Does MS-Selfie have a future?
Am I making the lives of my colleagues, including general practitioners (GPs), more difficult and creating unrealistic expectations of what can be realistically offered to people with MS?
I have just received a rather blunt and scathing email from a colleague, criticising me for making the lives of my colleagues, including general practitioners (GPs), more difficult and for creating unrealistic expectations of what can be realistically offered to people with MS (pwMS) on the NHS. To cut to the chase, self-monitoring and self-management advice for people with MS (pwMS) is causing a disconnect with what can realistically be delivered by the NHS, which is already under pressure. In short, what is outlined in the ‘MS Brain Health: Time Matters’ policy document and my recent article in the British Journal of Neuroscience Nursing, ‘MS-Selfie: a self-management portal to help people with multiple sclerosis,’ is causing problems for MS services that are simply trying to survive.
Q: “Should we put our heads in the sand and pretend we are managing MS properly?”
Independent of this, there are several articles in this week’s British Medical Journal (BMJ) discussing similar themes. The first article states that the emerging speciality of lifestyle medicine should be left to GPs to handle as part of routine general practice; it does not require a new speciality. A large part of what I am trying to do with MS-Selfie is Lifestyle Neurology. Should I drop this component and leave it to GPs?
The second group of articles advises people from buying into self-help screening tools that only increase the workload of GPs when a screening test picks up an abnormality. Apparently, an increasing number of appointments are being taken up by people receiving results from consumer companies that sell direct-to-consumer screening services, such as diabetes and cholesterol screening tests.
Q: “I wonder if home urine dipstick monitoring for early detection of UTIs would be classified as direct-to-consumer self-tests?”
Coombes et al. How safe are health tests on UK supermarket shelves? BMJ 2025;390:r1503.
Jessica Watson & Margaret McCartney. The pitfalls of diagnostic self-tests. BMJ 2025;390:r1476.
All I know is that I am trying to promote self-management strategies to improve MS outcomes. I am not doing it to increase the workload of the NHS; in fact, I am doing it to try to lessen the workload of the NHS.
I am becoming increasingly concerned that the pwMS living in the UK are falling behind other high-income countries when it comes to screening and managing comorbidities, in particular, hypertension. We know that pwMS who have a vascular comorbidity do much worse than those without comorbidities. In a Canadian study, people with multiple sclerosis (pwMS) who had a comorbidity required a walking aid approximately 6 years earlier than those without a comorbidity (12 years versus 18 years). Therefore, under the marginal gains approach to managing MS, which I promote, we are doing people with MS (pwMS) a disservice if we don’t screen for and manage comorbidities more aggressively.
The problem in the UK is that screening for hypertension is not routinely performed as it is part of the NHS Health Check. The NHS Health Check is a free check-up of your cardiovascular health, designed to determine whether you're at a higher risk of developing specific health problems, including heart disease, diabetes, kidney disease, and stroke. In addition, if you are over 65, you'll also be told about symptoms of dementia and should be given details of local services that help with dementia. The NHS health check is for people who are aged 40 to 74 who do not have any of the following pre-existing conditions:
heart disease
chronic kidney disease
diabetes
high blood pressure (hypertension)
atrial fibrillation
transient ischaemic attack
inherited high cholesterol (familial hypercholesterolemia)
heart failure
peripheral arterial disease
stroke
currently being prescribed medicines such as statins to lower cholesterol
previous checks have found that you have a 20% or higher risk of getting cardiovascular disease over the next 10 years.
Please note that having MS is not on this list, so it does not disqualify you from this programme. Saying this, it is my experience that many of my patients with MS over the age of 40 fail to get called to attend a NHS Health Check. For people with one of these conditions listed above, you should have regular check-ups to manage these disorders.
From the age of 40, you should have an NHS Health Check every 5 years. For many, this does not happen. For example, I was called up for a health check when I turned 50 and have not had a follow-up appointment since then. I am sure GP practices vary across the country, but some are so busy fighting fires they don’t have the time for screening and practising lifestyle medicine. This is why you have to advocate for yourself.
Q: “How many of you who live in the UK have been called up for your regular NHS Health Check? If you live in other countries, do you have a similar screening service, and have you attended?”
If you are eligible but have not been invited or attended for an NHS Health Check, I recommend contacting your GP. Please note that they are commissioned, i.e., paid with taxpayers' money, to deliver this service.
What happens at an NHS Health Check?
Your GP usually does not do the Health Check themselves, but delegates it to a pharmacist, a nurse or a healthcare assistant. The check takes about 20 to 30 minutes and includes:
Measuring your height and weight
Measuring your waist
A blood pressure measurement
A cholesterol test, and possibly a blood sugar level test
Often, these blood tests are done before the NHS Health Check. You will also be asked some questions about your health, including:
Whether any of your close relatives have had any medical conditions
If you smoke, and how much
If you drink alcohol, and how much
How much physical activity you do
You'll usually be told your NHS Health Check results during the appointment or soon afterwards. You'll be given your cardiovascular risk score, which indicates your likelihood of developing a heart or circulation problem, such as heart disease, stroke, type 2 diabetes, or kidney disease, over the next 10 years. The HCP may describe this risk score as low, moderate or high. In the UK, we use the QRISK3 score. However, in other countries, different risk calculators are used; for example, European guidelines recommend the Systematic Coronary Risk Evaluation 2 (SCORE2) and SCORE2-Older Persons (SCORE2-OP) tools. In the USA, the 2025 ACC/AHA guideline includes the new PREVENT (Predicting Risk of Cardiovascular Disease Events) calculator. This is a significant evolution for two reasons. PREVENT incorporates measures of kidney function (eGFR) directly into the risk calculation and is the first major risk calculator to formally include a measure of social determinants of health, such as the Social Deprivation Index based on a patient's zip code. The Canadian guidelines recommend the use of a validated risk calculator such as the Framingham Risk Score (FRS) or similar tools to assess 10-year global cardiovascular risk.
Your NHS Health Check results will also be broken down into:
Your body mass index (BMI) score
Your blood pressure
Your cholesterol levels
Your alcohol use score
Your physical activity assessment result
Your diabetes risk assessment
At the end of your NHS Health Check, you'll have the chance to discuss your results and how to improve your scores, including where you can get support. This typically includes talking about how to:
Improve your diet
Increase the amount of exercise you do
Lose weight
Stop smoking
Reduce the amount of salt in your diet
Reduce your alcohol intake
Reduce your cholesterol
You may be referred to local services, such as smoking cessation and physical activity services, to help you make any necessary changes.
I am a little bit pissed off by being told I am generating excess work for the NHS or raising expectations for pwMS above what can be delivered by the NHS in its current state. When I did a Newsletter on this subject earlier this year, entitled ‘Do you know your QRISK3 score?’ (15-April-2025) and included a survey, a third of you had not had a health check, and nearly half of you did not know your QRISK3 score. So, despite criticisms that MS-Selfie increases the workload of the NHS, it appears that the NHS is not effectively managing its own commissioned workload.
Many of you will have an opinion about the issues raised in this newsletter. If this colleague is complaining about MS-Selfie, how will he deal with the deluge of queries that Chat-GPT, Gemini, Claude, Grok, and other AI agents are likely to generate in the future? One of the primary uses of large language model AI chatbots is for health-related questions. I am sure pwMS will not want to ignore medical issues highlighted by an AI query.
Have any of you had pushback from your HCP when you ask questions about your care based on what you have read on MS-Selfie?
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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 Queen Mary University of London or Barts Health NHS Trust. The advice is intended as general and should not be interpreted as personal clinical advice. If you have problems, please tell your healthcare professional, who will be able to help you.
Email: "I wanted to let you know how much I appreciate the work you’re doing. MS-Selfie has helped me feel more informed and confident in managing my MS, and it’s actually reduced the number of questions I’d otherwise send to my GP / MS nurse / neurologist . You’ve made my appointments far more efficient and focused, and I’m incredibly grateful for the time and effort you put into supporting people like me."
Dear Prof Giovannoni.
I was a neurorehab consultant for >30 years and a MS subspecialist within it. I applaud your initiatives and welcome reading your MS-Selfie contributions. You're one of a minority of neurologists. who, in my experience, has taken such an interest in MS's impact as well as in the disease itself. That is immensely valuable and a lesson to others.
If doctors give in to inadequacies, "cutting the cloth" accordingly, and stop pushing the boundaries in patients' interests, then it will be "game over" for the profession. I just hope your "retirement" doesn't dissuade you from maintaining an active interest in this field in which you are so helpful..