Last reply 3 years ago
Southampton Hospital and Lemtrada

Apologies in advance …….

*open rant*

I guess it depends where you are in the UK as to whether it’s the first prescription for Lemtrada. Apparently Southampton Hospital are not currently set up to provide Lemtrada because ‘they don’t have the training to handle the administer the drug’

…. fine so send me oncology where they’ve been administering it in much higher doses for years then 🙁

Some patients have been waiting for so long that they now have to be re-screened because of the time that’s passed

In the interim they’re doing the screening for both Lemtrada and Tysibri because she want’s me on that while they get their lives in order with the Lemtrada treatment because it’s better to be on something than nothing

***End Rant***

and takes a deep breath and feels lots better 🙂

xx

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stumbler
3 years ago

@tracyd , we have to wait so long for NICE to approve treatments on the NHS. So, you will find the following somewhat annoying:-

https://www.nice.org.uk/guidance/ta312

Southampton seem to be running about 6 months late!


Anonymous
3 years ago

As Stumber notes it really should be implemented by now.

A few suggestions:
Make a formal complaint direct to the Trust and be sure to point out NICE guidelines showing this drug should be available. Request clear time lines for action / implementation.
Write to NICE and the CRG.
Contact your local health watch.
Contact charities and see if they can encourage things along.
Contact your MP.


Anonymous
3 years ago

Nice technology appraisal guidance [TA312] Published date: May 2014

5 Implementation
5.1 Section 7(6) of the National Institute for Health and Care Excellence (Constitution and Functions) and the Health and Social Care Information Centre (Functions) Regulations 2013 requires clinical commissioning groups, NHS England and, with respect to their public health functions, local authorities to comply with the recommendations in this appraisal within 3 months of its date of publication

Quoted from here

https://www.nice.org.uk/guidance/ta312/chapter/5-implementation


tracyd
3 years ago

Thanks both will make some enquiries and see wht shoes loose


hannah015
3 years ago

@tracyd

I’m having exactly the same problem, I complained too hospital after months of waiting and endless calls with no response just they are waiting for meeting, then I contacted nice who said the hospitals have a legal requirement to provide this treatment, so I contacted my local mp and he is fighting for me, got my app tomorrow with neurologist so fingers crossed. Unfortunately we have to fight for it. Good luck x


tracyd
3 years ago

@hannah015 that’s dreadful, best of luck keep me up TLD ate with how it goes xx


cameron
3 years ago

But I expect they’re fully up to date with diversity, cultural awareness and health and safety….. ho ho. Either that or there is incompetence at the top. Terrible.


hannah015
3 years ago

@tracyd

Hey, had my appointment, which was a waste of time, they have another meeting in March regarding Lemtrada but looks like it could be ages before it’s implemented. Despite the NICE guild lines saying it should be given within 3 months. It seems even though this treatment can vastly improve peoples lives and save the nhs a lot of money in long run nothings been done. Therefore I am starting a petition with number 10. I will post link on here when I have done it if you can sign it

Thanks xx


us-emma
3 years ago

I already posted on this, but we have a saying in the US- vote with your feet.

Meaning move to a state with favorable conditions or beliefs as you. This can apply to many situations but I can see it as the easiest solution here.

Do you have a friend or relative in a Lem approved area? Could you “move” in with them and reapply?

Maybe is is not ethical or legal where you live but in our huge country it is quite common to see populations shifts towards areas for a sundry of reasons- Ex immigration to Texas is on a huge uptick as 30% of all jobs created in the past 10 years (across all 50 states) has been in Texas- prime example of people moving places that supply what they need.

I think you and @tracyd have been served a huge injustice- don’t you pay the same taxes as your Lem eligible fellow citizens.

I can tell you from person experience it cost me 130k US to get Lem but I will never look back for all the personal austerity this has brought our family- to have regained function & my life. Surely a cross country move would be worth similar strife.

So many well wishes my heart aches for you and @tracyd


us-emma
3 years ago

@hannah015 & @tracyd,

Had another though- would getting Genzyme (the manufacturer of Lem) involved in your fight- with perhaps powerful websites for the petitions be of help?

That sure works in the states, the have a lot so resources and are always looking for motivated patients to help that with less ligation.

Maybe your local paper’s investigative reporter might write a story about the unfairness of the postal code lottery.

I am sure there are so many,other avenues but I can only come up with these few at the moment.

Also,@hannah015, I cited your name wrong under “@brownk) “officially diagnosed” I hope that doesn’t prevent you from seeing it.

Take care,
Emma


tracyd
3 years ago

AARRGGHHH

It’s taken me since last Friday to calm down enough to post about this, but here goes ….

My neurologist when I saw her at the start of Feb agreed to putting forward the Lemtrada screening request (YAY) along with a Tysibri one in case it took a while for Lemtrada to be available. She also said that now having relapsed twice in quick succession that if it happened again she wanted me admitted as an acute emergency.

The weekend before last it became obvious I was having my 3rd relapse since the end of November as I’m now losing the feeling in my right arm as well 🙁

I saw my doctor on Monday to ask what was going on with the screening as I’d heard nothing and pretty much spent 10 minutes talking with tears running down my face while he tried to get hold of my Neurologist and the MS Nurse and said he’d get back to me later in the day. I got home to find 3 letters had arrived. The first was the screening request to Southampton, the second was a summary of the consultation and the third was a letter saying if I relapsed again then I needed to be admitted as an acute emergency for MRI and possibly IV steroids if significant inflammation was present

Naturally the copies had not arrived at the doctors so I scanned them in and sent them over Tuesday morning with an assurance Dr Fisher would call me later …. no call came so at 5pm I asked to be added to his call list for Wednesday …. again no call 🙁 Thursday I phoned first thing asking would he call today to be told it’s his day off … I broke down.

Within an hour the MS nurse is on the phone, she’s gone to another Neurologist (mine was on holiday) she agreed I needed the MRI and probably IV steroids and was trying to get me a bed at Southampton. At 16:00 I get the call – There’s a bed get down there for 19:00 so I head down there feeling really positive, they’re going to do ‘something’ at last, they want blood, blood pressure, check I’m not diabetic and tell me to sleep.

The next day I get to meet the Neurologist and after the most extensive ‘M.O.T.’ I’ve ever had am told that it’s not a bad relapse and IV steroids are going to do nothing for me – I ask is that going to be confirmed with the MRI and the response was ‘if they can get round to you’ … hang on WTF ??? In the meantime he can prescribe some oral steroids … queue the natural question ‘if IV Steroids won’t do anything what will they do?’ …. silence then the answer ‘probably nothing’ … well WHY ???

Through the course of the day I check up on the progress of the calls to the MRI unit and am told they’re trying but nobody is picking up the phones ….

At 17:30 they tell me I’m discharged …. someone will send me an appointment for an MRI (but they don’t know who or when) ‘you can go’

Then I’m handed the discharge notes …. I see RED when I read this direct quote from the document …..

‘This was felt to be a non disabling relapse. Oral Steroids were offered but Tracy was not keen. She was therefore discharged without treatment’

How very bloody dare you …. he had the letters saying that it was the cumulative effects of multiple relapses he was supposed to be investigating, not that it was just the latest loosing of sensation in my right arm. He’d completely ignored that and the fact that he’d said steroids would do nothing (because he knew that without an MRI to assess whether there was inflammation …. he’s a genius … knight that man – we don’t need expensive MRI’s anymore the can do it without them)

I came home at 19:00 Friday night completely devastated and furiously angry, I feel like if I’m not in pain then they don’t understand what I’m making a fuss about. I should just shut up and go away, be grateful it doesn’t hurt and let them treat the people who are in pain or properly ill’ …. worthless and inconvenient.

I’m waiting on the MS nurse again, hoping my Neurologist is back from holiday soon and I will so be playing the BUPA card again to get someone to look at what the cumulative effects of 3 relapses with sensory loss since November last year have had on the lesions in my brain and spine. Maybe then treatment of some kind will be offered 🙁


graham100
3 years ago

Oh dear yes. I know how you feel. They don’t seem to give atos. As long as your on there books it pays the wages. And covers the new BMW every couple of years. But when you need help,, you become a pain??


cameron
3 years ago

It was my experience at the hands of their neurology dept that led my doctor to refer me to the National Hospital, Queen Square.


tracyd
3 years ago

@cameron thanks I will bear that in mind xx

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