Supporting patients with secondary progressive MS
Helen Owen, the lead Neuro-Inflammatory Nurse in Swansea Bay UHB, shares how their service supports patients with secondary progressive MS.
Identifying patients with secondary progressive MS can be challenging. For people who have a longstanding diagnosis of relapsing remitting MS, monitoring with clinical and patient reported outcome measures is key. It helps to identify the transition to secondary progressive MS by documenting clinical progression over a year period in the absence of relapses.
For patients established on a disease modifying therapy (DMT), there may be a reluctance to admit worsening of symptoms. They could be afraid of having their DMT stopped. Because of the historical lack of DMTs and clinical services for progressive disease, there may still be a stigma. And fear amongst people with MS of this diagnosis. It’s sometimes perceived to be the end of the road for MS treatment and support.
An under-recognition of secondary progressive MS
This barrier to diagnosis of progression can lead to under-recognition of secondary progressive MS. As treatments for non-relapsing progression are developed, it’s vital that we address this. People can experience a range of psychological emotions with increased anxiety about how progression will impact on their lives. Including issues such as their ability to work, the impact on their family as well as the social aspect. And the MS team hope to be there to support them through this transition.
Annual reviews give the HCP the opportunity to offer reassurance, advice and support. As well as provide updates on the newer treatments and clinical trials available. Reviews enable the monitoring of symptoms such as mobility, upper limb function, bladder and bowel, pain, fatigue and cognitive symptoms. As well as employment issues and home circumstances.
This may lead to referring to the wider multi-disciplinary team, or advice on effective symptom management. At an annual review the patients are also assessed and advised regarding their potential eligibility for treatments. Such as Siponimod for disease modification or fampridine for mobility issues.
The challenge of managing people with progressive MS
In 2018 knowing that there were new treatments on the horizon for secondary progressive MS, Swansea Bay NIS undertook a service review. It revealed a caseload of around 800 people with secondary progressive MS.
There is a high caseload and burden of monitoring of DMTs in relapsing remitting MS. So each year between 500-600 patients were not seen by an MS specialist health care professional. In the majority, these were patients with progressive disease.
Our service review highlighted many people with progressive symptoms, not on treatment and often disengaged. And unaware of recent advances in MS treatments which could be of benefit to them. They were also unaware of the importance of health measures and support available to improve health. And their ongoing risks of worsening disability.
As a team we have employed several measures to address this and encourage re-engagement. Patients with secondary progressive MS or those patients labelled with relapsing disease but not on DMTs were sent contact letters. These included information on the new licenced treatment, offering a review appointment.
In collaboration with the MS Society, we developed educational Living Well with MS information days. They were targeted for this group of underserved patients.
Living Well MS information days
Living Well information days aimed to inform on advances in treatments, research and symptom management. They encouraged re-engagement with the service by giving patients the opportunity to talk to different team members. And other patients with MS with similar experiences to them. The days also focussed on the importance of brain health in MS including smoking cessation, diet and exercise.
During the day various members of the team provided talks on a range of topics. Including understanding MS, managing symptoms, keeping active, treatments, research development, and identifying the psychological impact progression can have. Representatives were present from the UK MS Register who encouraged registration and ongoing participation to assist in future research. The MS society supported the events providing information on local activities and groups.
Patient feedback from the Information days was encouraging with patients feeling empowered in taking control of their self-management. They felt more confident about the treatments and research trials they could be assessed for. One of the attendees started adaptive surfing through activities run by the MS Society. Patients reported that if they hadn’t attended the information day that they would not have made these positive changes in their lives.
The Living Well information day helped me regain my confidence to return to work.
Providing education and support
We’re aware that secondary progressive MS is under-reported and often feared amongst patient groups. It’s traditionally been under-resourced by healthcare institutes leading to a relative lack of care of patients with advancing disabilities.
It’s important as an MS community that we come together to try to address some of these problems. We need to ensure that patients are educated and engaged in services. We’ve found that group days can provide education and support to large numbers of patients. The face-to-face contact is important for making patients feel valued.
If treatments are licenced for non-active progressive MS, it will become more important to identify disease progression. And encourage patients to report outcome measures either in clinic or online via groups such as the UK MS register.
