Care adapts as MND progresses
Needs can change month to month. One carer who knows the person can adjust support gradually rather than starting from scratch with a new team each time.
✧ Our services
Live-in Care for Motor Neurone Disease (MND)
Motor neurone disease can change needs quickly. Live-in MND care puts an experienced carer in the home who adapts week by week, works alongside the specialist MND team, and helps your family stay together at home.
- Adapts as needs change Care plans reviewed as MND progresses
- From £1,300 a week Or two carers from £2,600 when nights are busy
- Alongside your MND team Neurologist, specialist nurses, SLT, OT and hospice
- Start in 24–48 hours When things change faster than expected
What is MND care at home?
Motor neurone disease (MND), also known as ALS, is a progressive condition that affects the nerves controlling movement. Over time it can weaken the muscles used for walking, using the hands, speaking, swallowing and breathing. Up to 5,000 adults in the UK live with MND at any one time, according to the MND Association. Because it can progress quickly, needs often change month by month.
Live-in MND care gives one-to-one support at home through each of those changes, so the person can stay in familiar surroundings with their family, and so family members can spend time together rather than only providing care.
How a live-in carer supports someone with MND
- Mobility and positioning — help moving, transferring and changing position, using hoists, riser-recliner chairs and profiling beds as they become needed.
- Personal care — washing, dressing and continence care as hand and arm strength reduces.
- Eating, drinking and swallowing — meals prepared to the texture advised by the speech and language therapist, and support with feeding tube routines where a trained carer and the nursing team have agreed it.
- Communication — patience, time and familiarity with communication aids and voice-banking devices.
- Breathing support — many people with MND use non-invasive ventilation, especially at night. Carers are trained on the individual's equipment by the respiratory team.
- Fatigue and comfort — pacing the day, managing cramps and discomfort, and making sure rest is possible.
- Emotional support — company and a steady presence for the person with MND and for their family.
Working with the MND multidisciplinary team
People with MND are usually supported by a specialist team: a neurologist, MND nurse or coordinator, physiotherapist, occupational therapist, speech and language therapist, dietitian, respiratory team and, often, the local hospice. A live-in carer does not replace any of them. They carry out the day-to-day routines each professional recommends, report changes promptly, and help the family keep on top of appointments. Clinical tasks remain with the nursing team unless a carer has been specifically trained and signed off.
When two carers are needed
As MND progresses, some people need help to reposition more often than one carer can safely manage — more than four or five times a night, or need someone awake to manage ventilation or secretions. At that point one live-in carer cannot safely cover both days and nights, and we arrange two carers so someone is always awake, from £2,600 a week. We review this regularly so the level of care keeps pace without being more than is needed.
Planning ahead and end of life care
Many people with MND make an advance care plan early, recording their wishes about treatment, where they want to be cared for and who should make decisions. If the wish is to stay at home, live-in care, together with the hospice and district nurses, can make that possible. NHS Continuing Healthcare, including the Fast Track route, often funds care for people with MND as needs become complex.
Paying for MND care
Live-in MND care starts from £1,300 a week. Many people with MND become eligible for NHS Continuing Healthcare, which funds care in full, and should ask for an assessment early. PIP or Attendance Allowance, council support and grants from the MND Association may also help. See our funding guide.
Why MND needs care that plans ahead
With many conditions, care can respond to changes as they happen. With MND, needs can change faster than equipment can be ordered or carers can be trained, so good care looks a few months ahead. That means talking early with the MND team about what is likely to come next, arranging equipment such as riser-recliner chairs, hoists and communication aids before they are urgently needed, and matching carers who can grow with the person's needs. It also means making sure the house works for later stages, such as a downstairs bedroom or a level-access shower. Planning ahead is not pessimism; it is what allows people to stay at home.
Communication and voice banking
Many people with MND find their speech affected. Voice banking — recording your own voice while speech is still clear, so that a communication device can later speak in a voice that sounds like you — is something the MND team may suggest early. Communication aids range from simple letter boards to eye-gaze computers. A carer who has lived alongside someone for months becomes skilled at understanding them, which is one of the strongest reasons for consistent live-in care rather than a rota of different faces.
Emotional support for the person and the family
An MND diagnosis is devastating, for the person and everyone around them. Alongside practical care, families need space to talk, to make memories and to be together rather than only managing tasks. Live-in care takes on much of the practical load, so partners and children can spend time as family. The MND Association offers emotional support, information and local groups, and many hospices offer counselling and support for families both before and after a death.
Staying at home through every stage
Most people with MND say they want to stay at home. With the right combination — a live-in carer or two, the specialist MND team, district nurses, the respiratory team and the local hospice — this is achievable for many. NHS Continuing Healthcare is often available as needs become complex, and the Fast Track route can be used when someone is nearing the end of life. We work with each of these teams to make sure care at home remains safe, comfortable and centred on what the person wants.
Nutrition and weight with MND
Maintaining weight is important for people with MND, but it can become difficult as swallowing and hand function change and eating becomes tiring. A dietitian can advise on high-calorie foods and drinks, texture changes and supplements. Some people consider a feeding tube, often a gastrostomy, to help with nutrition, fluids and medication. It is usually recommended that this is discussed early, while the person is well enough for the procedure. Carers support mealtimes, prepare food as advised and follow the agreed plan for any feeding tube.
Further reading and sources
Why families choose it
What live-in MND care gives your family
Speech and communication are understood, not guessed at
As speech becomes harder, a consistent carer learns how the person communicates — gestures, a communication aid, eye movement — far better than rotating staff ever could.
One-to-one attention as physical needs increase
As mobility, swallowing and breathing are affected, having someone present continuously matters more than at almost any other stage of care.
Working alongside the MND team
Carers support the plan set by the neurologist, MND nurse specialist and physiotherapist, rather than working in isolation from the wider care team.
Family get to be family
With daily physical care handled by a trained carer, relatives can spend the time they have together as visitors and loved ones, not full-time nurses.
Is it right for us?
When families arrange MND care at home
If one of these sounds familiar, MND care at home is worth a conversation.
A recent MND diagnosis and an uncertain path ahead
Families often call soon after diagnosis to understand what support looks like now and how it can flex as things change.
Mobility has declined and falls have become a real risk
When walking, transfers or getting up from a chair become unsafe alone, live-in care closes that gap immediately.
Speech is becoming difficult to understand
A consistent carer who has learned how someone communicates reduces the frustration and isolation this causes enormously.
Swallowing or breathing difficulties have started
These changes often prompt a conversation with the MND nurse about the right level of support at home.
The main family carer is exhausted
MND care is demanding and can escalate quickly. Handing daily care to a professional, even short term, is often overdue rather than premature.
What a carer does
How a live-in carer helps with MND
Every care plan is built from these, weighted to whatever matters most in your household.
Personal care that adapts
Washing, dressing and daily support adjusted continually as strength and mobility change.
Communication support
Patience and familiarity with how the person communicates, whether that is speech, gesture or an aid.
Working with the MND care team
Support that fits around the plan set by the neurologist, MND nurse specialist and therapists.
A settled, familiar home
Meals, housework and daily routine kept running, so home stays home for as long as possible.
Related services
Other types of live-in care we arrange
Live-in care is not one fixed thing. These are the variations families most often need — and we will tell you which one actually fits.
24 hour live-in care
For people who need attention repeatedly through the night. Covers waking nights and, where nights are consistently broken, two carers in rotation.
Respite care
A professional steps in so a family carer can rest, from a few days to several weeks. Also the easiest way to try live-in care before committing.
Emergency home care
For a hospital discharge, a fall, or a carer suddenly unable to continue. We can often have someone in place within 24 to 48 hours.
Overnight care
Cover through the night only, where days are manageable but nights are not. Useful after a hospital stay or while a diagnosis settles.
Dementia care
Carers experienced in memory loss, sundowning and changes in behaviour. Familiar rooms and one consistent face matter more here than anywhere.
Palliative care
Comfort-focused support at home, working alongside district nurses and the GP so symptom control and dignity come first.
End of life care
Support for the final months, weeks or days at home, for the person and for the family around them.
Companionship care
Where the need is company and daily structure rather than personal care. Often the first step, before anything more is required.
What you get
What MND care includes, and what it doesn't
Being straight about the boundaries saves everyone a difficult conversation later.
Included in the weekly fee
- Personal care adapted to changing mobility and dexterity
- Support with communication aids and understanding non-verbal cues
- Assistance at mealtimes, including modified diets where advised by a speech and language therapist
- Medication prompting and administration
- Positioning and transfer support within single-carer limits
- Liaison with the MND nurse specialist, GP and physiotherapist
- Meal preparation, light housework and laundry
- Companionship and emotional support for the person and family
Not included
- Nursing tasks requiring a registered nurse — district nurses and the MND team continue to visit
- Non-invasive ventilation management beyond what is agreed with the clinical team
- The carer's own food — the household provides everyday meals
- Two-person or hoist transfers as mobility declines (that is our Advanced plan)
Compared honestly
MND care at home, a nursing home, or visiting carers?
The three realistic options, side by side. We will tell you if one of the others suits you better.
| Live-in care | Residential care home | Visiting care | |
|---|---|---|---|
| Typical weekly cost, one person | From £1,200 | £1,100 – £1,600 | £300 – £900 |
| Typical weekly cost, a couple | From £1,200 (one carer) | £2,200 – £3,200 (two places) | Varies by hours |
| Staff-to-person ratio | One-to-one | Shared across residents | One-to-one, but only during visits |
| Same carer each day | Yes | No — shift rota | Rarely |
| Stay in your own home | Yes | No | Yes |
| Overnight cover | Yes | Yes | No — unless booked separately |
| Couples stay together | Yes | Often not possible | Yes |
| Pets can stay | Yes | Almost never | Yes |
| Visitors any time | Yes | Visiting hours | Yes |
Care home figures are typical UK ranges for 2026 and vary considerably by region and by whether nursing care is included. We quote our own prices exactly; always confirm a care home's fees directly with them.
Our carers
Who will your MND carer be?
The single biggest worry families raise, and rightly. You choose the carer from matched profiles, and you can speak to them by video call before deciding anything.
Enhanced DBS
On every single carer, checked before introduction
In person
Every carer is interviewed, not just screened on paper
You choose
Profiles sent to you — including a video call first
24–48 hrs
How fast we can move in an emergency
Our carers
The carers who provide MND care
Our carers are spread across the UK, supported by regional care managers. Every one is interviewed in person, enhanced DBS checked and reference-checked before they are ever introduced to a family — and you choose who moves in.
- Interviewed face to face, never hired on paperwork alone
- Enhanced DBS checked, with references verified
- You meet and approve your carer before they start
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Patience
Live-in carer
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Refiloe
Live-in carer
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Monica
Live-in carer
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Vistorine
Live-in carer
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Brenda
Live-in carer
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Gladys
Live-in carer
How it works
Arranging MND care in three steps
Tell us what you need
A friendly, no-obligation call to understand the situation, explain how the care works and give you an estimated weekly cost.
Choose your carer
We send profiles of available carers matched to your needs. You can speak to them on a video call before deciding.
Care begins at home
Your carer moves in and support starts, with a named care manager checking in regularly to make sure it's working.
Free callback
Prefer we call you?
Leave your number and a care manager will call you back — usually within an hour, and always free.
- No obligation. A conversation, not a sales call — and never a call centre.
- A real care manager. Someone who arranges care every day, who can answer properly.
- Just two details. Your name and number — we don’t need an email address.
Or call us now on 0800 368 8558 Lines open 8am–10pm, seven days a week
Common questions
Questions about motor neurone disease care
What families ask us before arranging care.
Not seeing your question?
Our care managers answer these every day. A no-obligation call takes about ten minutes.
0800 368 8558Lines open 8am–10pm, seven days a week See all questionsHow much does MND care at home cost?
Live-in MND care starts from £1,300 a week. When help is needed through the night as well as the day, two carers are required, from £2,600 a week. Many people with MND qualify for NHS Continuing Healthcare.
Does NHS Continuing Healthcare pay for MND care?
Often, yes, as needs become complex. Ask the MND nurse, GP or social worker for a CHC assessment early, and ask about the Fast Track route if the condition is progressing rapidly.
Can a carer manage a feeding tube or ventilator?
These are clinical tasks. Carers can support routines where they have been trained on the person's own equipment and signed off by the nursing or respiratory team; otherwise the nurses carry them out.
Can someone with MND stay at home until the end?
Many people with MND are cared for at home until the end of life, with live-in carers, district nurses and the local hospice working together.
How quickly can MND care be arranged?
Usually within 24 to 48 hours when needs change suddenly. For planned care we take a little longer so we can match a carer with MND experience.
What support is there for families affected by MND?
The MND Association offers a helpline, local support and grants. Live-in care also gives family members time to be together rather than only providing care.
What is voice banking for MND?
Voice banking means recording your own voice while speech is still clear, so a communication device can later speak in a voice that sounds like you. The MND team can advise on starting it early.
How quickly do care needs change with MND?
It varies greatly, but needs can change over weeks or months rather than years. That is why MND care plans look ahead and equipment is arranged before it becomes urgent.
Can live-in carers support someone using an eye-gaze communication device?
Yes. Carers learn to use the person's communication aids alongside them, from letter boards to eye-gaze computers. Because a live-in carer is with the same person every day, they become skilled at understanding them as speech changes.
Is there support for families after an MND diagnosis?
Yes. The MND Association offers a helpline, local groups and grants, and many hospices provide counselling and family support. Live-in care also frees family members to spend time together.
Transparent pricing
How much MND care costs
One weekly fee covering the agreed care plan. No hidden charges for everyday care.
Read next
Guides for families arranging MND care
End of Life Live-In Care: Compassionate Support in a Difficult Time
Read guide →
Live-in Care vs. 24-Hour Care: Understanding the Differences
Read guide →
Will NHS pay for live-in care?
Read guide →Related care
Care often arranged alongside MND care
Neurological Conditions Care
There are two types of nervous systems, the central nervous system, and the peripheral nervous system. The central nervous system is composed of the brain and spinal cord, and the peripheral nervous system is composed of nerves that branch out of the spinal cord and extend to the other body parts.
Palliative Care
Palliative Care at Home is a step taken to improve the quality and wellness of people's lives, including adults, children, and families that are faced with problems that may be a threat to their lives. Caring for these people demands their loved ones and relatives to remain closer to them all the time to provide them with the necessary care. Shouldering these responsibilities can very, very time-consuming and tedious. Due to this, you may have some of your activities cut short to concentrate on providing the care they require.
24 Hour Live-in Care
24 hour live-in care means someone is in the home around the clock — including through the night, when help is most often needed and least often available.
Multiple Sclerosis Care
Multiple sclerosis or MS is a nervous system pathology characterized by nerve fiber damage. With a debilitated nervous system, the person suffers from physical disabilities and a wide range of other symptoms such as mobility problems, vision loss, fatigue, numbness and tingling sensations, weakness, muscle stiffening and spasms, and cognitive function loss.
End of Life Care
What is end of life care? End of life care is health care for a person who has been diagnosed with a terminal illness and is nearing his death every day, or it can be an aged person who is enjoying his last days and weeks in the world. Naturally, this type of care has to be of the live-in kind, in the precious comfort of one’s home. End of life care at home is undoubtedly a sensitive and touchy job and needs someone who understands what a person deserves in the near-death days of his life.
Near you
MND care in your area
Local pages cover how care is regulated and funded where your relative lives.
Where we work
Motor Neurone Disease Care across the UK and Ireland
We arrange care in 850+ towns and cities. Choose your area for local pricing, funding and how care is regulated where you live.
- Carers travel to you — they move into the home rather than driving from a local branch, so rural and coastal areas are covered too.
- The same weekly price everywhere — care is priced on the support needed, never on your postcode.
- Care can start in 24–48 hours in most areas, and often the same day after a hospital discharge.
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Can’t see your area? Call 0800 368 8558 — we almost certainly still cover it.