"No support or information after discharge"

I attended my GP in March with a twitchy left eye/altered sensation on the left side of my face and headaches which had been persistent for about 6 weeks. My GP was excellent, gave a very thorough examination and was caring and reassuring. Although we both thought it was likely to be stress related they referred me for an MRI to rule out and underlying cause.

I had my first seizure in May, I was at home alone and contacted ADOC who saw me quickly and referred me to CAU at Crosshouse for review and observation. The staff in CAU were fantastic, very reassuring and took excellent care of me. I had two further seizures that night which I have no memory of however I am now very aware of the excellent care I had received as I think my condition was fairly serious. They reassured my husband and family during what was a very worrying time for them.

I was then transferred to Ward 3D where the nursing staff were very kind and caring and doing a fantastic job, it was clear though that they did not have enough staff and were very busy. The medics who treated me performed various tests and scans and initially had one neurological diagnosis which then changed to something else but they couldn't be sure (initially MS or a demyelinating condition and then a low grade glioma). I was told I was lucky my MRI had been booked by my GP or I would have waited much longer for it to happen and that I would be seen by Neurology in the ward the following Tuesday.

I never met my consultant, but their registrar was very kind and helpful and was discussing my case with Neurology and Neurosurgery at The Queen Elizabeth University Hospital in Glasgow, as this was not their area of expertise. I felt they were doing the best they could for me and was trying to help with my symptoms as best they could given that they were not a Neurologist. I was told on Tuesday that I had not been referred to Neurology, so would not been seen by them on that day. My doctor apologised for this, which I accepted as I felt given the various discussions they had had with Neurology about me, and my potential diagnosis, it was reasonable for them to have the understanding that Neurology would have me on their list to be seen on that day.

I was then given two options, wait in the ward until the following Tuesday or go home and be seen as an outpatient. As I was medically fit to go home and the ward was very noisy and busy I felt I had no need to be there, I chose to go home. Today several weeks later I received a letter from the Neurology Service at Ayrshire and Arran telling me they are now able to offer me an outpatient appointment. Thankfully I have been supported fantastically by my GP since discharge but they are limited in the specialist knowledge on what is a hugely stressful and difficult time for me.

I was discharged home from Crosshouse with no advice on what do if I had another seizure and no support or information for my husband who has no medical training. My medications were not ready for discharge so my husband returned to the hospital to collect it later that evening. By this point I had had no painkillers for 6 hours for the severe headaches I had had since the seizures had started.

I feel very disappointed in the support offered by Neurological services at Crosshouse Hospital given that I have been told I might have either MS or a brain tumour and then sent home without seeing a specialist to wait over 6 weeks to even be contacted about an appointment. I don't feel this level of support or information provision by the hospital or Neurology services is sufficient and feel completely let down by the service.