Finding that the pattern of your MS is changing from relapsing remitting to secondary progressive can be a distressing experience. Many people report that it feels like being diagnosed with MS all over again. How can we improve the support available to people going through transition? Two years ago we commissioned a team of researchers at Cardiff University to explore people’s experiences and look at ways support could be improved. Dr Freya Davies explains what they found out.
What did we do?
We interviewed people with MS, their carers and members of the MS team to find out more about their experiences and suggestions for improvements. We also held two group interviews with people with MS and carers. Most of the people with MS we interviewed had experienced their MS changing from relapsing remitting to secondary progressive.
What did we discover?
People found out their MS had progressed in different ways. Some noticed a change themselves and confirmed their own suspicions by discussing this with the MS team. Sometimes a neurologist or nurse discussed the transition in a clinic appointment. Some people only found out by chance when they overheard a conversation or read a letter written about them.
Not everyone felt labelling their MS as progressive made much difference to them. Whatever their MS might be called they were already getting on with adapting to the day to day challenges of life.
“I suppose at my stage it doesn’t really matter whether I am relapsing remitting or secondary progressive […] it is what it is sort of thing. And I’ve learnt to manage it as best I can”
Some people noticed the transition affected them more. Finding out without enough explanation of why they now had SPMS and what that meant for them often left people confused. A lack of information could mean people tended to focus on the ‘worst-case scenario’. Many people wanted an explanation about SPMS during a face-to-face appointment with the MS team. They also liked the idea of some written material to refer to after their appointment and the chance to meet other people coping well with SPMS.
“I understand that it’s secondary progressive now. I understand it could get a lot worse in the future, I understand it could stay the same for the rest of my life so, you know I’m pretty clued up – well nobody knows how it’s going to go, I’m well aware of that.”
The neurologists and MS nurses we interviewed told us they were often unsure of when to broach the topic of progression with their patients. They often only brought up progression once they were very sure it had happened, which was often some time after the progression first began.
Support from the MS team
Many people felt very satisfied with the care they had received, particularly from their MS nurse. Being able to build a relationship with an MS nurse and knowing they would provide ongoing support was highly valued. Some people found hospital appointments could be frustrating and didn’t feel like they gained much from attending. They wanted appointments to be more focused on the things that they felt were important to them, and not necessarily the things that were important to the doctor.
“I think when I do go to see him [neurologist] it’s so brief, and the next thing you know I’m going out the door and he’s seeing me again the year after and I’m thinking ‘what was that all about?’”
Support from other sources
The healthcare team was just a small part of the support network people with MS and carers developed over time. Other important parts of this support network included the relationship between people with MS and their carers, their wider social circle (family, friends and colleagues) and peer support (from other people with MS or carers). People with MS and carers told us about the things they did to help themselves. Keeping active both physically and socially was important to many people. It was felt that services to promote maintaining activity, such as local exercise schemes, should be expanded and better promoted. Access to information was also important but not everyone wanted the same amount of information at the same time. People liked information to be simple and reliable. A variety of different formats were suggested including websites, emails, leaflets and face-to-face interactions. Where people wanted to get help and support varied, so we suggest it is very important to provide different options to suit different people.
“I maintain a good attitude you know, yes something could happen in the future but I live today, in the present, and I do a lot of yoga. So that keeps me sort of mobile. It keeps what I’ve got going, going, you know. It’s important to keep what you’ve got.”
Support for carers
Everyone interviewed recognised the important role that carers play and some felt that more support targeted towards carers should be available. Some carers felt that around the transition their caring role was manageable as long as the person with MS was well supported. Many of the carers we interviewed had never thought about or looked for help for themselves.
Support for health professionals
Some symptoms experienced by people with MS were more difficult for health professionals to help with than others. In particular, health professionals felt more psychological support for people with MS would be useful. They were also keen to try to promote the self-management of MS among their patients. They noticed that symptoms like fatigue and low mood could sometimes make it hard for people with MS to self-manage and wanted to learn strategies to provide more help.
How will this research help people with MS?
The research has helped us to better understand how support during the transition phase could be improved. It is clear that a ‘one size fits all’ approach is not going to work well and that services need to be more flexible to ensure information and ongoing support are delivered in a way that suits each individual. For people with MS it is important to have clear reliable information about SPMS. Being well informed earlier on might help people gradually adjust to a change in their disease course.
We need to encourage health professionals to make sure they check what information people with MS actually want. The transition can be seen as a good opportunity for people with MS to take a more active role in setting the priorities of their care. Although doctors and nurses may be the experts on medications, people with MS are the experts on their own lives, challenges and priorities. Specific services are likely to be particularly beneficial to people around the transition, including help to keep active, to develop self-management skills, and to receive psychological support. Focusing on designing these services, and training professionals to deliver them should help to improve the quality of life of people around the transition.
What is MS transition?
There is often a reluctance to talk about progression, by both the doctor and the person with MS, and the discussion is often postponed.The change between types of MS is not a sudden switch but a gradual process where the relapsing and progressive patterns overlap for a while.
Sometimes there can be differences of opinion. The person who is living with MS may feel their MS is progressive. The neurologist, who is observing it in a clinical setting, may take a more cautious view and prefer to monitor symptoms over a period of six months or more.
It’s not unusual for people to say that when they were told they had secondary progressive MS, the information was given fairly casually and with little time for discussion. Yet the news can bring up similar feelings to when someone was first diagnosed and can be more upsetting if little is offered to help them.
The effect of words
It is not uncommon for people to think that progressive MS will be worse than the relapsing type. The medical terminology is probably unhelpful in this. Relapsing remitting and secondary progressive simply describe the clinical nature of MS, not the life of a person living with the condition. People with either form will have better or worse experiences depending on their particular symptoms and the impact these have on their activities. The fact that one form follows the other does not necessarily mean that MS has become worse.