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"Customer Journey"

About: Ayrshire Central Hospital / Neurology Queen Elizabeth University Hospital Glasgow / Neurology

(as the patient),

Hi, I had been diagnosed with severe Spinal Stenosis in L4/L5 in November 2020 along with episodes of bladder problems and was referred to Queen Elizabeth Hospital in Glasgow. After having a face to face appointment in February 2021 with the trainee neurosurgeon (who the nurses called twice to say their patient was waiting, arrived an hour late looking like they had slept in their clothes and I was assured by the nurses that they hadn’t been working a 12 hour shift the night before) they confirmed my symptoms would 'go away' and that I was 'just stiff' and to ask GP to refer for physio. On questioning on Cauda Equina Syndrome, this surgeon replied that it wasn’t that, to leave it to the experts and that doctors were getting sued left, right and centre  if they misdiagnosed it. My GP couldn’t understand the findings but awaited the report which didn’t appear after 3 months despite several calls from myself and my GP. An official complaint by my GP on my behalf was eventually made and we asked for a second opinion. 

I was given another face to face appointment in May 2021 with another trainee neurosurgeon, I told them of my worsening bladder problems and my now bowel symptoms and was concerned again as my GP was, that it may be Cauda Equina Syndrome. Another MRI scan was done and I was then told that I would need surgery. The procedure was explained, told to go home and speak to my family and they would call tomorrow after speaking to the Consultant. The call came the next day and I was then told that I didn’t need surgery, my bladder/bowel symptoms were not related to my back, my GP was to arrange physio and investigate my bladder/bowel symptoms but I was to go for an X-ray standing up and contact them once completed.

The X-ray appointment was carried out in June at another hospital. On calling back Queen Elizabeth Hospital to inform them, they said the would pass that on and I was told I would get a call which I received from another trainee neurosurgeon who said the X-ray looked fine but when I explained that my bladder/bowel symptoms seemed to be worsening, they asked if I could come in the next day to see them which I did. This neurosurgeon carried out tests which included testing my reflexes but said they weren’t happy with them so sent me for another MRI, to return to the ward and they would speak to me further.

I was now extremely worried and in returning to the pre-assessment ward, I was told this neurosurgeon had gone but would be in touch with me? I asked if that would be later on today or Monday but the nurse just said she didn’t know.  When I spoke to the surgeon in the Ward they had an unwrapped sandwich and I said that it was a shame they had to eat lunch on the go, but they said they were meeting a colleague after this appointment. I really hope the meeting was work related as I was left in tears worrying and didn’t know when I would get a call back.

The senior nurse said if I hadn’t heard anything by Wednesday the following week then to call in. The call came through at 21.10 PM the following Tuesday and I was told they had a free bed that week and wanted me in for surgery. On asking if they were concerned it was Cauda Equina I was told it was to help me walking as I could only walk 5/10 minutes without stopping but they weren’t concerned about that before?  

Unfortunately, the following day I was told the theatre was closed due to theatre staff having to isolate (surgeons son had Covid) the following week I had to have a Covid test on the Tuesday for surgery on the Thursday but I was told by the nurses in pre-assessment that the Covid test was only valid within 48 hours midday so wouldn’t be eligible for the surgery on the Thursday if carried out after 12PM . The test was carried out. I should have been admitted the following day but there wasn’t a bed available so I was asked to come back in the next day at 7.30 AM so I could have another Covid test. 

Surgery was performed around 3PM, theatre staff and anaesthetist were wonderful. Unfortunately, I was in hospital for 6 days due to nerve issues with my left leg, MRI scan showed everything was as it should be pre-op after initially been told that I would need further surgery due to unstable disc but apparently another surgeon from another hospital checked my scan and wasn’t aware it was post-surgery. I did ask to speak to a surgeon to explain as was extremely worried and it was explained to me that was the reason it wasn’t removed). 

I could continue about my time on the Ward as there were some fantastic nurses and some less so. I know the NHS have been under huge pressure and we could not have done without them during the very trying period but just a little bit of compassion and duty of care please to all your patients would have made my journey so much better. 

I did have to be referred by my GP recently for bowel problems and I can only applaud the Advanced Physiotherapist at Crosshouse Hospital who assured me that they would take responsibility to ensure I received the best care as understood how traumatic the whole experience has been … that I received! 

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