MS care
Care that flexes with multiple sclerosis
Some weeks need very little, and some weeks need a great deal. The right carer knows this person’s pattern well enough to do less on a good day and more on a bad one, without being told. It can be hourly visits, overnight care or live-in care, and the arrangement can change as often as the MS does.
3,500+ vetted carers, MS experience shown on the profile
Care that flexes
A good day and a bad day, side by side
MS does not follow a schedule, so care that does will get it wrong. Here is the same day twice: what the person can manage, and what the carer does about it.
A good day
The carer does less, on purpose
- Getting up
- Up on their own, a little slow, but steady enough.
- Carer: Nearby but not hovering. Lays things out and lets them get on with it.
- Washing and dressing
- Manages with time and a perching stool.
- Carer: Helps with buttons and laces if the hands are clumsy, and otherwise stays out of the way.
- Fatigue
- Tired by early afternoon, and a rest puts it right.
- Carer: Plans the important things for the morning and protects the rest.
- Heat
- Fine in a normal room.
- Carer: Keeps the room cool and drinks cold; a warm bath can bring symptoms on.
- Bladder and bowel
- Urgency, managed by planning the timing and knowing where the toilet is.
- Carer: Builds the day around toilet stops, with most of the fluids in the morning and fewer in the evening.
- Getting out
- A walk with a stick, the shops, seeing people.
- Carer: Drives, carries, knows where the benches are, and where the toilets are.
- Medication and appointments
- Manages the disease-modifying therapy and symptom medication with a reminder.
- Carer: Prompts, records, keeps the appointment list, drives to the infusion centre.
- Mood and thinking
- Some trouble finding words, some forgetting, and the frustration that comes with it.
- Carer: Patience, a notebook, and no finishing of their sentences.
A bad day
The carer does more, without being asked
- Getting up
- Legs heavy and balance unsteady, and the room spins if they move too quickly.
- Carer: Transfers with a hand or a frame, the way the physio showed, without rushing and without anyone having to reach.
- Washing and dressing
- Cannot stand long enough to shower, and the hands will not manage the fastenings.
- Carer: A seated wash or a shower chair, and clothes chosen for the day: soft, loose, and nothing fiddly to fasten.
- Fatigue
- Completely drained. Not sleepy, but switched off, and talking takes real effort.
- Carer: Cancels what can be cancelled, keeps the house calm, does the tasks the person would have done, and does not take the silence personally.
- Heat
- A hot day, a fever or a hot bath and everything gets worse for hours (Uhthoff’s phenomenon).
- Carer: Fans, a cooling scarf, cold drinks, a cool shower rather than a bath, and a call to the MS nurse if there is a fever, because infections trigger flare-ups.
- Bladder and bowel
- Urgency with no warning, or retention, and constipation.
- Carer: Pads or a catheter routine done with dignity, the fluids and fibre kept up, and the continence nurse called if anything changes.
- Getting out
- Going out is not possible today.
- Carer: Brings the outside in: a friend round, a phone call set up, the garden if they can manage the door.
- Medication and appointments
- Forgets, or cannot manage injections or the pill box with clumsy hands.
- Carer: Prepares and prompts, watches, and flags a missed dose or a new symptom to the MS nurse the same day.
- Mood and thinking
- Low, anxious and foggy. Relapses and fatigue can both cause this.
- Carer: Company without demands, and a word to the family or GP if it is lasting more than a couple of weeks.
The person is the same on both days, and the carer should be too. Somebody who knows what a good day looks like is the one who can tell when a bad one is starting.
Two patterns
Relapses, or a slow climb, and care that follows the shape of it
The neurologist will have said which kind. It matters for care because one needs a carer who can appear for a fortnight and disappear again, and the other needs an arrangement that grows.
Relapsing-remitting MS
The most common form at diagnosis. Flare-ups (relapses) lasting days to weeks, then recovery that is partial or complete. Care flexes: a lot during a relapse, little or none between. A carer who can step up for a fortnight and step back again is worth finding before the first bad week, not during it.
Care that fits
Hourly visits when needed; emergency care at short notice during a relapse.
How it worksProgressive MS
Secondary progressive follows relapsing-remitting for many people; primary progressive is progressive from the start. Symptoms build over years rather than in episodes. Care grows in step: from a few visits a week, to daily personal care, to live-in care where mobility, transfers or continence need someone there all the time.
Care that fits
Regular visits growing to live-in care; complex live-in where hoisting or catheter care is involved.
How it worksThe team around them
Who is involved, and where the carer fits
MS comes with a team of people around it. The MS nurse usually leads that team, and the carer is the person in the house who tells them what they need to know.
NHS
MS nurse
The first call for any change: a new symptom, a possible relapse, a fever, a medication problem. Most MS services have one; the carer’s notes make the call useful.
NHS
Neurologist
Diagnosis, disease-modifying therapy, and the reviews. Usually once or twice a year unless something changes.
NHS
GP
Infections (which trigger relapses), mood, pain, bladder medication, and the referrals.
Therapists
Physio, OT and continence nurse
Mobility and transfers, the equipment and adaptations, and the bladder and bowel routine. They set it; the carer does it daily.
You
Family and partner
The people who know the pattern best. Also the people a relapse lands on hardest, which is what respite is for.
PrimeCarers
Your carer
Someone who knows what a good day and a bad day look like for this person, and flexes without being told.
How it works
From “something has to change” to a carer at the door
No assessment visits, no waiting list. Some families are talking to a carer the same day.
Search your postcode
See the carers who cover it, with photos, rates, experience and reviews. Filter by hourly, live-in or overnight.
Talk to the ones you like
Message them directly, or tell us what you need and we can suggest some carers to look at. The choice is always yours.
Meet before deciding
A call, a video chat or a visit, free and before anything is booked. A lot of families have a good idea within the first ten minutes.
Book, and change it as needs change
Contract, insurance and payment run through us. You can add visits, add nights, or move to live-in care as things change, and you only pay for care that happens.
Safety first
Someone coming into their home? We take that seriously.
Letting a carer into the home of someone you love takes trust. We've built every layer of protection so that trust is earned, not assumed.
Vetting before a carer appears
Enhanced DBS, ID and right-to-work checks and an online interview before a carer appears, with renewal or rechecks depending on the accepted route. We check that a carer is caring; their skills and training are for you to check with them.
Insured and above board
Every visit is insured, contracted and paid securely online after care happens. There is no cash and no informal arrangement to manage.
A real person who knows you
Your own account manager and a UK support team who know you, your carer and your situation, not a call centre script.
Help when plans change
If your carer is unwell or away, our team will always do their best to find you vetted cover at short notice.
What clients say
Our Latest Carer Reviews
Margaret N
"Excellent - Lovely lady. My mother is so pleased with the work she does in helping her."
Read the full review
Julia S
"Julia is a highly skilled and companionate carer who is able to give so much of herself and adapt to any situation."
Read the full review
Andres Felipe C
"My son who he is caring for automatically welcomed Andres and can be heard laughing & having fun with Andres."
Read the full reviewQuestions families ask
MS care, answered
It depends on the day. On a good day a carer does very little and stays out of the way. On a bad day there are transfers, a seated wash, meals, medication prepared and prompted, keeping the house cool, the toilet routine, and company without any demands attached. A carer who knows the person’s pattern flexes without being told. A good day and a bad day, side by side.
Book what is needed most weeks and add visits during a relapse. Carers on PrimeCarers are self-employed and booked by the visit, so the arrangement can grow for a fortnight and shrink again. Having a carer already in place, who knows the person, is what makes a relapse manageable. Hourly care and care at short notice.
Raised body temperature slows nerve signals in damaged nerves, so symptoms get worse for a few hours (Uhthoff’s phenomenon). Hot weather, hot baths, exercise and fevers all do it. Cool rooms, cold drinks, a cool shower rather than a bath, and treating infections early all help. A fever with worsening symptoms is a call to the MS nurse.
Hourly visits are £18 to £25 an hour, typically £20, with our fee included. Overnight care from £130 a night. Live-in care starts from £1,050 a week, and complex live-in care (hoisting, catheter care, PEG) from £1,260, typically £1,340. The full cost guide.
PIP (under State Pension age) or Attendance Allowance (over it) are not means-tested and are for the help needed. Council funding follows a needs and financial assessment. NHS Continuing Healthcare can fund everything, including live-in care, where needs are mainly health-related, which in advanced MS they often are. Funding explained.
For progressive MS where transfers, continence or nights need someone there all the time, yes. It keeps a younger person in their own home and, for a couple, together. Complex live-in care from £1,260 a week covers hoisting and catheter routines. Live-in care.
Experience with MS or another fluctuating neurological condition, comfort with transfers and continence care, and the temperament to do less on a good day without feeling redundant. Interview them together: the person with MS knows their own pattern better than anyone. Questions to ask at interview.
New or clearly worse symptoms lasting more than 24 hours (a possible relapse), a fever, signs of a urine infection, a sudden change in bladder or bowel, a fall, or low mood that is not lifting. Sooner is better: relapses and infections are both easier to treat early.
Carers are self-employed and list the conditions they have experience with on their profile, with reviews from families. You choose the carer and interview them for free. How we vet carers.
That is usually the whole aim. Many people with MS are in their thirties to fifties, working, parenting, driving. A carer for the bad days, the mornings, or the tasks that cost too much energy is what keeps the rest of life going. Personal care and companionship.
Guides
Read next
The pages families and people with MS read alongside this one.
- MS relapse cover at short notice
- Heat sensitivity and MS
- MS and work
- Progressive MS and 24-hour care
- MS fatigue and managed days
- Bladder and bowel care with MS
- Mobility aids and the home with MS
- Hourly care: visits from one hour
- Emergency care at short notice
- Personal care
- Live-in care
- Can you get live-in nurses?
- Live-in care for couples
- Respite care
- Home adaptations
- Can carers help with medication?
- Help paying for care
- The cost of care
- Complex care
Someone who knows what a good day looks like
See the carers near you with MS experience, and talk to the ones you like before deciding anything.