I’ve been messed around by GPs for the last 9 years, who have essentially indicated my symptoms were all in my mind. I finally managed to get them to take notice when I developed intention tremor and I got a referral to neurology. The neurologist found clear signs of something amiss and sent me for an MRI and lumbar puncture, which I had in November 2013. Went back for result and met next neurologist, who told me there were many lesions plus inflammatory markers in the spinal fluid he was 99% sure it was MS, but he wouldn’t be making the diagnosis, he’d refer me to the MS specialist. Went to see the MS specialist in March and went through the knee jerk type neuro tests for the 3rd time. He agreed that the MRI report sounded suggestive of MS, along with the positive lumbar puncture, but as his computer wasn’t able to display the scans so he’d end to look and get me back in to see him. So the appointment where I hope to find out my diagnosis is now not til July when I had the MRI and lumbar puncture in November! I’m so sick and tired of being patient. I’m so tired and depressed. My limp is getting worse and I haven’t heard anything from the neuro physiotherapists yet. Not really sure what to do with myself but thank god for my lovely dogs, though they present problems of their own. Sorry but I feel very low.
Thats totally unacceptable. You sound like a typically normal mild mannered/polite person but I’d encorouge you to make a phone call to the hospital department and explain the situation. It’s not your fault they had some kind of computer or communication breakdown. At the very least they might be able to shortlist you for a cancellation.
If you were paying for that appointment privately you wouldn’t accept that lack of care and service and pay for a new appointment to go back and get your results a second time. The NHS still owes you a basic duty of care to deal with you in a reasonable amount of time. It’s probably miscommunication internally and you’ve been bumped to the back of the line as a routine appointment.
Try contacting PALS (Paitent Advice and Liaison Service) all hospitals have one. Explain the situation and they should be able to help. However I would first phone the neuro’s secretary and ask for a cancellation appointment/urgent appointment and explain to them what has happened. I know exactly where you are coming from. I had my first symptons in 1987 ish and have been passed from pillar to post. I have now taken the bull by the horns and made a private patient appointment. It has taken me ages to save up but I see it as saving my sanity. Like you Blue Green my dogs are my life.
Never apologise for feeling low or having a rant, we all understand on here and all have times when we need vent our frustrations and of course also have a joke and a laugh too. Keep us posted.
Hi, sorry you are low at the moment but fully understand you frustration. There must be something wrong with the NHS computers as I had a similar response when I had my first appointment with the neuro consultant. she had been given a hand written report of my MRI results but for a reason she could not access my scans on the computer. Strange considering three days earlier in the same hospital another consultant showed me the scans. Sorry I am venting now. I agree contact the hospital and explain your situation and see if you can get a cancellation. It’s not right you have to wait till July for another appointment. Hope you get a new appointment and feel for you. Jason.
That’s totally unacceptable. The same thing happened to me on my first Neuro appointment…he couldn’t view my MRI results on the computer. He told me to make another appointment asap, by which time he would have seen my results and had time to discuss them with his colleagues. I made an appointment there and then for 2 weeks’ time.
I would definitely make some noise to get an earlier appointment. It is totally unacceptable to be left in limbo for that long…especially as this is purely down to a computer malfunction.
Good luck, and please let us know how you get on xx
Many thanks for your replies and apologies for the time it’s taken for a response from me. I didn’t realise there had been any because I didn’t remember to set email notifications. After my previous neuro appointment when he said he was 99 percent sure it was ms, I did end up going to PALS when there still was no clinic letter to my GP after 5 weeks; I thought I may learn more details than I was able to retain at the time so was anxious to see it and also to know that things were moving forward. It was a good thing to do as he called me, checked in with how things were and was able to give the name of the ms specialist he was referring me to so I had the next link in the chain to go about calling to chase up that they’d received the referral. I liked the specialist and accepted that he would of course need to see the scans before committing to a diagnosis. The thing is, I’ve now discovered that he only has an ms clinic on Tuesday afternoons thus the waiting time. When I called the booking office, there were no earlier appointments to see him than 17 weeks. Okay, next I decide to write to him and expand a little on symptoms I’d been having and past history. At the end I said something about many opportunities having been missed by GPs I’d reported numbness, weakness and balance issues to over the last 9 years and that I’m sure he could appreciate how impatient I was to get to the bottom of it. Yesterday I received a copy of the letter the specialist sent to the neuro that referred me which finally confirmed in black and white “Diagnosis: Multiple Sclerosis (onset 2005)”. He also copied in the MS nurses and my GP. I feel relieved to have a diagnosis, though he hasn’t said what sort so I guess that’s what I’ll be discussing in July in regard to potential treatments. Trying not to think too much about what the future may hold for me and my dogs and no Richard (who was found dead in the garden last August from head trauma suffered when he fell).