Respondents ranged from people newly diagnosed with MS to those who have been living with MS for 40 years or more (the longest was 54 years). The average length of time since diagnosis was 10.5 years. A small number were awaiting diagnosis.
MS ‘types’
Three-fifths (60.6%) of respondents had relapsing-remitting MS. One-fifth (21.6%) had secondary progressive MS, and a tenth (10.7%) primary progressive. Just 3.6% had clinically isolated syndrome.
“My neurologist says I still have RRMS but I wonder if I now have SPMS, as I don’t have dramatic attacks, I’m just getting slowly worse.”
“It seems that the professionals are more focussed on the label than the patient.”
Among those with the less common forms of MS, there is a strong feeling that they get less attention and support than the RR majority.
“Most information/treatment/studies are on relapsing-remitting – people with PPMS are the ‘poor relations’.”
Finding information
Over four-fifths of respondents found it “fairly easy” or “very easy” to find information about their disease course. Many noted that finding information is much easier now than in the past, thanks to the internet and the growth of MS societies and local groups.
People use a range of different information sources, with most respondents using more than one. MS societies are the most used source, closely followed by health professionals. The internet is widely used, though some respondents mentioned downsides of online research: information overload and difficulty in judging the quality of information found.
Respondents’ confidence in their physicians varied widely, with some having a very high opinion of their family doctors or neurologists, while others find theirs uninformed or uninterested.
“There are so many websites and support groups available now. This wasn’t the case when I first had MS.”
“There is so much info – it can get somewhat overwhelming.”
“I’m living in Vietnam, where MS cases are very rare... I’m lucky I can use English to search for information about this disease, while many others in this country cannot.”
“More info is not better, it just adds to the confusion. I want the doctors to spend more time with me at appointments – not tell me where to look things up.”
Access to treatment
While the majority of respondents receive treatment from a neurologist or general practitioner, a substantial minority use alternative therapies, either exclusively or alongside conventional treatments. Over 7% were not receiving treatment, citing a variety of reasons, including affordability/lack of insurance cover, failure of their doctors to inform them about available treatments, and mistrust of the treatments available.
Those with PPSS were vocal in their frustration that there are no treatments available.
“I don’t visit any medical practitioner as I feel there is nothing they can really do.”
While over half felt well informed about treatment options available to them, over a third would like to know more, particularly about complementary therapies and new drugs currently undergoing trial.
There were striking divisions in people’s confidence in the information provided by their doctors, with several commenting that they had to research treatments themselves and request them from their family doctor. Some respondents expressed a concern that the information available about drug treatments is onesided, with little independent information to balance the promotional material provided by the drug companies.
“I’ve had to research treatments then ask if I can have them.”
“Not enough info on alternative treatments, especially for secondary progressive.”
“I am avoiding intramuscular injections due to the cost, side effects, and seemingly fishy monopoly of the drug companies.”
“I believe there needs to be more availability and information of the interlacing of medicine and alternative medicine.”
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