Neurodiversity and cancer: getting information and support

When you are neurodivergent and living with cancer, it can be hard to get the support you need. This article will help you to find the right help and information.

Neurodivergent people may think, move, process information, or communicate in different ways to those who are described as neurotypical. At least 15% of the population are neurodivergent. Types of neurodiversity include:

• Attention Deficit Hyperactivity Disorder (ADHD)
• Autism
• Dyscalculia
• Dyslexia

When you are first diagnosed with cancer you are given lots of information. This might be information you are told on the phone or in person. You might be given booklets to read. It can be hard to understand and remember everything.

You can ask for the information in a different way if you would find that better. It is important you understand, so ask as many questions as you need. Read our support to understand information.

You do not need to use medical words. Use the words you usually say. Your healthcare team want to know your worries. They can then give you the right help and support.

We provide a range of support services for people living with cancer.

• You can call the Macmillan Support Line for free on 0808 808 00 00, open 7 days a week 8am to 8pm.
• Visit our Online Community forums to connect with others who know what you or your loved one are going through.
• We have audiobooks and easy read versions of our booklets which use simple language and pictures to tell you about cancer.
• Having written resources to take home can make it easier to understand and process complex medical information. All our cancer information is written and reviewed by our team of cancer experts. Find out more about how we produce our information.

If you feel you can, tell your healthcare team about your neurodiversity. It can help them better support you. They can give you information and support in a way that meets your needs. You may want information ahead of appointments so you can be prepared. You may want to get information in different ways.

There is training for healthcare professionals about neurodiversity, especially autism. The Curly Hair Project and other organisations offer this. Training can help professionals understand the needs of neurodiverse people.

Hospitals have a patient support service, such as PALS (Patient Liaison Service). This service can help support you while you are having hospital care and treatment. They can help you understand what is going on. They can also get your views or wishes heard.

The patient support team might be able to arrange for you to see a hospital department when it is quiet. They may be able to explain what will happen, and show you the medical equipment. This can help you prepare for an appointment.

• PALS (Patient Advice and Liaison Service)
• PASS (Patient Advice and Support Scotland)
• Northern Ireland Patient Council

Further resources

• Cancer and the UK healthcare system
• Making treatment decisions 

It is usually OK to bring someone to your appointment. If you are told not to, you can ask why and what other support you will get.

Having someone with you can help you remember what was said. They can take notes. They can help you remember any questions you might have.

Tell your healthcare team about things that help so they can arrange this. You might prefer to wait in a quiet area. You might want to be away from phones or loud equipment. You might prefer to stand or sit during meetings.

Sunflower lanyards

The sunflower lanyard scheme aims to help people with non-visible disabilities get support in public places. People with a hidden, or not so obvious, medical condition or disability may choose to wear a green lanyard, wristband or badge with a sunflower design. This shows they have a hidden condition and may need extra support.

Sunflower lanyards are not recognised everywhere. But many UK organisations, shops and travel companies now understand what the lanyard means. You may find it helpful if you need extra support while you are travelling in the UK.

Some organisations provide sunflower lanyards for free. Or you can buy them from hiddendisabilitiesstore.com

There is no right or wrong way to feel. It is common to have different emotions when you are neurodivergent and living with cancer. Remember, everyone's experience is unique. Try to be patient with yourself. There is help available if you are struggling.

You may find the idea of talking about cancer upsetting or uncomfortable. But talking to someone about how you feel can help you cope with your emotions, feel more in control and less alone. Things you can try include:

• Be open with your healthcare team, they can help provide information about available support.
• If you need to talk, call the Macmillan Support Line for free on 0808 808 00 00, 8am to 8pm, 7 days a week. Advisers can provide emotional support and practical information.
• Seek out support networks or communities specifically for neurodivergent people living with cancer. Connecting with others who share similar experiences can give valuable emotional support and practical advice. You can use our Online Community forums to talk to others with lived experience of cancer.
• Focus on your wellbeing and what coping strategies work best for you.

Further resources

• Cancer and your emotions
• Talking about cancer
• Easy read information

1. To help you manage day to day, focus on what coping strategies work best for you.
2. Take someone with you to appointments, if you can.
3. Be open with your healthcare team about what helps you and ask questions.
4. Get more support. You can visit our Online Community forums to connect with others and access our audiobooks and easy read versions of our booklets which use simple language and pictures to tell you about cancer.
5. If you need more information, call the Macmillan Support Line for free on 0808 808 00 00. You can also chat online or email us.

This information has been written, revised and edited by Macmillan's Digital Content Editor team and checked by Macmillan's Cancer Information Development team.

Learn more about our Digital Content Editors and how we produce our cancer information.