One of the most frequent calls we hear from those newly diagnosed with MS is for more information. Nothing wrong with anyone asking, those of us with more experience appear happy to pass on what we have learned. However, one question remains unanswered: why are patients not being given necessary information by doctors?
I well remember the appointment when I received my diagnosis.
It was a sunny morning in April 2002 at Ysbyty Gwynedd (Gwynedd Hospital), in Bangor, north Wales. The consultant neurologist gave me his diagnosis. He told me that my problems I had been experiencing were all due to me having multiple sclerosis but a very mild form that he then described as ‘benign’.
He explained that he had gone back over my medical records and found evidence that I had had MS since my early 20s. In 2002 I was 49, turning 50 in November. He said that, as it had taken more than 25 years to reach the stage it had become, he had no reason to believe it would develop any more quickly in the future.
The only additional information he gave me were details of the local branch of the MS Society.
Clearly, other questions will arise as time passes by and both the progress of the disease and its treatment develop.
In any of the many MS groups on Facebook, we see a multitude of questions. Not only are they asked by the newly diagnosed but they are also from people facing new symptoms, wondering if others have gone through the same.
All good questions that need to be answered, but perhaps they’d be asked less frequently if the medical profession put more into explaining the disease and everything associated with it.
Better resources needed
The blame for poor explanations doesn’t really lie with doctors, though, especially neurologists. They just the fall guys. They need better support. To me, there seems to be a need to give doctors better resources to enable them to improve patient education.
It is surely not reasonable to expect doctors to explain all the intricacies of multiple sclerosis. However, there can be no excuse for a patient being allowed to leave their consultation room without an understanding of the disease. In particular, they must know which type of MS they have, and a better than good idea about how the disease may develop and the various treatments they may consider accepting.
Certainly, I would like to have been told the type of MS I had when I was diagnosed. I was told it was “benign” but it took more than 17½ years, including a visit to Russia, a telephone conversation with a US doctor, and a move from the UK to Spain, to receive my correct diagnosis of having PPMS (Primary Progressive MS). Last November, my Spanish neurologist confirmed, without doubt, that I have PPMS and prescribed my first ever MS medication.
Now, put yourself in the position of a doctor or neurologist who has to deliver such a diagnosis and give the patient that basic understanding. What could you have in your possession to help pass on sufficient knowledge?
It must be time that all doctors, who may need to break the news of MS, to have a collection of leaflets and other educational material that patients can take home and absorb at their leisure. While some neurologists in centres speciaising in MS may have these available, the sad truth is that those delivering diagnoses in other hospitals generaly do not.
That must change – and change quickly.
We must not forget that we are living in the 21st century. Today, educational resources need not be just be in the form of the written word. We live in the video age and I think doctors should have DVDs as well as leaflets for giving out to patients.
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50shadesofsun.com is the personal website of Ian Franks. He enjoyed a successful career as a journalist, from reporter to editor in the print media. He gained a Journalist of the Year award in his native UK. More recently, he was a freelance medical writer and editor for various health information sites. Ian received a diagnosis of MS in 2002 and now lives in the south of Spain. He uses a wheelchair and advocates on mobility and accessibility issues.