Friday 4 August 2023

Whatever happened to The Barnet Eye - Rog T Cancer Blog

It is fair to say that I've never felt as stressed in my adult life as I do at the moment. I do not wish to discuss this in detail at this point, but I am having an issue with my insurers, who have decided that my work health policy does not cover the treatment I require. I am most frustrated at this turn of events. They are not basing this on my medical needs. They have claimed that the procedure is not a recognised procedure, but my surgeon, argueably the top in the country has provided firm evidence that it is medically the best option for me. The procedure is the only surgical option that is likely to maintain continence erectile function, which to me is a very important consideration. I could have radiotherapy, but there is a far greater risk of complications. Given that most men do not wish to be be rendered impotent by surgery, I stupidly thought that the idea that a well resepected and well read blogger recommending their cover and the benefits of private treatment may be good for business and lead to a change in their rather dubious policy. Our business has had the policy for several decades, it occurs to me that if I'd put the cash in a building society instead, I could have easily paid for the surgery. The procedure is called Neurosafe. If you are a man, you have a one in eight chance of getting prostate cancer, I believe one in four if you from a BME background.

 This week saw the longest break between blogs since I started writing this blog. I enjoy writing, in the past, when I've gone on holiday, I've pre posted a few that I've been working on for a while to keep my readers entertained. I also tend to log in and write a few. However, as readers will know, I am about to undergo an operation to address a re-occurrance of prostate cancer. 

If you do, then you need surgery, Neurosafe is the procedure most likely to enable you to carry on a functional sex life. Some insurers cover it. If you are thinking of taking out insurance, especially if there is a history of prostate cancer in your family, I strongly urge you to investigate their policies. When you are buying a plan, ask the question "If I get prostate cancer and I need to have surgery, will my policy cover the most appropriate treatment, with the best surgeon, at the hospital which has the equipment to perform the procedure". If the answer is no, then go elsewhere. My surgeon tells me that if we'd chosen another insurer, I would not be in this position. You cannot imagine how upset I am. My Dad would describe this as buy a dog but having to bark at the burglars yourself.

Regular, long time readers, will also know that I go away most years at this time with the HCPT charity and a group of people living with disabilities to Lourdes in France, as a group helper. I am deputy group leader of 560. I have been 15 times with the group and members are firm friends. This year, I really didn't know if I was going to go. I eventually settled on a date next week for my operation, that meant I could travel. I left last Friday and returned yesterday. I left with a letter of complaint to my insurers. I took a positive decision to immerse myself in the group and try and recharge my mental resileince batteries. For a few days, I forgot my troubles and have come back feeling mentally more robust.

I learned yesterday via email that my insurers were not backing down, despite the evidence I'd provided. They provided the following explanation

To clarify, our plan provides cover for treatment that is established UK medical practice. Neurosafe does not form part of the established treatment pathway for prostate cancer within the UK currently. Despite published literature in this area, there remains a lack of robust evidence of improved clinical outcomes compared to conventional surgical approaches. Neurosafe is available on the NHS within the research context only. Furthermore, the European Association of Urology published prostate cancer guidelines in March 2023 which concluded that the quality of data is not adequate to permit a strong recommendation in favour of nerve sparing surgery. Therefore, unfortunately ******** is unable to offer funding towards Neurosafe for you.

I forwarded this to my chose surgeon, who responded as follows

Mr Tichborne

******* is absolutely correct in saying that NeuroSAFE is not standard practice in the NHS. However, the reason is that it is expensive in terms of manpower (you need a Pathologist and a pathology technician standing by to do it) and equipment (a cryostat is very expensive). All NHS Pathology departments that I have encountered are overworked and underfunded and I don't expect this to change.

What is not the case, however, is that NeuroSAFE does not provide better patient outcomes and the 3 papers that I sent you are a testament to this. On a very simplistic level, using the information provided by intraoperative frozen sections allows the surgeon to maximise the amount of nerve preservation without the concern that doing so will prejudice the cancer control as the surgeon gets information about the surgical margin status at a time when this can be altered. This is especially important in cancers that are adjacent to the nerve bundle, as is very common and as is the case with you. In hospitals where intraoperative frozen section is not available (most hospitals) the surgeon needs to prioritise either functional results or cancer control and this leads to the unnecessary removal of neurovascular bundles (and post-operative potency) and in large numbers of patients.

I hope that I have explained this clearly enough.

I am not an expert. I am not a surgeon. I can make no recommendation for anyone as to what treatment they should do. But, I have run a business for a very long time. I am extremely annoyed at myself for working with a company that will not pay for a treatment that they admit I could have on the NHS, if I was lucky enough to be enrolled in a trial. I am even more annoyed that they appear to have been trying to mislead me about the effectiveness of the treatment. Having just about got myself to a good place to face the treatment, I am fuming.  

I spent a week not blogging, in an idyllic location with friends I dearly love, to try and approach my treatment in a good place psychologically. I really do not need this right now, but I am not a millionaire, so this will have a massive impact, as I will have a huge bill. If it was a cosmetic procedure, I might no be so bothered, but Prostate cancer is one of the biggest killers of men in the UK and my health insurers seem to want me to not have the best treatment. It is relatively expensive, but it offers me a treatment path that is measurably better. It is not ridiculously expensive, many other treatments they will cover cost more. 

My personal view is that NHS patients should get the access to the best treatments, where applicable. That would require proper funding of the NHS. If the procedure I am having had been offered on the NHS I would have gone that route. But we don't live in a perfect world. Ian Dury once said "I'd rather by a living hypocrite than a dead socialist" when asked why he was having private treatment for cancer.  The sad truth is that men avoid treatment for prostate cancer because we don't want to be rendered impotent and incontinent. Neurosafe gives the best option for avoiding this. 

So if you've been wondering "What happened to The Barnet Eye this week" you now know. 

1 comment:

John sullivan said...

Thinking of you and wishing you a positive outcome Roger.