Support from health and social care professionals

When you’re caring for someone at home, there is support available from health and social care professionals in your community.

Your GP will have overall responsibility for the person you’re caring for. They can prescribe medication, give you advice and organise any help you need. They can arrange visits from district nurses, physiotherapists, occupational therapists or specialist palliative care nurses.

A district nurse may visit your home to assess the person’s needs. They can then organise regular visits from community nurses. Community nurses give nursing care and can also show you how to do everyday nursing tasks.

Palliative care nurses, sometimes called Macmillan nurses, specialise in pain and symptom control. They’re usually based in hospices but can visit you at home. Marie Curie nurses can also visit if you need extra help.

A social worker can visit you at home to assess what practical help you and the person you’re caring for need. Your local authority then looks at the level of your needs and decides if they will arrange the services. Services vary from area to area.

GP (family doctor)

A GP has overall responsibility for the healthcare of people who are unwell and being looked after at home. The GP can:

  • assess the changing health of the person you are caring for
  • give them information and support
  • prescribe drugs
  • organise nursing help if needed – for example, from a district nurse or specialist palliative care nurse
  • refer them to a Macmillan nurse 
  • refer them to a physiotherapist or occupational therapist (OT)
  • arrange for them to go into a hospital, hospice or nursing home, if needed – this may be to give you a break, known as respite care.

If the person you are caring for has moved to another area since they became ill, you will need to register them with a local GP surgery. You will need the name and address of their previous GP. Let their previous GP know what has happened.

Contact the GP if you are worried about something. This may be if you notice any new symptoms or some that are getting worse, or if there is a sudden change in the person’s condition. The GP may make a home visit, give you advice on the phone or suggest a visit to the surgery. You should also let their GP know that you are their carer. They may be able to tell you about local support services.

People with cancer in the UK can get free prescriptions. But in England, the person with cancer first needs to apply for a prescription exemption certificate. You can ask for an application form at their GP surgery or at the hospital.

GP surgeries are generally only open during the day on weekdays, but they must provide a 24-hour service. If you call for a doctor when the surgery is closed, you may be put through to an out-of-hours service.


District and community nurses

The district nurse is a key person involved in someone’s care when they are being looked after at home. They have overall responsibility for the nursing help you have and will talk to you about the care that will be provided. The district nurse may:

  • assess the person’s nursing needs
  • give them support and advice
  • give injections
  • change dressings
  • give advice on nutrition, pressure area care, bowel problems and incontinence
  • arrange for any special equipment to be delivered.

The district nurse can show you how to do everyday nursing tasks, if you and the person you are caring for are comfortable with this. They can show you how to wash, dress and move someone safely. You may want to ask them to do this with you the first few times, until you feel confident doing it yourself. 

If the person you are caring for is getting ready to come home, the hospital or hospice staff should let the district nurse know, or the GP may arrange for them to visit. The first home visit you have will often be from a district nurse. After that, the district nurse usually organises for other nurses who work in their team to make regular visits. These are community nurses. You will usually see the same one or two nurses.

Community nurses may be able to visit up to three times a day – in the morning, afternoon and evening. This will vary depending on the needs of the person you are caring for and the services available in your area.


Continence adviser

The person you are looking after may be having trouble controlling their bladder or bowels. This is known as incontinence. It can be emotionally and practically difficult for both of you.

Your district nurse will be able to help with this and may suggest that a continence adviser visits you. This is a specialist nurse who can give advice and information about aids to help manage continence problems. You may also be able to get help with laundry services. 

The Bladder and Bowel Community has more information and advice on bladder and bowel problems.


Community specialist palliative care team

Palliative care is given to help control symptoms rather than cure the cancer. Palliative care teams specialise in controlling pain and symptoms, as well as offering emotional support. The teams include specialist nurses and doctors. They are sometimes based in hospices and can visit people who are being cared for at home.

Community specialist palliative care nurses will work closely with the person’s GP, district nurse and other hospital services. The GP will tell you more about their services, how to contact them and when they are available.


Marie Curie nurse

Marie Curie nurses are trained to look after people who need palliative care. They normally provide care during the last days or weeks of someone’s life. They specialise in giving practical nursing care and can spend the night or part of the day in your home, giving you a break.

If you need extra nursing help, especially during the night, a member of the healthcare team may suggest that a Marie Curie nurse visits your home. The district nurse or community nurses will usually arrange this. The visit may be from a registered nurse or a senior healthcare assistant, depending on the needs of the person you’re caring for. Marie Curie is a charity and their services are free.


Occupational therapist (OT)

Occupational therapists (OTs) look at practical ways of making a home safe, comfortable and easy to live in. They help people who have difficulty moving around or doing everyday tasks such as dressing, washing or cooking.

OTs can suggest and arrange minor changes to your home. They can also get the person a wheelchair, bath or shower equipment, or specially adapted cutlery.

Your social worker or district nurse should be able to arrange for an OT to visit your home.


Physiotherapist

If the person you are caring for has problems walking or moving around, a physiotherapist can often help. Physiotherapists give advice on exercises and ways to keep the person you are caring for as mobile as possible. They can also help with breathing exercises.

The GP, district nurse or specialist palliative care team can arrange an appointment with a physiotherapist. They can see them as an outpatient at the hospice or the local hospital. Some physiotherapists may visit people at home.


Private nurses (agency nurses)

You can also get help from a private nurse. This can be very expensive and may only be practical as a short-term solution. But it can be useful if you are working and need a nurse at home while you are out.

There are many private nursing agencies that can supply qualified nurses to come into your home. You may want to ask the local social services or a support group for advice. You can still ask for advice even if the person with cancer is not eligible for care provided by social services.

Look in your local phone book under ‘nursing agencies’ or search online. The Care Quality Commission can check the standards of care in nursing agencies.


Social services

A social worker is responsible for assessing what practical and social help you and the person with cancer need. If you don’t already have a social worker, the GP or a nurse involved in the person’s care can make a referral. You can also contact the local social services department. You will find their number in the phone book under the name of your local authority, council or health and social care trust.

The social worker will visit and carry out a community care assessment or needs assessment. Each local authority has different ways of deciding who is entitled to support. The services available will vary from area to area.

If the person with cancer is entitled to some help, the local authority has a duty to meet their needs. The services they need may be provided by social services or other organisations, such as charities. These services include:

Some services will be paid for by the NHS, so they will be free. In other cases, social services will do a financial assessment to calculate whether you have to pay something. If the person you are caring for needs lots of ongoing care, you may be able to get Continuing Health Care (CHC) provided by the NHS. Ask any health or social care professional how to apply for this.

Your social worker should stay in touch with you once the services have been put in place. They will check that the services are working and that your needs have not changed. 

As well as arranging services to meet your needs, many social workers are trained in counselling and can offer emotional support.

Carer’s assessment

It is important to keep healthy and to balance caring with your own life, work and family commitments. You can ask the social worker for an assessment of your needs, called a carer’s assessment. This will give you the chance to talk about any help you need. You can still ask for this assessment even if the person you are caring for does not want an assessment of their needs, or has been assessed as not eligible for support.

If your carer’s assessment shows that you are eligible for support from social services, you may be able to get direct payments from your local authority. This means that you are given money to organise care services yourself, rather than the local social services organising and paying for them directly. You can ask your local council for more information about direct payments, or visit gov.uk or NHS Choices.

Home care

You may be able to get help around the home for you and the person you are caring for. This can give you a break and help you feel less tired.

Care attendants, also called care assistants or care workers, offer some types of support in the home. This may be to do some jobs around the house, or to sit with the person you are caring for while you have a break. They can also help with personal care, such as washing and dressing the person. Some services have care attendants who can help at night. Your local social services or the Carers Trust will be able to tell you what’s available in your area.

Home helps offer lots of services, including cleaning, washing, cooking and shopping. Home helps are only available in some parts of the UK. Your local social services, social worker, community nurse or GP will know what’s available in your area.

You can also get help around the home from a cleaning agency or by employing someone privately. But this can be expensive. 

Make sure you check references of anyone who is going to be coming into the home. It can also be useful to find out what you need to do if you don’t want to continue employing someone. 

Meals on wheels

It may be possible for the person you are caring for to have meals provided at home. This is often known as meals on wheels. Your local authority may provide these. Or you can get them through a private company. You will probably have to pay for this service, so it’s important to check the cost first.

You may be offered frozen meals that can be put in the freezer to keep and eat later. You may be able to borrow equipment to reheat the meals, and a small freezer if you need it. Daily hot meals are usually only provided if the person you are looking after cannot manage the frozen meals service.

A range of meals is usually available. If the person you are looking after has a special diet, this can usually be arranged. For example, they may need a kosher or vegetarian meal, or a very soft diet. 

A social worker can arrange meals on wheels. If you live in England or Wales, visit gov.uk to see what services are available. If you live in Scotland or Northern Ireland, contact your local social services. 

Laundry service

If you are caring for someone who is incontinent, your local social services may provide a laundry service. Or you may be able to get a grant for laundry charges. Ask the district nurse, GP or social worker about this.


Home care

You can get help in the home to support you and the person you are caring for. This can give you a break and help you feel less tired.

Care attendants/carers come to the home to help in various ways. This may be with either jobs around the house, such as cleaning, washing and cooking, or just to sit with your relative or friend. They can also give some physical care with tasks such as washing and dressing. Some care attendant schemes provide someone to be there at night. Your local social services department or the Carers Trust will be able to tell you about schemes in your area.

Home helps offer a variety of services including domestic help, cleaning, washing, cooking and shopping. Home helps are available in some parts of the UK. Other parts, unfortunately, provide no service at all. Your local social services department, social worker, community nurse or GP will know the situation in your area.

If you can afford it, you can get private domestic help by contacting a cleaning agency or by putting an advertisement in a local paper or shop window. If you organise domestic help yourself, make sure you check the person’s references before employing them.


Meals on wheels

If you’re out at work in the day and the person you’re caring for has difficulty preparing a meal themselves, it may be possible for them to have meals provided at home. This is often known as meals on wheels. These may be provided by a commercial organisation or your local authority. You’ll probably have to pay for this service.

You will probably be offered frozen meals that can be put in the freezer to eat later, instead of hot meals. You may be able to borrow equipment to reheat the meals and a small freezer if you need it. Daily hot meals are usually only provided if your relative or friend can’t manage the frozen meals service.

A range of meals is usually available. If the person you are looking after has particular cultural or religious dietary needs, this can usually be provided. For example, they may need a kosher or vegetarian meal, or a very soft diet.

Your social worker can arrange meals on wheels. Or you can visit gov.uk to see what services they provide.


Laundry service

If you’re caring for someone who is incontinent and you have to do a lot of washing, your local social services department may be able to help by providing a laundry service. Alternatively, you may be able to get a grant for laundry charges. Ask the district nurse, GP or social worker about this.

Back to Looking after someone with advanced cancer

Managing symptoms

There are many ways you can help the person you’re looking after to manage symptoms or side effects while they are at home.

Support from voluntary organisations

Charities and voluntary organisations may be able to offer information, support groups, financial help, holiday schemes, transport or counselling.

Support from family and friends

Family and friends may be able to help you with practical and emotional support while you care for someone with advanced cancer.

Other care options

You might need to take some time off from caring. There are different care options available to help you do this.