I have received a letter saying my neurologist appointment has been cancelled and rearranged for 16 weeks later. My neuro said she wanted to see me end of July but the appointment came for 13th august so I had to rearrange my holiday which cost me money (admin costs plus extra as mid august is more expensive plus lost free child place ) Now they have cancelled my appointment in august and moved it to December 16 weeks later. Can they do this ? It seems like a long time any help with this I would be gratefull this is not the first time I have had problems with this hospital.
Do you live in South Wales?
Unfortunately this seems typical in my area.
Also I think you will find you cannot fight this unless you consider the private route!
Possibly not what you wanted to here.
Hi Anon, Too late now, but personally I’d never cancel a pre-booked holiday for a neuro appointment, especially if it was going to result in a financial loss. A bit different if I needed urgent surgery or something, but review of a chronic condition like MS? Nah. Strictly speaking, yes, the hospital can cancel if they want - I don’t think you can sue or anything. However, it may be worth pointing out either to the hospital or your GP that the neuro had asked to see you in July, but now it’s gone all the way back to December! I’m guessing they have problems of some sort - either a neuro has left, or is on long-term sick. I waited over nine months for a DMD assessment, because the neuro who does them went sick on the day of my appointment, and didn’t return for months. Nobody took over her caseload. Luckily for me, I wasn’t desperate to start DMDs, and in the end decided - with neuro’s backing - not to have them. But goodness knows if I’d been having back-to-back relapses, and had to wait nine months just for the chance to be considered. This illustrates what can happen if they’re just a single staff member short. I’d have a word with your GP, and see if he or she can intervene. Explain you’re not just making a fuss, but the neuro had asked to see you sooner. If, as I suspect, they haven’t got anyone, then they haven’t got anyone, but it does no harm to ask. Tina x
Ring the neuro department and find out why it’s been changed again. If you are still not satisfied, you can always contact PALS and let them know your unhappy with being messed about.
Good luck xx
Hi no I’m not in wales. Thought I might not get anywhere. It just seems such a long wait to get MRI results and to check that my dmds are actually doing there job. Thanks.
I’ll ring my ms nurse tomorrow see if she can sort something . My hospital is so shoddy I’ve had 2 misdiagnosis, out of 4 hospital admission have only received 2 discharge papers- GP not happy about that already. 2 botched lps, need to have another not for dx but just for neuros notes. There is no neuro ward so when have been admitted am moved constantly to were ever there is a bed. Sorry about the rant it’s just in 16th months I feel they have let me down.
I don’t know what your personal circumstances are anon but your free to travel to any hospital in this country. I chose one an hours drive away for my neuro appointment.
I have a friend with Lupus, who travels to London from Yorkshire once a year because that’s the place that offers her the best care for her condition.
Good luck x
Anon, yes, you have definitely been let down by your hospital. Mine won’t let me out until I’ve got my discharge letter to the GP, referral to District Nurses (if applicable) and any medication. Is there any alternative hospital within reach - could you get to a big city to a hospital with a better reputation for neuro care? If so, I’d ask to be referred there instead, and then put in a complaint to PALS at your current hospital.
And if you’re not happy to have another LP you don’t have to, especially as it’s not for diagnosis - the neuro’s notes can just go without!
Good luck - I hope you get the care you deserve.
I think the advice about changing hospital is good. I left one city’s neuro dept to go to another city nearly an hour away. The neuro at my local hospital is a bth who told me that from my MRI I probably had a brain tumour but it might be MS and not to worry but it would be a minimum 6 week wait for LP to confirm which as they only did 3 LPs a week on a Monday afternoon.
Found this very upsetting and frustrating so moved hospitals via GP referral. New neuro said MS immediately. LP performed by him at first apt. 10 day wait for results.
All hospitals are not equal. MS is stressful enough as it is without poor treatment.
I have frequently had this experience (and worse) with the rubbishy neuro at my local hospital. I advise you to change hospitals and neurologists - I did and I see my new neuro every six or seven months - I’ve never had an appointment with him postponed or cancelled and he really knows his stuff. You can PM me or post on here asking for recommendations for good neurologists if you want to go that way.