Refuseniks-2
I recently saw another new patient, with rapidly-evolving severe MS, for a second opinion who was not offered alemtuzumab. Is this acceptable?
Last year I did a blog post called refuseniks about a colleague who refused to offer a particular patient the full gamut of MS treatment options. I recently saw another new patient, with rapidly-evolving severe MS, for a second opinion who was not offered alemtuzumab. I wonder how many other people with MS out there have had a similar experience? Is this acceptable?
Case study
She is only 24 years of age; a graduate trainee in a marketing company. She has a promising future ahead of her. She lives in London and has a long term partner; they met at University. She knows he is the one for her and they are planning to get engaged in the next 1 to 2 years. Like most graduate trainees they find London expensive and share a house with four other people. She found lockdown very stressful not because she has had to work from home with four other people, but because she was diagnosed with MS in February last year.
Despite starting DMF (Tecfidera) in June 2020, she had a very disabling relapse over the Christmas period with lower limb weakness and new-onset bladder symptoms. She has also noted a fine tremor in her right hand. Her latest MRI showed several new lesions and a large lesion in her thoracic spinal cord. Her consultant neurologist has offered her ocrelizumab. However, after doing her own online research she has asked to be treated with alemtuzumab. Her consultant has said no and pointed out their centre has virtually stopped using alemtuzumab because as a treatment it is too risky and there are much safer options.
Out of desperation, this patient went to see a colleague of mine in private who said, of course, she can have alemtuzumab and she has now been referred to our centre for treatment. We are now in the process of doing the baseline blood and will hopefully get this patient treated with her first course of alemtuzumab in the next few weeks.
Prof G’s opinion
Tragically this poor woman has lost time. What would happen if in the interim she has a further catastrophic spinal cord relapse that leaves her paralysed? Who would be responsible?
I am beginning to refer to my colleagues who are not prepared to offer and use alemtuzumab and HSCT as the ‘refuseniks’. What they don’t realise is that they are putting themselves and their institutions at risk from a potential legal challenge. How come? When NICE (National Institute of Health and Care Excellence) was created it was done so via an act of parliament. NICE’s primary aim was to get rid of the curse of postcode prescribing and variable access to treatments. Therefore if therapy has been NICE approved the NHS has a legal obligation to offer people a specific treatment if they are eligible for that treatment. Therefore, in the case above her previous consultant is breaking the law and putting not only him or herself at risk of a legal challenge, but the relevant NHS Trust as well.
The real question that needs to be asked is why are neurologists still so paternalistic? Not allowing patients to choose their own treatment is against one of the central tenets of modern medicine. In reality, it is not the neurologist or the institution where the neurologist works who are taking a risk when someone is treated with alemtuzumab, it is the patient who is taking the risk. Don’t they understand this?
It is getting to the point in time when we are going to have to start naming and shaming these refusenik neurologists. Hopefully, when the national audit figures from blueteq, NHS England’s database of high-cost drugs, is published those centres who are not prescribing alemtuzumab or offering referral for HSCT will be exposed. I am of the opinion that if you are not using alemtuzumab or HSCT in a proportion of your patients with highly active MS then you and your centre are not managing MS the way it should be managed in 2022.
I am sure not all of my neurology colleagues will agree with me; do you?
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General Disclaimer: Please note that the opinions expressed here are those of Professor Giovannoni and do not necessarily reflect the positions of Barts and The London School of Medicine and Dentistry nor Barts Health NHS Trust. The advice is intended as general advice and should not be interpreted as being personal clinical advice. If you have problems please tell your own healthcare professional who will be able to help you.
The problem is that many neurologists believe that they know best! After having Ramsay Hunt ( a side effect of shingles in the cranial nerves) I saw a Professor at the National, who was fantastic. He suggested that the DMT that I was taking may have been the cause and that I should discuss other alternatives with my NHS neurologist. Despite having this all written down in a letter, my neurologist dismissed the Prof’s suggestion. He made little of my facial paralysis, even though I told him that it was causing me more mental anguish than the ms! Needless to say, I stopped going to see him and asked to be referred elsewhere and subsequently got a very snitty letter saying he would no longer be seeing me. This guy would rather talk about himself than really listen - Unfortunately there are probably others just like him.
Sorry for the rant everyone, but I feel better now 😀
Thank you for standing up for us!