How to get nursing and personal care at home

If you’re living in your own home and you have a terminal illness, you may have questions about getting the care you need. As well as the information below, you can ask your district nurse and GP about what care is available in your area.

On this page:

What help can I get from the NHS?

NHS healthcare is free for UK residents. Your GP is the doctor in charge of your care at home, even if you’re seeing other doctors at the hospital. If you’re in pain or have other symptoms, speak to your GP.

You can get other types of NHS care through your GP, for example physiotherapy, occupational therapy or counselling. For some services, you may be able to refer yourself for this care.

If you’re able to get out of the house, you can visit the GP surgery. If you need help from a nurse, for example to change a dressing, you can go to your GP surgery for this.

If you’re not able to get out of the house, the GP can visit you at home. They’ll also work with the district nurse.

If it’s appropriate, the district nurse can come to your home and they’ll leave their number for you to call if you need them. As well as doing things like providing nursing care and giving injections, they can suggest ways to make you more comfortable and tell you what to do about symptoms. They can also arrange for you to have equipment such as a hospital bed or a specialist mattress.

The district nurse or GP may also organise for a nurse or healthcare assistant from Marie Curie or Macmillan Cancer Support   to visit you. Your GP and district nurse can also give you information about charities, support groups and hospices in your local area.

We have more information about NHS staff, including people who may be involved in your care.

Can hospice care help me?

If it’s difficult to meet all your care needs at home, you may benefit from some hospice care. If you are referred, you can stay at a hospice for a few days or weeks, go in for day services, or some hospices offer care at home.

You can find out more on our page, Choosing where to be cared for.

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What help can I get with everyday living?

You might need practical help with things like:

  • washing and dressing
  • going to the toilet
  • getting in and out of bed
  • moving about
  • cooking and preparing meals
  • remembering to take your medicines.

This type of care is called social care.

The nurse acknowledged that I had been having a tough time but she wasn’t silly about it - she was practical and told me what we needed to do. Things like a plastic chair that could fit into the shower so off I went to buy that. 

Alison

How do I get social care?

You can arrange and pay for social care yourself, or you may be able to get it from your local council or health and social care trust. To get free or reduced cost social care, your local council or trust will do an assessment of your needs. From this, they’ll work out a plan of all the care and support you need, and tell you how much of it they’ll pay for.

To get an assessment, you can either contact the council or trust yourself, or speak to your GP or district nurse.

If you have a friend or family member who helps look after you, you can still get social care. Both you and the person caring for you can have an assessment to see if you’re eligible for support.

We have more information on social care and assessments on our page, how to get social care and support.

Paying for social and personal care

You can pay for social care yourself, or you may be able to get it free. If you are assessed as needing social care by the council or trust, how much you pay depends on which country you live in and your financial situation.

In England, you pay the full cost of your care if you have more than £23,250 in savings (which does not include the value of your home or pension). If you have a partner and you share money in a joint account, the assessment will normally assume half of this is yours.

In Northern Ireland, social care can be means tested, meaning you may have to pay for some services. However, people don’t normally have to pay for most homecare services.

In Wales, councils can charge a maximum of £90 a week if you have savings or investments of more than £24,000.

In Scotland, personal care is free for anyone who needs it, regardless of how much income or savings you have, and whether you’re married or have a civil partner. Personal care is help with things like washing and dressing, walking, eating and drinking, and taking medication.

In Scotland, the council may charge for other types of social care that aren’t seen as personal care. This includes things like shopping, laundry and housework. This is called domestic care. Each council has its own charging policy, which is based on your income and savings.

Overnight care

There are overnight caring services available – some of these you have to pay for and some are free.

To arrange overnight care, you can speak to your GP or district nurse. In some areas, Marie Curie Nurses and healthcare assistants can provide free care overnight, usually when someone is in the last weeks or days of life. Your GP or district nurse has to refer you to this service.

In Northern Ireland, you can apply for overnight care through your health and social care trust, but it may be difficult to get. A social worker can give you information on getting overnight care privately.

You can also pay for overnight care yourself. There are different types of overnight care available.

Fast-track NHS continuing healthcare

NHS continuing healthcare might pay for your social care if you need help because you have a serious health condition. It’s available in England, Wales and Northern Ireland, although in Northern Ireland it may be harder to access.

There’s a fast-track version if you’re terminally ill and your health is deteriorating quickly – this means it will be put in place more quickly. You can read more about it on our page, Getting NHS continuing healthcare fast tracked.

Benefits

If you’re living with a terminal illness, you may be entitled to several benefits, including Attendance Allowance and Personal Independence Payment. If you have a family member or friend helping you, they may be able to get benefits including Carer’s Allowance.

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What private care and support can I get?

You can pay for different types of care, including getting a nurse, a carer, or a cleaner. If you pay for these services, it’s known as getting them privately.

The NHS website says the hourly rate for a carer is around £20, although in Northern Ireland it may be less. This will vary according to where you live. A live-in carer can cost from £650 a week, but it may cost much more than this.

Finding a carer through an agency

You can get a carer or other help through an agency. UK Homecare Association   is the professional association for homecare agencies. It has a tool on its website to help you find one local to you. The Care Quality Commission   also has a search tool to help you find services nearby.

You may want to compare a couple of suitable agencies. You can call them and request a brochure. You can ask questions such as:

  • Have you cared for someone with similar needs to mine?
  • What sort of training do your carers receive?
  • What happens if my regular carer is sick or on holiday?
  • Is there a minimum charge if I only need a small amount of care?

The UK Homecare Association’s page Choosing Care   has a comprehensive list of questions to ask and further advice.

Employing a carer directly

You don’t have to employ a carer through an agency, you can employ someone directly. If you do this, you have to pay their National Insurance and pension contributions, and you should check if they have the right to work in the UK. You may also want to check if they have a criminal record – you can do this through the government’s disclosure and barring service.  

You may like to read Disability Rights UK’s factsheet about being an employer (called ‘taking on a personal assistant’) and how to do these checks.

You can find more information about getting care privately on the NHS website  .

Age UK also has a factsheet about paying for homecare.  

Care homes and nursing homes

You may choose to be cared for in a care home (sometimes called a residential home) or nursing home if you can no longer manage in your own home. Find out more about care homes and nursing homes on our page, Choosing where to be cared for.

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I live on my own. How will I manage?

If you’re living on your own, you may be worried about making sure you have the care you need. Marie Curie can help. If you’d like to talk through your concerns about care, our Support Line staff can offer information and emotional support. You can call  for free on 0800 090 2309.

You may also want to tell your GP that you live on your own. They will let you know about support and services in your area.

Through your district nurse or GP you can find out about equipment, charities and services which may help if you’re living on your own. There is also information on our page Getting disability, mobility and incontinence equipment.

Befriending

If you’d like some company, there are many organisations that can arrange for a volunteer to phone you on a regular basis.

External websites

Age UK  

Befriending Networks  

Disability Rights UK  

Hospice UK  

The Kings Fund – ‘what is social care’ videos  

Macmillan Cancer Support  

Money Advice service  

NHS – self-funding your care  

UK Homecare Association  

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About this information

This information is 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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