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ADHD - How do you get a diagnosis?(14 Posts)
Hi all, I am wondering how on earth you get a referral to begin assessment for ADHD as I've been passed from pillar to post over the last 4 years, fobbed off with excuses being made for ds2s behaviour/actions and sent on countless parenting courses.
DS2 is almost 6, will be starting yr1 in September. He was always a difficult baby, constant craving attention, nothing I did was good enough. As he got older I just couldn't handle him, I would be curled up in a corner crying because I just didn't know what I'd done wrong. My ex never believed me that there was anything wrong with him (he was barely at home so hardly saw him so made me feel really crap and made out that I was imagining it all). When I split up with him I decided to try and get help with ds2, when I moved house my new HV came round, I was going to ask her to refer me to someone but instead he was on form and she practically ran out of here in shock at his behaviour. I spent the next year seeing the nursery nurse, going on parenting courses, discussions, workshops etc,having one on one parenting 'lessons'. None of which were of any use because none of the 'strategies' that they wanted me to use were any good with him. Since then I have been to and fro to the doctors being referred to CAMHS, who saw us for a brief period before discharging us. Again this made me feel pretty crap and as though I really was a crap parent, so again I went to a few parenting things at the local Sure Start centres, but they weren't able to teach me anything new, so back to the doctors I went and came out with another referral to CAMHS. The woman from CAMHS has seen ds2 several times over the last few years and just makes excuses for his behaviour until recently she said she thought he had ADHD. She said that just as she was leaving not giving me any opportunity to ask questions. I saw her a month later when she brushed off all of my questions about ADHD and said she thought he was ready to be discharged as there was no more she could do. After posting on here I went to the GP again and asked for a referral to Child development Paed, she listened to our concerns, nodded etc in all the right places, tried to tell us we were doing all sorts of things wrong, tried to empathise by saying her youngest was 'hard work' at times (if only it was just that with ds2!), tried telling us that all children are different and just because ds1 acts one way doesn't mean ds2 will (erm, yes we know that!). She agreed to look into a referral for us, although I think she just said it to get us out of the room tbh. We had a letter from the doctors last week saying that they had spoken to the necessary people and they felt that a referral wasn't suitable for ds2 but that as discussed it is my parenting skills that are lacking and therefore I need to go on the parenting courses that CAMHS wanted me to attend.
I am sick to the back teeth of being told that it is my parenting that is at fault for the way he is. I'm sorry but the way I parent does not make him spin round in his chair and start biting his feet, it doesn't make him dance round in circles punching his bum, it doesn't make him (on the rare occasion he sits still) sit with his legs tied round his head in a knot, it does not make him stand there kicking himself in the head(!), it doesn't make him watch tv on his head, it doesn't make him (literally) climb and bounce off the walls. I could go on for a long time about the things he does that no amount of good or bad parenting could impact on.
I've just finished doing the Triple P Primary course. What a complete and utter waste of time. According to that children with a 'safe, secure, loving environment' will be well behaved. You need to teach your children road safety & to wear a bike helmet when riding their bikes (while teaching me to suck eggs I suppose) and if you ignore little niggly behaviours they won't escalate into bad/dangerous behaviour , among other things. I'm really insulted that I had to go on this, everyone else there seemed to find it helpful, or maybe they were just saying that as they didn't want to cause offence, but I was pretty blunt when I told them it was a waste of my time.
I've phoned CAMHS today to ask them to refer him to someone else but apparently I can only speak to the particular Primary Mental health worker that ds2 is under. Again I think they were just desperate to get rid of me as eventually they told me that she is on holiday until the end of August adn that there is no duty worker today, but I could phone back in the morning to speak to him if I still wanted to, however he wouldn't be able to do anything as the person who we are dealing with is the only person who can do anything at all, apparently I'm not allowed to see anybody else, only her.
I don't know who else to see or speak to, I don't know what else to ask for, I really am at the end of my tether with all this and just want some help for my little boy and some support for me & DH.
You have been through the mill! I think go back to the GP and ask for a 2nd opinion, could he refer you to a specialist in this area maybe in another area or county?
Sorry you're going through this. I know how wearing it is - first you've got a very challenging child and second nobody will give you the support you need to help him.
Our story with ds was very similar, apart from the parenting courses, though we did feel we were blamed for ds's difficulties as nobody took us seriously. The only advice we were given was
a) The Naughty Step - I know it works for a lot of people but we tried and it countless times but ds just didn't respond to it
b) "Wait and see", and all the while his problems were getting worse.
CAMHS were useless, two schools failed to back us up despite one head being so frustrated and worn down by ds that she recognised that he might benefit from medication (she then scuppered the ADHD assessment by filling in the Connors forms to show an almost perfect child, completely contrary to the day to day discussions and concerns school staff had about him).
Eventually we had to give up on the NHS because ds's presentation was atypical and they were basically box-ticking. It was very frustrating and like you I spent a lot of time in tears. In the end we found an excellent psychiatric consultant who was prepared to take us on privately. Ds didn't get a full dx of ADHD because his existing dx of AS already covered many of his presenting symptoms, but the psychiatrist recognised that his difficulties were 'sufficiently disabling' to warrant a trial of medication (doctors don't prescribe without good reason, and that's usually a firm dx).
It was a long haul though. He got his AS dx at 7 but the ADHD dx didn't come till he was 11.
My advice would be not to put off as a lot of damage can be done in the intervening years with no support. Keep pushing for that dx if you believe he needs it, and if you can't find an NHS practitioner willing to give a reassessment and second opinion, consider a private doctor if you can afford it.
I think many of us can relate to your story of the tick box mentality of some of the 'care' and 'support' that we are given. In my case it has turned me into a PITA mum - something i was never brought up to be, and I don't like doing, but I have found in some instances that it is the only way to get attention long enough to be taken seriously.
One thing that worked for me was using PALS at the PCT. I listed the number of appointments, with who and when. I listed the actions/inactions that had been taken. I then took them through a typical day and how all the issues that I had been seeking help with affected everyone. I asked how the PCT could accept that a child/parent could be left in this way. I asked the PCT to sort it out - or I would be left with no alternative but to take the MP/Press route. PALS sent the communication to the CEO of the PCT. I miraculously got several appointments - 1 the following morning! Its still a slog to get everything achieved, but at least the right team are now involved.
Challenge, request alternatives, self refer (OT etc). Someone on a different thread made an excellent comment on checking out the credentials of the paediatrician etc that you are sent to. If they don't have suitable behavioural qualifications ask for someone that does. You don't need to be disrespectful in the way you do it.
Being a pain does sometimes work.
Thank you all for your suggestions. I think my 1st stop will be going back to the gp to see who they can refer me to without CAMHS approval or if they can refer me to someone different at CAMHS.
Unfortunately private is out of the question atm, DHs job isn't overly secure, our landlady has just died so we're probably going to have to move in the near future (moving house & school - that'll be another stick for them to beat us with I expect).
PALS is a interesting idea, I wouldn't have thought of that at all. I will see how things go in the very near future and have a look at having a chat with them if we have no luck and noone taking us seriously.
It is very difficult knowing how far to push and how much of a pain to be, as you want to respect the opinions of the health professionals, I'm sure that's the way most people have been brought up and in a way you don't want to be too awkward and seem too much of a pita as you don't want to compromise your childs healthcare in the future but at the same time you want them to understand just what it is that you're going through with your child and that you as the parent know your child, and you know if something is not right, no-one is in a better position than the parents to tell that.
Not that it will sort out dx or medication but could school explore their options e.g. in put from Educational Psychologist? Wouldn't necessarily help you at home but may (if experiences at school are like yours at home) provide some additional evidence to pester other people with. Just a thought.
its been the same for most of us 26minutes dont despair and ive found that only when its causing them ie schools a problem they begin to actually take notice and then you find or at least i did they were trying to bombard me with help eventhough after so many years coping id by now found without ANY help from them whatsoever my own stratagies that worked and STILL with a ds in SS and two teenage dcs NT CAMHS insist i go on these bloody workshops to tech you how to suck eggs all a bit too little too lateand telling me books to read well duh ive read tons tyvm ive brought books , been to library yes surpriseeeee i can read ive a library ticket woo woo and ive researched the internet and been off my own back to talks ect the only way to get taken notice of ive found IS by being a PITA then they will do what they can if only to gt rid of you
Right time to be a pita it is then! The duty mental health worker is in at CAMHS from 9 today so will be giving him a ring at 9 on the dot.
BlueArmyGirl, this year school have been no help whatsoever, they say he is fine at school and gets on well etc, however I'm ot convinced. I've seen him at school, although not in normal school situations, but he looks far from calm and controlled when I've seen him. He obsesses about being at the front to get in in the mornings, in the panto he was spinning round and round, head almost falling off his body and dancing about. His lines were snapped out instead of spoken normally. I've seen him throw himself on the floor when people have asked him a question, and he talks about how so and so said this and that but that didn't happen etc, and he talks about that the same way as he blames the door frame at home when he walks into it for example. He seems to have a few friends but I think things have to be done his way or no way at all. The classes for yr1 have been changed around and he's not at all happy about the class he's going into. He wanted to be with a particular boy and on the changeover day he tried to sneak into that class and I had to phsically stop him going in there and get him into the right class. He then refused to do anything, just stomped about with his head down and arms folded. We really feel that yrR has given him what he needs - an active classroom, free reign to move throuhout the entire yrR areas (inside & out), music, activities that change all the time and if he gets bored doing one thing he can go and do another, I think yr1 is going to come as a shock to him. We also feel tht many of the children have been ignored in yrR in his class as there are 2 'teachers pets'. there are a few other parents relieved that their child will no longer be in a class with these 2 as now maybe some of the other children may get noticed. Luckily his teacher for yr1 & 2 is the same one that ds1 had and he had a very good relationship with him, she also saw what ds2 was like at parents evenings and the like, and has remembered him so she maybe prepared for him, also I had a good relationship with her so DH and I are planning on going in to see her at the start of term and having a chat with her about him.
I have to agree that it only seems to be when they are causing problems and concerns at school that the medical field seems to listen. Or at least that's how it worked with us. We brought up concerns re DS2 to various GPs at our surgery plus nurse practitioners and were fobbed off by them all for two years. As soon as the school stated in no uncertain terms that he needed to see a paed, people started listening to us.
You're quite right that perhaps the style of the R class has suited him in as much as he can wnder and move from area to area. Like you say, this on't be so much the case in Yr1. If you've got a ood relationship with the new class teacher then having a chat with her is a good idea, if nothing else it might mean that
if when there are issues she comes to you more quickly and easily than if she didn't know you had concerns yourself.
Just a shame for you that things are likely to have to be bad in Yr1 for anything to be done!!!
They won't usually make a dx of ADHD until the child is 7.
Apart from the parenting classes (which we weren't offered) our story was quite similar to yours. We were referred to a paed who had (at that time) never heard of ADHD. We had a whole session with her and she decided that DS2's problems were caused by bad parenting and a father who worked nights . She actually said to DH "if you could get a proper job dear". She was more interested in talking about our new puppy than DS.
I was lucky in that I saw a talk advertised by a (real) expert and went along to it. I spoke to him afterwards and asked if he'd see DS and he said he would if my GP referred him. We got a dx a few months later.
A few years later the original one was the local "expert" for ADHD
true - DS2's paed has stated that she is not comfortable giving a diagnosis until he is 7 or 8.
Oh what a nightmare OP....
My son has duel diagnoses of ASD and ADHD. He was very similar to your DS but as he is an only child I just assumed he was an active boy. It was only when he started nursery that people started picking up issues and realising he was different to other children. I am a HV but with my own child am so emotionally involved I couldn't see the differences iyswim.
My DS was 7 before they diagnosed ASD and on the day they did so the consultant said that ASD rarely existed alone and that she felt DS also had ADHD. However, she did not diagnoses this until several other observations had been carried out and assessments etc. He finally got the additional diagnosis several months later.
Like you I have attended parenting courses because without a doubt the more strategies you have for managing behaviour the better - it's trial and error in finding out which strategies work best for your child. I have to use stuff I learned on the parenting course and adapt it at times, have had to be consistant and the result is DS is learning the rules. He is still impulsive, still explosive at times but much more settled
My DS is now 8 and six months ago I agreed to a trial of medication for his ADHD. He has come on in leaps and bounds since then and has put 2.5 years on his reading age as well as caught up in Maths (he wasn't even at NC level 1 this time last year). Medication has helped his school work but it isn't a magic pill and the behaviours he had still need managing but as he is getting older these are improving.
Many consultants don't like diagnosing until children are 7 as some behaviours can be down to immaturity.
Is there a local parent support group you can join for ADHD. Our local one is fabulous and a huge source of support and advice...even if you don't yet have a diagnosis you can still join them as parent of an active, impulsive whirlwind of a child...they usually have books, advice leaflets etc as well as others to talk to.
Unfortunately there are no support groups near here. I did find a group on facebook with people trying to get a group together and I did post on there before realising that the last post had been over a year previously.
I have been talking to a couple of parents in ds1s class (yr4, going into yr5). One approached me as she has been trying to get help with her son since he was 2, now at the age of 9 they are sending her on the same courses that they have been sending me on. He causes a lot of problems in school, but still she is struggling to get a diagnosis. She sounds as though she has had a very similar experience to mine (but dragging on far longer) as has ds1s best friends mum. She's been saying there's something not right with her ds for so long but she just keeps being told to go away until she can learn to control him and if she still has problems then she should seek help. He's on the verge of exclusion from school. According to the mums both their real problems at school started going into year3, hence I suppose why it's only now that they're getting help rather than at age 7.
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