Is 69 weeks a normal waiting time to see a neurosurgeon for the first time?

[SuziWuziCruizi]

I was recently diagnosed with a 1.7cm meningioma in my frontal lobe (an incidental find after a suspected stroke) I’ve had 2 CT scans & an MRI scan at my local hospital & have been referred to neurosurgery at a bigger hospital nearby. When I rang to chase up my appointment, I’ve been told it’s a 69 week wait & not to expect to hear anything until this time next year. As they have no idea how long I’ve had this & how fast it’s growing, is this normal to wait such a long time or should I be taking some other steps to be seen sooner? Obviously I’ve got a whole heap of unanswered questions about the future, what part of the frontal lobe it might affect so I can monitor for symptoms, etc, etc. As I live alone & already have numerous health issues, the extra worries are having a detrimental affect on my mental health

[Moby50]

I'm so sorry to hear that you are experiencing problems. Unfortunately since the combination of lockdown and the strikes the waits for neurosurgeons from my experience has completely changed everything. I was on watch and wait for many years and was finally told after not having had my usual scans during lockdown that I needed surgery straight away, I then waited over a year for it and was on an emergency cancelation list for over 6 months. I too had 2 suspected strokes in that time but this did nothing to speed things up. I had an amazing GP who continued to push for me, so if you can get your GP to chase the appointment for you.

In the meantime the brain tumour charity have great information about meningiomas so use this and their leaflets to get ready for your appointment and write down your questions so that you don't waste the valuable appointment and don't be afraid to ask for a second opinion if you don't like the neurosurgeon you have been assigned, you need to feel comfortable with who you have been assigned. So again if its a long wait with one hospital try another one and see how long their wait is, you don't have to go to the one you have been assigned to by your GP, just because it's the NHS you still get to choose, don't be afraid to ask. Good luck.😀

[Zhaleh_TBTC Administrator]

Hello, thanks for reaching out and I am also very sorry to hear about the delays you’ve experienced. We know that this can unfortunately occur. However, the hospital should still be able to provide you with a clinical point of contact for questions or concerns you may very understandably have. You can ask them if you are able to have the name of a Clinical Nurse Specialist you can speak to, or email. Another thing which some people consider is getting a second opinion. You can find out further information on this process on our webpage here: thebraintumourcharity.org/b...

If you feel you need to raise a concern about the service you have received, you can go through the PALS department. You can find the details for PALS at your local hospital here: nhs.uk/nhs-services/hospita... . They can also help to chase things up for you.

I hope this helps with some potential next steps. Please do reach out to the Support Team if you need to talk – you are not alone. We are open 9-5 Mon-Fri. 0808 800 0004. Warm wishes – the Support Team.

[Tumour149]

thank you

[Mamtanna]

Hi Suzi,

I waited 16 months to see my Neurosurgeon.

I was told I had two meningiomas, also an incidental find, which turned into at least eleven when I was shown my scan results at my first Neuro appointment.

I’ve since had another MRI brain scan with contrast, but almost 6 weeks later I’ve yet to be given an appointment to discuss the latest findings.

Unlike you, i haven’t had any seizures or suspected strokes, you have my immense sympathy and you must be worried sick.

I found the Brain Tumour Support Charity who have been really good in advising me of my patient rights, and who have advocated on my behalf to also try and find out when I will be seen. I’ve been advised that if I don’t feel I am being treated fairly I can contact PALS - the Patient Advice and Liaison Service at the hospital where I am being treated.

Don’t be fobbed off, as I feel I’m being, we have rights and if we aren’t happy we are entitled to get a second opinion and also to see all our test results etc.

All the very best xxx

[Mamtanna]

I have just worked it out and I waited 67 weeks between my MRI in February 23rd,2023 and my Urgent referral on June 6th, 2024.

It’s dreadful isn’t it?!