"Trying to be treated in Neurosurgery Unit at Kings College Hospital"

About: King's College Hospital (Denmark Hill) / Neurology

(as the patient),

I had experienced back pain for many years. When I developed sciatica in both legs that made walking extremely difficult, I went to my GP. Based on the symptoms, he felt that it might be treatable. He explained that the next step would be an MRI. Unfortunately as my condition was classified as non life threatening, there would be a long wait.

I had been forced to take early retirement on a reduced pension because of other health problems. However as I was desperate, my wife and I decided we would find the money to pay for an MRI scan. We then had to pay for a neurologists report to avoid another extended wait. This confirmed my GP's original diagnosis and she referred me in late 28 August for neurosurgery. This was passed to Bexley Patient Management Centre who telephoned me a few days later to confirm that they had referred me to Kings College Neurosurgery Unit.

As I had heard nothing by early October, I telephoned Kings College. Unsure who to contact, I telephoned the neurosurgery department. As no one was available I left a message on the answerphone. Nobody called back so the next day, I rang again. There was not even an answerphone this time, the phone just rang. I called back and spoke to an operator who put me through to somebody. Neither the operator nor the person I spoke to identified who I was speaking to so I am not sure who it was. She took my details and checked the system and stated that there was no record of my referral. She could only suggest that I contacted Bexley Patient Management Centre.

I spoke to Bexley Patient Management Centre on that same day who confirmed that they had dealt with the referral and had sent it 3 weeks previously. She said she would contact Kings College to sort things out and call me back. She called me back about an hour later to say that she had been unable to contact anyone at Kings College but would keep trying. Having heard nothing, I telephoned Bexley Patient Management Centre again on the following day and they informed me that they were still trying. I again contacted Bexley Patient Management Centre the day after that. The original person was not available but a colleague informed me that she was aware of the problem and that there had been no progress.

I tried to contact Kings College Hospital, again without success. In desperation I spoke to the switchboard operator. She said she could make things sound better than they were but in all honesty she knew that they rarely answered their phones. She suggested that I speak to PALS. After she put me through, I explained the problem to a very helpful young lady. She contacted Bexley Patient Management Centre and arranged to have everything faxed through to her. She then personally took the referral through to Neurosurgery and then progressed it through until I finally received an appointment to see a consultant in late October. I was informed that I needed a lumbar laminectomy. I attended the pre-op assessment in the week before Christmas.

This week I was examined by the anaesthetist who confirmed that there were no problems. I asked if she had any idea how long it would be before I was admitted. She suggested that I speak to the receptionist who explained that as I was classified as non-urgent the waiting time could be another 12 weeks. In desperation, I explained that the pain in my legs had become a lot worse and that I was effectively housebound. She suggested that I contact the consultant’s co-ordinator to explain the problems that I was experiencing and gave me a telephone number. I expressed my lack of confidence but she assured me I would get a response.

I rang yesterday morning and left a message on the answerphone. No one rang me back and according to the answerphone, the coordinator doesn't work today. Perhaps I’ll get a reply tomorrow? I really am desperate to get back to something like a normal life.

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Response from Cathy Varley, PALS Manager, King's College Hospital NHS Foundation Trust

We are very sorry for the continuing difficulties and frustration being experienced with communication at the hospital. The Patient Advice and Liaison Service would be very happy to provide assistance in obtaining information about the likley waiting time for a surgery date and could offer the correct contact details for the relevant admissions staff.

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Update posted by Bazzab2003 (the patient)

As usual PALS struggle on against almost insurmountable odds but I truly appreciate their efforts.

The latest chapter in the saga follows.

Finally received a date for the procedure in Feb 2013. As advised stopped taking various medication for treatment of heart condition 12 days beforehand.

Unfortunately date clashed with appointment for Botox treatment of Cervical Dystonia also at King's College Hospital so had to cancel Botox appointment. Disappointingly earliest substitute appointment was in April, never mind, resulting discomfort well worth it if spinal problem sorted!

Pain from spinal problem has increased. now almost completely housebound. Really looking forward to being able to go shopping, take my dog for a walk, or even book a holiday.

Sadly it was not to be. I received telephone call that informed me that operation was postponed until the following week. Disappointing, but bearable, at least it was only a week. As advised continued not taking medication.

Unfortunately 65th birthday was at same time so had to cancel planned birthday celebrations. Never mind, well worth it if spinal problem sorted!

Sadly it was not to be. At 3pm the day before, received telephone call that informed me that operation was cancelled. No replacement date available at present so all I can do is hope. Also waiting to hear if I should restart taking heart medication.

Depressingly, once I start taking the medication I know this will involve at least 12 days further delay. Although, perhaps a 12 day delay is optimistic? Who knows?