Occupational Therapy Waiting List

[Momma1408]

Hi, I am not sure if I am posting in the correct place ...
My Daughter is 3 Years and 10 Months

Diagnosed with: Chromosome 8 Disorder, Hypoglycaemia, Secondary Hypothyroidism, Developmental Delay, Short Stature.
She currently wears 9/12 Month clothing

I am in Process of awaiting a OT assessment from the Council and have been told 8 months waiting list as she cannot access any facilities and needs adaptations in the house along with some other issues. I also suspect she has slight Autism as very repetitive, fleeting eye movement and lack of social interaction with children.

I am quite livid that I am on a 8 month waiting list when the situation at home means she is not having a good quality of life. E.G in terms of bathing I have to hold her whilst I shower her and she has slipped and hurt herself several times as there is nothing for her to sit on etc. I have told Social services this yet 8 months waiting time... sigh

Difficulties accessing property from outside due to steps and pushchair, although she is in pushchair it Is due to her size that this is permissible, if she was bigger than would need adapted pushchair or wheelchair and in time this will be the case.

Cannot access back garden due to stray dogs and not secure.
Toilet upstairs and is not suitable for her needs and constantly going up to go nappy changes etc.
Not potty trained.

Cannot access caring facilities for her during night as they state they need a spare bedroom for them to carry out night sits. Currently also affecting my health as stress levels are through the roof that ive signed off work sick.

I just cannot believe that it is going to take 8 months given that there are clear safeguarding concerns in terms of bathing being dangerous etc.

Any views or similar stories...

8 months does seem like a long time. DS2 recently had his OT assessment, we only had to wait 8 weeks and his needs are nowhere near as complex/severe as your DD's.

The referral was done through his paediatrician. Could you ask her paediatrician to see if they would be able to speed things up?

Yeh I had the assessment literally within a month of being referred. The therapist referred him to have four OT sessions after the assessment back in March and said we would have to wait for around six months. I called them last week they are saying it's closer to a yr now for the sessions so more like March 2016!! I'm in the Ealing borough

Hi, Thanks for your replies.
I think it all varies on where your based. I am from Birmingham
I have just put in a complaint to Children's services as after a bit of research she is under a child in need as she has a disability and it is their duty to act accordingly. My view is they are not as her daily activities are affected and she cannot carry out basic provisions safely which comes under safeguarding. Fingers crossed wait for a reply from them.

This is all very frustrating though I must admit.

Hope all goes well for and u are seen soon. Yes it's all incredibly frustrating it's like a struggle and fight to get ur child the basic help he/she needs...

It sounds like you need an assessment sooner. Can this not be accessed through social services somehow?

If she's under the Paediatrician, or any other consultant, I'd contact them and as for them to chase this up.

I'm wondering if somewhere like Contact a Family could help you, with some advice.

I'm not aware of any other charities that may be able to help. You need this much sooner than the time you have been given. Sounds like a desperate situation.

Hi Guys, Thanks for all your responses and positivity.
I am going to contact the Paediatrician tomorrow for some advice and hopefully they may be able to put in a good word to push it along. I have asked for a OT assessment through Social Services and I am gobsmacked at the fact they have said 8 months when there is a clear need and duty of care towards my daughter and me. I will be following up the complaint tomorrow to see what can be done as quite frankly I've had enough of asking for help and being refused. Fingers crossed.

Also going to try Contact a Family for advice - Thanks for this.

Good Luck. Keep us updated.

It's a 18 month wait here :0( nhs just can't retain the staff. That's the same for SLT.

I can be pushed up the list if I write and tell him he's putting himself in danger, but tbh I've already waited so long.

Ds(7) can't flush the loo or turn taps. I was offered a home visit then later told they don't do home visits