Getting support as a carer

When you care for someone, you will often have contact with health and social care professionals. They can give advice and support. They can also direct you to other services.

The person you care for may have a key worker at the hospital. This is often a clinical nurse specialist (CNS). This is their main contact for information and support. But you can also contact them for advice.

When the person you are caring for is diagnosed with cancer or having cancer treatment, you may meet a:

• surgeon – a doctor who does operations (surgery)
• oncologist – a doctor who treats people who have cancer
• clinical nurse specialist (CNS) – a nurse who gives information about cancer, and support during treatment.

At other times you may also meet a:

• GP – a local doctor who treats general medical conditions
• district nurse – a nurse who gives advice and support to people by visiting them at home
• social worker – someone who can help sort out practical and financial problems
• physiotherapist – someone who gives advice about exercise and mobility
• dietitian – someone who gives information and advice about food and food supplements
• occupational therapist (OT) – someone who gives information, support and aids to help people with tasks such as washing and dressing.

It helps to write down the names and contact details of the professionals you meet. You can save them in your phone, if you have one.

Health and social care 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, CNS or GP. They may give you a form to sign, or they may need it in writing such as an email or letter.

Talking to health and social care professionals can feel difficult when you are a carer. But 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 your wellbeing and the person you care for.

Here are some tips to help you get the most from the appointments you both go to:

• Before you go to the appointment, talk to the person you care for about what they want to know so you both can ask questions. Also ask if there is anything they do not want to talk about.
• Write notes during the appointment to help you remember what is said. Or record conversations on your phone, as long as everyone is happy for you to do this.
• Ask professionals to explain anything that is not clear. Or ask them to repeat things if you missed information.
• If the professional cannot help you with something, ask who you should contact.

It is important that you feel you can speak freely so that you both get the right support. You do not need to speak for the person you care for, but you can help the professional understand the situation better.

As a carer, your opinion matters. You are often the person who spends the most time with them. You might be able to tell the professional about changes in symptoms, or if treatments are helping.

Speaking up for the person you look after, and being listened to as a carer, can help you feel in control and supported. It is important for your own wellbeing.

Carers UK has more information about being heard when talking to professionals. It has guides for England, Scotland, Wales and Northern Ireland.

We have more information about talking to healthcare professionals and about getting support to understand information.

If you find it difficult to talk to professionals, an advocate can help. They are independent of the NHS or adult social care services. They can:

• support you during assessments and reviews
• help you understand what the plan is for treatment or care
• help you make decisions, or challenge decisions if you do not agree
• talk to you about how you feel about assessments and decisions
• help you understand your rights as a carer.

The adult social care service at your local council has information about advocates.

If the person you look after is in hospital, help and support is usually arranged before they go home. Tell the healthcare team that you are a carer, so that you can be part of the plans for going home. They may have a discharge planning meeting. They may invite:

• the person you look after, and you as their carer
• the doctor in charge of their care
• specialist nurses
• an occupational therapist (OT)
• a social worker.

We have more information about what might happen when the person you look after is going home from hospital.

The hospital staff should contact the hospital discharge team or adult social care services to arrange a discharge assessment for the person you look after.

They may visit them in hospital, or they might visit the house of the person you look after to find out what help and support is needed. Then they can make the plan. This might be called a discharge plan. The person you look after should be given a copy.

Before the person you look after leaves hospital, the hospital team should check that:

• they have transport to get home
• they can get in
• someone will be there, if needed
• they have the medicines they need and information about how to take them.

The hospital team will send a discharge letter to their GP. This describes why they were in hospital, their treatment and the follow-up plan.

If there is anything you are concerned or not sure about, talk to the healthcare team. They may suggest a carer’s assessment to make sure you are getting the help and support you need.

The person you look after might also have a holistic needs assessment (HNA). This is a separate assessment to find out what help and support a person with cancer needs. It can be done on paper, or online. The online version is called an eHNA.

HNAs are often done at key moments, such as at cancer diagnosis or at the end of treatment. But they can be done at any point, when needed. 

After the assessment, they make a personalised care and support plan. This should help address the concerns and provide details of other services that might be able to help. 

The person you look after and their GP should get a copy of the plan. If the person you care for is not offered an HNA, you can ask someone from their healthcare team about it.

Care and support plans are for anyone who needs care, or for anyone that looks after someone else. They are an agreement between:

• you
• the person you look after
• their health and social care professionals.

To get a care and support plan, contact the local council adult social care service. They will arrange:

• a needs assessment for the person you look after
• a carer’s assessment for you.

If you do not want a carer’s assessment, the council can still give you information on getting support.

A care and support plan for the person you look after should include:

• the type of support needed
• how this support will be given
• how much money the council will spend on their care.

This means the person you look after can:

• stay as independent as possible
• have as much control over their life as possible
• do the things they enjoy
• know what type of care is right for them
• understand their health condition and care needs better.

It also helps you and others involved in their care understand how you can help.

It is important you understand everything in the care plan. If you are not sure about anything, ask. If the person you look after is offered care from other people, check whether there are any costs to pay. The care plan should be reviewed over time to make sure it still meets the needs of both you and the person you care for.

After your examination, your doctor or nurse will tell you what tests you need: