Me and my girl and boy, raising awareness and acceptance of autism

I am feeling completely failed by the “system” today. That system being the NHS.

As some of you may know, I blogged in January about seeing a GP about D’s increased anxieties and whether we needed to go down the anti-anxiety meds route. (my post “why won’t the professionals help us?”) The GP we saw didn’t seem to understand autism or how D could be sitting there interacting with her and I’m telling the GP about her anxiety attacks and D’s threats to self-harm during these. There just wasn’t a basic understanding that yes, my child’s mood can change very quickly and very violently.

Anyway…the GP agreed to refer D back to the paediatric doctor who had diagnosed her, to then refer D onto cahms. I phoned paediatric department the next day to enquire about length of wait for an appointment – 18 weeks.

*twiddles thumbs*
I had tried to chase up the appointment but kept getting voicemail until today….

Paediatric department’s secretary informed me that they had written back to GP on 8th February, saying that they did not have the resources there to see D and could GP refer her to cahms.

Great, you may think, except the GP never received the letter. I checked with them today. So…had to get GP’s fax number, phone it through to paediatric department. THREE months wasted and we are no further down the line….

I then decided to phone CAMHS to say what was happening and enquire about waiting times and they said I need to
contact Assist and go on an Early Bird course first!!!!

I have had a damn good cry about all this and now I’m angry. Is this how it’s always going to be? Departments not liaising. Being pushed from pillar to post and receiving no support or guidance in the meantime?

Comments/RTs would be very welcome! Jx 

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Comments on: "Feeling absolutely failed…" (15)

  1. Sorry to hear you’re going through all this but it doesn’t surprise me I’m afraid. When my son became mentally unwell (severe anxiety, agoraphobia, threats to self harm, wanting to die etc) I had to wait three months! Apparently he was not classified as an urgent case. The problem was that the delay made his issues worse. Eventually we got in and had to go the medication route which eased his difficulties enough for me to help him get out of the house. It took over a year to help him recover enough. Then a few months back I had a CAMHS appointment for my daughter; it was a triad appointment aimed to assess whether she had any mental health issues but it was focused on my parenting. I felt like I was being judged and no way did I think it was a mental health assessment; I felt that the nurse had no knowledge of aspergers syndrome at all. I’ve now lost all confidence with CAMHS.

  2. Our son has attachment difficulties and has experienced early trauma. We’ve had a poor service from CAMHS too and have also felt pushed from pillar to post. We found help eventually but now pay for it privately. I know that in some areas CAMHS offers a good service. In ours it is underfunded, underskilled and lacking in empathy and understanding.
    All I can say is although you can probably ill afford the time and energy, don’t give up.

    • Thanks Sally, I’m definitely not giving up. No one else is going to fight for D. The more replies I have, the more I’m determined x

  3. Elaine Walton said:

    Unfortunately I had the same sort of runaround that u have had. I don’t want to sound negative but it had taken me years, Adam is now 14 and only diagnosed 6 weeks ago. My main gripe is actually with cahms. They are the ones who let us down badly. The only advice I can give u is to keep on and on at them, and keep in their face all the time. Stay strong. If they see you weaken they will do nothing. I sincerely hope you have better luck than we had. Hugs to you…Elaine xx

  4. senseeducation said:

    Hey, So sorry to hear what you are going through.
    My son has AS and I am also an Early Bird Plus tutor. Clearly the person who advised you knows nothing about Early Bird! The course looks broadly at AS and general strategies – which clearly you already know loads about- it is an introduction. It does not look at specific anxiety issues and definitely does not deal with self harm etc. Also as your D is nearly 8 she will be too old for it by 8 years 11 months. You can only get on a course if one is being run, and as you say it will be Sept by now. It makes me so cross on your behalf! Early Bird should not and is not a prerequisite to accessing additional help. It is an additional service for parents if they want/ need/ can afford 3 hours a week to attend! If I had a parent with the specific issues you mentioned I would be advising CAMHS and Paeds.
    If you need any additional info on the specifics of it, so you can fire it back at CAHMS/ paeds, just shout!
    Good luck. It shouldn’t be like this.
    Helen 🙂

  5. senseeducation said:

    Hey, So sorry to hear what you are going through.
    My son has AS and I am also an Early Bird Plus tutor. Clearly the person who advised you knows nothing about Early Bird! The course looks broadly at AS and general strategies – which clearly you already know loads about- it is an introduction. It does not look at specific anxiety issues and definitely does not deal with self harm etc. Also as your D is nearly 8 she will be too old for it by 8 years 11 months. You can only get on a course if one is being run, and as you say it will be Sept by now. It makes me so cross on your behalf! Early Bird should not and is not a prerequisite to accessing additional help. It is an additional service for parents if they want/ need/ can afford 3 hours a week to attend! If I had a parent with the specific issues you mentioned I would be advising CAMHS and Paeds.
    If you need any additional info on the specifics of it, so you can fire it back at CAHMS/ paeds, just shout!
    Good luck. It shouldn’t be like this.
    Helen 🙂 @passthechablis

  6. I am so sorry your having all this added stress ontop of everything else, It feels like your going into battle each time you are referred anywhere. Callum has problems and we see different specialists about each thing and I have to chase up each appointment, ringing the secretary to confirm they have got the referral then find out how long the waiting list is ect ect. It’s like having a full time job ontop of all the the other worries and looking after them. Your doing such a good job, hope you get some where soon xxxx

    • Thank you for reading & commenting. The more I here of similar experiences, the more I wonder why it has to be like this. Still….new day, new start x

  7. kipmcgrathurmston said:

    This is disgraceful but sadly not surprising. Just when you think you are going to get some help it is whipped away. Camhs do seem to work very, very slowly indeed but it doesn’t help when communication is so poor between different departments. There is no excuse for such poor communication nowadays, I hope you start to feel better about this soon, you must be so frustrated at the moment. I agree with Deb that there seems to be a tendency to focus on parenting skills, often by people who have no idea what it is like to care for someone with ASD 7 days a week without support. I have a family member with ADHD & ASD, they do get some support but it can be judgemental and comes from people who haven’t lived with it!
    I hope something positive happens for you soon xx

  8. Oooh I feel your pain and sadly you’re not alone, it’s happening all over the place. I’ve been trying to get my son a paediatric referral for the last 3 months – round and round in circles and eventually wrote to my MP on behalf of all parents like me. He sent me the latest criteria for NHS referrals which clearly indicate my son qualifies for an appointment. I followed the advice given – yesterday I recieved a letter saying my referral request was ‘inappropriate’ for a paediatrician but CAMHS would take him on. In short I’m no further along the never ending road to helping him – he has been with CAMHS before and was lucky enough to have a brilliant psychologist (who has now gone to work in Australia – and who can blame him). The point they all seem to miss is my son’s anxiety is a direct result of other difficulties which is why I need the help of a Paediatrician to back his statement request up! Arrrrghhhhhh!
    As Mum’s we feel failures but the reality is our country and our systems are the failures.
    Keep your chin up and good luck. xx

    Today I will be mostly fighting their decision 🙂

  9. Grrrrr, it makes me so angry that this is allowed to continue, peoples lack of awareness and understanding, lack of resources, lack of funding, lack of….it’s all I hear nowadays. I’m sorry for you and your daughter, I hope things get sorted out soon x

  10. Elizabeth said:

    I can understand your frustration. My experience of CAMHS has been unsatisfying, to put it politely. My 6yr old was referred, at my insistance, because of self harming traits, low self esteem and anxiety issues. It’s a horrible thing to admit to any professional or indeed anyone, that your child seems to dislike himself, regardless of what you try to do/say to encourage contrary feelings. I sought help from camhs thinking there would be some professional expertise there. My mistake. My main criticism is that the service makes no attempt to get to know children at all. Which is surely the first step in trying to understand and treat any mental health difficulty. We have, over the past three years, averaged 2/3 appointments a year and spoken to 5 different pyschologists. Not ideal for anyone on the spectrum.

    Our situation is better now mainly because of other changes in my son’s life, particularly getting dedicated support at school which means he can now join in more with trips etc. I also went privately to a sensory integration therapist and had a full assessment done. The specifically designed exercises we were given to do (and which the school very helpfully built into PE/Games for him) have helped make him physically stronger which has boosted his confidence greatly. He’s 9 now and I’ve just recently started discussing and explaining autism openly with him and he’s dealing very well with it. I am lucky to have a very patient paediatrician. But to be honest in terms of everyday difficulties I feel better supported by other parents with real life experiences than I do by health services, autism teams, camhs etc which seem hopelessly unconnected. And reading experiences and blogs like yours really keeps me going.

    Best wishes.
    Elizabeth. x

  11. […] I’ve blogged through the realisation that a second child of ours might be on the spectrum and his subsequent diagnosis; feeling let down by the professionals and many proud and sadmoments. […]

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