions. Worldwide cover is provided on a ‘Fit to Travel’ basis (see FAQs).
A few facts about what looks like an excellent policy for those eligible with a stage IV NET diagnosis and who are over 50:
1. The policy period runs from 1st November – 31st October annually, so if you take out a policy on 1st March, it runs out on 31st October.
2. If you join this year (2022) you can be up to age 79 and then as long as the renewal does not lapse after that, age is no longer an issue. From 1st Nov 2022, the maximum age to join the scheme will be 74.
3. Membership of the Forces Pension Society is necessary to be a member of this travel insurance scheme.
FreeSpirit – Travel Insurance for all ages (no age limit and wide cover for medical conditions). (Note – Free Spirit was one of the companies I was able to get an online quote from (but outside of any FPS scheme).
This is a policy designed for travellers of any age who don’t qualify for the FPStravelcover scheme or TravelPlus. Annual and single trip insurance is available. Forces Pension Society members will benefit from a 15% discount on this product using this code TFPS15
TravelPlus – wide-ranging cover for individuals, couples and families.
This is a policy designed for members (and their families) who are under the age of 50 but also available for ages up to 75. Annual and single trip insurance is available. Forces Pension Society members will benefit from a 15% discount on this insurance.
As you would expect, insurance policies are full of definitions, most of which are not fully understood by those who read them. Fortunately most policies will provide a decode of these conditions somewhere in the policy documentation and I would expect a company which specialises in pre-existing conditions to major on these points. Those not from UK should note that these may differ on a country by country basis.
I think there’s two main definitions I would bring to your attention and I used the ones from the policy document of the company I have used. These examples are probably similar in most UK travel insurance policies but it’s advisable to read any policy you take out.
“any disease, illness or injury for which you or anyone else insured on this policy have:
- taken any prescribed medication or required medical treatment.
- consulted a medical practitioner and/or been registered as an in or out patient.”
As an example, I’m not sure if I need to declare a cut which needed stiches when I was age 14, almost 52 years ago! However, if you read elsewhere, you then find more info about how they apply that definition:
“Pre-existing medical conditions We will cover you for claims associated with those pre-existing medical conditions or disabilities you disclosed to us and we accepted in writing. We will not cover you for claims associated with pre-existing medical conditions that you did not disclose to us and we did not accept in writing. You must tell us about ALL medical conditions for which you answer yes under Medical health requirements 1-4 above. We cannot provide cover for some conditions and not for others you choose not to include in your declaration to us.”
The “1 to 4 above” refers to this information:
Medical health requirements. Have you or anyone else insured on this policy:
1) Taken any prescribed medication or required medical treatment within the last two years?
2) Been a registered in or out-patient at a hospital, clinic or GP surgery in the last two years?
3) Been placed on a waiting list that could cause you to cancel or curtail your trip?
4) Been advised of a terminal illness?
So I do not need to declare my stiches from 52 years ago!
This is a sensitive and controversial point. I see many patients who link “Stage IV” with a “terminal prognosis” but this is far from clear in many cancers. Personally, I never think of myself as “terminal” despite a Stage IV diagnosis. I’ve been living with this cancer for 11 years (and it has been growing for some time before I was formally diagnosed). No one has told me I’m going to die, and I am supremely confident that no Neuroendocrine Cancer specialist would commit to a date. I see too many people advertise their diagnosis in our own community as terminal but appear to have been living a significant time since diagnosis. I accept that some countries have different meanings but I’m fairly confident that my view will prevail in any debate.
I could not find a definition of “terminal prognosis” in the documentation for the company I chose. However, I did find this:
“Terminal prognosis If you have been given a terminal prognosis, provided you have received confirmation from your GP or medical practitioner that the prognosis is not less than 6 months from your return date of travel, and he/she has confirmed that you are fit to travel, we may still be able to provide cover.” There you have it, a sensible and pragmatic answer.
Reminder – this is based on my own situation. Fairly significant differences in quotes. It was a bit of a minefield in that they all have different levels, I had to quickly assess the cover provided by each quote – some of them were pretty much the same or closely matched. In the end I went with AllClear based on reputation (reviews) and competitive price (in comparison to my other quotes). Had I been buying an annual policy, I may have gone with StaySure who also had a competitive single trip price, a good reputation and were particularly competitive with annual policies.
But remember, the prices in my quotes may be different from the prices in your quotes. Your quotes will be based on you (not me!)
Are Cancer patients a cash cow for travel insurance?
When I saw the prices I was being quoted for a week’s cruise holiday from UK just up to Norway and back, I felt really angry, more so with some companies who wanted me to pay almost the price of my ticket. I consider myself to be a low-risk cancer patient and someone who is quite fit and healthy. I think I’m much less risk than many people who have non-cancerous conditions and who may have been offered cheaper policies in the same scenario.
I would love to meet with a representative of British travel insurers to explain my particular cancer, including grade and differentiation, the fact that stage IV is not the red flag it is for more aggressive cancers, it’s incurable but treatable, somatostatin analogues are not chemotherapy, etc etc (i.e. all the stuff I say on my social media and blogs). I’m fairly certain other cancers are similar in outlook and are similarly unnecessarily punished by insurance companies.
Here’s a quote from Macmillan Cancer in UK (I highlighted two sections):
“The story of cancer is changing. The UK population is ageing. As the risk of cancer increases with age, more people will be affected by cancer in their lifetime – one in two people born in the UK after 1960 will receive a cancer diagnosis. Improvements in treatment mean that people are now living longer after their diagnosis.
There are now almost 3 million people living with cancer in the UK. This figure is projected to reach 4 million by 2030. Cancer is increasingly about living with cancer, and many people require support several years after their initial diagnosis and treatment.”
It follows that people living with cancer will soon form a large consumer bases for holiday and travel including insurance. Travel insurance companies need to update their risk assessments, definitions and they need start treating each cancer patient as an individual rather than the broad risk labels they currently apply. In the case of my own cancer, it’s patently obvious to me they have no understanding of my cancer, and therefore have no understanding of me, the consumer.
In order that I could go on the holiday with my wife and with total peace of mind, I have been forced to pay an unnecessarily high price for a week on a boat.
YES – cancer patients probably are a cash cow.
I also read through Martin Lewis’s website, his research is excellent, and I particularly liked his 9 tips below – click on the photo to go to this website article on Insurance Cover for pre-existing conditions. Tip 5 is relevant as I got a cheaper quote by removing Chris (my wife) from the cover, she was already covered on a policy which comes with our bank account.
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