"My Dad's renal care when terminally ill"

My dad was diagnosed with renal failure in 2017 and attended The Victoria Hospital Kirkcaldy 3 times per week to have dialysis. 

Transport was arranged for my dad to receive his treatment. I would often hear dad say to me that although he was one of the 1st patients there he was always taken last, I met my dad at the dialysis unit one day and witnessed this which I found a bit strange as it just didn’t seem logical. Dad sometimes had to wait up to two hours in the waiting room before being taken. 

In February 2018 my dad was diagnosed with Mesothelioma which was totally devastating news for both of us, his prognosis was weeks to months but there was no follow up given to dad or myself about where we went from there. Dad was discharged and continued with his dialysis as planned, bearing in mind he has a life limiting illness and was quite poorly having lost a lot of weight.

I was distraught to hear that dad was still being made to wait for up to 3 hours before having his dialysis even though the ward knew of both his diagnosis and prognosis. My dad was very upset, anxious and at times angry due to this waiting around but when he asked staff he was told that there were reasons for other patients being taken before him. What can be a more important reason than having a terminal illness limiting the time you have left to live?

I contacted the ward to ask why and was assured that this would change And it did for one day!!! I contacted patient relations at the hospital and they said they would investigate and get back to me but after chasing them up several times and getting nowhere I decided to contact the local MSP who contacted the hospital on my behalf. I also asked for support from Asbestos Action Tayside as I just felt that dad or me were not being heard or listened to. 

I live an hours drive from Kirkcaldy and work full time, I was also caring for my dad as I have no other family to help. I couldn’t believe how the caring profession could be so uncaring about a patient who is nearing the end of their life. I eventually had a meeting with senior staff at the dialysis unit and they advised me that they had no knowledge about my concerns as they hadn’t been made aware, even though I had telephoned the ward and spoke with several nurses about dad's waiting time. I understand that all patients have different needs but I feel that when a patient is terminally ill the system needs to be more fluid  to meet that patients needs bearing in mind the other symptoms the patient may be suffering from both mentally and physically. 

How would anyone feel if it was their father in this position? Most of the blame was put upon the transport situation as cuts had been made and that St Johns were picking up patients early to take the morning patients home in time but there is absolutely no excuse to treat a terminal patient in this manner. If I had lived nearer I would have taken my dad myself but it just wasn’t possible.

Sadly my dad passed away in August 2018 and it’s only now that I feel I can talk about my experience, it was an absolutely terrible year from diagnosis until dad passed away. I was also told from the Palliative care nurse that they would be in touch with myself in 3 months time regarding counselling but this never happened either.

I really wouldn’t like anyone else to have to go through what my dad had to. This was dad's first experience of ever being in a hospital at the age of 74 as he kept in good health until his kidneys failed. I don’t know a great deal about the medical profession but surely every patient should be treated fairly in a dignified manner being mindful of their condition/s.