How much does care cost for people living with multiple sclerosis?

Living with multiple sclerosis (MS) often involves various types of care, from occasional assistance with daily tasks to full-time residential care. You may prefer to receive care in your own homes to help retain independence and a familiar environment. If that’s not possible, understanding the costs of home-based and residential care, as well as the financial support available, can help you plan effectively for moving to residential care.

Home care costs

This type of care can range from a few hours of support each week to full-time live-in care. The costs of home care vary depending on the level of care needed, the location, and whether it is provided by local authority services or private providers.

Hourly rates for carers

The average cost of hiring a carer in the UK varies depending on where you live. For example

• Light support of few hours a week for tasks like cooking, cleaning, or shopping could cost between £60 and £150 per week
• Personal care, including support with dressing, bathing, and mobility might require more hours, increasing costs to £500 or more per week
• Live-in care, where round-the-clock support is needed, can cost between £800 and £1,500 per week

Funding home care

There are several ways to cover the costs of home-based care

Local authority funding

If your needs meet certain criteria, your local council may help cover care costs. A financial assessment will determine your contribution

Direct payments

You can receive funds directly from your local council to arrange your own care, giving you more control over the services you choose

NHS Continuing Healthcare

If you have complex health needs, you may qualify for NHS Continuing Healthcare, which covers the full cost of care, either at home or in a care home

Other costs associated with home care

In addition to carer wages, you might need to consider other costs, such as

Adaptations

installing grab rails, stairlifts, or a wet room can cost from a few hundred to several thousand pounds. Local authorities may offer Disabled Facilities Grants to help cover these expenses

Equipment

items like wheelchairs, hoists, or adjustable beds may be needed, with costs ranging from a few hundred to several thousand pounds. Some equipment might be available through the NHS or charities

Residential care costs

For those requiring a higher level of support, residential care homes or nursing homes can provide this. These facilities offer round-the-clock care, including medical support in nursing homes.

In residential care homes, fees typically range from £600 to £1,200 per week. For nursing homes which provide medical care, the costs are higher.

Financial assessment

If you move into a care home, your local authority will conduct a financial assessment to determine how much you need to contribute. If you have assets above £23,250 you will need to pay the full cost of care. For assets between £14,250 and £23,250 you will contribute part of your income and capital. If your assets are below £14,250 only your income will be considered.

If you own a property, its value may be included in the assessment, but some exclusions apply, such as if a spouse or dependent is living there.

Combining home and residential care

For some people, a mix of home care and short-term residential care (respite care) works well. Respite care allows carers to take a break while ensuring their loved one receives the necessary support. Costs for respite care are typically similar to residential care fees.

Financial support and options

Benefits 

Those living with MS may be eligible for benefits such as Personal Independence Payment (PIP) or Attendance Allowance to help cover care costs.

Deferred payment agreements

If your assets include property, some councils offer deferred payment agreements, allowing you to delay care home payments until the property is sold.

Third-party top-ups

If you choose a care option that exceeds the local authority’s standard rate, a third party (often a family member) may pay the difference.

Tips for managing care costs

Plan ahead

Research the care options available and start budgeting for potential expenses.

Seek advice

Speak with organisations like MS-UK or Citizens Advice for support in navigating benefits, funding, and care options.

Explore grants

Look into grants for home adaptations or equipment to reduce out-of-pocket costs.

Involve loved ones

Open discussions with family members can help share the financial and emotional load.