Understanding healthcare as a young carer
Find out more about talking to medical professionals, as well as managing medicines when you are a young carer.
If you want to know about the health of the person you look after, doctors and nurses are the best people to ask. They are treating the person who has cancer and have all their medical notes. Doctors and nurses must have permission from that person to share any information about their health with you.
It can sometimes be hard approaching a doctor or nurse because they may seem very important and busy. But if they have permission from the person you look after, doctors and nurses will be happy to talk to you and help if they can. You may find it helpful to have a list of common medical words and phrases that the doctors and nurses may use.
You may go to medical appointments with the person you care for.
5 practical tips for young carers
- Before the appointment, write down any questions that you and the person you look after want to ask the doctor or nurse.
- It is a good idea to make notes during the appointment. These will help you and the person you look after remember what was said.
- Ask the doctor or nurse to explain anything you do not understand.
- If you feel shy or nervous, you can ask an adult to speak to the doctor or nurse for you.
- Try to find out what will happen next.
Sometimes, you may meet support workers or healthcare assistants in the hospital. You can always ask them questions, too.
Here is a tool that may help you talk to doctors and nurses and get the most from appointments.
Appointment planner and record
|Time and date|
|Questions that I and the person I look after want to ask the doctor or nurse|
|Who was there?|
|Summary of appointment (for example, what people said or did)|
|What happens next?|
Making sure you are included
You may be able to tell the doctors and nurses important things about the person you look after. For example, you may have noticed whether a new medicine they take is helping them or causing side effects.
Sometimes the doctors and nurses may talk directly to the adults and not to you. This may make you feel invisible. It can feel like your questions, thoughts and experiences do not matter.
If you find this happening to you, do not be afraid to say something about it. You could try talking to an adult who can support you and speak on your behalf. This could be an adult family member. They can then try to include you the next time you are with a health professional.
If you still do not feel properly involved in conversations with doctors and nurses, there are organisations that may be able to help. You can contact your local Healthwatch or Patient Advice and Liaison Service. They may be able to support you, speak on your behalf or help make sure your voice is heard.
Who else can give you information
There are other people who can tell you more about different types of cancer and treatments. For example, you can speak to experienced cancer nurses on the Macmillan Support Line. They can talk to you about things like chemotherapy and what to expect. Call 0808 808 00 00 (7 days a week, 8am to 8pm) if you would like to speak with someone.
You may need to help the person you care for with their medicines. It is important to handle medicines safely. It is a good idea to make sure an adult knows you are helping with the person’s medicines. This could be a health professional such as a pharmacist or GP, a family member or a friend.
The person you look after should take their medicines exactly as their cancer doctor or nurse has prescribed. You need to check:
- that the person’s name and medicine are correct on the label
- that the expiry date on the medicine has not passed
- how often the medicine should be taken
- how to take the medicine (for example, with or after food).
You can get advice and information about medicines from a pharmacist in the hospital or a local pharmacy. This could be an independent pharmacy or part of a chain of stores, like Boots or Superdrug. A pharmacist may also be able to give the person you look after a pill organiser or a special calendar pack of tablets. These both show the day and time that the tablets should be taken.
Carers UK has an online and mobile app called Jointly. It is available for a small one-off payment. This app can keep track of the current and past medicines taken by the person you care for. You can also upload an image to recognise a medicine quickly. You should check with an adult before paying for the app.
If you prefer, you can use our planner to record which medicines need to be taken and when. It was developed with help from Boots Macmillan Information Pharmacists These pharmacists are available in some Boots stores and can help you with questions about medicines.
As a young carer, you may not want, or be able, to do the same things as an adult carer. If you do not feel comfortable with a task, let someone know. This could be things like taking the person you look after to the toilet or giving them their medication. Another family member or friend may be able to help with those things.
If there is nobody who can help, talk to a health or social care professional. They should be able to arrange for you to get some support.
When you look after someone with cancer, you will probably meet lots of different professionals. We have put together a list of people to make it clear who does what. These are people you may talk to in the hospital or at home. This list will help you understand their jobs and ask the right questions.
It can help to write down the names and details of the professionals you meet, in case you need to contact them.
Benefits advisers are sometimes called welfare rights advisers. They help people get payments from the government. These payments are called benefits. Benefits advisers can also help you apply for grants from other organisations and charities.
Clinical nurse specialist (CNS) or keyworker
A clinical nurse specialist gives information about a cancer type and support during treatment. They may also be your keyworker. A keyworker keeps in touch with you and the person you care for. They are your main point of contact and can help answer your questions.
A community nurse supports people at home. They are also called district nurses. They can give the person you look after medication and provide other nursing care.
A counsellor is someone that you or the person you look after can speak to about your feelings and worries. They are trained to listen to people talk about their problems. They can help you find ways to cope.
A dietitian is someone who gives information and advice about food and food supplements.
A doctor is a trained medical expert. You may meet some of these doctors:
- Consultant – an expert doctor. They are in charge when the person you look after is treated in hospital. A consultant has a team of doctors working with them.
- GP (General Practitioner) – a local doctor who treats people for general medical conditions. You may know this person already. They can help when the person you look after is out of hospital. You can also talk to them about any problems you have.
- Haematologist – a doctor who diagnoses and treats blood disorders and cancers.
- Oncologist – a doctor who treats people who have cancer.
- Pathologist – a doctor who looks at cells or body tissue under a microscope to diagnose cancer.
- Radiologist – a doctor who looks at scans and x-rays to diagnose problems.
- Surgeon – a doctor who does operations (surgery).
- Medical student – someone who is training to become a doctor. They may come around with the qualified doctors who are treating the person you look after in hospital. This helps them learn about what happens.
- Palliative care doctor – a doctor who helps with symptom control and end-of-life care, if needed.
A healthcare assistant supports the medical staff and patients in hospital. They work under the supervision of nurses or other health professionals. Healthcare assistants help care for people who are unwell and give information to them and their families.
An occupational therapist is someone who gives information, support and practical aids to help people with everyday tasks, such as washing and dressing.
Palliative care nurse
A palliative care nurse helps with symptom control and end-of-life care. They also give emotional, social and spiritual support to people who are unwell and their families.
A pharmacist gives out medicine and can explain how to take it.
A phlebotomist is someone trained to take blood samples.
A physiotherapist can help the person you look after with walking or moving around, if they have problems with this.
A psychologist can help you manage your feelings and behaviours, if you are finding it hard to cope. They can also help the person with cancer deal with their emotions.
A radiographer plans and gives radiotherapy to destroy cancer cells. They also support people during radiotherapy treatment.
A social worker can help you and your family sort out practical and financial problems.
A ward nurse makes sure the person you look after is cared for in hospital. They give them any regular treatments that are needed.
Youth support coordinator
A youth support coordinator can arrange activities and help young people stay active and social during and after treatment. They are funded by the Teenage Cancer Trust. You may meet them if you look after a brother, sister or young family member.
A youth worker provides support and social activities for young people and helps them to achieve their goals. They can support young people living with cancer or young people looking after someone with cancer.
Young carer worker
A young carer worker is specially trained to support young carers and their families. They may do different things in each area. Most will work with you and your family to make your caring role more manageable. In some areas, a young carer worker does the young carer’s assessment to find out your needs.
When you are caring for someone with cancer, you may not be sure how to get the information you need. If you search the internet, you may sometimes find unhelpful websites that do not give accurate or reliable information. The Macmillan website has lots of information about different types of cancer, that you can trust.
You can call our helpline, the Macmillan Support Line free on 0808 808 00 00 or chat to us online (7 days a week, 8am to 8pm). Our experienced cancer nurses can answer your questions, give you guidance and help you find support services in your local area.
Many professionals and organisations help young carers, including social workers, hospices and charities. You may want to join a local support group, young carers’ project or an online forum.
Below is a sample of the sources used in our information for young carers. If you would like more information about the sources we use, please contact us at firstname.lastname@example.org
Carers Trust. www.carers.org (accessed April 2020).
Carers UK. www.carersuk.org (accessed April 2020).
The Children’s Society. www.childrenssociety.org.uk (accessed April 2020).
Mind. www.mind.org.uk (accessed April 2020).
NHS. Being a young carer: your rights. Available from www.nhs.uk/conditions/social-care-and-support-guide/support-and-benefits-for-carers/being-a-young-carer-your-rights (accessed April 2020).
This information has been written, revised and edited by Macmillan Cancer Support’s Cancer Information Development team. It has been reviewed by expert medical and health professionals and people living with cancer. It has been approved by Chief Medical Editor, Professor Tim Iveson, Consultant Medical Oncologist.
Our cancer information has been awarded the PIF TICK. Created by the Patient Information Forum, this quality mark shows we meet PIF’s 10 criteria for trustworthy health information.