Improving Brain Tumour Care surveys share your experiences and help create change

Talking to your doctor

It’s important to understand what might happen during the appointment and what questions you want to ask.

Brain tumours are rare, however, if you’re worried and a symptom persists or if you have more than one symptom of a brain tumour then:

  • Talk to your doctor
    GP appointments are usually quite short, so make sure you find out how to best prepare for your appointment.
  • Get an eye test
    If your symptoms are limited to changes in vision and/or headaches, get your eyes tested by an optician before seeing your GP. Eye test are not just about testing your vision, but can also give an insight into your wider health.
  • Go to A&E
    If the symptoms are sudden or severe, or if experience a seizure, you should go to your emergency department or call 999.

Should I speak to a doctor during the coronavirus pandemic?

We understand you may feel worried about seeking help from your GP during the coronavirus pandemic – but please don’t delay speaking to a healthcare professional.

The NHS and your GP are still here for you and have made changes that make it easier to safely speak to a healthcare professional and get medical help if you need it.

It’s more important than ever for you to prepare for your appointments by understanding what might happen during the appointment and what questions you want to ask.

  • Write down all of your questions and bring this with you. You can also consider emailing them beforehand so that they understand what you are going to ask ahead of time
  • Make a note of all the changes you have been having such as when your headaches are, or when you feel nauseous. You can do this using our BRIAN quality of life tracker. Bring this with you to show your GP during your appointment
  • You can ask your doctor if your symptoms could be caused by a brain tumour. You may wish to show them our website
  • You should take someone with you to your appointments, so that they can help you take notes, or remember things that you might not. It is also good to have someone there who can help support you emotionally as well.

Before your appointment

GP appointments are usually quite short, so it may be helpful to prepare for the appointment to make sure you remember everything you want to say and ask.

You could write a list of the symptoms you want to tell your doctor about. You can include when these first started, how often they’re happening and if they’ve changed or got worse. If anything relieves the symptoms or makes them worse.

If the appointment is for your child, you may want to ask their nursery or school if they have noticed any symptoms. You may be able to put together a record of your child’s symptoms and note when they have changed or worsened. Parents or carers normally know their child best, so will notice changes in health, appearance or behaviour. You should mention any concerns to your doctor.

During your appointment

Explain your symptoms to your doctor, tell them how long you’ve been experiencing them and how they make you feel. If you’ve written notes or kept a diary of your symptoms, show this to your doctor.

You can ask your doctor if your symptoms could be caused by a brain tumour. You may wish to show them our website or the HeadSmart information for babies, children and teenagers.

The doctor may wish to examine you or your child to assess the symptoms.

Outcomes of the appointment

Your doctor will usually do one of three things:

  • Reassure you that the symptoms are not due to a brain tumour. This may be because they are able to diagnose another condition or they feel there is no cause for concern. They should explain the reason that they’ve reached this decision. The doctor may refer you or your child to a specialist if they think a different condition is causing the symptoms.
  • If the doctor thinks that the symptoms might be caused by a brain tumour, they can refer you for a brain scan or to a doctor who’ll arrange the scan. You may also be sent for tests for other possible causes.
  • Sometimes the doctor might ask you to return for another appointment, usually within 4 weeks or if the symptoms get worse. This could be because they think a brain tumour is unlikely but can’t be ruled out. If the symptoms don’t go away or become worse, further investigation into the cause may be needed.

After the appointment

You should follow the steps that your doctor has given you. If you don’t hear from your doctor or the specialist they’ve referred you to within the expected time, contact your GP surgery to follow up.

Keep track of any changes in symptoms. You can write these down in a diary to show your doctor or specialist.

If your doctor has reassured you that they do not think you have a brain tumour but you continue to be concerned, you’re entitled to ask for a second opinion.

What if I’m struggling to see my GP?

All practices should have emergency on the day appointments available. Most GP practices, particularly the larger ones, will have a mixture of doctors, nurse practitioners and paramedics all doing triage appointments. An appointment can be made with any of these to be assessed.
In a life-threatening emergency, you should ring 999 – these situations include but are not limited to:

  • a headache that has come on suddenly or is extremely painful
  • the first time someone has had a seizure or if a seizure last over 5 minutes

If you feel like you or your child need medical help fast, but it is not an emergency ring 111 – you will be asked a series of questions by the call handler and they will be able to tell you to follow, these may include things such as waiting for an out of hours clinician to ring you back or going to an Emergency Department.

Go to the opticians – if you are waiting to see your GP for recurrent headaches it is a good idea to book in to see an optician. The optician’s can tell a lot about your general health from examining your eyes and are able to see some signs of brain tumours. Please note, you should still book in to see the GP even if your optician says your examination is normal.

Download and fill in the HeadSmart symptoms diary or download and fill in BRIAN symptoms tracker – whilst waiting for your appointment it may be useful to document your/your child’s symptoms using the symptom diary so you don’t have to remember them all to yourself. This can be easily presented to your GP and they can use this to get a better understanding of what symptoms you have and when you get them.

Telephone consultations – most GP practices are making use of telephone consultations. If you are struggling to find time to attend the GP practice requesting a telephone consultation may be beneficial to both you and your GP as these can be done from any location. If the GP feels they need to see you in person to better inform their decision making they will then request an in-person appointment. Sometimes, the GP can get all the information they need over the phone without seeing you in person and will be able to advise you of the appropriate next steps.

Persist – it may take a few days of you ringing up to request an appointment but don’t give up. Your health is important and you should always make time to discuss changes in your health with your GP.

Share your experiences and help create change

By taking part in our Improving Brain Tumour Care surveys and sharing your experiences, you can help us improve treatment and care for everyone affected by a brain tumour.