"Husband diagnosed with pancreatic cancer"

I am writing to you regarding my husband who was diagnosed with Pancreatic Cancer at the end of last year. I should say I believe in the NHS, however we as a family are extremely angry and disappointed with the care my husband received during the investigation and diagnostic stages of this disease.

My husband was admitted to hospital at the end of last year. We feel that his diagnosis was delayed. It took 3 weeks from the date of his admission until we were informed of his diagnosis. My daughter in law and myself both contacted the hepatobiliary surgery department to complain that an ERCP would require over a week's wait as an inpatient. This was ultimately the crucial diagnostic test performed after 2 suspicious scans were undertaken.

It was only after our intervention the wait was shortened to just a few days instead of the following week. I appreciate that investigations may require some wait but given the nature of this test and the circumstances under which it was being performed, this was too long. It is also not clear how a space was found to have this investigation performed after we queried such a long wait.

The issue that upsets us most is both the manner in which my husband was informed he had cancer and the plans for how his future care would be approached.

My husband’s care was overseen by, a consultant surgeon at Glasgow Royal Infirmary. After my husband’s inpatient investigations were completed he was discharged home with an outpatient appointment.

We saw the consultant at this appointment and I can say that this consultation made us feel like we were nothing more than a number. While it must be difficult to break such bad news, there seemed to be a real lack of any compassion. Indeed the 'bad news' came in almost the same breath that he discussed significant improvements in my husband’s condition. We left the consultation less than 10 minutes after we went in and advised that we should direct other questions to a nurse. The nurse was very pleasant but didn't have the information we wanted.

The consultant briefly discussed that the cancer was 'inoperable' due to it spread around a vessel and the Beatson Oncology department would now deal with my husband. The consultant did say there was a very slight chance that they may see my husband back after chemotherapy but did not want to build our hopes up. As you can imagine, this was a devastating blow to our family and in particular to my husband.

My family and I later explored several second opinions from surgeons in other parts of the UK and in continental Europe. These opinions included leaders in this field in Germany and in London. Two separate independent surgical teams deemed that surgery was an option for my husband. This included other NHS surgeons whom we consulted with privately.

As you can imagine, we were delighted with the glimmer of hope of a cure for my husband and he subsequently underwent a Whipples operation as a private patient in London. We now know that a very small number of people in my husband’s position can survive but these chances are negligible unless they have surgery. Given this information, perhaps you can understand our anger at this not being offered by the consultant and the team at Glasgow Royal Infirmary.

We would like to know what justification there is for not attempting a potentially curative operation on my husband, who was perceived to an excellent surgical candidate by other surgeons due to his otherwise good health. Is it the case that the skills to perform this kind of surgery in the NHS in Scotland do not exist, or was the surgeon just not prepared to carry out the operation?

I have read the UK has a dismal record for treating pancreatic cancer compared to other European states - unfortunately my husband’s experience reaffirms it. I do understand clinical opinions vary, but perhaps the surgeon should not have described the case as clear cut as did when obviously it was not the case.

I would also like the issue of sharing of information and my husband’s medical records to be addressed. We contacted several surgical teams to provide us with an opinion and each of them required their own copy of my husband’s CT scan and blood results. We contacted the surgeon’s secretary late last year to initiate this process. We felt a degree of urgency in getting this information given our circumstances but also because an oncology appointment had been made and it would not be possible to have an operation once chemotherapy had started, until the course was completed some months later. The whole process was laborious, required multiple phone calls, several visits to the hospital, repeated form signing. We didn't receive any copies of the scan until the end of last year. The delay was due in part to no one other than the consultant apparently having authority to authorise our request, and the consultant was not available for most of that week.

The service at the Princess Grace hospital in London was vastly different. We had long conversations with compassionate surgeons, the processes were slick and we even managed to have a copy of a CT scan performed there the day after the scan was done.

I have a post op detailed letter to the oncologist in Glasgow and my husband’s GP – at the start of this year that my husband had made an 'excellent recovery'. It was a stark contrast to our service in Glasgow.

To conclude I would greatly appreciate if you could investigate and seek answers.

I reiterate I fully believe in the NHS. My family have never felt the need to use private medical care, sadly this is no longer the case.

I copied in the First Minister Ms Sturgeon and the Health Secretary Ms Robison as I believe my husband’s case would be of some interest to them.

We would be grateful if could help us address the above issues and the questions below.

- Why was our experience at the Royal Infirmary so poor? Particularly issues such as waiting times and trying in vain to get my husband’s CT scan on disk - at a time when we all were emotionally drained.

- Why did the consultant and the Royal Infirmary describe the tumour as inoperable and how it was 'not a tumour that can be resected' when it was resectable according to other surgeons and has now been successfully resected?

Although my husband has a long way to go, the fact he is doing well and that it was correct to operate to give him the best possible chance.

How many people have have died prematurely as they have held the view of their NHS surgeon as sacrosanct? How many more people in the future are going to have their tumour described as inoperable when it may not conclusively be the case?

Many people simply could not afford to be treated privately. Indeed, I should state my husband has worked all his life paying National Insurance. He grew up in a Glasgow housing estate and has had to use his savings for a life saving operation.

Should the NHS not be refunding him all costs incurred including flights to London?