I consider myself to be one of life’s fighters. Having two sons with autism has certainly fine tuned my fighting mechanism. I don’t know anyone who has not had to fight for what their autistic child or children at sometime or other. My biggest fight was getting a diagnosis for the eldest of my two sons with autism. That took me 10 years.
For the last 13 years I think my strap line has probably been ‘I get knocked down but I get up again’ But getting back up again is getting harder for me to do. Maybe I am just punch drunk.
This week I have found out just how much changing the rules of engagement with a GP can impact on my life. This week I have realised just how alone we are within a system that has ignored my son’s needs from the day he was diagnosed. Diagnosis equaled job done for my son!
This week I hit rock bottom and that’s not something I do very often. I have more bounce in me than a rubber ball. I think it is because I fully understand the far reaching implication of changing the rules of engagement with my sons GPs, and just what their rule changes could result in for my son that has quite literally floored me.
The moment my son realised that he might have to have a work capability assessment his anxiety levels started to increase. He became obsessed about having to have an assessment and his OCD started to spiral out of control. As it happened my son did not have to have an actual assessment. I probably have his GP to thank for him not having to endure a face to face assessment.
My son has, for the last 11 years, had the most amazing GP (and only his GP for support as he has never met the criteria to see anyone else where we live) who I shall simply call Doctor M. Doctor M restored my sons faith in the medical professional after being treated appalling badly by his former GP and also a CAMHS team where we live.
Dr M ‘got’ my son. He took the time to get to know him and to find out how he ticked. He understood his need to look at his medical books and what the side of anything that he prescribed for my son might be. The terror that I used to see in my sons eyes when the word doctor was mentioned was replaced by a look of trust.
I might be a lot of things but I don’t consider myself to be stupid, so I knew that it was important for my son not to become too reliant on Dr M. Over a long period of time my son was encouraged to see other GPs. My son discovered that there was another Dr M in our practice and he was very happy to see her. In fact my son will now see almost any GP with something minor, but when it is not something minor my son needs the reassurance of one of the two Dr Ms.
All good things come to an end and the beginning of the end came when his GP practice changed their rules about how appointments could be made. There is now an all signing and all dancing triage system that means you have to ring the surgery at 8 m and the "doctor of the day" will call you back and decide if you need to be seen.
The first time my son rang to try and obtain an appointment he was told that the walk in centre could deal with him. As well as having AS and OCD my son has multiple allergies and a serious visual impairment. The walk in centre is fab but they can’t always prescribe what he needs.
Ding, Ding Round One.
I rang the gauntlet of the practice manager and was assured that it was on my sons notes that in future he would not be outsourced to the walk in centre.
Round one to me.
My son is not the best at the moment. He has hurt his back but apart from that I could fill a hundred pages with why that is but if you live with autism I won’t need to, sometimes things just pile up on him and this is one of those times. This is was one of those times when he needs the reassurance of his Dr Ms.
Ding Ding Round Two
I tried for 15 minutes to explain to a receptionist why I find it difficult to be in a stacking queue (without any guarantee of getting through) at 8am, if I have not managed to get to bed before 4am for several weeks now. I tried for 15 minutes to explain why not just any doctor would do at the moment. I actually just about fell to pieces while I was trying to explain just how desperate I was – never mind my son. I think I said the words crisis point at least 6 times before I asked to speak to the practice manager. I was told to hold the line, which I did for ten minutes.
After 10 minutes of ‘please hold the line your call is important to us’ the receptionist came back and told me that she had managed to speak to the practice manager who had secured an appointment for my son with a doctor who is new to the practice, and has only seen my son once. Again I tried to explain but I was politely but firmly told that rules were rules and that was their best offer. I politely but firmly told them when to stick it!
Game, Set and Match to them!
So what happens if my son is now to be bounced from one GP who does not know him to another? What happens when he has to have his ESA reassessed – as he will most certainly have to? What happens when he has to transfer from DLA to PIP? Who are we going to turn to for the supportive evidence that I keep hearing he is going to need?
It’s not just the failure of being unable to see a GP, who with half a dozen soothing words, will I know make my son feel better, although at the moment those half a dozen words would be priceless to me. It’s the much bigger implications of what this could lead to for my son and how much it could impact on his already out of control anxiety.
I feel as if I have gone the distance with a heavy weight boxer this week, but at least I can take time out from it all when I have had enough, even if it’s just going to the supermarket. My son cannot walk away from himself ever. Am I really asking too much for someone just once in a while to bend their bloody rules for him!!!!!!!