How has your experience with the healthcare system been?

[Shannon_TBTC]

Do you feel that your healthcare team have understood your options and needs?

[Jerrycat13]

No I've been treated unfairly. My aucostic neuroma is causing me big problems. I've applied for pip twice as I cant cope at work anymore and have been turned down twice.

[Sarah_TBTC Partner in reply to Jerrycat13]

Hi Jerrycat13,

I'm really sorry to hear that things have been so difficult, lots of people get turned down for PIP when they should be getting it so I know it must be really fraustrating for you. If you haven't already, I would suggest you book an appointment with our benefits adviser who can help with issues with claiming PIP. It's a free service which you can book an appointment online for here thebraintumourcharity.org/l....

[Jerrycat13 in reply to Sarah_TBTC]

Thank you.

[Avarose2010]

Not good, I was referred to Leeds LGI Over a year ago and never heard back from them , this made me dubious about having treatment there so I went private.

[SJa2020]

Really tiring as one has to keep chasing them. It would be easier if I weren’t the patient myself! Loose the will at times.

1. There needs to be an one stop holistic approach to this in the NHS. No one wants to pick that up.

2. Medical records need to be synced - GP records & hospital ones!

Even A&E units in same hospital , I go in on the 8/8 but they do not have access to the reports from my visit on 23/7!!

When you are ill how are you meant to be giving all the info? And not all of us have someone with us able to do that.

This is well timed. My tasks today - after getting over intense pressure in head, falling on left when I walk, frequent chest pains (& practical Ones of getting food!) :

Call GP to chase, call Consultants in other hospital to bring forward appt so they can go thru new scan results in comparison with old! While body just wants to rest & not worry (worries - job do I need to return? Oh need leave Note etc etc etc )

The system could alleviate a lot of the worries patients suffer by a better holistic management .

[Myway in reply to SJa2020]

This totally mirrors my unfortunate experience, to the point I had to take all my data from the hospital to my doctors, who informed me, that they had not been given any information from the specialist.I’m always having to chase and don’t feel a part of the system either.

I feel your pain!

[Lana95]

My ENT(worthing) is still shut so been 2 months and still no idea when they will open. I’m waiting for confirmation scans.

[lupie-Cathy]

No treated badly as far as I’m concerned my Neuro surgeon wanted to operate I wanted gamma knife had to fight to be referred eventually was referred to Sheffield and had gamma knife which was great but then passed back to neurosurgeon for follow up have had to fight to get results of scans every time They usually just say oh it’s fine I would like to know if there’s no growth or some regrow this or what! I had a scan last June 2019 still not heard the results ! Pretty disgusted with the whole system at the hospital I’m under!

[Sunsets90]

I am split across 3 hospitals (was 4 with Oxford in the mix for fertility preservation in the early days) and 2 trusts so communication can be very frustrating. I have had no issues with the QE in Birmingham, they have been marvellous and are really easy to get hold of.

Most of my issues lie with the Glos Hospitals trust, where Cheltenham Oncology are always contactable and reliable, whereas in contract GRH are like getting blood out of stone. I can appreciate that this year they have had it really hard with Covid (or little C as I call it now as Cancer is big C and I'm bored of hearing of the word Covid/Coronavirus), but it's quite something when they forget to book an urgent MRI scan in May and your 6 monthly surveillance scan in July comes along first.

However, I have to say they were not off to a flying start as GRH was where I had my 1st MRI and they never sent the letter out for the appointment to tell me about my tumour. Instead my poor GP had to tell me, via calling to say you need to come to the surgery and bring someone with you - at this point I know what he was going to say. Felt sorry for him as he had never had to tell anyone that they have a brain tumour before.

Following their lack of reliability I asked the same GP if I could be transferred to Hereford hospital, which is how I had the op at QE Bham, as they are the link hospital. Southmead, Bristol is GRH's link. The reason I am back with GRH is due to my consultant Sam Guglani transferring from Hereford to Chelt, so my neurology team are at GRH.

I am still under QE Bham for neuro as well as the 100,000 genomes project.

[Smiffy65]

Not really. I was told that it wasn't the size of the AN that was the concern but where it was sitting but in correspondence it's oh it's only small so no need for concern despite at the last two hospital appointments neither consultant had a copy of my MRI scan. I still really don't know how big it is. It started at 1cm at a scan in June 2019 and my last scan was Dec 2019. It took 3 months to get a result from my Dec scan and I was told at the beginning of April 2020 that it had grown within the 6 months between scans and they wanted to see me but appointment isn't until end of this September. If it had grown between the 6 months last year what on earth has been going on this last 9 months! Now my consultant appointment has been changed to a telephone call courtesy of Covid. How is that going to work? My hearing is worse but I can't have the usual test that would be done ahead of seeing my consultant and I suspect I'll just get told I'll need another MRI which will probably add another 6 months to the process. I won't let my husband be on the call when it finally comes as he's close to exploding so I'm trying to deal with my health and trying to calm him down. I'm trying to carry on as usual and I'm still working but my symptoms are effecting me daily (constant headaches, stabbing pains, hearing probs, facial numbness, atrocious balance, tiredness, memory loss and this strange thing when I'm typing at work where I jumble all my words up). The balance problems are the worst, the AN might not kill me but if I keep falling over as I do that may well do the trick! My GP arranged some physio for my balance and couldn't understand why the hospital hadn't after she'd spotted me walking into the GP surgery ahead of my appointment (my GP is fabulous). I feel because I try and carry on as normal the best I can it's just assumed that I'm ok but I have good days and bad days like everyone with an AN. I have a small inheritance from my father who recently passed, it's not huge but would pay for a private consultation so I'm pondering that at the moment. I don't want to waste what he worked hard for but some days I can't cope with the waiting. Sorry for the long message, needed to let it out

[Shannon_TBTC Partner]

I am sorry to hear that Smiffy65, it sounds like the lack of communication has been incredibly frustrating for you. I am glad you have a great GP to arrange physio and it sounds like they really have your best interests in mind.

I would reccomened explaining your concerns during your telephone consultation to understand what the consultant wants to do next, and how long this would take. Should you want to talk about the appointment or ask any further questions, you can contact our support team on 0808 800 0004 (Mon-Fri). Alternatively, you can email us at [e-mail] or click the live chat button on our website to speak to a member of our support team.

thebraintumourcharity.org/l...

With best wishes, Shannon.

[Smiffy65]

Thanks Shannon, let's see how this phone appointment goes at the end of next month

[Shannon_TBTC Partner in reply to Smiffy65]

Keep us updated how it goes!