Support from health and social care professionals

When you look after someone with cancer, there are health and social care professionals who can support you. You can ask them for advice.

You may meet:

  • a key worker – who might be a specialist nurse or social worker. They will be your main point of contact who can answer any questions.
  • a GP – who has overall responsibility for the healthcare of someone who is being cared for at home.
  • district and community nurses – who help with nursing tasks at home, such as wound dressings.
  • the community specialist palliative care team – who helps control pain or other symptoms as well as offering emotional support.
  • Macmillan nurses – who may be part of the community palliative care team. They can help with specialist care needs and support people with cancer.
  • an occupational therapist (OT) – who makes sure the person you care for is safe and comfortable at home. They can suggest and arrange minor changes to their home.
  • a physiotherapist – who helps the person if they have problems moving around.
  • social workers – who assess what practical and social help you and the person you care for needs.

Health and social professionals you might meet

When you are looking after someone with cancer, you may meet different members of their healthcare team.

When they are first diagnosed or having treatment, you may meet:

  • a surgeon – a doctor who carries out operations to treat cancer
  • an oncologist – a doctor who specialises in giving treatments for cancer, such as chemo-therapy or radiotherapy
  • specialist nurses – who give information and support.

At the hospital or at clinic appointments, you may also meet:

  • nurses – who work in wards and clinics
  • a physiotherapist – who gives advice on exercise and mobility
  • an occupational therapist (OT) – who helps people who have difficulty doing every-day tasks, such as washing and dressing
  • social workers – who assess what practical and social help you and the person with cancer needs.

The person you are caring for may have a key worker. This is someone who is responsible for assessing the type of help the person with cancer can get. They can also help to arrange and co-ordinate different services. The key worker may be a social worker or specialist nurse. The doctor or nurse can tell you who the key worker is.

Some people may need more practical care and support when they are at home. The person you are caring for may need help with everyday tasks, such as washing and getting dressed. If you are their main carer, you may be worried that you won’t be able to manage.

The GP is responsible for the healthcare of the person you are caring for at home. There are also community health and social care professionals who can support you. The type and amount of support you get will depend on where you live and how the services are organised in your area.

It is helpful to record the names and contact details of the professionals you meet, in case you need to contact them.


Talking to healthcare staff

Doctors and nurses are a good source of information to help you with caring. As a carer, you may often ask them for advice. You may also be able to give them useful information about the person’s situation at home, their symptoms and their needs. It is important to try to get the most from your conversations.

Describing symptoms or situations may be difficult, but telling staff what is happening or what help you need will help them give you the right support. Try to be open, honest and accurate. Not everyone feels comfortable being open with healthcare professionals, but it can really help. Try to use your own words and ask healthcare staff to explain unfamiliar medical terms.

Knowing what to ask during appointments or conversations can be hard. The person you care for may have questions to ask during the appointment. Check if they are happy for you to ask some questions too. You could write these down, so you don’t forget.

At the end of conversations, it can help to check you understand what you have been told by repeating back the information. If things sound quite complicated, don’t be afraid to ask for simpler explanations.

I would just jot down some of the terms and the things they’d been telling us, knowing that I’d have to re-read it to properly process it.

Anthony, who cared for his wife Waheed


Sharing information and confidentiality

Professionals may prefer to only share information with family members or someone named by the person you care for. If the person you care for would like professionals to share information with you, they should let them know as early as possible. You should also let their healthcare team know that you are their carer. They can then involve you in care planning and decision making.


Care plans

Everyone with a long-term condition should have a care plan if they want one. A care plan is an agreement between the person who is ill and their health or social care professionals. It describes how professionals plan to care for them and what they can do to manage their health themselves.

Ask the key worker or oncologist if a care plan has been organised for the person you care for. The plan should include information about the support they will get after treatment or after leaving hospital. Make sure you are clear about what support is available and ask to have the details explained to you.


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.


Out-of-hours services

If you need to contact a healthcare professional when services are closed in the evenings or at weekends, you can usually get in touch with someone through an out-of-hours service.

Out-of-hours services generally run from 5pm to 8am on weekdays, and all day at the weekends and on bank holidays.

There are phone services across the UK that can help during out-of-hours periods:

  • In England and Scotland, call the NHS on 111. This is free to call from any phone.
  • In Wales, call NHS Direct on 0845 46 47.
  • In Northern Ireland, contact numbers vary but are listed at nidirect.gov.uk.

During the call, a short health assessment is carried out. You may then be able to get advice from a health care professional, such as a nurse or pharmacist. Or they may arrange for the person you are caring for to see a GP at your local hospital.

It might be useful to ask the GP or district nurse about any signs or symptoms to look out for. Check what the out-of-hours services are in your area and save any useful phone numbers.

If the condition of the person you care for seems to be getting worse, contact the hospital, GP or key worker straight away.


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.


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.


Macmillan nurses

Macmillan nurses specialise in supporting people with cancer. They help with specialist care needs, give advice to other healthcare professionals and support people with cancer to understand their treatment options. They also have specialist training in pain and symptom control, and emotional support. There are different types of Macmillan nurses. They usually work in the NHS and may be based in hospitals, hospices or the community. The person you are caring for can be referred to a Macmillan nurse by their GP, their hospital doctor, a district nurse or a ward nurse. Macmillan nurses work throughout the UK, but if there isn't a Macmillan service in your local area, you can be referred to other specialist services.


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.


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.


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.

Back to Looking after someone with cancer

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A carer is someone who gives unpaid practical and emotional support to a person who could not manage without this help.

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Other care options

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If you're a carer with cancer

Looking after someone while going through treatment yourself can be challenging. Support is available for carers.