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Getting social care services

If you’re living with a terminal illness, you may need help and support to live independently. Your local social services department may be able to help by providing social care services.

In urgent cases, social services should be able to provide support without carrying out an assessment.

On this page:

Social care services include:

We have used the term social services throughout this page to cover all the different local organisations and departments managing these services in each nation. These are called:

  • local council social services department if you live in England or Wales
  • local council social work department if you live in Scotland
  • local health and social care trust if you live in Northern Ireland

Who is eligible for care and support services?

Anyone who needs help because of:

  • a serious illness
  • a physical disability
  • frailty because of old age
  • a mental impairment

Who gets help will also depend on what’s available in your area. There are national eligibility criteria that apply to all councils in England, and in Scotland, each local authority must publish its own eligibility criteria. You can request a copy of these criteria.

There will usually be one single assessment to assess your needs for social care services, healthcare and housing. Your local social services department will also decide whether you need to pay anything towards the cost of care services. How much you’re asked to pay will depend on where you live and how much you can afford to contribute.

If you meet the eligibility criteria, your local social services department can’t refuse to offer you services. However, the criteria may be reviewed and how much support you get may change as a result.

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Step by step: how to get social care services

While your carer should be part of your assessment if you want them to be, they’re also entitled to a separate carer’s assessment They can have this separately even if they’ve been involved in your social care assessment.

If you’re a carer, read our information about how to request a carer’s assessment.

Step 1: arrange the assessment

Each council social services department is responsible for the assessment procedure. Visit or call one of the following to find out about social care guidelines near you:

  • The hospital social services department.
  • The local council or health and social care trust (Northern Ireland) website.
  • Your local Citizens Advice.
  • Your GP surgery.

You should be able to find out how long you might have to wait for an assessment, exactly what the decision process is and which needs will be met.

You can be referred to social services in three ways:

  • Self-referral (you ask social services for an assessment yourself).
  • By a friend, family member or carer.
  • By a professional involved in your care, such as a GP or hospital social worker.

Once your local social services department is aware that you might have needs, it has a legal duty to carry out an assessment even if you haven’t asked for one.

If your needs have changed

If you’re already receiving social care services but feel that your needs have changed, you can ask for a review assessment. If your needs are urgent, you might be given support services immediately. The assessment will be carried out as soon as possible after that.

There’s no law about how quickly an assessment should happen, but the government says that assessments should be completed within ‘an appropriate and reasonable timeframe’.

Step 2: complete the assessment

As far as possible, you should be in charge of deciding how to meet your own needs – this is called personalisation. See our information about personal budgets and direct payments below for more information.

The aim is for you to be an equal partner in the assessment, so you understand exactly what your choices and options are, and how decisions are made. It should keep you independent and in control for as long as possible. You’ll also be asked to sign a form giving your consent for specific information to be shared with other professionals. This is to allow a full assessment of your needs and might relate to your health and housing as well as your social care needs.

If you have a relative or friend caring for you regularly, they should also be involved in your assessment. This is different to them having a carer’s assessment – they can still have one of these later on. Before your assessment they should make any notes about their needs and any tasks they’re unable or don’t want to do.

Make a note of any tasks or situations you find difficult so you can talk about them when the assessment takes place. This shouldn’t just be physical activities – let them know if you’re finding it hard to cope with your emotions or are feeling isolated.

The assessment will be carried out by a trained person such as a social worker or occupational therapist.

They will visit you at home and ask you and your carer about:

  • your health and disabilities – to find out what you can and can’t do
  • other living and care arrangements
  • your concerns and those of any relatives or carers, for example would you be at risk if services weren’t provided?
  • any specific care requirements

You might also be given a self-assessment form, but it’s likely to be alongside a face-to-face assessment. If you’re in hospital, the person assessing you can also start the assessment there, but might need to complete this once you’re back at home so they can see how you’re managing.

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How decisions are made

The social worker will score your responses and decide whether your needs are critical, substantial, moderate or low.

In England the national eligibility criteria have been set at substantial. Substantial means that as a result of impairment or long-term health condition you’re unable to achieve at least two of the following outcomes:

  • Managing and maintaining nutrition.
  • Maintaining personal hygiene.
  • Managing toilet needs.
  • Being appropriately clothed.
  • Being able to make use of the home safely.
  • Maintaining an habitable home environment.
  • Developing and maintaining personal relationships.
  • Accessing and engaging in work or training.
  • Making use of community services and facilities.
  • Carrying out caring responsibilities.

If your eligible needs are already being provided by your carer, then social services don’t have to help.

If you’re eligible

Social services must provide you with support as soon as it can. This should be within 28 days of a decision being made. This could be:

  • by giving you support in your own home
  • through a personal budget so you can pay for your own needs
  • in a care home

The person who carried out your assessment will work with you to put together your care and support plan, or care plan in Scotland. You and your carer should be closely involved in creating the plan. For those who have a lot of difficulty in understanding the care and support system and don’t have friends or family members who can help, then the local council must arrange an independent advocate. The plan should cover:

  • the needs identified by the assessment
  • whether and to what extent the needs meet the eligibility criteria
  • the needs the local council is going to meet, and how it intends to do so
  • what outcomes are going to be met
  • for a carer, the outcomes that the carer wishes to achieve
  • the personal budget
  • whether some or all of the personal budget is to be taken as a direct payment
  • information and advice on what can be done to reduce needs and prevent other needs arising in the future

You’ll get a copy of your support plan. Your carer will get one too, if you agree.

If you’re not eligible

Social services must explain its decision clearly and give reasons for it in writing. If you think you’ve been unfairly refused services, or what you’ve been offered doesn’t meet your needs, you have a right to appeal. Call the social services department or have a look at its website for the complaints procedure. You can also read our information about making a complaint.

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Step 3: arranging your support services

Social services will allocate a personal budget to you. You can:

  • have social services manage your budget on your behalf
  • have an independent organisation such as a local disabled people’s organisation manage your budget (known as managed accounts)
  • take your personal budget as a direct payment

If you’ve asked for direct payments but want help organising your services, contact Disability Rights UK Self Directed Support  telephone and email service to find support organisations in your area.

If you need to move into a care home

It might be cheaper for social services to move you into a care home rather than provide similar services at home. Social services can’t make you do this on the grounds of cost alone – it has to take your emotional wellbeing into account. It has to meet all your eligible needs, even if this means spending more than they usually would.

Under the Mental Capacity Act 2005, anyone who can make their own decisions has the right to decide to stay at home and is likely to be able to do so unless a care home is found to be a much safer option. If this is what you decide, social services might have to decide what it can do to support you, even if the social worker doesn’t agree with your decision.

Step 4: paying for your care needs

You’ll probably be asked to pay something towards the cost of services at home or in a care home. The rules about paying for social care services are complicated and differ between care at home and care homes. Speak to an experienced adviser, for example at a Citizens Advice, if you need help.

Social services should be able to explain how the financial assessment works so you understand how much you might have to contribute towards care in a care home. You could also get advice about this from your local Citizens Advice.

In Scotland, if you’re aged 65 or over, any care at home should be free. If the local social services department refuses to provide this, you should use its complaints procedure. If you remain unhappy about your local authority’s handling of your complaint you can contact the Scottish Public Services Ombudsman to make a complaint. Find out more about complaining to your local council or health and social care trust.

You’ll be financially assessed (means-tested) to see how much you’re able to contribute. Each local social services department sets its own charging rules but these have to follow certain government guidelines. If you think a charge is unreasonable you can make a complaint to social services, which will review what you’ve been charged.

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How your finances are assessed

  1. The cost of the services you need is calculated.

  2. You’re checked to see if you have savings or assets, worth over a certain amount.

  3. Your income is calculated.

  4. A certain amount is protected to make sure you’ve got enough to live on.

  5. What you’re charged is taken from your income and savings or assets, after the protected income.

If you’re not able to get publicly-funded social care, ask for information about alternative sources of support and how to access them.

Will my benefits be affected?

All benefits count towards your income except:

Disability-related benefits such as the care component of DLA, the daily living component of PIP and Attendance Allowance   are counted. But any disability-related expenses will be deducted from the total. That includes the costs of anything you have to pay for to help manage your illness or disability while living in your home.

Personal budgets and direct payments

Personal budgets

A personal budget is the way of managing money from social services. It’s known as self-directed support in Scotland. You can only use your personal budget to pay for the social care needs that have been agreed as part of your care and support plan.

Direct payments

Direct payments are cash payments from social services that allow you to arrange and pay for independent care services.

Direct payments can’t be used for:

  • long-term care home accommodation
  • equipment or adaptations that should be provided by the NHS
  • NHS (England, Wales, Scotland) or health and social care (Northern Ireland) services
  • services provided by social services
  • paying a close relative to be your carer (in most circumstances)

You’ll be responsible for arranging the services yourself, and given support to ensure your needs are met. If you don’t spend all the money before your next review, your care manager may decide to lower the amount you get.

Direct payments can also be made to a willing ‘suitable person’ who will manage the payments on your behalf. This person will usually have a Power of Attorney so that they can act on your behalf by law.

If you’re offered direct payments you don’t have to accept if you’d rather have your services paid for by social services. Or you can ask an independent organisation to manage your personal budget for you.

Direct payments are also available for carers.

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What should I do next?

Find out more about getting a Power of Attorney

If you want to help someone who needs care but is unable to make decisions for themselves, one option is to get a Power of Attorney. This is a legal right to make decisions about a person’s health, care and finances on their behalf.

Get an assessment of your carer’s needs

Carers are entitled to an assessment of their needs, even if the person they care for doesn’t want one or hasn’t had one yet. This is called a carer’s assessment. The needs assessment and care and support plan should be done in the same way for carers as for disabled people and people living with long-term health conditions.

Useful links

UK

England

You can find local services and information for your region here:

Scotland

You can find local services and information for your region here:

Wales

You can find local services and information for your region here:

Northern Ireland

You can find local services and information for your region here:

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This content is provided for general information purposes only. It's not medical, financial, legal or personal advice. We suggest that you consult with a qualified professional about your individual circumstances. How our information is created and how it's used.

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