"I feel that the process could be much improved"

I feel that the procedure for diagnosis/informing patients of their test results could be improved. Below is a timeline of my experience to highlight the delays and lack of information that occurred.

I had my first consultation with a neurologist at Ayr hospital two months after being referred. I was happy with how quickly I was seen after referral. At this appointment I was examined and told that the good news was that it wasn’t anything serious but the bad news was that they didn’t know what was wrong with me so they would like to do an MRI scan. I was reassured that it was nothing serious like MS or anything like that because people with MS can’t do those types of tasks.

8 days later, I had an appointment for an MRI scan at Ayr hospital and was very impressed at how quickly I got an appointment for this.

This is where things started to go wrong for me. I had been for a nerve conduction study (NCS), as referred by the physio department to try to get to the bottom of why I was experiencing foot drop when running or walking longer distances.

Two months after my MRI scan, I had a follow-up appointment where they said that the NCS had not shown any reasons for the foot drop and they asked about the MRI scan that I had been for. I explained that I hadn’t heard back so I assumed that they hadn’t found anything concerning. They said that I should chase this up and went away to check. They returned and advised that they’d spoken to the neurologist’s secretary and that I would be getting an appointment the following month.

I had my follow-up appointment with the neurologist at Ayrshire Central Hospital (11 weeks after my MRI scan) who then told me that my scan results showed deterioration from a previous scan in 2008 that was indicative of MS and that they would need to do a lumbar puncture to confirm.

A month later, I went to the Queen Elizabeth hospital for my lumbar puncture.

I phoned neurology a week later and was told that my results weren’t back yet and that they could take 2 weeks.

I phoned neurology and was told that the consultant had reviewed my results and dictated a letter that would be sent to my GP and that I would get a follow-up appointment in three months time.

A couple of days later, I had an appointment at my GP surgery that I had made to ask if they would put me out of my misery and tell me the results of my lumbar puncture. I realise that this put the GP that I saw in a difficult position as she had to tell me that yes I did have MS. She was lovely and very apologetic that my diagnosis had been dealt with like this. The letter that they had been sent was worded as if the neurologist had seen me on the date of the letter so she was shocked to hear that they actually hadn’t intended on telling me until three months later.

I still feel very abandoned by the neurology department. As far as I’m aware there is a target to assign patients to an MS nurse within 2 weeks of diagnosis but I assume that I won’t even be referred to an MS nurse until my next appointment because as far as the neurology department are concerned I haven’t even been diagnosed yet. The doctor at my GP surgery and the doctors and nurses at the Queen Elizabeth hospital have been wonderful but I feel that the process within the neurology department could be much improved. I think that expecting patients to wait 11-12 weeks to find out results from tests causes unnecessary stress and anxiety at a time which is already difficult.