Last reply 1 year ago
Lemtrada not available in my area?

Hi,

I’ve been researching Lemtrada – currently on Tecfidera, but I have had a fairly nasty relapse since taking it, and don’t want to wait and see if the Tecfidera kicks in at some point! I’ve only ever taken Tecfidera. Diagnosed in 2015 after a major relapse and second relapse 13 months later. My MRIs showed old lesions hence my diagnosis after one (known) relapse.

Lemtrada isn’t offered in my local Trust. I saw a general neurologist last December and am having another MRI and follow-up in March. I shall be wanting to discuss changing to Lemtrada but I don’t see how the general neurologist or the MS Neurologist could discuss this with me as it isn’t offered as a treatment. Can I get a referral to another MS neurologist at a Trust where it is offered?

I’m pretty sure that I have a handle on the pros and cons, and that I meet the criteria for taking Lemtrada, but if I have no entitlement to be referred to a hospital that offers Lemtrada then I don’t know what to do next.

Any help/advice gratefully received!

Carrot

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sandwich
1 year ago

Lemtrada is funded through NHS England.

https://www.nice.org.uk/guidance/ta312
The guidance above states: “Commissioners and/or providers have a responsibility to provide the funding required to enable the guidance to be applied when individual health professionals and their patients wish to use it, in accordance with the NHS Constitution. They should do so in light of their duties to have due regard to the need to eliminate unlawful discrimination, to advance equality of opportunity and to reduce health inequalities.
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.

5.2 When NICE recommends a treatment ‘as an option’, the NHS must make sure it is available within the period set out in the paragraph above. This means that, if a patient has active relapsing–remitting multiple sclerosis and the doctor responsible for their care thinks that alemtuzumab is the right treatment, it should be available for use, in line with NICE’s recommendations”

If for whatever reason your trust cannot offer it I would ask to be referred elsewhere. If eligible it should not be a barrier.


hels99
1 year ago

You do have a choice where you have treatment. Suggest you find an NHS trust that offers it and ask your GP to refer you there.


carrot
1 year ago

Thanks both for your replies. Phew! Just need to get going with the eligibility. Found out today my lymphocytes are below normal for first time since starting Tec which is not good. If they stay low for too long I’ll have to stop Tec anyway. Oh isn’t MS fun…….


lilbird
1 year ago

Hi there @carrot

Lemtrada was my (1st) treatment of choice & isn’t offered by my local trust either. After discussion with my MS team they referred me to a neurologist at another trust, after a consultation there they agreed they would be happy to offer me treatment & I completed round one there in March last year. All went well & I’m currently preparing for round two. Hopefully you will find it just as straightforward ☺


carrot
1 year ago

Thanks Lilbird, good to know it’s happened for you, and good for me to quote if I encounter any difficulties! Hoping there’s a trust fairly close to me that offers it…….

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