Getting support as a carer
Find out about the different types of support available if you are a carer for someone who is living with cancer.
It is a good idea to think about the kind of help you might need. This could be from family members, friends or a local support group. It is important you know who you can ask for help and what they could do.
Having a good support network can make a big difference. Asking others for help is often the most sensible thing to do and is not a sign of failing. Try to talk openly with people about your role as a carer and the help you need. You do not have to protect others in your family by doing it all by yourself.
Sharing the caring responsibilities with family and friends means that you have time to look after yourself, as well as the person you are caring for. It also helps family and friends understand the situation better and give you support.
Some people may offer to help. Other people may not know how to ask, or what to do. Or they may not realise how much help you need.
Getting help from other people also benefits the person you are caring for. It gives them the chance to spend time with others. It can also help make them feel well supported. They may be relieved that you are getting the support you need. Make sure you involve the person you are caring for. Try to agree together on who does what.
You can start by:
- making a list of day-to-day activities you may need help with, such as hospital appointments, or taking children to school
- asking people what they can do to help
- asking people how much they can help.
People may want to help by:
- cooking or making extra meals you can freeze
- doing household jobs like cleaning, washing or looking after the garden
- sitting with the person you are caring for and talking or listening, so you can have a break
- taking the person you are caring for out
- taking the person you are caring for to GP or hospital appointments
- helping you with the person’s personal care or bedtime routines.
Make sure anyone who looks after the person for you has all the information they need. This could include what the person you are caring for likes to eat, or information about the medicines they take. It is also important to make sure they have important phone numbers of who to contact in case of problems.
Family members may not do things the same way as you do. You can make suggestions, but it is important to trust them.
Using a rota
Sometimes it is helpful to have a record of who is helping, when they are coming and what they are doing. This can be very helpful if you do not live with the person you are caring for. But it can also be helpful if you do. It can help make the best use of everyone’s time. We have included examples of things you could add to the rota. You could copy the table and use it for different weeks.
8am: Saffiyah taking the kids to school
Saffiyah’s phone number:
1pm: Pat driving to day unit for chemotherapy
Pat’s phone number:
Phone number for day unit:
|Wednesday||8am: Saffiyah taking the kids to school|
7pm: Stu calling physiotherapist to ask about exercises
Stu’s phone number:
Physiotherapist’s phone number:
5pm: Keisha cooking dinner
Keisha’s phone number:
|Saturday||10am: Pat doing the ironing|
4pm: Liz visiting
Liz’s phone number:
Carers UK also has a free online and mobile app called Jointly, which you could use to co-ordinate who is doing what.
Who will I meet?
You may be in contact with different health and social care professionals. This is because the person you are caring for might have different needs. These professionals can support you as a carer. They can give you advice and direct you to different services that can help.
There may be a main person for you to contact at the hospital called a key worker. You can contact them if there are problems. They may be a specialist nurse or social worker.
When the person you are caring for is diagnosed or having treatment, you may meet:
- a surgeon – who is a specialist in treating cancer with surgery
- a cancer doctor (oncologist) – who is a specialist in cancer treatments
- specialist nurses – who can give you information and support.
At other times you may also meet:
- a GP – who is responsible for the healthcare of the person you are caring for at home
- district nurses – who support people at home
- social workers – who assess the practical and social help you or the person you are caring for needs
- physiotherapists – who give advice to help improve body movement (mobility)
- a dietitian – who gives advice on nutrition and problems with eating
- occupational therapists – who help people who are having problems doing everyday tasks.
It helps to write down the names and contact details of the professionals you meet, in case you need to contact them.
Healthcare professionals need to have permission from the person you are caring for to share any information about them with you. If the person you are caring for wants to give this permission, they can tell their cancer doctor, specialist nurse or GP.
Talking to healthcare professionals
Talking to doctors, nurses and other healthcare professionals can feel overwhelming. But as a carer, it is important to know you have a right to talk to them. Tell them you are a carer, so they can involve you. This is important for the wellbeing of the person you are caring for. It also helps you to feel more supported.
You might go to hospital appointments with the person you are caring for. Here are some tips to help you get the most from appointments:
- Before you go to the appointment, talk to the person you are caring for about questions they want to ask.
- Write notes during the appointment to help you remember what is said.
- Ask healthcare professionals to explain anything you do not understand.
- If there are things the healthcare professional cannot help with, ask who you should contact.
As a carer, try to be honest with healthcare professionals about what is happening. This is so they can give you the right support. This does not mean you need to speak instead of the person you are caring for at appointments. But make sure you tell the healthcare professional anything that is helpful. For example, you could tell them your opinion on how well you think a new medicine is controlling a symptom.
You can also ask for advice and support about caring. Healthcare professionals understand that you need support too.
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 health or social care professionals. It lists the services they will get after treatment or after leaving hospital. It also includes information about what they can do to manage their day-to-day health.
Ask the key worker, specialist nurse or social worker if a care plan has been organised. Make sure you understand everything in the care plan. If you do not, ask if they can explain it to you or give a different example. If the person you are caring for is offered help with personal care, ask whether you have to pay for it. These services are not always free.
The GP (local doctor)
A GP may be the first healthcare professional you have contact with. They are responsible for the health of people who are living at home.
Tell the GP of the person you are caring for as soon as possible that you are looking after them. They can help you by:
- giving you information about NHS services, social services and voluntary services
- advising you about the person’s condition and supporting you so you feel more confident about looking after them
- providing supporting letters and information for benefits (such as Attendance Allowance), your local housing department or blue badge scheme.
Your GP can also help the person you are caring for. They can:
- assess their health and do home visits if needed
- help them manage side effects and symptoms
- do home visits if they need them
- prescribe medicines and arrange repeat prescriptions
- give them information and support
- organise nursing help if needed, such as district nurses, or specialist palliative care nurses
- refer them to other healthcare professionals, such as a physiotherapist or occupational therapist (OT)
- arrange for them to go into hospital, a hospice or a nursing home if you need a break (respite care).
Contacting the GP
You may need to see the GP if the person you are caring for has a new symptom or is unwell. If they are having cancer treatment, you may have been asked to contact a 24-hospital number. You can also call their key worker. It is very important to follow the advice you have been given by their hospital team.
Contact the GP, hospital or key worker straight away if the condition of the person you are caring for seems to be getting worse. The GP can give you advice by phone or arrange a home visit. GP surgeries provide a 24-hour service. If you call a doctor when the surgery is closed, you are usually put through to an out-of-hours doctor. You should write down the details of your out of hours service, along with other important contact details.
In an emergency you should call 999 for an ambulance.
District and community nurses
District nurses work closely with GPs. They can regularly visit patients and their families at home. They can also support carers. The GP or hospital staff may contact your local district nursing service to arrange a home visit.
A district nurse or a community nurse will assess the healthcare needs of the person you are caring for. Community nurses work with district nurses to care for people at home.
The district nurse can:
- support you and the person you are caring for, and give advice to keep them as independent as possible
- help you manage medicines at home
- show you how to wash, dress and move someone safely – if you and the person you are caring for are happy with this
- give injections, change wound dressings or remove stitches
- help with managing stomas, catheters, feeding tubes and central lines
- give advice on eating well (nutrition), looking after skin and pressure areas, bowel or bladder problems
- refer you or the person you are caring for to other health or social care professionals you may need.
The district nurse can also arrange equipment to be delivered. They will show you and the person you are caring for how to use it safely.
Other healthcare professionals
It may help to understand what different healthcare professionals do, and how they can support you as carer.
Palliative care team
The person you are caring for may need specialist help with symptoms caused by the cancer, such as pain. Your GP, hospital doctor, nurse or keyworker can refer you to a community palliative care team.
These teams include specialist nurses and doctor who specialise in controlling symptoms and giving emotional support. They are usually based in hospices and visit people who are being cared for at home. They work closely with GPs, district nurses and other hospital services. Palliative care nurses do not provide physical (hands-on) care.
Macmillan nurses specialise in controlling symptoms caused by cancer, and giving emotional support. They also support people going through cancer treatment. Some Macmillan nurses have expert knowledge of a particular type of cancer. They may be based in hospitals, hospices or sometimes in the community. Macmillan nurses do not provide physical (hands-on) care.
Marie Curie nurse
Marie Curie nurses provide free nursing care, usually during the last weeks of someone’s life. They also provide support for carers and family. They can stay in your home overnight or part of the day, to give you a break. They are usually arranged by the district nurse or palliative care team. Marie Curie nurses are not available in all areas. It may also depend on the local trust or health board.
Private care nurse
Some people can get help at home from a private nurse. But this can be expensive. There are many private nursing agencies. You can ask the GP, district nurse or your local social services for advice. 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.
If the person you are caring for has problems walking or moving around, they can be referred to a physiotherapist. The GP, district nurse or palliative care team can arrange a referral to a physiotherapist. Some physiotherapists visit people at home. The physiotherapist will assess their needs, and work with them to improve how well they get around (mobility). The physiotherapist can also talk to you about safe ways to help with movement. They can give you information about how to prevent falls. They can help with exercises to:
- manage breathlessness
- manage stiffness in joints
- improve muscle strength and mobility.
Occupational therapist (OT)
OTs can look at how the person you are caring for manages day-to-day activities. They can suggest and arrange practical changes to make a home safe, comfortable and easy to live in. OTs can also arrange support if the person you are caring for has difficulty moving around or doing everyday activities. These activities might include dressing, washing and cooking. They can also show the person how to save energy while doing these activities.
The person you are caring for might need adaptations, aids or equipment to help them at home. OTs can give them information about things that might be right for them. The OT can arrange any adaptations, aids or equipment the person needs. A social worker or district nurse can usually arrange for an OT to visit.
Your local pharmacist can give you information to help you understand about the medicines the person you are caring for is prescribed. They can also tell you about things to help with giving the person their medicine. For example, they can explain more about pill organisers (dispensers) and pill timers. You may see a pharmacist at the hospital or in your local chemist. Some pharmacists may arrange for medicines to be delivered to the home.
Psychologist or counsellor
There are different professionals who can support the person you are caring for if they have difficult feelings. As a carer, you may also need professional support to help manage feelings of anxiety, low mood or depression. If you have any of these feelings it is important to talk to your GP. They may be able to refer you to a psychologist or counsellor for expert emotional support.
Your district nurse will give you advice if the person you are caring for has problems with leakage (incontinence) from their bladder or bowel. They can also arrange for a referral to a clinic to see a continence adviser. They assess the problem and give you advice and information about aids to manage continence problems. You may also be able to get help with laundry services. You can get more information from the Bladder and Bowel Community.
Social care needs assessment
Before the person you are caring for can get help, they need a social care needs assessment. You can contact social services at your local council and ask for a needs assessment. You can call them, or do it online.
A social worker or occupational therapist can visit the person you are caring for at home to do the assessment. Sometimes they do it by phone. They ask the person how they manage everyday activities, like washing, dressing and cooking. A separate assessment of the home might be needed.
It is important the person you are caring for gives as much information as possible. It may help to talk about everyday activities and write down things that are difficult. You should do this before the assessment. If the person you are caring for finds talking difficult, you can speak on their behalf. You can also take notes during the assessment.
You usually get the results of the assessment in a week. Help can be provided by social services or arranged with other organisations such as charities. The services they may provide include:
- someone to sit with the person you are caring for, to give you some time for yourself (sitting services).
- meals at home (meals on wheels)
- a laundry service for people with incontinence
- equipment and adaptations to the home
- benefits advice
- respite care for the person you are caring for, to give you a break from caring responsibilities.
Some services are paid for by the NHS, so they are free of charge. But the person you are caring for may need to pay for other services. They will have a financial assessment (means test) to see if they have to pay anything.
You may be able to get NHS Continuing Health Care (CHC) if the person you are caring for needs lots of ongoing care in their own home. Ask a health or social care professional how to apply for this.
If you are the main carer for a person with cancer, you can ask social services for an assessment of your needs to see what might help you. This is called a carer’s assessment. You can have this even if the person you are caring for does not have their needs assessed or does not qualify for support.
The person doing the assessment will ask how you are coping with caring. This includes the effects on your physical and emotional health, work and relationships. Be as honest as possible with them. You can have someone there with you for support.
After the assessment, social services will write to you to tell you if you qualify for support. If you do they will explain how they can help. The council may be able to help with costs, but you might need to have a financial assessment (means test) first. You might also be able to get benefits because you are a carer.
You may be able to get direct payments from the council. This means they give you money to organise care services yourself. Ask your local council for more information about direct payments. You can also visit GOV.UK or the NHS website.
Home care service
You may get help from care workers to support you and the person you are caring for (home care services). This gives you a break and helps you feel less tired. Care workers may also be called personal assistants or home helps, depending on where you are in the UK.
Care workers may do certain jobs around the house or sit with the person to give you a break. Services can include cleaning, washing, cooking and shopping. They may also provide personal care, such as washing and dressing. Your local social services or the Carers Trust can tell you what is available in your area.
If you need help with cleaning your home, you could also contact a cleaning agency. Ask friends or neighbours if they know of any. Or you could look for adverts in a local newspaper or online. Agencies can be expensive, so it is a good idea to compare a few, to find the best price.
Meals at home service
It may be possible for the person you are caring for to have meals provided at home (sometimes called meals on wheels). This service usually has to be paid for. It may be provided by a private company or the local authority.
The organisations offer different meals that can be made to suit a person’s cultural and religious needs or special dietary needs. The meals are frozen, so they can go in the freezer to eat later. Daily hot meals are usually only provided if the person cannot manage the frozen meals service.
A social worker can arrange meals on wheels.