The short answer
- The gaps between the visits are what to look atVisits cover fixed points in the day. Once help is needed at moments nobody can put in a diary, a fifth visit does not solve it.
- There are five ways to cover a whole dayMore visits, a carer at night, one live-in carer, two carers, or a care home. They cover different hours and cost very different amounts.
- Past 35 hours a week, live-in care costs less than visitsFour visits a day is 35 hours a week, £630 to £875. Live-in care starts at £1,050 a week, and the carer is there at night as well.
- Ask about NHS Continuing Healthcare before you payIt is not means tested, it turns on assessed needs rather than a diagnosis, and it can pay for care in your own home.
Figures are what carers on PrimeCarers charge, our fee included: £18 to £25 an hour, and live-in care from £1,050 a week. Agencies charge £28 to £35 an hour.
When visits stop covering it
The signs that a few visits a day no longer cover the day
With secondary progressive or primary progressive MS the symptoms build over years rather than arriving in episodes, so there is rarely one day when the care obviously has to change. The same package simply leaves more and more of the day uncovered. These are the changes that point at rethinking the arrangement rather than topping it up.
Has any of this become true in the last few months?
0 of 11 ticked
Moving about the house
Nights
Bladder, bowel and swallowing
The hours in between
Ticks inside one group usually point at one fix, such as a night carer or a review of the transfers. Ticks spread across several groups mean the shape of the arrangement, rather than the hours in it, has been outgrown. A change that arrived over days rather than months is a different question, and getting care in place at short notice during a relapse covers what to ask for then. Swallowing difficulties are assessed by a speech and language therapist, and the NHS page on swallowing problems lists the signs. If transfers are what has changed, when a transfer needs two carers explains how that is decided; if it is the bladder and bowel side, bladder and bowel care with MS covers who does what. And if the question underneath is whether home is still the right place, when home care stops being enough takes it on directly.
How cover grows
From two visits a day to somebody there at every hour
It helps to see the day itself rather than a list of services. Each bar below is one day, from 7am on the left round to 7am the next morning, and the cost beside each stage is what that week comes to if you book carers directly.
How cover grows, one day at a time
Each bar is a single day, running from 7am on the left to 7am the next morning on the right.
- 1
Two visits a day
Getting washed and dressed takes help, and so does getting to bed. The rest of the day is manageable.
- What it covers.
- Two fixed points, fourteen hours a week.
- What it leaves.
- Nothing between the visits, and nothing at night.
- Cost.
- £252 to £350 a week
- 2
Four visits a day
Transfers, the toilet and meals all need help, and they need it at more times of the day.
- What it covers.
- Four points in the day, 35 hours a week.
- What it leaves.
- Three or four hours alone between each visit, and the whole night.
- Cost.
- £630 to £875 a week
- 3
Visits and a night carer
The nights are broken more than once, by the toilet, by pain or by needing to be turned.
- What it covers.
- The same four visits, and a carer in the house from bedtime to morning.
- What it leaves.
- The daytime hours between the visits are still uncovered.
- Cost.
- £1,540 to £1,890 a week
- 4
One live-in carer
Help is needed at moments nobody can put in a diary, and being alone in the house has stopped feeling safe.
- What it covers.
- One carer living in the house, there through the day and sleeping there at night.
- What it leaves.
- The carer sleeps, so a night that needs somebody awake needs a second arrangement. They also take time off in the day and weeks off in the year.
- Cost.
- £1,050 to £1,400 a week, and £1,260 to £1,750 where hoisting or catheter care is part of the day
- 5
Somebody awake at every hour
The nights need a carer who is up rather than one who can be woken, or every transfer needs two people.
- What it covers.
- A live-in carer with waking nights added, or two carers covering a day shift and a night shift between them.
- What it leaves.
- The cost, and the number of people coming through the house.
- Cost.
- £2,156 a week with waking nights on top of live-in care, or £2,562 to £2,632 for two carers
Costs are what carers on PrimeCarers charge, with our fee included. Carers set their own rates, so a week is priced by the carer you choose rather than by us.
The step that surprises people is the one between stage two and stage four. Four visits a day looks like a lot of care and costs £630 to £875 a week, but the person is on their own for nineteen hours out of every twenty-four. One live-in carer costs £1,050 to £1,400 a week and closes almost all of that. At about 35 hours a week the two arrangements cost roughly the same, and when live-in care becomes cheaper than visits works that through with the hours written out.
Five ways to cover a day
The five arrangements, side by side
Each of these covers a different part of the twenty-four hours, and one question separates them: who is in the house at three in the morning, and are they awake?
| At 3am | A week | What to watch | |
|---|---|---|---|
| More visits in the day | Nobody | £630 to £875 for 35 hours | Works while help is needed at set times. Adds nothing to the nights. |
| Visits and a carer at night | A carer, asleep unless called | £1,540 to £1,890 | For when the nights are the problem and the days are manageable. A waking night costs more. |
| One live-in carer | A carer, asleep in the house | £1,050 to £1,400, or £1,260 to £1,750 with hoisting or catheter care | Needs a spare room, and a carer who can manage the transfers alone. Their time off has to be covered. |
| Two carers between them | A carer, awake | £2,562 to £2,632, or £2,156 as waking nights added to live-in care | What a two-person transfer or a fully awake night requires, and the largest bill of the five. |
| A care home | Staff on the premises | £1,100 to £1,600, and about £1,410 where nursing is included | Staff and equipment are already there. The person leaves their own home, and a couple are usually separated. |
More visits in the day
- At 3am
- Nobody
- A week
- £630 to £875 for 35 hours
- What to watch
- Works while help is needed at set times. Adds nothing to the nights.
Visits and a carer at night
- At 3am
- A carer, asleep unless called
- A week
- £1,540 to £1,890
- What to watch
- For when the nights are the problem and the days are manageable. A waking night costs more.
One live-in carer
- At 3am
- A carer, asleep in the house
- A week
- £1,050 to £1,400, or £1,260 to £1,750 with hoisting or catheter care
- What to watch
- Needs a spare room, and a carer who can manage the transfers alone. Their time off has to be covered.
Two carers between them
- At 3am
- A carer, awake
- A week
- £2,562 to £2,632, or £2,156 as waking nights added to live-in care
- What to watch
- What a two-person transfer or a fully awake night requires, and the largest bill of the five.
A care home
- At 3am
- Staff on the premises
- A week
- £1,100 to £1,600, and about £1,410 where nursing is included
- What to watch
- Staff and equipment are already there. The person leaves their own home, and a couple are usually separated.
Home care figures are what carers on PrimeCarers charge, our fee included. Care home figures are typical UK weekly fees for comparison, not our prices. Under the agreement between you and the carer, bank holidays are charged at one and a half times the carer's rate and Christmas Day at twice.
Where live-in care is the stronger answerSection titled Where%20live-in%20care%20is%20the%20stronger%20answer
Live-in care puts somebody in the house for the parts of the day nobody can schedule, which is what progressive MS tends to need. The person stays in the home the equipment has already been fitted to, and a couple stay together, which a care home place rarely allows. It also keeps the care in one pair of hands: the way MS fatigue shapes a day, heat sensitivity and the way a transfer is best done are particular to one person. Live-in care for couples covers the pricing for two, and live-in care for a younger adult is written for somebody who works, parents or studies.
Where it does not winSection titled Where%20it%20does%20not%20win
A live-in carer sleeps at night. They will get up once or twice if needed, but a night that needs somebody up repeatedly is a different arrangement at a different price, which waking night or sleeping night prices out. One carer cannot do a two-person transfer either, so if the moving and handling plan calls for two people, live-in care alone will not cover it. Below about 35 hours a week it costs more than the visits it replaces, and it needs a room for the carer. It is not nursing care: catheter changes, PEG feeds and wound care sit with district nurses or a nurse-led package, which nurse-led or carer-led complex care explains. Live-in care where someone is hoisted is the page for where you are now.
Equipment and adaptations
The equipment and the changes to the house
The equipment decides how much of any arrangement is possible. A transfer that needs two people with a sling may need only one with a ceiling track. Start this before the care, because the assessments and the building work take time.
A hoist, and the plan that goes with it
Occupational therapist or physiotherapist
A profiling bed and pressure relief
Community equipment service
A wet room or level-access shower
Disabled Facilities Grant
Continence supplies and the daily kit
Continence service and the district nurse
Ask the council for an occupational therapist's visit at the same time as the care needs assessment, because the two lean on each other. Our guide to home adaptations that reduce the need for care sets out the order the work happens in, and the right equipment to aid the elderly covers the smaller items. The government guidance on Disabled Facilities Grants lists what it covers, from ramps and grab rails to a stairlift or a level-access shower. It can also cover an extension such as a downstairs bedroom, which matters if the stairs have become difficult or a live-in carer needs a room, and it does not affect any benefits you receive. The work takes months, so start it while the current arrangement is still holding.
Who to ask, and who pays
The people to involve, and the funding to test first
The free assessments come first, because each can change what you end up paying and they all take a few weeks. NICE guidance says the annual MS review should cover personal care needs, social care needs and access to adaptations and equipment at home, so these are reasonable things to raise at an appointment.
- 1
Tell the MS nurse what has changed
First callThe MS nurse is the first call for a change in symptoms, and refers on to physiotherapy, occupational therapy, the continence service or a speech and language therapist. NICE says everyone with MS should have a comprehensive review of all aspects of their care at least once a year, so ask when the next one is due. - 2
Ask the council for a care needs assessment
Free, and anyone can askA social worker or occupational therapist goes through how everyday tasks are managed now. The assessment is free, although a financial assessment follows if the council is going to pay. Ask for a carer's assessment for the family carer at the same time. - 3
Ask for an NHS Continuing Healthcare checklist
Not means testedCare funded entirely by the NHS for adults whose needs are mainly health needs. It turns on assessed needs rather than a diagnosis, the full assessment is done by a team of at least two professionals from different professions, and it can pay for care at home. Ask the MS nurse, the GP or the hospital team to complete the checklist. - 4
Look at carers and talk to two or three
Free to search and to interviewRead profiles and rates, then speak to the ones you like. Tell them plainly what the transfers, the nights and the continence routine involve now, and what they may involve in a year.
The NICE guideline on managing MS in adults also asks clinicians to discuss social care needs with the person and their family and refer them to social services, so the MS nurse can start that for you. The NHS page on continuing healthcare explains the checklist, and our guide to NHS Continuing Healthcare covers what to do if the answer is no. If the council may pay towards the care, local authority funding explains the financial assessment and direct payments explain how council money can be used to book a carer of your own choosing. Attendance Allowance, and Personal Independence Payment below State Pension age, are not means tested and are worth claiming alongside all of it. For MS itself rather than for care, the MS Trust is a UK charity for people living with MS.
Carers on PrimeCarers are self-employed, and you agree the hours, the rate and the routine directly with them. Before a carer appears on the site we check their identity and their right to work, we check an enhanced DBS on the Update Service, and we interview them online. We do not check qualifications, training or references, and there is no way to search for them: what a carer says about their experience with MS, hoists or catheters is their own account on their profile, for you to ask about. Carers are insured while they work. We do not provide nurses, and nursing tasks stay with the NHS unless a nurse has formally delegated them, which delegated healthcare tasks explains. Complex care is the pillar for a day that involves hoisting, a catheter or a PEG.
Questions
Questions families ask about round-the-clock care
No. Live-in care is one carer living in the home, there through the day and sleeping there at night, ready to get up if needed. 24-hour care means somebody is awake at every hour, which takes at least two people. Live-in care runs £1,050 to £1,400 a week on PrimeCarers, and two carers covering a day shift and a waking night between them comes to £2,562 to £2,632. Live-in care or 24-hour care sets the two out in full.
At around 35 hours a week. Four visits a day is 35 hours, or £630 to £875 on PrimeCarers, and live-in care starts at £1,050 a week with the carer in the house overnight as well. Below that, visits cost less. Above it, live-in care costs about the same and covers more of the day. The cost of live-in care has the breakdown.
It depends on the moving and handling plan written by the occupational therapist or physiotherapist, and on the equipment in the house. Some hoisted transfers are assessed as a one-person task, particularly with a ceiling track. Others need two people, and one live-in carer cannot cover those however experienced they are. Get the plan reviewed before you settle on an arrangement. Transfers, hoists and two carers goes through how it is decided.
It can. NHS Continuing Healthcare is care funded entirely by the NHS for adults whose needs are mainly health needs, and it is not means tested. Eligibility turns on assessed needs rather than a diagnosis, so progressive MS does not settle it either way. It starts with a checklist, and the full assessment is carried out by a team of at least two professionals from different professions. It can fund care in your own home as well as in a care home. How to ask for an assessment.
Not as nursing care. PrimeCarers does not provide nurses and does not check qualifications or training, so clinical tasks stay with the district nurses unless a nurse has formally delegated the task and trained the person doing it. Carers who have supported someone with a catheter or a PEG will say so on their profile, and that is their own account for you to check with them. Nurse-led or carer-led care explains where the line sits.
You agree the arrangement directly with the carer, and either side can end live-in care on seven days' notice once the carer has worked 168 hours, which is seven days living in. Before that the notice is 48 hours, and for hourly visits it is 48 hours throughout. A visit you cancel is payable in full, unless the reason is unplanned hospitalisation or illness, or the carer agrees another reason. PrimeCarers charges nothing to cancel and does not set the terms between you and the carer. The client agreement has the wording.