Who has been affected by a brain tumour?

Have you been diagnosed with or do you have a brain tumour?

Yes, I've been told I have a brain tumourNo, but a loved one has been diagnosed with a brain tumour

How old were you when you received treatment?

Child (under 16)Young adult (16-30)Adult (over 30)

What is your relationship to the person with a brain tumour?

I am their

Is the person diagnosed

Living with a brain tumourLost to a brain tumour

How old were they when they received treatment?

Child (under 16)Young Adult (16-30)Adult (over 30)

When did they pass away?

Month

Year

If you are unsure please give an estimation.

When were you first told you had a brain tumour (even if you didn’t know exactly what type)?

Month

Year

If you are unsure please give an estimation.

When were they first told they had a brain tumour (even if they didn’t know exactly what type)?

Month

Year

If you are unsure please give an estimation.

Was radiotherapy or chemotherapy provided by a hospital in the UK?

YesNo

Which hospital provided treatment?

This list is ordered alphabetically by location.

If accessing care privately, please choose this option at the bottom of the list. If more than one hospital has provided treatment or if you don't see an option that describes your situation, please choose "Other" at the bottom of the list and tell us more in the comments.

Comments

If you know, please tell us what grade of brain tumour you were diagnosed with

High grade (3-4)Low grade (1-2)Mixed gradeSecondary brain tumour (a cancer that started somewhere else in the body) or another type of cancerDon’t know yet

If you know, please tell us what grade of brain tumour they were diagnosed with

High grade (3-4)Low grade (1-2)Mixed gradeSecondary brain tumour (a cancer that started somewhere else in the body) or another type of cancerDon’t know yet

Have you had radiotherapy?

YesNo

Have you had chemotherapy?

YesNo

Before treatment

Reminder: please answer these questions on behalf of the person with a brain tumour.

Before treatment, were you told about the following in a way you could understand?

Your brain tumour (grade/type)?

YesNo

Your treatment options?

YesNo

What you might expect from your brain tumour (prognosis)?

YesNoI didn't want to know

The risks and benefits of treatment?

YesNo

What written information (printed or digital) were you given before your treatment?

Before radiotherapy/chemotherapy, did you consider asking for a second opinion about your tumour and treatment?

Yes, I got or am getting a second opinionYes, I considered getting a second opinionNo, I didn’t want to get a second opinionNo, I didn’t know about second opinions

Were you told about how your treatment might be enhanced through research by:

	Yes	No	Not applicable
Clinical trials
Biobanking, storing a sample of your tumour
Donating data about your experience and treatment
Biomarker testing
Flash freezing a sample of your tumour
Other

What other research were you told could enhance your treatment?

Did you take part in any of these?

	Yes	No	Not applicable
Clinical trials
Biobanking, storing a sample of your tumour
Donating data about your experience and treatment
Biomarker testing
Flash freezing a sample of your tumour
Other

What other research opportunities did you take part in?

Support after treatment

Reminder: please answer these questions on behalf of the person with a brain tumour.

After treatment, were you told about the following in a way you could understand?

How your treatment went?

YesNo

What to expect during your recovery?

YesNo

Have you or your loved one used or considered any alternative therapies or treatments?

	Have considered	Have used	Not aware	Not interested
CBD oil or product
Cannabis product
Ketogenic Diet
Herbal Medicines
Prescription drugs not prescribed by a healthcare professional

Please tell us about any other alternative treatments you're considering using or have used.

Has your healthcare team offered/done an assessment with you on your practical, physical and emotional needs and made a written plan to help you (also known as a Holistic Needs Assessment or care plan)?

I’ve had an assessment but nothing further I’ve had an assessment and have a plan in place which is working well I’ve had an assessment and have a plan in place but it isn’t working well I was offered this but did not want it I was not offered this I’m not sure

The responses to the survey aren't viewed in real time but if you need any support please don't hesitate to get in touch with our team who are here to help. You can get in touch via email at support@thebraintumourcharity.org or by calling 0808 800 0004 Monday - Friday 9am - 5pm.

What other support and information has your healthcare team told you about?

What other support did you need after treatment but didn't have?

What other areas did you need support in?

Anything else you would like to tell us?

Reminder: please answer these questions on behalf of the person with a brain tumour.

Has your treatment or care been delayed or cancelled due to the coronavirus pandemic?

YesNoI'm not sure

Would you like to tell us more?

Please tell us more about your experience of radiotherapy and chemotherapy, including what support was good and any gaps in your care

Next we have 6 optional demographic questions. Telling us more about yourself by answering these questions will help us better understand any inequalities in accessing treatment and care.

Would you be happy to tell us a little more about yourself?

YesNo

Your details

Sorry, we’re currently only collecting information about experiences with UK healthcare centres. You can still submit the information you’ve already entered by completing the form and get information you may find helpful with your next steps.

How would you like to answer this survey?

I'm happy to share my contact detailsI'd prefer to remain anonymous

Please tell us your contact details (not those of the person with the brain tumour).

Title

First name

Last name

Email address

Get involved

We really appreciate you sharing your experiences and your feedback will help us create change. If you would be interested in volunteering your time to help with future surveys and research as part of our involvement work, we’d love to keep in touch with you.

Would you like to hear about our other research surveys by email through our Involvement Network?

YesNo

Stay in touch

We’d love to stay in touch and send you useful information and resources to help you with your next steps. We look forward to keeping in touch with you by post and phone with information about our support services, research and how you can get involved with our life-saving work, for example, through fundraising, campaigning or volunteering.

Would you like to hear from us by email?

YesNo

Would you like to hear from us by sms?

YesNo

Please tell us your mobile phone number

We promise to keep your details safe and never sell or swap them with anyone. Our privacy policy explains how we keep this promise. If you don't want to hear from us, or you change your mind about how we contact you, please email enquiries@thebraintumourcharity.org or call 01252 237792

Who has been affected by a brain tumour?

Radiotherapy

Chemotherapy

Before treatment

Support after treatment

Anything else you would like to tell us?

More about you

Your details

Get involved

Stay in touch

	Yes	No	Not applicable
Information about my (suspected) brain tumour
Information about my treatment options
Information about the potential side-effects of treatment