"An upset parent at the end of my tether !!!"

Our son was born with gastroschisis, he has numerous health problems including needing regular urology appointments. As parents that work full time with two other children that also have heath problems that need regular appointment, we struggle a great deal to fit everything in and to try and not make our lives revolve around hospitals and doctors.

My only day off from work is a Wednesday, because of this we have stayed with a urology consultant that has a Wednesday clinic. It is not possible for me to take time out of work for all our children's appointments there's to many. It takes weeks to arrange appointment due to that fact we have been told that we can't make the appointments whilst at the hospital for next time they will send us one in the post. This is always on a day we can not do and I spend days trying to get it changed. I normally have to ring the bookings team that offer some ridiculous appointment 6 months down the line, they then give me the number for the consultants PA (which I already have) as they have the authority to double appointments. So I ring the PA normally it rings out or an answering machine, I leave a message. Some days later I ring again and leave another message. Normally this process takes about a week to speak to the PA. Surly someone can understand my frustration that I have to go through this every time we are sent appointments through the post.

Our son was last seen in June 2015. We finally got him an appointment for 25th November (a Wednesday) our son is meant to be seen every 3 months. This was then cancelled and re-made for 20th January 2016 this was made with the PA of the urology consultant. This appointment took a lot of organising with the consultants PA who had doubled booked our son as he needs to been seen soon. This also was not the only appointment that has had to be made like this, not 1 single appointment that has come through the post has been suitable, I have had the trouble of trying to re-arrange them all in this manner.

So you can imagine my frustration when on Christmas eve a letter came through the door to cancel the appointment we had worked so hard to make and re-made for a Monday. The consultant's PA assured me they had put a note on my son's notes for Wednesday appointments only. They also assured me that we have been miss informed and that we can indeed make any further appointments whilst still at the hospital and we "shouldn't let the reception fob us off, we should refused to go home without making the next appointment." That would all be good if we could actually get into the hospital for an actually appointment.

It then took me half n hour to get through to booking to try and re-arrange another appointment only to be told the next available Wednesday is June 2016 a full 12 months since our son has been soon. Were still no better off as the bookings couldn't help, the appointment system is failing children, at the end of all this is a child who's medical needs are not being met