"Undiagnosed at Great Western and John Radcliffe"

About: The Great Western Hospital / Neurology

(as the patient),

This condition developed in late August and it has yet to be diagnosed. I visited my GP on 5th, 14th and 28th September. She conducted tests and ordered blood tests but the net result was she was 'at a loss' as to what illness I had. I was therefore referred to the Neurology dept at the Great Western Hospital, Swindon (GWH). Meanwhile I was forced to take sick leave from my job, which involves physical activity.

During the Neurology consultation on October 12 at GWH I undertook further testing of reflexes and balance. I was told that they were normal and I would be referred to a specialist unit at John Radcliffe Hospital, Oxford (JRH), and that my GP would be advised of the outcome of the consultation. When I pressed the consultant for more information on my condition he said there were 'insufficient clues to reach a diagnosis', but he would order a MRI scan 'to eliminate anything sinister', and several further blood tests. The scan was scheduled for 5th November.

Two weeks later I'd received no notification of an appointment at JRH so I phoned the GWH Neurology dept. I was told that the results of the blood tests and MRI would need to be obtained before a referral was made. I visited my GP on 1st November to discuss the consultant's report but she had received no letter from him. I remarked that progress appeared very slow; she said she would try to move things forward.

Following my MRI scan on 5th November the radiographer advised me that the results would be passed to my consultant who would discuss them with me. I still await that discussion. After several unproductive calls to the Neurology department I spoke to a secretary on 28th November. She advised me that there were no occurrences on my case since the MRI scan and that no letters had yet been sent to my GP or to JRH. She listened to my concerns sympathetically, informing me that the consultant concerned was on duty that day and that she would draw his attention to my case and try to get things moving.

I had heard nothing further by this morning (6th December) so I reluctantly decided to contact PALS at GWH. After giving a short history of my case I was advised that draft letters to JRH and to my GP had been placed on my file on the 29th November, almost 2 months after my consultation, but had not yet been signed off. I was given an assurance that the letters would be signed off and dispatched forthwith and later received a call to advise me this had been done.

This has been my first major encounter with the NHS so I have no yardstick to judge if I have been poorly served by it; I do not know whether my expectations are too high, I have fortunately enjoyed relatively good health all my life and whilst this illness is not totally incapacitating it is certainly extremely debilitating. As well as being unable to work I have had to give up all the physical pursuits I was enjoying up to 4 months ago; climbing the stairs involves a major effort.

Do you have a similar story to tell? Tell your story & make a difference ››