For some time now, we’ve been seeking some emotional support for M as he struggles to come to terms with his condition and the impact of a restricted diet and the associated health issues on his day-to-day living. As the result of a GOSH recommendation, we sought a referral to our local CAMHS service to see if they could offer any counselling to M. We also hoped that we would have access to some family support as we all find it difficult at times, G especially, as she deals with her own reactions as well as M’s mood-swings.
Sadly, our experience of CAMHS has been less than favourable. The worker we saw had not read M’s notes, didn’t understand why we had gone to GOSH for treatment and had no idea that he had been diagnosed with a chronic bowel condition. She talked about using sticker charts to encourage him to use the toilet and failed to recognise that, in M’s case, it wasn’t that he wouldn’t use the toilet, but rather that he couldn’t. At our last meeting, Mike and I sat in disbelief for nearly an hour and a half whilst she repeated her theory that a reward system would be the answer to all our woes; and our jaws hit the ground when our repeated comments about his “diagnosed chronic bowel condition” finally sunk in and she pondered whether maybe she would benefit from taking a look at the letters written by his consultant from GOSH.
In the letter that followed, she discharged him from her care and suggested that we instead got a referral to our local NHS Bowel and Bladder clinic for their input. I was unsurprisingly sceptical, having spent some time at one when G was suffering from her own bowel problems a few years ago, and feared that the ubiquitous zticker chart would form the crux of their treatment plan. However, I have long since come to the conclusion that the only way to get the help that we need, is to agree to whatever steps the health professional concerned recommends and tick those boxes to prove that we really are taking the situation seriously.
And so this past week saw us attending the local Continence clinic, which runs once a month in our GP’s surgery. I was brutally honest with the nurse we met with, T, telling her within minutes of sitting down that I was not expecting much to come from our meeting. I apologised for my negative attitude, but admitted that I felt I needed to be honest, so that she understood the position we were starting from. At this point, my expectations were low – and about to be blown out of the water!
T was not phased by my comment, but instead admitted that she too was uncertain whether she could help M or not, but having read his notes thoroughly and all the letters from GOSH, she was keen to offer whatever help and support she could. I knew at this point, that this meeting was going to be a very different one from that I had been anticipating and the following 45 minutes proved this to be very much the case. We talked at length about M’s history, his diagnosis, the experiences over the last 9 months and the problems we have recently faced.
She expressed no surprise that M has been struggling emotionally to come to terms with his life as it now is and discussed with me about how isolated M must be feeling. She pointed me back in the direction of the wonderful charity, Eric, which offers support and advice about childhood continence issues. Not only do they have a telephone helpline manned by knowledgeable and sympathetic volunteers, but there is also an area specifically designed to enable children to discuss their toileting problems with others in the same situation should they want. We had made extensive use of their website when struggling with G’s problems, though we had never thought to look at the children’s area with either G or M.
Most importantly, she suggested a change to M’s prescribed laxatives, but was insistent that I discussed her proposals with our gastro team at GOSH, who fortunately we were seeing the following day. My biggest fear was that she would be as reluctant as our local hospital to get involved in M’s care and would not be willing to discuss him with GOSH – nothing could be further from the truth. T reassured me that she would work alongside GOSH, and us, to make sure that M is getting the very best care and would help us make those little adjustments to his medicines that feel so complicated when I’m discussing them over the phone to London.
We still have an initial assessment with our local paediatric team in place for February, and it would be fantastic to have them on board too, but I no longer feel so dependent on that relationship working out this time round. We have found instead, an even more local solution to our need for support and I have never been so glad to be left eating my words and being proved wrong.