This week is MS Awareness Week and a campaign is aiming to reach the one in five people with multiple sclerosis who are not in contact with specialist services
A multiple sclerosis (MS) awareness campaign, called 1MSg, has launched recently urging people with the condition to ‘Take Control, Know Your Choices’.
The campaign, funded by Biogen and developed alongside clinical experts, comes in response to research which highlights the need for patients to regularly engage with MS-specialist services.
Previous research conducted by the MS Trust, found that nearly a fifth of people with MS had seen neither an MS-specialist nurse (MSSN) or a neurologist in the past year, and so will not have received the comprehensive annual review recommended by the National Institute for Health and Care Excellence (NICE). In addition to this are those patients not currently known to MS-specialists due to not being in contact, those ‘lost to follow-up’.
To help address this issue, the 1MSg campaign highlight the benefits of regular and quality engagement with MS-specialists in order to ensure that people are making informed decisions about their disease management based on the latest information, under the guidance of experts.
The progression of MS can be unpredictable and can vary from individual-to-individual, and therefore monitoring is important.
Dr Martin Duddy, a Consultant Neurologist specialising in MS, said: “I’m supporting the 1MSg campaign because I believe that there are people in the UK living with MS who are not seeing an MS doctor or MS nurse regularly, and who would benefit if they did. The way we manage the condition has changed a great deal. This includes the support services we offer, how we control or treat symptoms, how much we understand about the disease and its progression through technology such as MRI, and what we’re able to offer in terms of treatments to help alter the course of the disease.
The advent of DMTs, I think, has induced a lot of hope in people with MS. In the medium-term, within the UK, we’ve been collecting evidence on whether we see a disability reduction and that is coming through at six and eight years now that people who are on the drugs are not as disabled as they would have been if they hadn’t taken them.
We’re looking long-term, and worldwide, to collect better information about the 10, 20, 30 year outlook, but the first principles in science and some of the early data would suggest that treating the disease actively at an early stage does prevent some of the later disability, so I want to encourage all people living with MS to regularly see a member of their local MS team.”
To learn more, visit www.1msg.co.uk where you can access a wealth of information and hear advice from healthcare professionals, including Dr Christian Jessen, about the importance of engaging with MS-specialist services. You can also watch a video explaining more here.
Hi, I’m a member of a T&F group (Task & finish) consist of CCG, clinicians, health care,, patient reps and neurological group, at local hospital. CCG along with NHSE have chosen 5 neurological conditions includes MS too concentrate on, the biggest stumbling block is we don’t have a neuro consultant, so GPs can’t refer patient’s who show signs of MS.
I’m the only one from original group and have been fighting MS MND issues over 2 years, big brick wall comes to mind, but will keep knocking at their door
That’s really terrible to hear. How can this happen??
Sounds like you’re doing a brilliant job of raising awareness of this though – good on you!
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These guide lines from NICE are all very well but if you try to access these services and they are not available, what can you do ?
I have been trying to get an appointment with my consultant for the past 7 months to no avail.
I have spoken to his secretary, an MS nurse and my GP and no one can help.
I am consistently told no appointments available until next year. I have been given no support.
I decided enough was enough and managed to book a private appointment with him within 3 weeks.
Says it all.
Absolutely horrendous situation and utterly frustrating. You raise an interesting point – if these are the guidelines, what can we do if they’re not being adhered to?
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