This post will probably be a little out-of sync with the others as I normally try to write positive encouraging stuff but there is something that I really need to get off my chest.
So I apologize in advance for venting.
So here it is
We are not getting enough help.
Now, I don’t mean that in a selfish greedy, I want more of everything including help type way.
I mean that I despair that after 4 years of asking for help with feeding Charlie we are still no further, we have made little or no progress with convincing the doctors here to get us any help.
I intend to write more about the intervening years of how we got from 12 months to age 4 still only eating cheerios and still getting no help or support, but here is where we are up to this week.
We have 2 appointments this week, first with Charlie’s paediatrician on Thursday, and second with the GP Dr Fazlani on Friday.
At our last appointment I asked Charlie’s paediatrician to refer us to an OT or some other feeding therapist or specialist within the NHS or even private, in Liverpool where we live or outside. But she said that we have to go via the GP as she has absolutely no one to refer us to. So we went to see a GP, who told us that it would be better to see Dr Fazlani as he is also a lead clinical commissioner. (For those who don’t know clinical commissioners are the people who are now responsible for buying in health care services in the UK.)
So last month we saw Dr Fazlani a GP at our surgery. He already knew who I was, which is good and he clearly remembered the complaint I had put into the clinical commissioning group. He says that because of my letter (and I imagine other letters from other parents, and probably my MP who also wrote on my behalf) they are going to do a full review of the ASD pathway in Liverpool. I told him that I thought that was great but asked if he had a time frame for the review, he didn’t , which is rubbish!
So I asked him about getting some help for Charlie now, and if he would consider making a private referral, he says that he can’t because its not fair on everyone else. I need to do more research as to whether or not “being fair to everyone else” is a valid reason for not helping us.
I then asked him why It doesn’t seem to matter to him or anyone else that Charlie’s diet is so restricted. Or that the situation and the lack of help has such a huge and very real negative impact on my mental health.
I cried, as I do when I start to talk about Charlie’s feeding. Which is why we need help FROM A PROFESSIONAL, not advice, not peer support, not a book to read, or a table to fill in or a star chart. Actual real help, and support and professional guidance from an actual real person. I saw his hand reach over to begin writing a prescription for me, I told him that I did not want or need anti-depressants. Antidepressants are great in the appropriate situation, and I have used them in the past and I don’t have any problem with them but unless underlying the problem is solved, which in our case is that we still have not been able to access anyone to help Charlie with his feeding, then all they are doing is numbing the pain.
He told me that he had no idea what the connection between a child with feeding problems and occupational therapy is. I tried my best to explain. I tried my best to be clear, I tried my best to stay calm.
He says that he is going to do some research on how to help Charlie and us and get back to me about what if anything he has found. He said that he would call me if he came up with anything – so far he hasn’t called. We have another appointment with him on Friday this week. I don’t hold out much hope that he will be willing or able to make a referral to anyone who can help us, but we will see what he says when we go back there on Friday.
now I am going to try to find my calm place….
And breathe ……