Advanced MS is not a type of multiple sclerosis (MS), like relapsing remitting MS (RRMS) or primary progressive MS (PPMS). Advanced MS is term that clinicians and the MS community use to describe when MS symptoms have become complex to manage. They may have impacted on a person’s mobility, care and support needs and they will need significant help from others. People living with advanced MS will need to make substantial changes and major adjustments in their life.
Every person living with MS will have a unique journey and not all progression will be the same. Understanding the nature of your MS and having open and honest discussions with your specialist MS team about the future will be helpful for both you and your wider health team.
Making those adjustments and changes, both emotionally and practically, can be easier if you are informed and know where to turn for support.
Some elements of the information below will be talking about the challenging issue of preparing for death and end of life care. We know not everyone with MS will need this kind of care and we understand this can be a sensitive and uncomfortable subject. However, we feel it is important to address and make sure people know that there is support if it is needed.
We will outline some practical and useful things to consider whilst planning for a future with advancing or advanced MS.
Making plans and managing expectations
Care and support services
Expert legal and estate planning advice
Accessible ‘Changing Place’ toilets
Independent Living aids, equipment, and home adaptations
Support for family carers
Making plans for future treatment and care
Palliative and hospice care