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Your Missing Pieces

Your Missing Pieces

Discussing one’s potential future is important for people with MS. Ensure if you are diagnosed with MS or someone in your family is diagnosed with MS you are prepared for the next conversation with a HCP (Healthcare Professional).

 

Questions to ask your doctor

  • What kind of MS do I have?
  • Will I have new symptoms?
  • Will my symptoms get worse over time?
  • Who do I need to contact if I have a relapse?
  • What can I do at home to manage my symptoms?
  • How will I know if the treatment is working?
  • How can I be referred to an MS specialist neurologist?
  • Will I need to go on treatment?
  • What can I do to prevent or reduce frequency of relapse?
  • What can I do to prevent the onset of disability?
  • Will my MS get worse over time even if I do not have a relapse or experience any symptoms?

SETTING YOUR GOALS

To empower people with MS to work with their HCP and jointly agree an individualised treatment plan there are a number of steps the Missing Pieces report identified.1

  • Have a follow-up appointment six weeks after diagnosis to fully understand the type of MS you have, what symptoms may be experienced and the current and long-term impact on physical and mental ability.
  • Consider what you want from your treatment so you can clearly express your treatment goals to your HCP.
  • Demand prompt access to treatment that can change the course of your disease from diagnosis.
  • Make sure that your care and treatment plan is individualised and it is reviewed at least once a year by a MS specialist HCP to ensure the plan is delivering to your needs if they change as your MS progresses.
  • Work with your HCP to identify one person within your support team who will make sure you have prompt and simplified access to the right member of your multidisciplinary team at the right time.

66% saw delaying disability as a more important treatment goal than reducing the frequency of relapses.2

The missing pieces report

Download the "Missing Pieces" report which aims to identify the gaps or ‘missing pieces’ in knowledge, awareness, treatment pathways and care plans, which are preventing people with MS from accessing the right treatment. It has explored the attitudes of people with MS and their healthcare providers towards treatment in the UK and underlines the need to challenge our thinking around treatment goals and end-points.

report