MS and care services

Living with multiple sclerosis (MS) can sometimes limit daily living ability and make day to day tasks a challenge. If things are becoming too difficult and you need some extra help, it may well be worth investigating the support available through social care services.

There are a range of care and support options that can be used to make life easier to manage. The values and emphasis of services should be able to help you to be as independent as possible and to give you control over how you are supported. Accessing the support available from your council or local care services could enable you to have more control in your daily life and maintain independence. MS-UK want to make sure that people know where to turn if they need care and support.

For many people with MS, recognising that help is needed with tasks that were previously easy can understandably be a huge emotional challenge. MS-UK holds a directory of private qualified counsellors who have completed our Counselling People with MS training course. If you would like a copy of the directory, please contact our MS-UK Helpline. While we cannot endorse the professionals on our list, we do ensure they are all qualified and have an awareness of MS.

Getting a Care needs assessment

Your local authority or health board should carry out an assessment once it is requested, regardless of the level of need or your financial resources.

To request a care needs assessment, you can find the contact details for your local adult social care department on the government’s website.

The local assessment process may direct you to an online ‘self-assessment’ tool in the first instance. The full assessment is usually carried out by a social worker either in your home or over the telephone.

What is included in the assessment?

Carers UK have detailed and trusted information on needs assessments and support. They have developed different factsheets for each of the home nations. Broadly the assessments will cover your support needs, your wellbeing, and the impact your disability has on your ability to care for yourself. It will include:

  • The things that matter to you (for example, support to take part in religious or cultural activities)
  • Your choices and goals, (for example, if you need hands on support with hobbies or activities or to maintain relationships)
  • Your personal preferences for your day-to-day care
  • If your needs fluctuate, this should also be taken into account
  • An assessment should also consider the needs of anyone that supports you on an unpaid basis

The assessment should look at:

  • Your ability to use and move about your home safely
  • How you maintain your home
  • How you maintain relationships with family and friends
  • Your ability to manage toileting, personal care and dressing
  • Your ability to take part in education, training, work or volunteering
  • Your ability to participate in social activities and use of public transport
  • How you look after children you have responsibility for

If you have significant difficulties or problems with any of the above, it is likely that you will be given a support plan to meet your care needs.

Help during the assessment (advocacy)

If you have issues with the assessment process or have significant difficulty in speaking up and representing your needs to social services, there is likely to be help available from an advocate. Advocates are there to help people speak up and gain their rights and entitlements. Advocacy services are usually free and although funded by the authorities, they are independent of the health and social care system. They can help with social care assessments, challenging decisions and complaints.

The NHS webpages about social care has a page titled Someone to speak up for you (advocate) which although not a comprehensive list for supportive organisations, is still useful. To find an advocate in Scotland it is worth contacting the Scottish Independent Advocacy Alliance whose website has a ‘find an advocate’ function. To find an advocate in Wales it is worth contacting Advocacy Support Cymru or North Wales Advice and Advocacy Association who provide a range of services.

The Disability Rights UK website also provides information about advocacy including links to advocacy agencies around the UK.

The outcomes of the assessment

An assessment of need may have a variety of outcomes for you and care and support packages should look and feel different for everyone. Social care packages should be personalised and tailored to your individual needs and when working well, can be life changing.

The kind of services and support that can be accessed may vary. It may be that you can gain independent living aids, home adaptations, and help from an occupational therapist. It could also be that you may get help in the home, home care (sometimes called domiciliary care) or hands on help from someone to access the community. The assessment will also consider your housing and care needs and you may possibly be able to access housing with support, supported living schemes or residential care.

You may be entitled to some free independent living aids, equipment, or home adaptations (if they cost under £1,000). This can include grab rails, assistive technology, ramps, perching stools for the kitchen or seats for the shower. An occupational therapist from your local authority would be sent to assess and support you.

If you are offered a care and support package, you should have the opportunity to arrange and purchase your own care via a direct payment. It may be helpful to read our Choices booklet on Personal Budgets as this goes into detail about how a direct payment can be used to meet your needs.

You may decide that organising your own care is not for you and let the local authority find a care agency to support you. The Care Quality Commission (CQC) are the body that registers, regulates, and inspects care services in England (whether a residential care home or a home care provider). The CQC have some information all about ‘what you can expect from a good home agency’. This gives a checklist to work through to make sure you are happy with any care provider that works for you.

Care costs

After the care needs assessment is carried out a financial assessment will be arranged. This will see if you are eligible for help towards the cost of care services and whether the local authority will fund towards your care. Rules for means testing currently differ across the nations. MoneyHelper, a government backed website, has some detailed content titled ‘means tests for help with care costs – how they work’. This page covers finding out who is going to pay, how the means test works, being a homeowner, means tests for different types of care and what would be ‘deprivation of assets’, if it appears that someone is attempting to avoid paying for care.

MoneyHelper also have a page titled ‘do I qualify for local council funding for care costs?’. This webpage has a useful and very clear table that gives the upper and lower capital thresholds for care funding for the individual home nations.

Home care charging

In England, Wales and Northern Ireland home care services are either paid for by the person needing support or the Adult Social Care department (in part or in full) after a financial assessment. In Scotland personal care at home is free but some care services, such as support to access the community, are means tested and you are likely to be financially assessed.

In England, Wales and Northern Ireland home care services are either paid for by the person needing support or the Adult Social Care department (in part or in full) after a financial assessment. In Scotland personal care at home is free but some care services, such as support to access the community, are means tested and you are likely to be financially assessed.

Your local Authority or Care Trust will have specific information about their home care charging policy, and they should give you this if you ask for it.

If you are a ‘self-funder’ (someone who funds and arranges their own care) it might be useful for you to know that according to the NHS website, if you are paying privately for home care you can expect to pay approximately £20 per hour.

Care homes and care home costs

Your care needs assessment is likely to talk about a range of support options (such as home adaptations, home care etc.) prior to suggesting that your needs can only be met by registered residential care. It may also be that you need 24-hour specialist care, and a registered residential care home is thought to be the only way to meet your needs. You and your family should still have a degree of choice and control over the homes suggested and their location. In most circumstances, adult social care services should not look to arrange a care home placement far away from your community, friends, and connections.

Care home fees are made up of two parts; accommodation or ‘hotel’ costs which includes your food, heating, lighting and laundry, and care costs which includes personal care, help with washing, dressing, and going to the toilet. When it comes to costs of residential care, they can differ greatly across the country.

If you are funding or are going to be funding your own care, it may be interesting to know that the charity Age UK’s most up to date figures show that on average a place in a care home costs around £800 per week, with nursing home places being more expensive at £1078 per week. When dealing with sums of money on this scale it is always a good idea to get financial advice.

MoneyHelper has some webpages all about how to get financial advice on how to fund your long-term care. This has good links and information about choosing the right kind of financial advisor to meet your needs. The not-for-profit company PayingForCare also has a ‘Find an adviser’ function on their website to help you find someone suitably qualified and in your area. You can also check if a financial advisor is registered within the UK on the Financial Conduct Authority (FCA) Register.

Purchasing and arranging care

There are some care and support services run by not-for-profit charities that may be worth considering. Depending on your age and the area you live in, Age UK run many ‘home help’ type services. These services do not deliver personal care but will help with shopping, cleaning, and domestic tasks.

If you are going to be arranging domiciliary care, (also known as home care) from an agency, the Homecare Association is a membership body for over 2000 home care providers and has a useful guide to choosing care. This guide talks about care standards, how your wellbeing will be protected, costs of care, how to find home care and what questions to ask a home care provider.

Whichever home nation and region you live in, there will almost certainly be online information specific to your area about care provision and the various providers that work in your locality.

In England, The Care Act (2014) places a duty on the local authority to provide up to date and trusted information on the local ‘care marketplace’. Most local authorities have developed websites to meet this duty. Good examples are Hampshire, Newcastle upon Tyne and Northeast Lincolnshire.

The publisher ‘Care Choices’ has an online directory of care homes and home care and publishes regional care service directories for many areas of England. Although these directories are funded by their advertisers, the information the directories contain is specific to each local authority area and written in partnership with local experts.

Nursing homes and nursing care

Both residential care homes and nursing homes provide 24-hour care, however a nursing home will be able to provide higher levels of care and will always have a qualified nurse on-site to provide medical care. This is reflective of some medications, treatments and care that will need regular monitoring and administration from a registered nurse. Nursing homes will be a lot more expensive than residential care homes.

It is possible to get NHS funded nursing care. This is when the NHS funds the nursing care part of your nursing home fees. If you have high level and complex needs that can only be met with nursing care, then it is possible that the whole nursing home fees will be met by the NHS. There is a fund called NHS continuing healthcare (which can also pay for nursing care at home). NHS continuing healthcare should be assessed by a team of health and social care professionals and will look at what help you need, how complex, intense and unpredictable your needs can be.

Finding and checking quality of care

As stated above, the Care Quality Commission (CQC) is the body that registers, regulates and inspects care services in England and has a useful tool on their website that will help you search for care providers (whether a domiciliary care agency or a residential care home). The CQC information on how to ‘find a care home’ allows you to search for care homes by location and will show you the latest inspection reports and ratings, information about care management and the contact details for the home.

The CQC also has a guide to choosing social care services. This brief guide talks you through how to search for care homes and care home agencies and be able to see their inspection reports and their registration status. The guide suggests comparing care services (using inspection reports and ratings as a benchmark) and outlines what you should expect from a care service.

Care Information Scotland has information on how to get care services including care at home and residential care homes. The Care Inspectorate is the body which regulates and inspects the quality of care in Scotland. The Care Inspectorate has a ‘Find a care service’ function on their website where you can use a variety of filters to hone your search by area and type of care.

The Care Inspectorate Wales is the independent organisation that registers, inspects, and improves the quality of services for the people of Wales. You can use their website to see the regulated services inspection reports for each registered care provider. Care Inspectorate Wales also have a ‘care service directory’ that you can use to source support.

The Regulation and Quality Improvement Authority (RQIA) is the body responsible for monitoring and inspecting the quality of health and social care services in Northern Ireland.

If you need help sourcing information specific to your locality, please get in touch with the MS-UK helpline team who will be happy to gather community resources and trusted information on your behalf.

Safeguarding adults

Safeguarding means protecting people’s health, wellbeing and human rights, and enabling them to live free from harm, abuse and neglect. Whoever is providing care has a duty to safeguard their clients. Safeguarding vulnerable adults who receive social care is everybody’s responsibility, but professionals will have additional duties of care.

If you are concerned about the safety of yourself or anyone receiving care, it is suggested you contact the service provider in the first instance. If you are uncomfortable going to the care provider with your concern, you can also contact social services at your local council. You should not be worried about raising a concern about someone you feel is vulnerable and at risk. The local authority will take your concern seriously and investigate. If you feel a crime has been committed, you should contact the police.

The Ann Craft Trust is a UK-wide charity whose purpose is to minimise the risks of abuse to disabled children and adults. They have a webpage with a directory that can help you find your nearest Safeguarding Adults Board.