Waiting for Gamma Knife in Sheffield

Hi,
I am waiting to have Gamma Knife treatment in Sheffield UK.

I found out that I had an AVM last June and and had an Angiogram in February and was then referred to Sheffield.

I am interested to hear if anybody else has been waiting during the pandemic and how long it has taken to get treatment. I’ve heard nothing since my Angiogram and I realise that everything is delayed because of Covid.

This is the first time I have posted anything, but all of your stories and the information you have shared has been invaluable to me.

Thanks,
Nettie

1 Like

@Nettie

Welcome! It’s good to hear from you!

My experience of waiting for referrals on the NHS is that it can take at least a month for the referral to go through, and that’s in “normal” times, so goodness knows how long it is taking at the moment.

When I had my diagnosis by an ENT doctor (who managed to hear my AVM with a stethoscope) at the end of August 2016, it took a month to get an MRI, a further month for the radiologist to report back and a further month to be referred from Leicester to Nottingham. So it is quite a slog.

At exactly the same time I was waiting for my referral to go through, there was a young man in Nottingham waiting for a referral to Sheffield for gamma knife who was on our local news. He’d been waiting 5 or 6 weeks and his referral hadn’t gone through. I thought it amazing that I had never heard of an AVM, and that it is a rare condition, only to have someone in a very similar circumstance to me appear on the local news at the same time as I was waiting for a referral!

I guess the good news is that if gamma knife is your planned treatment, it takes a long time to resolve after the radiotherapy, so isn’t viewed as a time-critical thing to get sorted. (If it was more time-critical, the doc might be urging you towards another treatment, though sometimes gamma knife is the only suitable treatment).

I’d say it’s worth ringing Sheffield to check that they have received the referral at least. That should be something the clerks can check for you – you wouldn’t be disturbing the medics with such an enquiry – and see what they can tell you about what stage you are at with Sheffield.

My own, honest experience is that if you don’t ask, you don’t get. Give them a nudge.

Very best wishes,

Richard

Hi Richard,

Thanks for reply.

It’s a good idea to ring Sheffield. I have spoken to my Neuro Nurse at the LGI and she said that she is keeping an eye on things. I will ring them though.

Gamma Knife was my only real choice for treatment as my AVM in in my Motor Cortex. Mine hasn’t bled (thankfully) so I know I won’t be first in the queue.

Take care,
Nettie

1 Like

Hi Nettie! I had Gamma knife over 5 years ago, 6 months to the day after my bleed. Post bleed when it had stopped and we were waiting for it to clear. I was deciding the course of action I was told that since it was not bleeding I was considered elective. I had no problem falling in to that category! The last thing I wanted to be was an emergency!

I do agree with Richard, I would give them a shout and see what is happening. They are likely super busy and a little reminder if het I’m waiting patiently out here might prove beneficial. Take Care, John.

Hi,

Thank you John and Richard for advising me to ring Sheffield.

I’ve spoken to them and they didn’t get a full referral form Leeds and have requested further details from them which have not been sent!

They said that I have been waiting unnecessarily and could have been seen by now.

I have spoken to and emailed the LGI. They have just emailed me back to say they have sent the details over, so it’s just been a matter of a couple of minutes work.

I have to say, I’m a bit angry but also very relieved.

Thank you again,

Nettie

I honestly think referrals are one of the weak links. It’s definitely worth checking that things have worked.

Well done!