The Never Ending Wait

Finally thanks largely to The National Autistic Society there is a new campaign launched today to try and shorten the long waiting list that people have to endure to get a diagnosis for ASD. This has been far too long coming and can only be a good thing for so many people. I so hope they achieve their goal and so things can begin to get better for so many desperate families.

I think the waiting list is insanely long and I also believe that this is solely down to funding. This is incredibly short sighted of the NHS. Children are suffering without support for far to long. Parents are at breaking point and have nowhere to turn. A diagnosis does not solve the problem, it does not take the issues away. But what it does do, is provide support for everyone. Children need the right support at home and in school. Parents need help. You can be the best parent in the world but sometimes everyone needs a hand. Schools need to put things in place so children can develop, learn and make friends. Schools don’t have the resources to do this without extra money. The money is only available if the child has a diagnosis. Children must not hate school, not be told off for being bad when they are anything but. Families are being left out in the cold, parents feel there is nowhere to turn. Far to many are being told they are bad parents when actually they are struggling to keep their family together, doing all they can to help their child but getting nowhere, all because there is a waiting list that can take years for a child to reach the top of.  If children get the right support early on, it can really help reduce problems later on in life. It won’t solve everything but it can greatly help!

I wasn’t exactly sure if I was going to share our story about the long bumpy road of getting a diagnosis because actually ours is nowhere near as bad as many. But today seems like a good day to do it, if I ever am.

I was at breaking point when C was about 2. I new something was up but not everyone was agreeing. In the end I took myself off to the GP with a list of my concerns about C and myself. She was amazing. Finally someone was agreeing with me and said she would get him referred. Oh but only it was that easy. I had endless paperwork to fill out because a letter from the GP wasn’t good enough. What would a GP know anyway? We had to do a C.A.F (don’t ask, I still have no idea what one it, but it’s very long!) with our Health Visitor. Again she was great and really helped. But what we really wanted was to talk to a paediatrician. Get them to see C and help us have a better idea what was going on.

Twelve months later we finally saw one. Miracles do happen I thought. However after me talking at length to her, she explained the most insane process we now had to go down. We already had reports at this point from nursery, family support workers, and by two Health Visitors. Never mind a referral by our GP. But C was to be added to a new waiting list and once he reached the top of this, a group of people, who I might add will have never met C, will look at the reports and decide what is going on. I think this is wrong in itself, but to be told this when I was hoping that maybe we finally might be getting somewhere is not what I wanted to hear. We were told she would see us again in 4 months. Eight months went by, many phone calls and a pretty desperate letter and we finally saw her again. We are told we are not that much closer to the top of the list. Great, so I take C out of school, to a place he hates, put him in a highly stressful situation to be told that, and then told to come back again in 6 months.

Well by this point, I decide to look into going privately. We are not rolling in cash. I am a full time mummy so we only have one income but this was making me cross. C was suffering, I was struggling, our whole family was suffering. I had once before looked into going privately but decided we just could not afford it. It was going to be well over £1000. But I needed to look again. Work out what we could do. I was being exhausted with the endless battles with the NHS, and felt I wasn’t winning any of them. After talking to people and looking on the internet I came across an amazing lady, who some may have heard off, Dr Judy Eaton. She gave me a price (well under £1000) and after talking it through at home we decided we would go for it. We were incredibly lucky as C has some amazing grandparents who helps us out (a lot) to pay for it. Without them we could not have done it.

For some reason, and one I just can’t guess, Judy was a little busy. So busy that since seeing C she is now doing this full time. This meant we had to wait, I think a whole 8 weeks to see her. She did the assessment with another colleague, following the NICE guidelines, so it is recognised by the NHS.  And two weeks later I had their diagnoses and full report. During the time that we made an appointment with Judy and then saw her, I received another letter from the paediatrician to tell me that C’s case had be reviewed by the board and that he was now on another new waiting list. This list was at least 12 months long and once he had reached the top of this, he would receive a diagnosis. I think easily from start to finish with the NHS in Norfolk we would be looking at a minimum of three years. Just thinking about this makes me so angry. We were incredibly lucky we had the money. But if we didn’t I would hate to think where we would be in another years time. Not in a good place, that is for sure!

Three months on from seeing Judy, we are still waiting to actually get the diagnosis excepted by the NHS but this in theory should not be a problem. The official guidelines were followed, but how things are, with what at times can only be described as backwoods thinks organisation, until I get an actual letter confirming they have excepted it, I am not holding my breath. But the school has excepted the report, and are now beginning to get their heads around how to best support C. I’d lie if I said, as a family we had more support than we did before, because right now we don’t. But my main concern was the school did all they could do, and It does seem that they now are.

I don’t know what I would have done if we couldn’t find the money. This may sound condescending but hand on heart it isn’t meant to. My heart goes out to everyone who has been waiting for years and still isn’t there. C is hard work, some days really hard. We never get a break, and as a family we are all massively affected by autism. But C is not as bad as some children and for families to have to be waiting as long as they are, without support, it’s just wrong.

So I wish The National Autistic Society every ounce of success because by God do people need them to pull off what they are trying to do. And for everyone still waiting, I realise this might sound rich coming from me but don’t give up, people are fighting for you, they really are. You are doing a bloody amazing job and don’t let anyone say otherwise. If you weren’t amazing parents, you wouldn’t care and this whole insane waiting list debacle wouldn’t be affecting you!

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2 thoughts on “The Never Ending Wait

  1. Things seem especially hard in the highlands of scotland- we’ve spent ages waiting for answers only to b told no autism even tho there are obvious problems

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    1. Keep looking for an answer. I have read so so many books to try and figure out myself what was going on, so I then new which route to take and battle alone. But if you truly believe it’s autism, don’t let people say otherwise. You know your child better than anyone!! X

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