MS relapse: getting care in place at short notice

1. 1

   Write down what has changed, and when

   The same day

   Which symptoms are new or clearly worse, the date they started, and what the person can no longer do alone. NICE defines a relapse as new or worsening symptoms lasting more than 24 hours, with no infection or other cause behind them, after a stable period of at least a month. The nurse will ask for exactly this.
2. 2

   Rule out an infection

   Before anything else

   NICE asks clinicians to rule out infection before diagnosing a relapse, urinary and chest infections in particular. An infection can make long-standing MS symptoms flare without any relapse being involved, and treating the infection is what settles them again.
3. 3

   Ring the MS nurse rather than starting with a carer search

   Day one

   The MS nurse decides whether this is a relapse and whether to offer treatment for it. NICE asks services to assess and treat a relapse that is affecting somebody's ability to do their usual tasks as early as possible, and within 14 days of the symptoms starting.
4. 4

   Say plainly that home is not managing

   In the same call

   NICE asks the MS team to check whether the person having the relapse, or their family and carers, have social care needs, and to refer them to social services if they do. Nobody will guess it from a phone call about symptoms. Where a relapse is severe, or the medical and social care needs cannot be met at home, inpatient treatment is the alternative the team should raise.

Your relative or partner may be the one reading this, and they may be the one who has to make the call while the hands or the eyes are the problem. There is no harm in a family member ringing on their behalf, with them there, so long as the person with MS has agreed to it. The MS care guide sets out what a carer does on a good day and a bad day, which is a useful thing to have read before you describe the week to anyone.

The fall at the end is the part that gets forgotten. A carer booked in the second week, when getting out of bed takes two people and nothing is certain, is easy to keep booking out of relief once things improve. Reviewing the week every few days, out loud with the carer, is what stops a fortnight of cover turning into a standing arrangement nobody chose. If the tiredness rather than the weakness is what lingers, MS fatigue and managed days covers how carers plan around it. Bladder urgency that has not settled with the rest is worth raising with the MS nurse or the continence service, and bladder and bowel care with MS covers what they can offer. If a relapse has left enough behind that the question is now about the ordinary week, progressive MS and 24-hour care takes it from there.

Not every relapse is treated with steroids, and NICE is explicit that a non-specialist should discuss that decision with somebody who has expertise in MS before offering them. If a course is going ahead, it is worth telling whoever is doing the caring what it involves, because prompting tablets and watching for the effects are ordinary parts of a visit. What carers can and cannot do with medication sets out where the line sits between prompting, assisting and administering.

Be realistic about the lead time. Searching is free and takes minutes, and you can message several carers the same evening, but you are choosing from whoever has the hours free that week rather than from everybody. Interviewing two people by phone sensibly takes a day or two, and a first visit follows that. The emergency care guide sets out what is realistic at each speed, today, tomorrow or later this week, and it has a request form if you would rather somebody looked on your behalf. Emergency respite covers the same ground when it is the family carer who has run out.

Being clear up front helps in the other direction too. If the relapse turns out to be worse than the first week suggested, a carer who knew this was relapse cover is easier to ask about extending than one who has already taken another booking for the fortnight after. Write the dates down in the first message: the visits you want now, the date you expect to review, and the fact that you may want more or less. Deposits, cancellation and notice explains how it works when money has already changed hands, and cancellations and late-running visits covers the day-to-day version of the same question.

Ask for the assessment even while you arrange something privately, because the two are not alternatives and an assessment already done is worth having the next time. Local authority funding explains how the council route works and what the financial assessment looks at, what a carer's assessment is covers the separate one for whoever is doing the caring, and direct payments covers taking the budget as money. Your council's adult social care number is on GOV.UK's council finder. The two national MS charities, the MS Society and the MS Trust, both publish information about relapses, and Carers UK does the same for the person doing the caring.