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has anyone pulled their child out NHS system until theyre bit older - terribly stressed

(19 Posts)
Chundle Wed 10-Oct-12 10:35:40

dd2 (3.2) has paed on monday we are getting nowhere hes full of broken promises. promises for referrals and assessments. getting nowhere. been in system since she was 9 months old due to failure to meet milestones. Now they are looking at possible HFA but we are getting NO help at all. She has started preschool and is very very anxious and stressed at home, she has a big wobble before going in and clings to me and gets very hot sweaty and often cries but once im gone they say she is ok although likes to be beside the teacher all the time and frequently asks where teacher is.

Anyway get to point we are having horrid time with her at home, screaming, hitting still not sleeping despite melatonin. NHS stressing me out with getting no help. Has anyone pulled their child from the system until they are over say 5 years old?? JUst thinking may be easier to sort any issues out on the nhs when she is over 5 as she wont come under the child development centre which seems to be a nightmare in our area. And if I need help before then I will have to go private with her.

I have OH coming to app with me and hes furious at lack of progress and has said he doesnt want her going anymore since its a waste of time and same old scenario at every app. So do we muddle along by ourselves and pay for any intervention we require in the meantime? NHS is stressing me more thn DD2 is!! Sorry for the rant im at the end of my tether

siblingrivalry Wed 10-Oct-12 10:41:10

Sorry you are going through this- I know how hard it is (and how stressful).

I became very disillusioned with the NHS, after a disastrous experience with the CDT. DD was older than yours -she was 8 when we got into the system.
I took her to a private paediatrician and it was the best money we ever spent.

Some people do have good experiences within the NHS, but it wasn't right for us and I felt like all control was taken from me.

I always believe that parents should go with their instincts -if you aren't happy, it may be time to look at other options.
Good luck, hope you manage to get the support you need.

Chundle Wed 10-Oct-12 10:46:54

thank you sibling we did have a very good xperience with this paed who dx my eldest daughter with adhd but as she was older she didnt come under the cdc jurisdiction. As dd2 is only 3 it makes it all so much harder. We originally had a daphne keen app booked for sept but stupidly cancelled sad thinking will rebook now or may go to the portland. Everything is so very far away from us as we are in south west.

Dev9aug Wed 10-Oct-12 10:49:07

We have been in the system purely because some of DS1 medical issues but everything else has been a massive waste of time, so we don't bother with the NHS Salt or OT any more. We see the paed every 3 months or so but she is actually really lovely and listens to us and passes on anything and everything to the LEA, which is another story altogether.
IMO, the gap between what's on offer through NHS where we are and private is so big it's not even comparable.

Personally I would just see the paed and no one else if its too much hassle as I am not comfortable with the idea of opting out seeing as it is so much difficult to get back in.

Chundle Wed 10-Oct-12 11:04:49

thanks for that dev we dont actually see anyone else! salt saw her last year and said her speech was delayed but because her undertsanding was so good she couldnt have speech therapy!! OT saw her twice and first said she had sensory issues (which she does massively) then changed her mind and said no she possibly couldnt because she will touch jelly! Of course all kids are the same by her book! Theres a three year wait for OT here. We have got a private app to see an OT type guy (snowdrop) next week so looking forward to that. Psychologist discharged her on the basis that she could put her shoes on the right feet - please dont even get me started on that one. I feel terribly let down by the system.
No one seems to care that she doesnt sleep, refuses to wear buttons of any sort, has a limited diet and is so totally controlling she rules the household. I have a list for the pead and I will see what he says was hoping for referral to camhs as thought they may help. we shall see. thank you for listening ladies

babiki Wed 10-Oct-12 11:04:52

CHundle I know how you feel, am in similar position - have complained, but realised it's the mixture of system and incompetence...so I did give up on NHs, they are useless most of the time, BUT I do not want to alienate them;I have been told they might mark me as 'uncooperative mother' etc..so I just listen and say nothing..soon we will have team around the child, and I can't even tell them all to go somewhere sad but I'm mainly speaking about so called 'therapists'...peadetrician I would change if wasn't happy...I got much more help from charities and private proffesionals with the exception of Gosh..they system here is really really crap

Chundle Wed 10-Oct-12 11:28:18

Babiki sorry you're having trouble as well but glad I'm not the only one! I'm sure they have wrote 'neurotic mother' on my dds file so I'm taking dh with me this time - I only bring him out when I need ammunition as he gets a bit too lively!! Haha . Could be interesting app!! We will either make progress or dh will be escorted off the premises! Aaargghh!! I don't think the nhs realise how much stress they cause to families!

bochead Wed 10-Oct-12 11:37:53

Go private for an assessment if you can afford it.

Dr gillian Baird at the Newcommen centre, St Thomas's London would be my first choice. Her team are hot to trot on ASD related sleep and sensory issues. oh and too highly respected for your local muppets to pooh, pooh once the report lands on their desk.

Use that report to put a rocket up the A*(^s of the local service providers and to apply for a statement to get the therapy she needs made legally binding before they scrap it.

If it helps I'm officially labelled "bad chav muvver" for refusing to have anything to do with my local CAHMS. However the NHS ASD SALT and OT are both genius's as far as I'm concerned. The issue was for me was that without a formal diagnosis I couldn't get my child onto their waiting lists. You may find a similar thing happening to you.

Side step the "wait and see" waffle by going private and then come back and take a look at what's available before you write off the NHS totally. I know this costs, but sometimes it's worth it. Private can plug gaps, but to use it totally for a child on the spectrum, given the number of experts that can be involved & the number of therapies thatmight be needed between 0 & 18 is just too expensive for most "normal" families, so prioritise & cobble together your own mix of NHS/private interventions starting with a decent diagnositic report.

shoppingbagsundereyes Wed 10-Oct-12 11:43:16

We paid for a private paed assessment when ds was nearly 4. He was amazing but also out in his own referral to the team we had been waiting months to see. 3 months later an NHL appointment popped through the door. The HV said she had never seen one come so quickly. Remember you can opt back in whenever you choose so going private initially doesn't mean you are stuck paying forever

babiki Wed 10-Oct-12 11:47:51

Chundle, yes it's stressful..together with education etc...
Bochead advice very good; this is exactly what we are doing, can't go private for everything but proper diagnoses and report is important..we had private psychologist too for this...and now we basically choose what is most important to do at the moment, so ds has private tutor every friday for develop.therapy and we do stuff at home, and in December we are going to brainwave for physio and OT, as there Nhs really let us down..the only one that is OK is Salt for feeding problems, so keeping her...good luck with it all, it is bloody daunting

Chundle Wed 10-Oct-12 11:52:02

Thanks all that's really useul. Bochead does Gillian Baird see private patients as well then? How do you get in touch with her and any idea on cost? I know Daphne keen had webpage that's how we found her, does Gillian Baird? Thank you so much

bochead Wed 10-Oct-12 12:15:26

Hoping these details from my address book are still correct.

Newcommen Centre
A specialist diagnostic service for children with disorders on the autistic spectrum incuding Asperger’s, Autism and Developmental Delay.

Email: judy.moore@gstt.nhs.uk
Tel: 020 7188 4648

Dr. Gillian Baird
Consultant Paediatrician
Guy’s Hospital
Great Maze Pond
London, SE1 9RT

The above can get you an NHS referral to the team at the link below.

Sleep Centre Link http://www.guysandstthomas.nhs.uk/our-services/childrens/services/childrens-sleep-centre/overview.aspx

Chundle Wed 10-Oct-12 12:57:16

Fantastic thank you bochead!! We are in devon what are our chances of getting referred here do you think or will they take us on privatley?

Chundle Wed 10-Oct-12 13:01:39

Just rang she doesn't see private patients but she thinks sleep clinic may do so will try them later and will push for nhs referral to them as well x

kmummy Wed 10-Oct-12 13:16:34

Where in Devon are you? I'm also in Devon ad can't fault the NHS treatment in our city, sorry you've had such a rubbish time sad

Chundle Wed 10-Oct-12 13:22:58

Can't say or may out me! Think its pot luck though my dd1 had fab treatment here but really struggling with dd2 sad

LateDeveloper Wed 10-Oct-12 13:25:33

I know what you mean about the system - Long waiting lists for appointments and then when you did get an appointment it was a half-arsed assessment always with someone new who had to take the full history again. The assessent never reached any conclusion apart from- yes your ds is still delayed and (if you were lucky) here's a badly photo-copies sheet of inappropriate activities for you to try to decipher.

BUT do make sure you stay in the system enough to get the statmenting process done for your dc.
AND take your time finding a school that really does get your child and is ambitious for them. Well meaning comments about inclusion and coping is not the same as being determined to make sure your child makes progress.

NoHaudinMaWheest Wed 10-Oct-12 15:45:57

Chundle sorry its so rubbish still and CAMHS didn't come up with the goods. Is it because dd2 is under five you can't get a referral to HC?

Could you try through your GP saying how end of your tether home life is (and making clear how really bad it is) to get a referral? We got a fairly quick referral to HC on the basis that it was a crisis but that won't work if she only sees over 5s.

Chundle Wed 10-Oct-12 16:02:26

Thanks guys. Bloody HC I'm sure she's an imaginary person!!! I'm sure she does see u5s? Haven't heard any different ill have a google and check it out ;) but I'm going to stress to pead that this end of the road now if it goes on much longer we will all be living in seperate houses!! Dd2 punched the dog in the face this morn because she ate one of dds magnets! We have a large German shepherd who fortunatley is very mild mannered and didn't bother and I was there at the time (never leave the kids alone with dog) but still couldve been different story!

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