A story about how to diagnose and manage MS proactively in comparison to what happens in routine NHS practice.
Under the MS Academy umbrella, my colleagues and I launched an initiative last year to address the issue of variance in the provision of MS services in the NHS. We held our first meeting on this topic in November and there was a broad consensus that variance needs to be tackled. A lot of you may be asking what do you mean by variance in the NHS? The best way to describe it to you is by using a story of two siblings with MS, you may recognise yourself somewhere in the storyline, which one is you?
You and your sibling have MS, which is not uncommon.
Your sister presents with typical optic neuritis and is seen in an eye hospital, in a large UK city, and is diagnosed in A&E. An urgent MRI is done and shows typical lesions compatible with demyelination, but no enhancing lesions. Your sister is referred to a specialist MS unit affiliated with the eye hospital and is seen a week later in their rapid access clinic by an MSologist (a neurologist who specialises in MS).
The MSologist agrees with the diagnosis of optic neuritis but explains that she need to demonstrate dissemination in time to make a diagnosis of MS. The neurologist schedules a lumbar puncture, which is done the same afternoon in the day case unit, and arranges to see your sister in clinic two weeks later. At her clinic appointment two weeks later she is told her CSF analysis was postive, which confirms the diagnosis of MS. The rest of the consultation is spent discussing MS, its prognosis and treatment. Your sister leaves the consultation having had all five disease-modifying therapies (DMTs) that she was eligible for discussed, but with a shortlist of two agents (DMF and alemtuzumab) to consider further. Baseline blood tests are performed on the same day and an appointment is scheduled for the following week with the MS clinical nurse specialist to discuss the final choice of DMT.
During the week your sister reads all the literature she had been provided with and watches and reads some key online resources including ‘Brain Health: time matters’. By the time of her appointment with the MS clinical nurse specialist, your sister has already made up her mind; she wants to be treated with a highly effective agent and has decided on alemtuzumab. The consultation with the nurse was relatively quick and covered the logistics of alemtuzumab treatment and what needed to be done to derisk the treatment as much as possible. The good news was that all her baseline blood tests were normal and her infection screen was negative.
Your sister is provided with a Listeria prevention pack and a prescription of cotrimoxazole, an antibiotic, to start a week before alemtuzumab treatment starts. During the consultation, the nurse completes the online virtual MDT proforma and sends it via the internal email system. Remarkably, one of the other MSologists and specialist neuroscience pharmacist green-light the decision before the consultation is finished. Your sister is then offered three potential starting dates and instructed to email the team when the relevant time off work could be arranged to have the 5-days of alemtuzumab infusions. After speaking to her employers your sister decides to be treated 3 weeks later.
It has been 4 years since your sister completed her alemtuzumab treatment and is now completely well. Her EDSS is 1.0 because of some residual damage to the optic nerve, but her vision is normal. She stills has monthly blood and urine tests done as part of the post-alemtuzumab monitoring. She does not find this a hassle as the phlebotomist comes to her home to take the samples.
Your sister has recently been promoted to European Marketing manager for her company and recently got engaged to her long-term partner.
Now compare this to your experience living outside a major centre. Your initial MS symptoms are an episode of severe vertigo with vomiting and unsteadiness of gait. You see your GP within a few days and he diagnoses you as having acute labyrinthitis and prescribes an anti-emetic (prochlorperazine). Although the medication helped suppress the vomiting it takes you about 2 months for your gait to get back to being relatively normal. However, after the episode of vertigo, you notice that your balance is not as good as it was before the attack; you can’t put on your trousers standing on one leg and you have problems walking in the dark.
You are then well for about 10 months when you develop pain behind the right eye and some mild visual blurring. You manage to get an appointment to see your GP the following week. The GP examines you but can’t find any abnormalities. However, being unsure he decides to refer you to see an ophthalmologist with an instruction to cancel the appointment if your symptoms resolve. By the time the appointment for the eye clinic comes around in 12 weeks time your vision has recovered so you cancel the appointment.
Over the next three years, you notice increasing fatigue and difficulty coping at work. At your last annual performance review, you are given a formal warning after making several mistakes in a legal document that had a major effect on a relationship with an important client. You get depressed and anxious and start to worry about being able to hold down your job. You have also started waking up early and ruminating about issues at work. You see your GP who diagnoses you as being depressed, prescribes an antidepressant and asks you to come back and see him in two months time.
As a result of your depression, your boyfriend dumps you saying you are not the same person you were when you started dating. Not having a partner makes you more depressed and you stop socialising with friends altogether.
Before you get back to the GP you are admitted to your local hospital with increasing weakness in your legs, loss of feeling in your lower body and inability to empty your bladder. By the time the visiting consultant neurologist comes to assess you three days after admission the general physician informs you that the MRI of your spine is consistent with a diagnosis of transverse myelitis. The visiting neurologist questions you about your past symptoms and examines you. She confirms that you have transverse myelitis and raises the possibility that this may be multiple sclerosis. She asks the medical team to arrange an MRI of the brain and to do a lumbar puncture. She recommends you are treated with intravenous steroids and to ask the rehab team to review you. She says he would like to see you in outpatients with the results of the MRI and spinal fluid analysis.
The steroids seem to help in that the urinary catheter that was inserted when you were admitted could be removed and you start to regain sensation in your legs. However, you take another 2 months to get back on your feet using a walker. You only get to see the neurologist two months after leaving the rehab unit. In the clinic, the neurologist is very rushed and explains that your MRI of the brain and spinal fluid analysis confirmed her original suspicions and that you do have multiple sclerosis.
Remarkably, this diagnostic appointment happens just after your sister is diagnosed with MS and has been offered to be treated with alemtuzumab. You inform the neurologist that your sister has just been diagnosed with MS and ask the neurologist if you could also be treated with alemtuzumab. She informs you that as she is not an MS expert and that as the hospital is not an MS treatment centre you would have to be referred to the main teaching hospital, which a deligated treatment centre, for a decision about treatment.
The appointment with the MS expert, at the teaching hospital, takes a further 12 weeks. By the time to see the neurologist your walking has improved further and you are now only using a walking stick. The neurologist agrees with you that you need to be treated, but does not think you should be started on alemtuzumab because of the associated risks of this therapy and offers you a choice between two oral first-line treatments (dimethyl fumarate or teriflunomide). He suggests keeping alemtuzumab in reserve in case you fail treatment on one of the oral treatments.
By the time your baseline blood tests are done and get to see the MS clinical nurse specialist, it takes another 3 months to be started on dimethyl fumarate. Apart from mild initial dyspepsia you find dimethyl fumarate easy to take. The medication seems to work well. You have no relapses and you are told that your annual MRI scans are stable. Unfortunately, despite being on the treatment you have had to stop work because of persistent fatigue and cognitive problems. Your depression gets worse.
After about 3 years on dimethyl fumarate, you start to notice your right leg getting weaker with intermittent right foot drop when you get tired. You frequently scuff your toes and have tripped several times; fortunately, you have no falls. Your walking distance is now becoming increasingly restricted and you can’t manage much more than about 100m on good days. You have major problems with urinary frequency and frequency incontinence and you start using continence pads.
When you see your MSologist for your annual appointment you tell him what is happening to you and ask if you can now be treated with alemtuzumab. He umms and ahs and finally tells you that because you now have secondary progressive MS you can’t be treated with alemtuzumab. He actually recommends that you stop taking dimethyl fumarate as it appears not to be working.
When you and your sister get together at a family wedding and you see her dancing normally you can’t help yourself from imagining what your life would be like if only you had been diagnosed early and managed and treated in the same way she had.
These parallel stories illustrate the extremes in this country; between what should be achieved and what frequently happens when we don’t diagnose MS early and manage it proactively.
The big question is how to tackle the problems highlighted above. Do you try and change MS services from within the existing NHS model or do we think outside the box and try to disrupt the current model and change the way we practice neurology?
Any suggestions would be much appreciated.