Child and Family Unit Post Diagnosis

[mark19mc]

Hi

 

Just wondering if anyone else has had similiar problem as me and managed to get the situation sorted, and if so how. Or just for any advice on where to go next.

 

Ok, well my daughter is 3 and Half. 2 years ago we took her to the GP because her sleep was terrible (get up at 7 am go bed at 5am the next morning 7 days a week) and her behaviour was scary, smashing her head off stuff, biting herself etc etc.

 

All we wanted was help for her sleep problem. After 2 years of going through hospital appointments, meetings, etc etc we were finally told that my daughter has Autism is is 'quite high up' on the scale according to the consultant. We were assured at the time now that a diagnosis had been made the help would be around for her sleep and behaviour problems.

 

The day she was diagnosed we spoke with a physcologist who gave us an appointment for a home visit a month later, he told us this would be followed up with further ap[pointments by hima community nurses to help with my girls sleep, toileting, behaviour etc etc. That sounded great, after 2 years finally help was coming.

 

A month later the appointment date come, half hour before the appointment phone rang, and we were told appointment was cancelled because the bloke was off sick. He then rang 2 days later apologised and arranged an appointment for the following week. The appointment day came again.... and past until the phone rang the next day, the bloke this time told me he had been too busy to attend. Again, it was disappointing but he assured us next week was the week he would 100% come. To cuit this part short this happened 2 more times, he never ever bothered turning up and then he left the hospital because he was just covering for someone while she was on maternity leave.

 

Despite us calling the hospital many many times we could never get through to the consultant again and she refused to ring us back. However, in April aftert speaking with our health visitor (who has been brilliant, an absolute credit to the NHS) she arranged a meeting at my daughters nursery for everyone to attend, amazingly the Child and Family Unit attended, in fact it was the woman who had been away on maternity leave.

 

At the meeting the learning disabilities team had pointed out to the child and family unit that my daughter fell under their care because she was under school age. Child and Family united didnt like it much but after a while admitted that in this area (Gateshead) they were responsible for providing the things that they had promised us. We went away feeling good, finally it was all going to be sorted.

 

3 weeks after the meeting at the nursery we had heard back from everyone that was at the meeting, the education department, learning disabilities team, health visitor, barnardos, etc etc etc but not Child and Family Unit. That was until the 19th May, when a letter came through from them. It basically said that following our meeting they had decided that they were to have further part in my daughters care due to her having being diagnosed with a learning disability. My first problem with this is the letter was typed just 1 week after the appointment and then took 2 weeks to even be sent out from the hospital, after many phone calls we found out that it was 'sitting around, waiting to be signed' for that period of time!

 

So basically after over 2 years of diagnosis, they ahve decided the best course of action is to forget she exists, because she has a learning disability!! I have contacted the PAL's service (Patient Liason) and the divisional manager regarding the situation, my health visitor has never heard of anything like it, and has had to file a complaint herself about them because of the total disrespect she is shown when trying to get our case moved forward. The learning disabilites team have said they will take her referral but wont be able to do much with her until she is of school age (September 2009).

 

Im basically just writing this to see if anyone has any ideas of where to go next, is there anyway i can do to force the child and family unit into keeping up the promises that they made, i dont want anything more just for them to keep to what they said.

 

Thanls for your help

[poppynurse]

You need to find out who is in charge of the Child and Family Unit - the hospital NHS trust or the PCT, then write to the Chief Exec copy in the operations manager, director of nursing and director of medicine, outlining your complaints and asking them to enforce the C&F units involvement.

[Bookworm]

I am a little bit confused, where does the learning disability diagnosis come from?

 

Autism is not a learning disability in itself, it can however come with learning difficulties ranging from mild to extremely severe.

 

My point is that if and when you finally get the support you need, you need to make sure that the behavioural issues are dealt with from an autism-related approach, and you need to make sure the Child and Family Unit actually can handle it from that point of view.

 

Sorry I can't help with advice on the child and family unit themselves and how to make them do their job, but I think you'll find that that attitude is characteristic in dealing with autism. Someone I know, her daughter has just been diagnosed with a form of cerebral palsy, and the help they're getting from physios, psychologist, OT, SALT, you name it, is incredible. Autism, on the other hand, is often mis-diagnosed, misconstrued, and bounced back from mental health and back, with incredibly little support for the children and their families. Sorry if I sound bitter, well, I am.

 

If you are isolated and want to know more where to get support and advice outside of the NHS, just say so, and I'll post a few pointers.

[mark19mc]

The child and family Unit are part of the NHS, the learning disabilities team are part of the Primary Care Trust.

 

She was diagnosed with Autism but the hospital said when she turns 5 they will also diagnose her with ADHD almost certainly, but cant before she is 5. My problem comes with the fact that the NHS assured us when she was diagnosed that we would get the help and support and now they are saying because she has been diagnosed they can no longer help, that doesnt really make much sense to me. However the learning disabilities team have expressed to us and the hospital that really my daughter shouldnt be diagnosed with any learning disability until she is at least 5, the guy we are dealing with from the learning diabilities team has said to us he thinks its just the hospitals way of telling us they can't be bothered!

 

As I've said I have contacted the Divisional Manager for the Child Unit and she has decided because of our case it must mean any children under the age of 5 in the area that have been diagnosed can't access any help, therefore she needs to do a review of the department, she then went onto say that this wouldnt help us in anyway but its reassurance for us to know that something is being done for future cases and other families wouldnt find themselves in our position! Fantastic!

 

Any idea Bookworm on where to turn would be fantastic, at the moment help is virtually non existant.

[demon_x_slash]

bump