So Iām going to apologise in advance because this is going to be a bit of a rant.
We are currently waiting on so many referrals and appointments that we are at a stage where we have nothing but seem to have it allā¦ I know thatās contradictory. We have no appointments and no diagnosis but we had plans set in place to work our way forwards and it felt really good to be in that position.
I was really positive about it all but I guess I was just delusional. The glass isn’t half full like I initially thought it was. What makes it worse is whilst I felt this way I could throw my efforts into supporting Dave as he comes to terms with the fact William isn’t developing at a normal rate. He was very open and honest in his post (which knowing him was probably his first and last) but that doesnāt mean he isn’t still struggling to adjust just our situation.
WHY? WHY GOD WHY? Do we get post on a fucking Saturday?!
So in drops a letter. Private and Confidential, Mr William Graham Buckleyā¦ for a fleeting moment I was excited. What an idiot eh? I opened that envelope quicker than birthday cards with money in them. I didnāt understand. It was regarding a referral but I had no idea what it was for as it didn’t say and nothing about it rang a bell in regards to our last TAF meeting. I wasnāt expecting it and as it was a Saturday, there was no one I could call to find out. I did what any sane and rational parent does. I turned to google, I asked Alexa āreferral to CHCP, Hull Children’s Community nursing team.ā Nothing. I asked on the SEN Parents group I recently joined on Facebook. Only one person commented and it wasnāt with the answer. Spoke to my mum and sister, couldnāt help but seemed like a step in the right direction. The letter said to wait until today and if I hadnāt heard anything call themā¦ Just to put it into numbers. The letter was dated 27th November, we received it 7th December and today is the 11th December. So I was a good girl and waited those 4 days which seemed like a lifetime.
I made the ridiculous decision to call whilst at work. I always do this and I should have known better.
Smear test results ā bad news ā called at work
Biopsy results ā bad news ā called at work
Job interview ā bad news ā called at work
Glucose tolerance test ā bad news ā called at work
I should just stop taking my mobile to work!
Call One. I called the number on the letter and a lovely lady called Jess answered. what was the referral regarding? I donāt know maybe his suspected autism. What does the letter say? To call you if I hadnāt heard anything. Iām sorry Mrs Buckley he isn’t on our system but the department you need used to be based here and I think thatās why you have our number. She gave me the number for the paediatric team who I should be dealing with. Just a simple mistake.
Call Two. I called the new number, it took ages for anyone to answer. My anxiety levels rising rapidly. I just wanted to know what referral I was waiting for. What next step we have for William. A lady answers that didnāt give me her name and Iām almost certain is in the wrong job! The attitude on it was appalling. Why are you calling. Referral. Was given your number by blah blah blah, what’s it regarding. Honestly felt like I was in groundhog day ā². She had no idea what the hell I was talking about. He’s not on our system. The letter means the doctors are putting a referral through but it says theyāve sent it? No its sayinging they are doing itā¦ I was the looking at it but ok then. Call your GP.
Call Three. Call taker at City Health Practise answers, no proper access to their systems but pleasant enough. Very understanding of how upset I was and apologetic. Doesnāt know what Iām talking about but will send a message to the receptionist and put a red flag on it for a call back. GREAT! More waiting…
Call Four. This one wasnāt even to me. One of the 2 places I had called first had called Dave, not sure which one. The referral was wrong. Sent to the wrong place! Iām not sure why I was so shook by it but Iām not ashamed to say that I actually started crying whilst in view of other people.
Dave was due at or GP in the afternoon for William’s flu vaccination so he was going to speak to them face to face and find out what was going on.
I went back into work and took shelter in the toilets and sobbed. It was loud, messy and snotty but I couldnāt stop. It just gushed out of me for a good 20 minutes and I let it because this was another setback and the third time we have tried to get somewhere in regards to referrals. AND its not the first that has been done wrong,
1. Eye test ā” Told to go to opticians ā” then to gp ā” then to eye clinic but it was actually sent to ā” The Children’s Urology Surgery Team in error ā” had to go back to the GP and start again.
2. Paediatrician says they are referring William to ā” ASD Panel, check with GP and theyāve received it and it’s all in hand ā” Health visitor checks with GP and no referral done by Paediatrician as they wanted GP to do it who isn’t able ā” GP didnāt even notify us.
3. This one
And to top it all off William’s flu vaccination was for last Monday at our GP surgery but they had booked us in at their sister site and not told us!!!
Dave spoke with the GP receptionist who assured him it was booked with the right people. He told them that it wasnāt and we had spoken to them but no it was right apparentlyā¦ he had to demand they call to confirm which she didnāt want to do because the referral was right. BUT it wasnāt! After after much frustration he convinced her to call and guess what it was done to the wrong place but apparently thatās ok as its an easy mistake to make as they are in the same building etc etc!
Waiting for new referral now… To Sunshine House. Which FYI isn’t in the same place as the place we had received the letter for.
I feel my confidence in this system is slowly weakening. No wonder referrals for anything take so long. The wait for the ASD panel is between 2-3 years once confirmed and we arenāt even on that list yet. All these mistakes are setting us further and further back! William will already be at school by the time he gets a diagnosisā¦ Will he get the support that he needs without it? Can I trust what is been told to me?
Who wants to be normal anyway? 