Access to effective treatments is our number one goal.
In Scotland, we’ve recently been exploring how people with relapsing MS make decisions about which disease modifying therapy (DMT) to take, or whether to take one.
As part of this work we developed an online survey targeted at people with relapsing MS. 438 of you responded, providing an important insight into what influences people when making decisions about DMTs.
Many people with relapsing MS who have the choice to take treatment say their decision is complicated. With a better understanding of the decision making process we can offer better support to people.
Who responded to our survey
We had responses from people living in all the territorial health board areas in Scotland. 332 people who responded had relapsing MS, and so we know they’re eligible for DMTs.
That’s because the DMTs currently available on the NHS are used if, as a result of your MS, you experience relapses. You can sometimes get relapses with progressive MS, but usually you don’t. Read our information about research into treatments for progressive MS.
Progress in prescribing
Encouragingly, people’s responses to our survey showed that good progress has been made in DMT prescribing in Scotland.
- 87% of people with relapsing MS had been offered a DMT
- 72% of people with relapsing MS are currently taking a DMT
- 50% of people were taking a DMT within six months of diagnosis
- only six people had never seen their MS nurse. 85% had seen their nurse in the past year
Decision making differences
We asked people about how they decided what treatment to take.
- 27% of people wanted their neurologist to tell them which DMT to take
- a further 13% only wanted to be given the choice of one treatment to research
This means that a significant minority (40%) of people don’t want to be given a choice, and want their neurology team to be in control of the decision making process. The remaining 60% would like to choose between different DMTs.
- 18% would like a choice of two or three DMTs to research
- 18% would like to be told all DMTS that they are eligible for and be able to research these options before speaking to their neurologist
- 18% would like to research all DMTs before discussing this with their neurologist
- 6% were not sure what they wanted when they were offered a DMT
80% of people told us that they were given the right length of time to make a decision.
Reporting our findings
Thank you to everyone who completed the survey. Together with evidence from other sources, we used the information in our report, Right Treatment, Right Time – Understanding MS Prescribing in Scotland (pdf).
Although good progress has been made there is still room for improvement. Our report details recommendations, which we’ve shared with MSPs, on how we can achieve this. Next we’ll be engaging with health boards to discuss how best to implement these at a local level.