For Val, this turned out to be the year of recurring Urinary Tract Infections (UTI’s) that became really persistent from March onwards.
Val made frequent visits to our G. P. surgery where urine samples were either dipped there or sent off to the laboratory at the local hospital and Val would return with more and more antibiotics. Three GP’s had the opportunity to refer Val to a consultant but chose not to with one remarking that there was no point as there was nothing a specialist would be able to do.
It should have been clear to the GP‘s after two or three cycles of antibiotics that their intervention wasn’t working. It was obvious to me that the antibiotics were only suppressing the infection so that although the symptoms had disappeared by the end of that course of tablets they returned within a couple of days. It should have been obvious to the GP’s as should the recognition that they had reached the limits of what they could do therefore making a referral to a consultant both necessary and sensible.
Macmillan Cancer Support in the booklet “About Invasive and Advanced Bladder Cancer” lists the risk factors for people who develop bladder cancer as:
Age – more common in people over 60 (ü)
Smoking – Val has never smoked. (x)
Exposure to chemicals at work (x)
Infection - repeated urinary infections (ü)
Previous treatment for cancer (x)
Diabetes – Val has Type 1 (ü)
Family history (x)
I would have thought that Val ticked enough of the boxes to warrant a referral to a consultant. We will never know if an early referral would have been beneficial.
Due to her Autonomic Neuropathy, Val is also a patient of a London teaching hospital for and every couple of years attends as an outpatient for tests that are spread out over a few days. Therefore, in 0ctober 2016 Val and I went down to London for her latest batch of tests and in particular an appointment had been made by her consultant to see a Consultant Neuro-Urologist presenting a valuable opportunity to discuss her persistent UTI’s.
This consultant decided that Val needed an ultrasound scan and asked her this through her GP and to collect the results of all her samples ready for a further appointment in the middle of December. Val had by this time seen a different GP at our practice and her thoughtful and thorough approach had given Val confidence going forward. She organised the scan and the records but in addition also referred Val to a Consultant Urologist at our local hospital.
Towards the end of November we received a letter from the London hospital informing us that Val’s appointment with the Consultant Neuro-Urologist had been rescheduled to the end of March 2017. This was disappointing for a number of reasons not least of which was the ultrasound scan and its relevance six months later.
I understand that consultants at a hospital such as the National are involved in research, need to attend conferences and teach but….. where are their patients in all of this?
For the last twenty years of my career I was an academic and if I needed or wanted to attend conferences or carry out research which coincided with my teaching commitments then I had to demonstrate to the Dean how those were being covered. So why should the medical profession be any different? The medical profession needs to understand that cancelling a clinic has implications for the patients involved and their families. This is particularly true at the London hospital where patients aren’t attending because they have a splinter in their finger but because they have serious and scary illnesses.
In an effort to move things along Val emailed the consultant concerned and attached the results of the scan and the urine samples only to find the hospital’s email system could not cope with this so she sent them through the post with a covering letter. In both the email and the letter Val asked whether it would be possible for the consultation to be by Skype or even by email but she never received a reply.
This episode led to a revealing insight into the administrative processes of the London hospital, although in our experience there are problems with the administration across the whole NHS. I was angry and frustrated at Val’s appointment being cancelled and it seemed the least that they could do, would be to refund our rail tickets which we had, we thought sensibly, booked in advance. I was asked to send copies of the original and subsequent appointment letters and proof of purchase of the rail tickets which I duly did at the beginning of December.
It should have been the easiest of transactions but it took six weeks and eventually involved the Patient Advice and Liaison Service (PALS), the Executive P.A. to the Chairman and Chief Executive and an array of senior managers before payment was received. At no point was the hospital disputing payment it was just proving so difficult to get the payment made. Now some might say I was being petty but it became a matter of principle which I was determined to see through to the end. It does though raise an interesting question namely what is the financial cost of clinics being cancelled which itself is secondary to the human cost to patients and their families?
