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APPGBT Inquiry 2018 - Web Forum

Brain tumours kill more children and adults under the age of 40 than any other cancer

The All-Party Parliamentary Group on Brain Tumours (APPGBT) and the brain tumour community know that having a brain tumour is a devastating and costly business for the patient and everyone around them.

The APPGBT wants to shine a light on these costs, both economic and social, which have not yet been fully set out in relation to brain tumours. There may be costs that simply aren't fair, or invisible, and if so we should take steps to highlight and address them. 

Therefore, the APPGBT is launching an Inquiry into the economic and social impacts of brain tumours to better understand the true cost of brain tumours in the UK for patients and their families as well as the NHS, from the appearance of symptoms right through to treatment and beyond. 

Tell us your experience

As part of the Inquiry, the APPGBT will be seeking the views of various stakeholders in the brain tumour community, such as clinicians, scientists, charities, government agencies, businesses etc. 

However, the Inquiry is open to anyone and the APPGBT is especially keen to hear from any member of the public affected by a brain tumour in any way, including from friends, family and colleagues of brain tumour patients.

We really would appreciate you taking the time to tell us your experience of the costs of brain tumours. Please note the deadline for responses is Friday 30th March 2018.

Submit your experience here

You can read evidence that others have submitted to the Inquiry below. Your evidence should appear within two working days after submission.

94 responses

David Rickford - Wed 21 Mar 2018

I was diagnosed, when I was 28, with a low grade glioma brain tumour, a grade 2 ependymoma in the 4th ventricle. My diagnosis experience was dire and took several repeated visits, admittances to hospital, and examinations by many doctors before one doctor finally recognised it as a brain tumour. By then it was life threatening and meant emergency surgery, which left me with permanent balance, vision and coordination problems. After surgery, I was in hospital for 5 weeks and was supposed to go ...

Tina Dufty - Tue 20 Mar 2018

I see myself as lucky despite being diagnosed with a brain tumour in May 2015. My doctor listened to my symptoms and referred me for a CT scan which identified a mass on my right frontal lobe. An MRI scan followed which confirmed I had a Meningioma the majority of which are benign. I was referred to Southmead Hospital neurosurgery and in August 2015 Mr Malcolm and the amazing team of surgeons, anaesthetists, doctors and nurses removed the tumour in a 10 hour operation followed by four days in ho ...

Gordon Angus - Tue 20 Mar 2018

Our youngest daughter was 17 when she was diagnosed with a grade 1 pilocytic astrocytoma that had become very fond of her cerebellum. Her early symptoms were headaches, blurred vision and dizziness. Despite this she managed to complete her AS level exams in three subjects. There were complications with the operation to remove the tumour which resulted in her suffering from Cerebellar Mutism. She had to re-learn how to speak, use her arms, walk, everything we take for granted. She spent 7 months ...

Samantha Gaut - Mon 19 Mar 2018

Well this is an introduction to me & Meni.....we are both doing fine!!
Why do I sound sarcastic, caustic better ask her , it , the thing that's taking over my head space.......
YES I've got myself a brain tumour and its name is MENI...... Meningioma
And I'm well racked off with her interfering in my life. Why you might ask...because she's been visiting off and on since 2007.... She interferes with every aspect of my life and she even once bought an unin ...

MARTIN FELIX - Mon 19 Mar 2018

My wife (44) was diagnosed with a stage 1 meningoma (complicated) in June 2016 and underwent three 12 hour surgeries in August 2016. She was treated by the incredible team at the John Radcliffe Hospital in Oxford, overseen by specialist Mr Kerr. We are forever grateful for there amazing dedication and support.

We were advised by the specialist during the diagnosis that this would change our lives but at that point we had know idea how significantly.

Firstly my wife stopped wor ...

J Bray - Mon 19 Mar 2018

Unable to work.
Employers will not employ you, if you declare your bt once offered a job.
Equality act not worth the paper it is written on; if they don’t want you they make it unbearable.
Trains, taxi’s and buses cost a fortune as patients have to travel great distances to a specialist hospitals.
Parents have to give up their jobs to care.
Lost of earning parents and patience’s.
Car parking.
Treatment that one cannot get on the NHS or the waiting list is so lo ...

Susan Spencer - Mon 19 Mar 2018

I have a pineal cyst, I was diagnosed after loosing the vision in my right eye, facial paralysis & server migraine. I have had a seizure & at my last appointment I was told if my symptoms feel worse than usual( which on some days can leave you unable to do anything the pain is so bad) then I should go straight to A&E as it could be leaking? It's like living with a ticking time bomb in your head! Im just given medication to help with the pain, This cyst affects every part of my li ...

Helen Jones - Mon 19 Mar 2018

I am writing on behalf of my husband Tony who was diagnosed with a GBM4 Dec 2013. Back in September he presented at hospital with dizziness, sickness, shakes and what he would call deja vu smells. Initially following a CT scan they found a very small area changed which they thought was caused by a TIA but following collapsing and slow heart rate this was then put down to a heart problem and a reveal device was fitted. We kept asking for a MRI scan but this was put off and off but finally just be ...

Heather Taylor-Nicholson - Sun 18 Mar 2018

Diagnosis – Right Posterior Fossa Meningioma in 2010.

I was diagnosed with a non malignant posterior fossa meningioma, with the symptoms of vertigo, absence seizures, facial neuralgia, fatigue and in more recent years, depression and anxiety. The biggest impact of my brain tumour has been the loss of a 32 year career in nursing.

I was going to wri ...

Mary Eastwell - Sun 18 Mar 2018

APPGBT Inquiry Submission Request
Mary Eastwell, DOB 02/06/1950
In 2015 I received a diagnosis of Clinical Depression after several visits to my GP. In the following 10 years, approximately, after that diagnosis, I paid further visits to my GP, I was referred to Counsellors, Psychiatrists, Psychologists, Hospital Doctors and I did everything I possibly could, including one 12-week Group Therapy course and a further 12 months of Group Therapy. I did research as much as I could, reading bo ...

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