"Delays with IVF/pre-IVF treatment"

About: Glasgow Royal Infirmary / Urology

(as the patient),

My wife and I were referred to the Urology department at Glasgow Royal Infirmary in early autumn 2014. After an initial assessment we were referred, in early December.

Four and a half months later we had our first appointment, at the end of April. Our second appointment was scheduled for mid August 2015. Our second appointment was then cancelled, for no specified reason, and postponed by a further two and a half months until the end of October – more than a year after our GP’s referral.

Following this our third appointment was scheduled for mid February. At this appointment I was referred for a testicular biopsy and I was told the waiting list was short and when we asked roughly how long we would have to wait we were told "not too long".

Six weeks later I attended a pre-op. At this I was told that the pre-op assessment would be valid for 12 weeks. I asked how long I would likely have to wait but no answer could be given. I asked how much notice I could expect to be given. Again, no answer offered.

For the next 7 weeks I waited, checking the post every day, anxious to find out when the operation would be. The likelihood was that the results of the operation would finally give me the answer to a personally very substantial question - namely, will I be able to biologically father a child. Seven weeks passed and, conscious that I had only five weeks left I thought a phone-call would be a sensible idea - especially given a previous administrative error in which my file was filed away rather than being sent from the ACS to Urology – this resulted in a delay in our following appointment which was only noticed because I made a phone-call to enquire. The words "not too long" also encouraged me to get in touch. By this stage it had been 12 weeks with no operation date in sight.

I rang my doctor's receptionist and was told my operation had been cancelled due to a prostate cancer operation taking precedent – which was, I was told, quite common as my doctor also ran a prostate cancer clinic.

My new operation would be sometime in August or September. I asked if I was going to be informed of this had I not called and was told that it was up the doctors to inform patients. I explained that we had been told “not too long” and my doctor’s secretary apologised.

From our initial referral (from our GP) through to the current possible date for my operation it will be almost 2 years. During that time I have had 2 sperm tests. My wife is currently not able to join the queue for any kind of treatment until my results and situation is known. She is of course, or will be, at least two years older by the time we get the results from my biopsy - assuming it is not cancelled again, which of course it could be.

The process of IVF (which we haven’t even begun yet) is an incredibly difficult one to even approach, let alone go through. What has made it even harder for my wife and I is the appalling lack of communication accompanied by miscommunication.

It astounds me that health professionals trained to work in this area of medicine are unable to explain likely waiting times clearly (and with relative context or, where no estimation is possible, an explanation of why), or potential obstacles to those waiting times (I.e. “I also run a prostate cancer clinic so there is a chance that your operation may be postponed”). Having had testicular cancer I have witnessed first hand a man in incredible pain dressed and waiting for a gall bladder operation being told he would have to re-join the queue due to a technical fault in theatre. As a result my more urgent operation was given priority so I have benefited from prioritisation and have no complaint in this instance either regarding my operation being postponed. But not being informed this may be likely/possible beforehand and having to make a phone-call myself to find out, shows huge disregard and/or lack of awareness of the emotional and mental strain waiting can put on people in our situation. I have still not received any written notification/confirmation/apology.

Let me be clear: I do not expect this process to be easy for my wife and I. I do not expect all the NHS’ resources to be channelled towards our situation. I realise that there are 100s maybe 1000s of couples nearby in our situation and do not expect to be given special treatment for any reason.

I do expect to be treated as more than a number in a vast system. I do expect to be given basic information about the procedures, waiting times (or potential obstacles to them). I do expect to receive this information so that I can make an informed choice about what the best option is for my wife and I (I. e. to wait, knowing the potential obstacles, or to seek private health care. Providing this information could only have a positive effect for the NHS as some couples would no doubt choose to go private, therefore freeing-up space for others and reducing the costs of appointments and assessments). I do not expect to drift through two years of appointments, knowing virtually nothing more than when we began and to be no further in the process of IVF. It goes without saying that time is precious in our situation, but perhaps what is even more valuable is a line of communication that informs the patient (as much as is possible) and empowers the patient (as much as is possible). This would be what we have lacked; patient centred care.

We are in the position we are in (almost two years down the line knowing nothing more) not because we have been informed and have decided to take the ‘gamble’ of potential delays etc that are naturally and understandably part of a publicly funded system such as the NHS. We are in this position because we have been given no information as the process has gone along. Were the former true, we would be able to accept and understand where we are in the process. The health professionals dealing with such a difficult and emotionally exhausting area of medicine should be more than well aware of the strains and demands it puts on individuals and should therefore offer patient-centred care that takes these things in to account. Doing this would take a matter of seconds – simple sentences offering information that allows patients to decide what to do.

I would therefore be very grateful if these concerns can be passed to those professionals in a position to ensure that ourselves and all other patients are empowered to make as informed a decision as is possible – particularly as time is so important for all of us.

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Responses

Response from Gwenda Burns, Infertility Network Scotland

picture of Gwenda Burns

Dear Brops

My name is Gwenda Burns, Scottish Branch Coordinator, Infertility Network. I am so sorry to hear of all that you have been through. To read your story and the time you and your wife have had to wait to even know if you will need to go onto the IVF list is totally unacceptable. You are right that the whole IVF process is incredibly hard and it should not be made more difficult. Please do not hesitate to contact me at anytime for support, information or advice - gwendaburns@infertilitynetworkscotland.com

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Response from Lorna Gray, Patient Experience, Public Involvement Project Manager, NHS Greater Glasgow and Clyde

Dear Brops,

Thank you for sharing your experience and I am so sorry to read about the difficulties in the process that you and your wife have been going through. You have written so well and in such detail about the impact that this has had on you both, and I'm sure this will resonate with a lot of people reading, whether they are going through a similar situation or not.

Although you have raised a number of points, the fundamental issue here is around communication. We need to look at this from two angles - one, to see how we can turn this around to become a more positive way forward for you and your wife personally; but also to see if and how we can make improvements going forward for others either currently or in the future.

I have already passed your story on to colleagues working in surgical services, as well as those working in the conception service who need to be aware of the whole journey for their patients. They have already reflected on everything that you have said, but it would also be extremely beneficial if you could get in touch with me directly so that we can start to progress that first part - seeing how we can take this forward with you personally. My email address is lorna.gray@ggc.scot.nhs.uk and I hope that I hear from you soon.

With best wishes to you and your wife,

Lorna

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