I am hoping that this might prove an interesting topic for our discussions and that some of you might be able to assist me and my efforts in some small way...
It is my current understanding, that in the UK, the US and in many parts of Europe, that if a person suffers from an MPN and wants some financial assistance the policy devices in those countries does in fact (invariably) cater to meet those medical needs.
However, Australia, I am really sad to say, we are still pulling up the rear. While I do not wish to become to political here of course, I am a human rights student and I care deeply for all forms of life, humanity included... I digress...
I realise that not everyone who has an MPN is at the same place as everyone else...
Some of us are here maybe new to MPNs, but we may have had the complaint for many years and have learned how to live with our conditions. For others, the course of their disorders has only just begun, and for some it is simply unbearable at times...
For instance, some people can and do still work, however, there are also those of us for whom the thought and pressures of work is enough to make them feel somewhat ill, and I unfortunately I am often a party to such a cohort.
Some days... I can feel positively brilliant... Much like I have felt of late with the coming of the warmer Spring climbs.
However, my bones are aching most of the time. My shoulders sometimes feel like they might drop out, and my limbs can become so weak that I can barely walk more than 50-100 metres before needing a rest.
Most nights for me are filled with interrupted sleep, having to rise at least two to three times each night, where I invariably find myself falling asleep while sitting up on my bed waiting for my nausea to pass again...
My spleen being enlarged, always makes me feel as if I am full, and as a result, I skip meals and feel even more fatigued...
I could go on but I am sure that all of you here know of what I speak...
My point is this, I am trying to work on some ideas in Australia to help address this policy-void issue for those who suffer from an MPN. While for some people work is essential to their well-being, for others with an MPN, the thought of trying to cope is a horror movie in the making...
Thanks for listening, and I hope all of you have an excellent day today...
Best wishes
Steve
(Sydney)
Post ET (pre-fibrotic) MF
Written by
socrates_8
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In the UK the only 'entitlement' you have is that you get an exemption from NHS prescription costs.
Any claim for benefits is based purely on how you as an individual are affected by your condition and not simply awarded to you just because you have it.
As those that have been down the line of claiming benefits will testify they make you jump through a lot of hoops to get it.
So sorry to hear you're feeling so grim, as you say MPN's effect us all differently.
I tried for ages to get a petition going to allow patients with a life limiting disorder to be allowed to draw their state pension at the age of 55 instead of 65 ( in my case almost 67) - I even got as far as an airing on radio 4 over here, but of course it all fell on deaf ears.
So far, I'm extremely lucky in two ways, I feel fine most of the time (touching wood big time) and I'm retired and a " kept " woman with a wonderful husband. I have PV.
My heart goes out to you, the thought of having to work and earn a living fills me with horror.....
Half of the problem is I think, that our governments consist of young middle aged men and women who haven't suffered prolonged or serious illness, and quite frankly haven't a clue of what a debilitating condition can mean.
The country's coffers are also banging on empty thanks to the last government.
As Yorkie 1 says, there are many many hoops to be jumped through here before any benefits are given - unless of course you happen to have landed penniless in this country without a roof over your head, or are too idle to go out to work...... But that's another story. Sadly the rumours of free cash in the uk have gone global, which is why every poor asylum seeker and his family wants to come here. Our NHS is in dire straits - with the exception of a few truly superb centres of excellence.
Sorry to burst your bubble but those who truly need help in Britain, the disabled, young carers, seriously ill, dementia patients and their carers ( I am one of those) don't really get the help that's needed.
My husband had to phone 46 care homes here in Cumbria before he found one with a vacancy for his mother - an hour and a half away!
Sadly, self funding is the only way to go, which doesn't answer your question or help at all.
Sydney is a wonderful city, my sister in law has lived there for many years.
Hope things pick up for you, perhaps you might consider seeking a second opinion? You don't say what your treatment is? Are you on Ruxolitinib?
I honestly believe that the best way to learn anything in our world is simply to ask a question...
I purposively avoided going into the deeper discussion of all of my symptoms because most of us here know the sorts of random complications that they might include or consist of etc...
A few days ago, I was driving when I suddenly had to pull over and ask myself the questions:
Where am I going and why? I was there on the side of the road for a very disturbing 10 minutes or so before I was able to drive off again. So incredibly disturbing!
Louise, I am Post ET (pre-fibrotic) MF. I was started immediately on low dose Aspirin, blood pressure pills and 500mg of HU, that soon became a 1000mg, before being moved onto learning how to inject myself every two days with Interferon. My interferon is doubled during this coming week as my platelets are still too high c. 800.
I am hoping that I might soon be able to convince my specialist that w/ the WHO's new amendments for (PMF and Pre-fibrotic MF determinations), that I might be able to acquire the use of Ruxolitinib, (perhaps on compassioante grounds).
At the present, I am considered Grade 2 level of reticulin for bone scarring and my blood platelets are still too high even though my WBC count is dropping quickly.
I also have osteophyte growth all over my lower vertebrae and a calcification of the Illios(p)osas muscle which is also attached to said vertebrae. Some days, my legs are so weak I can barely walk... it is progressive, and of that I am growing more certain by the day.
Not remembering such basic things, is possibly what I am finding as the most disturbing aspect of my condition (a left over from my TIA last August I am led to believe).
I would love to be in a situation where I could work and make my own way, but it seems given my new condition, those days are numbered. Until this moment, I still have not sought help with the pain I experience through bone aches and joint pain, but that may have to transpire too...?
It is my understanding that if I was able to have the 'Ruxolitinib' I might be able to overcome some of my symptoms, or so I am led to believe, but apparently, I must first become even more ill before I am able to properly qualify under extant policy devices that apply to such determinations in Australia etc...
Nevertheless, I shall endeavour to persevere and take up the challenge in the Australian forum...
Thank you so much again Louise for your compassionate and empathetic feed back. I am most grateful...
Oh gosh, I'm not a haematologist, medic or expert but that seems to me ridiculous when so many MF patients in the UK and US seem to be offered this drug. I have PV but was offered Ruxolitininb because I'm bothered with pruritis and Rux seems to knock it on the head. I refused because I'm happy with HU and prefer to keep Rux as a back up.
Is your haematologist an expert in MPN's ?
I really would look further and seek a second opinion you know, it's worth it.
I did, and ended up decamping to a cancer specific hospital an hour and a half down the road! Best thing I ever did.
I know a brilliant chap ( patient ) who had leukaemia and then MF, felt quite dreadful, was put on a Rux trial and it transformed his life. He lives in the US. If you'd like to email me direct I'll let you have his email address. He operates a superb info site called patient power. Well worth looking at.
Meanwhile, don't give up , pressure your specialist, and look elsewhere for an expert in MPN. There must be one in Sydney somewhere. We have to look after ourselves in this game!
My email address is louisebroughton@btinternet.com
My specialist haematologist is well versed I believe, however, she also made a point in our very first consultation of letting me know that she possesses very strong feminist traits. I am unsure why she felt that was necessary at all, however, I do know that she is spread very thin on the ground with running the Oncology in two hospitals and also lecturing at Western Sydney University.
There are not a great deal of haematologists that specialise in MPNs in Sydney, Australia (well none that I have found as yet). Although, I shall keep looking...
I also am affected badly by pruritus and it just seems to be getting worse, but I really had trouble with the HU, and in a very general sense, feel a little better with Interferon than I did with HU
Happy to exchange emails Lousie and I shall email you shortly as I am just running out the door as we speak.
I am sure that you will be a great advocate for MPNs in Australia. The one good thing about the UK is our NHS system, although as Louise has already commented it is being hit very hard with constant 'cut backs' these last few years. Who knows what the future holds for us here in the UK? I always held the firm belief that 'money doesn't count' in life....but my views have changed because to put it simply for the many people struck down with ill health or misfortune, money does count!
I'm not familiar with the way things are in Australia regarding access to health care but I presume you have to be insured. What happens if you can't afford the insurance due to bad luck in life? Do you get free prescriptions for cancer treatment for instance? Likewise, what happens if you can't work due to ill health? I wish you well Steve and I hope you find some relief from your disabling symptoms soon and keep striving to be that 'voice' for MPNs in Australia.
Mary X
I noted in one of your posts that your roots are in Co Clare....mine are too. Both parents from there.🙂
In Oz, we do have the Pharmaceutical Benefits Scheme (PBS) that I believe must be an Australian equivalent to your NHS?
However, one example of how it does not work some times is like the availability of Pegylated Interferon. Presently, I must inject myself every two (2) days, whereas, w/ Peg' it would be once every four (4) weeks. Although, I am uncertain that it would lessen my Pruritus any?
The rationale behind this is, (as I understand it), is that the government prefers to not have to pay any more for these subsidies than is deemed absolutely necessary.
However, of course, in many countries there are no such schemes extant at all... Therefore, I am most grateful of course...
I do not have any insurance worth speaking of, and now I am almost totally unable to function in a working capacity... Not getting any younger either... (although I do not think of myself as old - 57)
If the 'Ruxolitinib' was an option, perhaps my plight might not seem quite so bleak with the lessening of my constitutional symptoms? Who knows, perhaps I could find a way to become gainfully employed once more?
In any event, this is my focus at the present...
**County Clare (one half of my maternal side), the other half heralds from Somerset, and they originally came from Normandy.
I would love to visit some day, I have heard from Susie already about how extraordinarily beautiful it is there...
Thanks for your thoughts and good wishes Mary,... and the very best to you and yours also.
Hello Steve, There is a Doctor Ritchie in Mebourne who is also , I believe, head of the Bone Marrow Transport team there. It is a long way from Sydney but perhaps you can e-mail him for advice, I know he has a very strong interest in all MPDs and is very kind, perhaps, he knows of a support group there which may be able to give you more information.Bye Gill
You are right, Melbourne is quite a long way from Sydney, but thank you, and I shall keep your Dr Ritchie's name on hand.
I have just commenced trying to build some sort of list of Haematology specialists for in and around Sydney. I will commence calling them from tomorrow afternoon and see how that works for me as my first step.
However, I will try once more to have my current specialist try to understand me a little better, and ask again about trying to get me onto Ruxolitinib' under compassionate grounds etc... wish me luck...
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