Care that flexes with multiple sclerosis

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 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 £19.47, with our fee included. Overnight care from £130 a night. Live-in care starts from £1,050 a week. Where a carer’s day includes hoisting, or tasks a nurse has delegated such as catheter or PEG care, carers usually charge more, from about £1,260, typically £1,340. We do not check training for these tasks: the nurse or therapist trains and signs off the carer for this person, and the insurance we arrange does not cover clinical procedures. 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. Where the day includes hoisting or catheter routines, live-in carers usually charge from about £1,260 a week. Catheter care needs a nurse to train and sign off the carer; we do not check training, and the insurance we arrange does not cover clinical procedures. 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. What we check, and what we don’t.

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.