Last reply 3 years ago
Letter from local mp

Hi all

Today I had a letter my local mp to say he has written to QE hospital In birmingham to find out what the delay is with Lemtrada treatment being started. I would recommend if you are waiting to do the same. He has been very quick to get back to me and hopefully it will help to speed up the process

Have a fab Christmas all and keep smiling

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stumbler
3 years ago

@hannah015 , I wonder if he would have been so quick if the election wasn’t coming up soon! 😕

PS. Nice picture and have a great Xmas. 😀


hannah015
3 years ago

Lol @stumbler that’s why I emailed him now. Will vote for him now 🙂

Aww thank you, finally got my whole face in photo 🙂 have a fab Christmas 🙂


Anonymous
3 years ago

That’s interesting as I very recently asked my neuro about Lemtrada (different trust). They are not using it yet either. He did say the QE had started to use it though.


hannah015
3 years ago

@sandwich, they were supposed to be by now. My neurologist confirmed I would be having it back in august at the QE but ever since I can never get hold of him, jus secretary called last month to say they were still waiting to set it up. I have since contacted complaints at the hospital, my local mp, my gp and the NICE team. I’m hoping that it will help it get sorted quicker for whatever reason the delay is. There must be a lot of people waiting for this treatment. Just wish they could tell me what the problem actually is cause my ms nurse thinks it’s digraceful

Have a fab Christmas


Anonymous
3 years ago

Keep us posted. When you say the NICE team do you mean the Neurosciences CRG? They put together the NHS England commissioning paper for DMD’s.

Merry Christmas to you too!


hannah015
3 years ago

Oooh did I get it wrong, no wonder they haven’t got back to me haha. I saw that NICE approved Lemtrada and it was agreed to be used within 3 months of your neurologist confirming you are having it @sandwich


Anonymous
3 years ago

Just another angle you could try maybe! It sounds like you’ve done everything you can to raise the issue. Like you said, just knowing what the problem is would be help :(. Good luck with. Tenacity is a good quality to have.


hannah015
3 years ago

Yeah will do thank you @sandwich. That’s it I just want to be informed. I’m a determined individual lol.

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