"trying to arrange a proceedure for my son"

About: Devon Access and Referral Team (DART) Royal Devon & Exeter Hospital (Wonford) / Urology

(as a relative),

Ok I don’t usually do this sort of thing but thought I would add my piece! Sorry its long winded but the background is very relevant. My son has suffered from Kidney problems since birth. He was under a very good consultant at the RDE Exeter. The procedure my son is awaiting was considered some years ago. A referral was made to the surgical team at Exeter by my son’s consultant. This happened very quickly and we attended an appointment. At the time my son was 4 or 5 and we had prepared him mentally for this operation. As far as we were all concerned this would go ahead.

Unfortunately we did not have a very good experience at the appointment and were told that the procedure was not required. (Very bluntly I may add in front of my son who had been prepared for an operation) My son subsequently requested to his consultant that he didn’t have to see the nasty man again!

Over the years his kidney condition has improved and at the age of 6 he was discharged from seeing his regular consultant every 3 -6 months. On his discharge I was told if we ever had any future problems with his health then to come back and see them.

I maybe a little naively presumed I could just ring up and book an appointment with the consultant’s secretary if I ever needed to go back. Now 4 Years on it has become apparent that the operation is needed I contacted the consultants secretary and was told I would have to go through my GP. I explained the situation and was told go through your GP. So I took my son to the GP who agreed that the condition had deteriorated and he needed to be referred for the operation as soon as possible. I explained our previous experience and said I was concerned at how my son would deal with this as he was now older and had vivid memories of the appointment before. The GP said I had a right to choose where the procedure would take place and he could request that we were not seen by the same person as before.

I then received a letter from DART. I was slightly confused as it didn’t give any reference to what it was for just told me to ring a number and give a password. It had no reference that it was for my son or even who DART was. It just said I had been referred by my GP.

On contacting DART I gave the reference number, I was not asked for the password , but some other security questions. I was told a consultation would be booked for my son. I said I was confused and didn’t really know who they were. I was told that he would have to see a consultant before a decision to operate was made. I explained that I wanted him to see his previous consultant and was told he was not the right one? I explained he had seen my son for 5 years so I was pretty sure he was the right person and was told I would be referred to a different consultant who specialised in Urology. Again I explained that I wanted to see his original consultant as I did not want to be referred to someone my son had seen before who he had not had a very good experience with. I was told It was specifically on the letter that I had asked not to see a specific surgeon. I asked how long it would take and was told I could choose a different hospital as at the moment there was a waiting list for Exeter. I explained that I did not to drive my son back from say Bristol / Taunton after a General Anaesthetic and said I would wait for an appointment. I then checked to make sure that once he had seen any consultant there was no chance that he would be operated on by the surgeon he saw before. I was told they could not guarantee this.

SO my question is what was the point of me going through this process? All I wanted to do was to make an appointment with a consultant who knew my son, who my son trusted, who knew he had to have an operation 4 years ago, and now 4 years later he still needs it done. Now I’m being told there is a chance he will have to see the same person who frightened him before. Plus there are no appointments but the guideline are about 18 weeks. A GP and Paediatric Consultant both agreed he needed this operation 4 years ago. His GP now agrees he needs this operation but again he has to see someone else to advise. I thought from the explanation I was given when I asked who DART were they were about a patients’ right to choose and to make referrals easier. My experience so far is that it complicates an already complicated system and the last person who seems to be being considered is my son.

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