[cuilmossParticipant]

I’ve just had my renewal quote from Vitality (formerly PruHealth) and its cost is horrendous. My wife has had MM for 8 years, so far, and is currently in remission. We’re trying to decide whether to switch to the NHS wholly or partially and if the latter which alternative insurer would take on someone with MM, or perhaps it would simply be excluded from cover.

Any ideas welcome….

[annlynnParticipant]

hy. ive had mm since early 2014 stem cell transplant august 2014 i. have had a holiday after most treatment once ive felt able to travel. im insured withvthe bank. tsb. ive informed them ofcmy illness and that im currently in remmision. ive. never paid. any extra premiums and i have kept tgem up to date with everything xx annlynn

[tonyfParticipant]

Hi cuilmoss, like Annlynn our insurance is via a bank account with the coop, but my guess is that they would not insure you.
Other option would be to check the Myeloma UK info sheet on travel insurance (its on the Myeloma web site) and contact some of the companies listed there. I have heard good reports of a company called nowicantravel.
Best of luck
Tony F

[MicheleParticipant]

I think that cuilmoss is talking about health insurance rather than travel insurance.

The premiums are bound to be high but before you make any decisions I suspect that it’ll be an either/or situation as far as receiving NHS or Private treatment is concerned. I don’t think you can mix the two.

[annlynnParticipant]

ah. i see now health insurance !!!! well i am nhs and have had all my treatment on nhs and i am very gratefull but i am with bupa through my husbands work while i was in hospital for sev e nteen days for my stem cell transplant i was allowed to claim 200 pounds per night which i have to say was very helpfull. annlynn. so it does have a usefull place in the system.

[jmsmythParticipant]

My husband diaganosed with Smouldering Myeloma in 2006. Had SCT IN March 2013. We have BUPA and when diaganosed he spoke to his consultant about going private. She was not in favour of it and he went NHS. They have been brilliant. When he needs scans etc he gets them quite quickly. Couldn’t fault NHS

Jean

[janebParticipant]

Hi jean

i have read your recent posts and was interested to read that when your husbands PP rose he went straight to SCT and not chemo. Is that right? My husband was diagnosed with SMM in Nov aged 44. Just trying to get our heads around the condition and possible future treatment. Would be more reassuring to know he possibly wouldn’t need chemo prior to SCT. We have a 10 yr old son and anxious to protect him against what’s happening to his Dad. At the moment he is well and it is life as normal. (Well sort of! ) I think the thought of chemo worries us both the most at the mo.

Thanks

Jane

[jmsmythParticipant]

Hi Jane

Sorry if I’ve mislead you. Frank smouldered for nearly 7 years and proteins where rising – very slowly – consultant decided to do SCT. In retrospect we think she did it a bit quickly because of his age. In Northern Ireland cutoff for SCT is 70. She started him on CDT. Chemo, Dexter and thalidomide. How long has hubby been smouldering? Is his PP’s rising. Everyone reacts to chemo differently. Frank wasn’t too bad but if you listen d to him 😁😁. Your hubby very young to get this disease but there are quite a few young ones on here. Jane not sure if you know but there is Face Book forum for MM which is excellent. Have a wee look. Hope husband smoulders a long time. If I can help do get in touch

Jean x

[digredsParticipant]

Hi Jean,

Could you post the link for  the Facebook forum please? I have had a look but am no expert on FB so am struggling a bit. I am newly diagnosed and am still at the stage were I am wanting to read as much as I can from people with MM who know far more about it that I.

Jane – I have an 11 year old boy so I know how you feel re protecting your son at this stage. He was my first thought when I was told I had MM and the hospital were really supportive and helpful but lets face it, nobody knows their child better than their parents – you will know (when the time is right) what to do and how to handle it.

As for chemo – I am on velcade..no outwardly visible signs are apparent. My son knows I have ‘injections’ twice a week and thats it. Our decision was to drip feed the info to him for as long as we can. When we did the ‘sit down talk’ he quickly made it apparent when he had heard enough so we didn’t push it. Made it clear he can always ask questions but I do wonder if he is slightly afraid of asking in case he doesn’t like the answer? Its not easy, but you will find your way.

Good luck.

Lorraine

[jmsmythParticipant]

Lorraine

Are you on FB. I asked and got replys – you can do a search for UK Myeloma Support Group on Face Book. Michelle posted “What problems is she having Jean? I’ve accepted all the joining requests over the past few days?” Someone else suggested that you ask Ellen Watters who is in Myekoma UK. If you still can’t get on let me know. It is an excellent group to belong to. I am sure you would benefit from belonging to it. Please let me know

Jean

[janwParticipant]

Hi,

My first investigations, CDT and stem cell transplant in 2010 were all financed via my husband’s employment medical insurance with Aviva. Because we knew little about cancer treatment, I think the restrictions on the policy had gone unnoticed by us until I was starting the different parts of the treatment. The Aviva policy restricted the financing of Thalidomide to six months, with no further financing if the drug was used in another future treatment. Luckily with only four cycles of CDT this did not affect me. However, the same timescale was applied to financing of Zometa, the bone enhancing drug. I don’t know what happens if you are on an ongoing drug regime of more than six months or whether there are restrictions on certain cancer drugs. When I asked to access the NHS for monthly Zometa, my private consultant stated I could not mix and match drugs via the NHS together with seeing him as a private patient. Therefore, I changed to the NHS for my myeloma care. Aviva also introduced fixed charging rates for doctors and consultants and if they charge above the agreed rate, you have a choice to pay their extra fees or change to another doctor, which can be stressful when you are trying to organise such procedures as insertion of a Hickman line within a few days.

I think the NHS offers an excellent multi disciplinary team approach to cancer care, withwho all work together to provide you with the best possible care. Under private medical insurance, you are often referred to the NHS hospitals to access their more uptodate equipment and my sct could only have been carried out by an NHS hospital with their special facilities.

I think private medical insurance is very good for one off operations like my son’s tonsillitis and my husband’s recent cataract operation, when they could be seen quickly and arrange an operation date around their employment. However, with the recent changes to the cancer drug fund and the current uncertainty whether some of the newer more expensive cancer drugs not being available on the NHS, then private medical insurance might still be a viable option, depending on whether they restrict the timeframe for use of the drugs. But once you have stopped you current medical provider, it’s impossible to get another medical insurer to cover your myeloma on a new policy.

Regards Jan

[digredsParticipant]

Hi Jean,

My problem wasn’t that I couldn’t join the group..I just couldn’t find it. But thanks to you, I just have and have sent a joining request..or whatever you call them! (Told you I wasn’t very good with facebook)

Many thanks.

[Author]

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