hannah015 20/04/15
Last reply 3 years ago
Lemtrada

Hey all

So as most of you know I have been waiting over a year for Lemtrada that I was promised by QE in Birmingham. I keep being told by my neurologist that my MRI and previous relapse show I’m on borrowed time of a really bad relapse, at least that’s what he believes. So far I have proved him wrong on all counts, but obviously I need treatment soon. I feel waiting a year is ridiculous now. He called. Friday and said they won’t be ready for ages so now he is referring me. I asked ages ago, contacted many people, including ms society, my local mp, various politicians and NICE to be told I’m being referred. It’s terrible, I only hope no one else is going through this mess around. It wouldn’t be so bad if my dr didn’t say he doesn’t think I have such a good chance of recovering next time due to extent of last relapse. I think I’m doing incredibly well considering yet he just puts a downer on everything. Makes me want to work in ms cause I don’t feel like any of the professionals i have seen push to help, I’m just glad I have taken things into my own hands and changed diet, researched supplements and exercise to keep myself strong. Sorry for rant it’s just getting a dad ridiculous xx

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stumbler
3 years ago

I feel your frustration @hannah015 . We seem to pay all the top managers salaries that we can only dream about and they preside over fiascos like this!

It’s unbelievable.


hannah015
3 years ago

It’s so true @stumbler I don’t understand why he couldn’t of referred me a year ago rather than risk my health like he has, although I know it’s probably not his fault more the top bosses but even so it’s ridiculous. I have just been looking at changing my career to work in the medical profession in some way. It would be more interesting than working in a bank 🙂 and I feel like I want to help others with ms. My ms nurse when I was in hospital wAs very negative and didn’t push or help motivate me, the physios just said I would need a wheelchair most of the time and dr just gives negative info. I’m glad I pushed myself as hard as I did but I think people just diagnosed need to be told the positives. I mean we all need to hear positives not negatives, guys with ms that run marathons etc. They are all doom and gloom when the reality of ms is we can still be what we want to be just maybe have to work harder to get it. I just need to find the right job now oh and get my treatment lol. Sorry for my rant yet again 🙂 hope your well xx


stumbler
3 years ago

@hannah015 , it’s all about budgets. If you get referred to another Trust, then money has to follow you from your original Trust. It seems it may be cheaper to adopt a negative approach, suggesting there’s nothing that can help us.

We have to be Masters of our own Destiny. We have to ask and then make a case to which they can’t say no.

It shouldn’t be like this, but £ signs seem to drive every decision. You’ve already made the financial case for Lemtrada, but, too many bosses are tied up in short-termism. They need to ensure they meet their Budget target this year, because that means a bigger bonus – now where does a long term outlook and patient care fit in!

It’s the way it is. Anyone who shows a bit of enthusiasm, or positivity, is worn down to toe the party line.

Just don’t let them wear you down.

And, what’s wrong with Banks? I worked in one for years, but that was when they were respectable places. My claim to fame is that I had one of the first twelve Chip and PIN cards that worked, in Europe! 😉


hannah015
3 years ago

@stumbler it is all very ridiculous seen as i found out from my neurologist that tysabri which he can set up costs £120k a year Lemtrada is £54k. As we have seen on here and from other research I have done, Lemtrada has had amazing results. They shouldn’t offer it, if they can’t do it or should refer you right away to a hospital that do offer it. It’s all about politics. So hard to know who to vote for in order to improve things within the nhs. Awful to think so many people suffer due to lack of clever people running it. I feel like I want to do more but where to start lol. Don’t worry they won’t wear me down I’m far too stubborn and positive 🙂

Lol I work at lloyds head office and I can say it’s getting worse in banks and I feel it’s not a job I want to do anymore, I want to do a job that’s helping people now. Oooh get you, can I have your autograph 😉

Hope your well x


us-emma
3 years ago

Following…


tracyd
3 years ago

@hannah015

Just been exchanging messages in the lemtrada UK And Ireland Facebook group with a lady in utoxetter. She starts treatment next week at the North Staffordshire University Hospital in Stoke. Just a short run up up the M6 for you ….. Tell them that you want to be enter thre asap 🙂 xx


tracyd
3 years ago

The lady being treated on Monday will be their third patient so they’re newly set up xx


hannah015
3 years ago

@tracyd that’s good to know, my neurologist has agreed to refer me to stoke as QE is nowhere near ready. Fingers crossed I get app soon. Hope your feeling good, not long till you start Lemtrada, exciting times 🙂 I booked into start oxygen therapy next week thanks to your blog 🙂 xxx


Anonymous
3 years ago

So glad you are being referred @hannah015. I think its appalling you’ve been waiting so long. Lets hope you stay well until your treatment.


hannah015
3 years ago

Thanks @sandwich that’s really sweet of you xx I have been feeling awful the last few days, achey and so fatigued, today I thought enough so did 10 press ups and some planks and it’s really helped, was hard at time but has given me a boost, fingers crossed I can do more exercise tomorrow 🙂 xx


tracyd
3 years ago

@hannah015 Great news that you’re going to be referred to Stoke …. make sure they know it’s an urgent referral based on QE’s complete and utter failure to provide care 🙁

The Oxygen is working wonders on me, had my 2nd 33ft on Saturday and feeling great, clear headed less achy, balance is ‘better’ which means I wobble but don’t fall over like a drunk 🙂

The Physio has me doing lots of balance exercises and core Pilates ones which worst case will help shape up my slightly squidgy abs 🙂


emzi
3 years ago

Very happy for you 🙂 x


hannah015
3 years ago

Thanks @tracyd yeah I’m going to have to chase tomorrow as it seems I may be having a relapse, I feel like QE have majorly let me down so I made a complaint, I don’t want anyone else being made to wait a year to then be told they are going elsewhere. Pleased I’m getting to go to stoke though.

That’s brill, so glad it’s helping you, fingers crossed I get same benefits.

Lol that’s it, it will help in some way 🙂 xx


hannah015
3 years ago

Thanks @emzi xx

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