Knowing how to navigate the health system when you have MS is important no matter where you are on your journey. Perhaps it's a first appointment, annual review, query about new or changing symptoms, a health escalation or medical emergency? Or maybe it's how to re-engage with your MS team if you feel like you've dropped off the system? Experiences will vary depending on factors such as where you live and whether you're on a disease modifying drug.
Doctor's appointment
Starting the process towards a diagnosis usually begins with your GP. For some, it can feel like a long drawn-out process because MS symptoms are not unique, and you may end up with a different diagnosis. Your doctor will want to rule out other potential explanations first, before referring you to a neurologist for further investigations.
We know from the 2018/19 National Neurology Patient Experience Survey that a significant number of people with neurological symptoms reported seeing their GP five or more times before getting referred to a specialist. In real terms this affected four out of every 10 women surveyed and nearly three in 10 men. This can be frustrating when you just want answers.
To help, we have a number of resources:
- Worried you have MS: covers preparing for your GP appointment and how to cope with uncertainty
- Breaking it down podcast which includes an interview with an NHS doctor about his own diagnosis as well as tips for others.
Neurologist referral
Only a neurologist can diagnose MS and this normally requires a referral from your GP. Depending on where you live this can take time, so we have some useful pointers to help you while you wait. They detail how you can prepare for your first neurologist appointment, manage symptoms and uncertainty, and unexpected outcomes. Diagnosing MS can be challenging as our Limbo land podcast explores during its interview with neurologist, Dr Emma Tallentyre.
Coming to terms with your diagnosis when everything about MS is new, can feel overwhelming. Our information and helpline will guide you through the next steps:
Knowing what to expect in the weeks and months ahead can help with some of the uncertainty and give you the opportunity to collect your thoughts and questions for your MS team.
It's important to ask them how you can contact your MS nurse and neurologist if you have any concerns or questions.
Useful questions for your health professionals
It doesn't matter whether you are new to MS or have decades of lived experience, it always helps to have a list of questions going into a medical appointment. You are likely to see a range of different health professionals over the years, and not all will be familiar with MS.
To help, we have put together a list of questions around topics such as symptoms, treatments and tests. If you have an appointment coming up, it may be worth jotting down any you want to ask.
Getting reviewed by your MS team
The NICE MS guideline recommends you see an MS specialist (such as a nurse or neurologist) at least once every year to review your symptoms and treatment options. This applies to everyone with multiple sclerosis including those with progressive and advanced MS. There are treatment and management strategies to support you with your symptoms, and regular communication with your MS team will help you access a wider range of health professionals.
If you haven't had a review for a while, speak to your MS nurse or GP to get an appointment booked in. Sometimes people find they no longer get automatic reminders for their annual reviews. This may happen if you stop a disease modifying drug for example. You may have been moved onto a patient initiated follow-up scheme, which puts the responsibility on you to contact your MS team when you need them. They want and expect to hear from you, so do get in touch. If you are unsure how to contact your MS team, you can try our map of MS services to locate them.
If you experience new symptoms or existing ones become more difficult to manage, you don't need to wait until your next review to get support from your MS team. Your health professionals team will want you to contact them when you need them. If you leave a message, try to give enough information to help them prioritise their calls. It often takes a few days for a member of the team to get back to you.
If you need urgent medical attention, ask your GP practice for an emergency appointment. These services can also help:
If you require emergency care, call 999 or go to your nearest A&E. Trust your judgement, and keep in mind not every health concern is MS related.
If you have a confirmed MS diagnosis it is sometimes possible to self-refer to a particular MS specialist nurse service. This can also apply to other specialist services such as continence services and physiotherapy. To find out if this is available in your area, speak to your GP.
Self-referrals mean you can approach a specialist directly to hopefully speed up the waiting time, and follow up with them if you haven't heard back.
Some appointments with your health professionals may take place by telephone or video call. In certain instances, this can make a lot of sense and save you the effort of travelling in. You may want to review our information on preparing for a virtual or telephone appointment information ahead of your call.
