Secondary MS and Advanced Care planning

By Claire Banner, MS Specialist Nurse, Hereford And Worcestershire NHS Trust



Secondary Progressive MS is the changes from Relapsing Remitting MS when disability is getting worse, unlinked to relapses. (1) MS Specialist nurses are in a unique position to build up relationships with patients and help them understand their symptoms and changes in their condition. (2) In this project I aimed to look at the support we give patients who are transitioning into Secondary Progressive MS (1) and how as a service we can improve this transition. I have investigated the idea of implementing an advanced care plan and finding out if patients would feel a benefit from this.

Advance care planning is often associated with death and dying but as in the Advance Care Planning framework ‘it is the process of discussing and recording patient preferences regarding future care for patients who may lose capacity or the ability to communicate effectively in the future.’ (3)

A symptom of MS due to the nerve damage can be cognitive issues which can be impacted by fatigue and changes to mobility. These cognitive issues can impact capacity as it gets worse and planning for this can improve their worries and anxiety about the future. This was something that I wanted to find out if patients understand SPMS and if the worries around this would be alleviated by being talked about earlier in the MS disease process.


Advanced care planning is not talked about in our area as standard with Relapsing Remitting patients and is often only talked about regarding ‘Respect’ (4) documents when a patient is well into the Secondary Progressive MS diagnosis and often when they are unable to communicate their own needs and wishes. My aim is to improve services for these patents who go on to have SPMS to voice their plans and get the care they would want, where they would want.

I created a survey for my RRMS patients to help me understand if the MS nurse is the best placed person to have these conversations and discover if the patients would be receptive to these conversations while they are still Relapsing Remitting. I wanted to discover the patients understanding of SPMS and if they feel that MS nurses are who they would discuss this with. From this I also wanted to gather if being supported by the creation of an Advanced Care Plan which they knew would be evolving to their needs would be a beneficial tool for the patient.

Secondary Progressive MS is hard for patients to accept, especially if they unaware of what SPMS is and the symptoms that come with the diagnosis. It is also a worrying time for patients as it brings questions such as ‘Will I have to stop my Disease Modifying Therapy?’ ‘How quickly will it affect me?’ and even ‘Does this mean I am going to die soon?’. Looking at if having conversations earlier about long term and advanced care planning may help patients to not be so worried about talking about the changes and not have the fear of the unknown future.


I wanted to gauge if patients are aware of SPMS and it was reassuring to know patients are aware of the conditions and that the majority would be confident in talking to the MS nurse about this. This was positive as introducing an advanced care plan in the MS Specialist setting would benefit the patients. However, looking at the results of my survey not everyone said they would feel confident in discussing changes with the MS nurses and not all would definitely want to think about advanced care planning

Future Planning

Through this project it has opened the conversation in the clinical setting about SPMS and talking to patients about their future. As these conversations develop, I will be able to look at putting together an appropriate advance care plan that takes into the evolving nature of MS and that there is not a ‘one size fits all’ approach to MS nursing. Talking to be patients about Respect documents and advanced care when they are well and not relapsing or progressing is difficult but through this project it has been beneficial to see that patients would be receptive to knowing more about these changes.


  1. Secondary progressive MS | Multiple Sclerosis Society UK (
  2. MS specialist nurses | MS Trust
  3. Gold Standard Framework - Advance Care Planning (
  4. Resuscitation Council UK introduces version 3 of ReSPECT form | Resuscitation Council UK

More MS Academy Palliative care Projects

Secondary MS and Advanced Care planning
By Claire Banner, MS Specialist Nurse, Hereford And Worcestershire NHS Trust
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