Support for your care needs

A care needs assessment looks at what help you or someone you care for may need to live as independently as possible. Help may include healthcare, equipment, or care at home. For example:

• Help with cleaning, cooking, or shopping
• Help with personal care, such as washing, dressing, or managing medication
• Equipment and home adaptations
• Day centres or community activities
• Parenting support

If you have care needs, you can ask for an assessment yourself. Or a family member, friend, carer, or health professional can apply for you. If your child has care needs, you can ask for an assessment of their and the family’s needs.

Applying for a care needs assessment

You can ask social services for a free care needs assessment for yourself or someone else. You can contact them through your local council. If you live in Northern Ireland, you can contact them through your local Health and Social Care trust (HSCNI).

We’ve included links to local councils and HSCNIs at the end of this page.

Getting ready for a care needs assessment

The assessor should contact you to arrange a time and place for the assessment. Let them know if you have any communication needs. For example, would a face-to-face meeting be easier for you than an online assessment?

It can help to have a friend or family member with you during the assessment. They can offer support, take notes, and speak on your behalf if you’d like them to. Or you can ask the council or HSCNI for an advocate – someone who can help you express your views. There’s more information about advocates further down this page.

Before the assessment, you might want to think about what activities you need help with and how this affects your wellbeing. You could keep a diary for a week to record times when your condition has made a task or activity difficult. The assessor will need to know how this affects your independence, your mental health, and your relationships.

Have a look at your local council or HSCNI website for information about the assessment. They should list the criteria they use to decide whether you qualify for support.

What happens during a care needs assessment

You may have your assessment in your home, over the phone, or online. The assessor may be a social worker, occupational therapist, nurse, or other social care professional.

They’re likely to ask you about:

• How your muscle wasting condition affects your daily life and wellbeing
• Which tasks you need support with
• What’s important to you – for example, seeing friends, going to work, or learning a new skill
• The help you already get from family, friends, or carers, and how long that support will be available

During the assessment, information is also collected from the health and social care professionals involved in your care. This helps make sure your physical health, mental health, and social care needs are fully understood and considered.

What happens after a care needs assessment

If you qualify for support, you’ll get a care and support plan. The council or HSCNI should give you a copy. This outlines how they plan to meet your needs. They may provide some services themselves, or through other organisations. You can also ask for direct payments so you can choose services yourself. MoneyHelper has information about direct payments.

If you already have support to meet some of your needs, the council may not provide these services. But it’s still important to include these needs in your care and support plan.

Your care and support plan should be reviewed regularly:

• It should be reviewed within six to eight weeks of being put in place or updated
• After that, it should be reviewed at least once a year, or more often if needed

Regular reviews help make sure your plan still reflects your needs. If your needs change or you feel your plan is not working, you can ask for a review at any time.

If you do not qualify for support, the council or HSCNI should give you information about where else you can get support. For example, charities and local support services.

If you disagree with the decision

If you do not qualify for support, you can ask the council or HSCNI to explain why. If you’re not happy with the explanation, you can ask them for a copy of their complaints procedure.

Carers UK have a useful guide on how to complain about a care service.

If you or someone you care for qualifies for care support, your local council or HSCNI may do a means test. This is to find out how much they will pay towards the care costs. They may provide some services free of charge depending on your situation.

You do not need to have a means test, but if you do not, you will need to pay the full cost of your care.

If you qualify for financial help

If the council or HSCNI agrees to help with costs, they’ll offer you a personal budget. This is the amount they will give you towards your care costs.

You can choose how to use your personal budget:

• Ask your council or HSCNI to arrange care for you
• Get direct payments from the council or HSCNI to use to arrange your own care
• Have a mix of both options

How much you may need to pay

The council or HSCNI will look at your income and savings. If you have more than a certain amount they’ll work out how much you need to pay towards your care.

They must leave you with enough money to pay for daily living.

Before having a means test, it’s a good idea to make a list of any costs related to your condition (like specialist equipment or transport). This can help them make a fair decision.

Depending on your situation, the council or HSCNI may:

• Cover the full cost of your care
• Pay for some of your care and ask you to pay the rest
• Decide that you need to pay the full amount

MoneyHelper has information about income levels and how they affect how much you need to pay.

If you disagree with the decision

If you disagree with the outcome of your means test, you can ask for a review. You may also want a review if your financial situation changes.

If you care for someone, you can ask social services for a carer’s assessment. The assessment looks at how your caring role affects your life and what support you may need.

You can have your assessment at the same time as the person’s care needs assessment or at another time.

If you care for your child, you can ask for a parent carer’s assessment. This will look at the whole family’s needs, including any other children.

Applying for a carer’s assessment

You can apply to the social services department at your local council or HSCNI. We’ve included links to these at the end of this page.

Getting ready for a carer’s assessment

It can be helpful to keep a record of everything you do in your caring role. This could include things like personal care, helping with money, or keeping the person safe.

You might want to think about how caring affects your:

• Sleep
• Health
• Work or studies
• Other caring responsibilities
• Daily life – do you have time for household jobs and personal care?
• Social life and relationships

What happens during a carer’s assessment

You may have the assessment face-to-face, over the phone, or online. You can ask a family member or friend to be with you if you’d like some support. The person you care for does not need to be there unless their care needs are being assessed at the same time.

If you’d like someone independent to support you during the assessment, you can arrange to have an advocate. We have more information about advocates further down this page.

The assessment is your chance to talk about how your caring role affects your physical and emotional wellbeing. The assessor may ask how you feel about caring and how long you feel able to do it for. They should also agree with you what should happen in an emergency. For example, if you were ill, who would take over your caring role?

What happens after a carer’s assessment

If you qualify, the council or HSCNI will put together a support plan with you. This may include practical and emotional support. They may also provide support to the person you care for, to give you a break from caring.

The council or HSCNI should not charge you for any support they give to the person you care for. But they may charge for services they provide to you. They may do a financial assessment (means test) to decide how much they will pay towards your costs.

If you do not qualify for help, the council or HSCNI should tell you about other sources of support.

You can ask for a re-assessment if your situation changes or you need more support.

If you disagree with the decision

If you want to complain about your assessment or the decision, you can ask the council or HSCNI for their complaints procedure.

Carers UK have a useful guide on how to complain about a care service.

If you’d like some support during a needs assessment or carer’s assessment, you can ask a friend or family member to be with you. If there’s no one suitable to help, you can ask for an advocate.

An advocate is independent, which means they have no connection to the council or the assessor. They can help with things like filling in forms and going to meetings with you. They can also speak on your behalf if you’d like them to.

You can ask your local council or HSCNI to help you find an advocacy service.

In England and Wales, your local council must provide you with an advocate if you do not have anyone to help and you find it difficult to:

• Understand information
• Remember information
• Use information to make decisions
• Communicate your views

If you live in Scotland, you can contact Disability Information Scotland and the Scottish Independent Advocacy Alliance. In Northern Ireland, you can get information about advocacy from Disability Action.

If you live in England, Northern Ireland, or Wales and have complex, long-term health needs, you may qualify for NHS Continuing Healthcare (CHC). This is free care arranged and paid for by the NHS. It’s different from the services provided by your local council or HSCNI.

Scotland has a different system, called hospital based complex clinical care. This is for people who need long-term care in hospital.

You can apply for Continuing Healthcare whether you live in your own home or in a care home. A GP or social worker can help arrange an assessment with the NHS or social services.

To qualify for Continuing Healthcare, you must show that you have a primary health need. This means your care is mainly about managing your health rather than providing social support. The assessor will first measure this using a checklist. If the checklist shows you might qualify, they’ll arrange a more detailed assessment.

During the assessment, evidence will be gathered from health and social care professionals involved in your care. This helps make sure your physical health, mental health, and social care needs are fully understood and taken into account.

If you’re approved for Continuing Healthcare, the NHS (or HSC in Northern Ireland) will put together a care and support package to meet your needs. This package is usually reviewed within three months of starting, and then at least once a year, to make sure it still meets your needs.

You can read more about NHS Continuing Healthcare on the Carers UK website.

If you live in a care home that provides nursing care, you may be eligible for NHS-funded care (or HSC-funded nursing care in Northern Ireland).

You may get funding if:

• You do not qualify for NHS Continuing Healthcare
• The assessment shows you need nursing care from a registered nurse
• You live in a care home that provides nursing care

This type of funding helps cover the nursing care you receive in the care home. It does not cover personal care or accommodation costs.

MoneyHelper has more information about applying for NHS-funded nursing care.

• Carers UK – information about needs assessments and carer’s assessments in England, Northern Ireland, Scotland, and Wales
• Local councils – you can find a list of councils in England and Wales and Scotland
• MoneyHelper – information about funding long-term care
• nidirect – has a list of local HSCNIs in Northern Ireland

Author: Muscular Dystrophy UK
Last reviewed: July 2025
Next review due: July 2028