Key learning points:
- 5,000 people a year are diagnosed with multiple sclerosis (MS) many of whom are under 40
- MS presents with a different set of symptoms for each person which can make diagnosing the condition difficult
- It is important to signpost patients to accurate and non-biased information, particularly when they are newly diagnosed
MS is the most common, disabling, neurological condition affecting young adults in the UK1, with over 100,000 people affected by the condition. It is more common in women than in men and has a peak incidence of diagnosis between the ages of 20 – 40 years of age.
MS is a disease that affects the myelin sheath that acts as insulation across the nerves of the brain and spinal cord, and is thought to be autoimmune in origin. It may also damage some of the neuronal axons themselves, and our understanding of the exact underlying mechanisms remains incomplete.
As the disease can affect nerves anywhere in the central nervous system, it presents with a wide range of symptoms. Some of the common initial symptoms can be fatigue, stumbling more than before, unusual feelings in the skin (such as pins and needles or numbness), slowed thinking or problems with eyesight2. Not everyone experiences the same symptoms and symptoms may even vary in the same individual on a day-to-day basis. Due to this wide variation in presentation, it can take some time for an individual to be diagnosed with MS.
In the past diagnosis was also often delayed until an individual had developed more than one set of symptoms that were either separated by time or by space and affecting nerves in different parts of the body.
However there is now much more of an emphasis on trying to diagnose the condition early. This is because some effective treatments for MS have since been developed, which can have a significant impact on how the disease progresses, although, as yet, there remains no cure.
Types of MS
About 85% of individuals with MS will present with a relapsing remitting course of their disease, where they get episodic deteriorations in their condition that then resolve either partially or completely. It is this group of patients who benefit most from early diagnosis as the new disease modifying therapies can reduce the frequency and severity of relapses.3
Other types of MS include, but are not limited to, secondary progressive, which usually presents as part of the on-going illness with evidence of increasing disability, and primary progressive MS. About 10% of people with MS are diagnosed with the primary progressive form in which disability increases from the outset.4
Making Sense of MS
Whatever the patient’s type of MS, being newly diagnosed causes significant levels of anxiety and a need for answers. The MS Trust, one of the main UK charities, has responded by producing a new resource specifically to help people who have recently been diagnosed. The Making Sense of MS resources were developed in partnership with people with MS and the clinicians who work with them, and provide positive and practical introductory information at the point of diagnosis. Much of the information is available in a flexible, personalised format, which allows people to access information that is right for them and at a time that suits them.
With a diagnosis of the disease comes a real source of uncertainty and people often seek additional sources of information.5
The MS Trust undertook an online survey of 500 patients with MS from across the UK, which showed the need for receiving the right level of information at the point of diagnosis. The survey outlined the scale of the problem, with 93% of people with MS feeling the need to carry out their own research. Patients felt that receiving information at an earlier point in their diagnosis would have both reduced their stress levels and decreased the likelihood of coming into contact with misleading information.
Signposting to information - what can healthcare professionals do?
As healthcare professionals, we are well aware that many patients desire more information on their condition at the time of diagnosis. We also recognise that a consequence of this is that many individuals will turn to the internet for answers. So being aware of reputable sources of information on the internet is a key skill for modern GPs and nurses. The need to ‘Google’ information is particularly important to people who are younger. MS frequently presents at a time of great change in a person’s life (early 20s-40s) and so is often associated with times of major life events such as getting married and starting a family, or gaining a promotion at work. This means that it is important for individuals facing diagnosis to have access to accurate sources of information so that they do not rush into life changing decisions that they later regret.
Having a variety of well written information about a range of issues is really helpful in this regard. It means that patients can look at the information that is relevant to their particular situation at their own pace, going into as much or as little detail as they want. Some patients have been searching for a diagnosis for some time and so are simply relieved to have a name to put to their situation, whereas for others it comes as a complete shock. Obviously this influences how people react, and how ready they may be to ask questions when they are given their diagnosis. It may also influence how much information a patient seeks at a given time.6
Where to get the right information
The resource Making Sense of MS, includes a postcard sized introductory booklet that is easy to store in practice and provides tailored information for people who are newly diagnosed. It signposts further information which is available whenever someone needs it. It also helps meet NICE Guidelines, which were launched in October 2014,7 which advise healthcare professionals to provide both oral and written information to patients and their families which includes:
- a guide on what MS is
- treatments, including disease-modifying therapies
- symptom management
- support services, and
- legal requirements
Being aware of such useful resources can help us enable patients to avoid finding misleading or frightening information. The MS Trust resources explain what a patient can expect and also give some good self-help advice for dealing with common symptoms. This is particularly important for a condition like MS which has a multitude of symptoms. Many people believe MS will cause mainly mobility issues, whereas often patients find that it is the hidden symptoms such as fatigue, emotional lability and memory problems that are more of an issue in their day-to-day life. Being able to read about examples of symptoms that people with MS may experience can really help patients to manage their condition better. Having access to accurate information can also help patients consider how, and when, to have potentially difficult conversations with their friends and employers.
Challenges in providing the right information at the right time
Easy access to physical information, for the healthcare professional to pass on to patients, also comes with its own set of challenges. This is particularly the case for neurologists who may treat patients with a variety of neurological conditions.
Practice nurses may also see patients in the interim between specialist appointments, so having materials to give to patients could help to reduce a patient’s anxiety. This is particularly the case for those patients who are facing their first journey into specialist healthcare, as they may find the prospect of accessing secondary care specialists difficult and frightening and prefer to consult with healthcare professionals in the primary care setting who are more familiar to them.
While there are challenges in providing the right level of information to patients, especially when in general practice, being aware of useful resources can help us to reduce patients’ anxiety of finding information that could at best be misleading and at worst completely inaccurate. Reputable self-help organisations can be really valuable sources of such information, and a good place to signpost patients to.
For more information or to order free copies of the booklet Making Sense of MS visit: www.mstrust.org.uk/makingsenseofms
1. Mackenzie IS, Morant SV, Bloomfield GA, et al. Incidence and prevalence of multiple sclerosis in the UK 1990–2010: a descriptive study in the General Practice Research Database. J Neurol Neurosurg Psychiatry Published Online First: 19 September 2013 doi:10.1136/jnnp-2013-305450
2. Perry M, Swain S, Kemmis-Betty S, Cooper P Multiple Sclerosis: Summary of NICE Guidance BMJ 2014; 349
3. Murray TJ Clinical Review – Diagnosis and Treatment of Multiple Sclerosis BMJ 2006;332:525
4. MS Trust, http://www.mstrust.org.uk/atoz/types.jsp
5. Langgartner M, Langgartner I, Drlicek M The patient’s journey – multiple sclerosis BMJ 2005;330:885
6. Levenson R, Jeyasingham M and Smith S The information needs and preferences of people newly diagnosed with MS, June 2012 www.mstrust.org.uk/info-needs)
7. National Institute for Health and Care Excellence (NICE - 2014) Clinical Guideline 186. Multiple Sclerosis: management of Multiple Sclerosis in primary and secondary care: October 2014.
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