How to get social care and support
If you’re living with a terminal illness, you may need support to live independently. Your local adult social care services can assess your needs and may be able to help by providing social care services.
These are the key steps to get social care:
- Contact your local social care services department and request an assessment
- Social care services will assess your needs and give you a plan to meet these needs
- Social care services will assess your finances and see how much money you might need to pay towards the cost of your care
- Social care services will agree a personal budget with you
You’ll organise your social care, with support from your local authority or another organisation.
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The type of social care you get depends on your needs. It might include things like getting help from professional carers in your home, getting equipment for your home, or being cared for in a care home. Social care can help with everyday tasks such as:
- getting out of bed
- getting dressed
- personal hygiene tasks (eg going to the toilet and showering)
- cooking and eating
- seeing friends and family
- using public transport or community leisure facilities
- keeping fit and active.
Social care is for people over 18 who need help because of a disability or health condition that means they can’t manage by themselves. Social care is also available for children, but it’s provided slightly differently.
You can request an assessment yourself by contacting your local social care services:
- In England and Wales, GOV.UK has a database to find social care services
- In Scotland, Care Information Scotland has a map to find your social work department
- In Northern Ireland, Health and Social Care in Northern Ireland has information about your local health and social care trust.
If you’re unable to contact social services, someone else can contact them on your behalf. This could be a family member or friend, or a health or social care professional involved in your care, such as your GP or hospital social worker.
You can get a copy of the social care guidelines for your area from your GP surgery, local Citizen’s Advice centre, hospital social care department, or from your council’s website. Councils in the UK must, by law, provide information on what care and support services are available, how you can access them, how to get financial advice about care and support, and how to raise concerns about the wellbeing of anyone with care and support needs
Once your local social care 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.
Your carer can ask for a carer’s assessment for help with their needs too.
If you need care urgently
If you need care urgently, social care services should be provided without carrying out an assessment. Contact your local social care services about this.
Before your assessment
Try to keep a diary or make a note of tasks and situations you find difficult. This can help you talk about them when the assessment takes place. Your emotional wellbeing is very important too, so make a note if you’re finding it hard to manage your emotions.
If a family member or friend is helping to look after you, they might also find it helpful to make any notes about their needs and any tasks they’re unable to do or don’t want to do.
At the assessment
The assessment will be carried out by a trained person such as a social worker, rehabilitation officer or occupational therapist.
If a family member or friend cares for you regularly, it may be helpful for them to be there for your assessment. They can also have a carer’s assessment separately.
The person assessing you will visit you at home or in hospital and ask you and your carer about:
- your health and any difficulties this causes
- your current living and care arrangements
- any concerns about your safety and wellbeing
- your wishes, outcomes and goals that matter to you in your life
- any specific care requirements you may have.
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 start an assessment while you’re in hospital. But they may need to complete this once you’re back at home so they can see how you’re managing in that environment.
The time that the assessment takes can vary depending on your needs. You could ask the person assessing you how long it might take.
As much as it’s possible, you should get to decide how your own needs are met – this is called personalisation. The aim of social care is to help you maintain your independence for as long as possible. The person assessing you should help you understand exactly what your choices and options are, and how decisions are made. You’ll also be asked to sign a form giving your consent for specific information to be shared with other professionals. This will allow a full assessment of your needs and might relate to your health and housing, as well as your social care needs.
The rules around social care vary according to where you live.
If you live in England or Wales
In England, councils must assess adults if they appear to need care and support, and carers if they have a need for support. Local councils can fast-track assessments for people who have a terminal illness, but don’t have a legal duty to do this. You can ask your local council to fast-track your application and assessment for social care. Social care for adults in England is governed under the Care Act 2014. The Children and Families Act 2014, covers young carers and parents caring for children under 18.
Your care and support needs will only be met if, as a result of impairment or a long-term health condition, you’re unable to achieve at least two of the following:
- managing and maintaining nutrition
- maintaining personal hygiene
- managing toilet needs
- being appropriately clothed
- being able to make use of the home safely
- maintaining a 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 these things are already being provided by your carer, you may not receive social care.
In Wales, local councils have similar obligations. Social care in Wales is governed by the Social Services and Well-being (Wales) Act 2014.
What happens if you’re eligible for social care?
If you meet the requirements, social care must provide you with support as soon as it can.
Your support could be:
- getting professional carers to help you at home
- staying in a care home or nursing home
- getting special equipment and adaptations to your home
- respite or day care services to give you or your carer a short break.
You’ll get a copy of your care and support plan. Your carer will get one too, if you want them to. Some people have difficulty in understanding the care system and don’t have friends and family to help. If this is the case, your local council must arrange for someone (an advocate) to help you.
Once the support is in place, if your needs change, you may be reassessed and how much support you get may change as a result.
Your social care provider will allocate a personal budget (self-directed support in Scotland and direct payments in Northern Ireland) to you. Read more about arranging payment for social care.
It may be cheaper for social care providers to move you into a care home rather than provide similar services at home. They can’t make you do this on the grounds of cost alone – they have to take your care needs and emotional wellbeing into account. They have 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. They are likely to be able to do so unless a care home is found to be a much safer option. If you want to stay at home, social care services will have to look at what they can do to support you at home.
What happens if I’m not eligible for social care?
In England and Wales, if you’re not eligible, social care providers must explain their decision clearly and give reasons for refusing to provide support services 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 department dealing with your assessment or have a look at its website for the complaints procedure. You can also read our information about making a complaint.
If you live in Northern Ireland
In Northern Ireland, the assessment process for deciding whether you can have social care is the same as in England and Wales (see above). The assessment identifies your personal circumstances and needs, so it’s helpful to prepare a list of the difficulties you encounter because of your illness or disability.
You can contact your local health and social care trust for an assessment, which should lead to a care plan to get you the services and support you need, or to direct payments so that you can choose and buy the services yourself.
The Department of Health, Social Services and Public Safety (DHSSPS) is responsible for community care and providing these services. See the nidirect website for more information.
If you live in Scotland
Asking for an assessment and getting a care plan to provide a range of services and/or direct payments is similar to that in the rest of the UK (see England, Wales and Northern Ireland above). But there are important differences in Scotland:
- There are other options as to how social care is delivered (the Scottish Government’s Self Directed Support websitehas more information about this)
- If you’re 65 or over, personal care and nursing care are free
- If you are under 65, nursing care is free
- The budget that is allocated to you is called an ‘individual budget’.
If you are over 65 and living in Scotland personal and nursing care is free (see above).
In the rest of the UK, local councils can charge for some services.
How do they assess how much I pay?
In England, Wales, and Northern Ireland, each local social care department sets its own charging rules, but these have to follow certain government guidelines. Some local councils will only charge for some services, such as meals on wheels or home help.
If you do have to pay something towards your care, you’ll be financially assessed (means-tested) to see how much you’re able to contribute. Social care services will take the following into account:
- The cost of the services you need
- Your savings or assets. If your savings and assets are above a certain amount (called a higher capital limit), you will have to pay the full amount for social care services
- Your income. Some income is ignored - speak to social services about what counts as income.
- A certain amount of your money is protected to make sure you’ve got enough to live on. This is called your personal expenses allowance.
You’ll usually have to contribute your income minus your personal expenses allowance.
Some capital is ignored, such as your property if someone else lives there who is:
- your partner
- a close relative who is 60 or over or incapacitated
- a close relative under the age of 16 who you are legally responsible for supporting.
If you think a charge is unreasonable, you can make a complaint to social care services, who will review what you’ve been charged.
If you live at home (rather than in a residential home) tell social care about your disability-related expenses. If you have a lot of expenses because of your disability, then the amount you have to pay the council can reduce a lot.
Do my benefits get taken into account?
In England, Scotland and Wales, all benefits count towards your income except:
- Child Tax Credit
- The mobility component of Disability Living Allowance (DLA) or Personal Independence Payment (PIP)
- The savings credit element of Pension Credit is partly ignored.
In Northern Ireland, health and social care trusts don’t usually charge for care services in your home, except for home help schemes like meals on wheels. Your health and social care trust should conduct a financial assessment if they decide to charge you for care services. They should not take any disability-related benefit into account in the financial assessment. If you’re over 75, you will not be charged.
If I pay for my own care, do social care services have any responsibilities to me?
If after the assessment, you have to pay for your own care, your local social care services still has a duty to help you by providing you with information and advice on what support is available.
You can also ask your local council for information about alternative sources of support and how to access them.
The money from social care is called your personal budget. You can only use it to pay for the social care needs that have been agreed as part of your care plan. If you don’t spend all the money before your next review, your care manager may decide to lower the amount you get.
You’ll be responsible for arranging the services yourself, and given support to make sure your needs are met. You can:
- get your social care services to manage your budget on your behalf
- get 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 to you or someone you choose (by direct payments).
If you want help organising services, Disability Rights UK has a Personal Budgets telephone and email service, which can help you find support organisations in your area
If you choose to arrange and pay for care services yourself, your social care services will send you cash payments called direct payments.
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 already provided by social care
- paying a close relative to be your carer (in most circumstances).
Direct payments can be made to someone else to manage the payments on your behalf. They must be willing to do this and suitable. 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 care services directly or have an independent organisation manage your budget.
Continuity of care (also known as Portability) is how councils in the UK transfer responsibility for the care and support of a person when they move from one area to another. If you are getting social care and move to a different council area, the two councils have to arrange it so that all necessary services will be ready for you on the day you move. If the new council has not carried out an assessment of your needs, it must continue to meet the care and support needs that were being met by the original council until it has carried out its own assessment.
What other responsibilities do social care services have?
Councils also have to put in place social care services to prevent people developing more serious care and support needs. This may include services that help with:
- finding out who may be at risk of conditions such as stroke
- identifying carers so they can be supported
- preventing or delaying people’s needs from getting worse.
About our information
Marie Curie’s Information and Support team has produced this information with help from:
- Director of Corporate Services, Marie Curie
- Disability Rights UK
- Our Readers’ Panel volunteers
It's not intended to replace any advice from health or social care professionals. We suggest that you consult with a qualified professional about your individual circumstances. Read more about how our information is created and how it's used.
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