Autism - does anyone oversee your child's care?

[appropriatelytrained]

We have just spent 2 weeks at GOSH doing an intensive physio course for DS's hypermobility.

Many of the children had cross over problems with other clinical depts such as gastric or other depts.

However, there seemed to be very little support for children who were hypermobile and on the spectrum. This was very frustrating as many of the sensory and other issues autistic children have seem to clearly cross over with the biomechanical problems of hypermobility syndrome.

The team said they would refer back to our community paediatrician to try and get some support for DS with some of his other issues like physio, sensory, psychological. They felt he should have one person who was responsible for managing his overall care. Yet, as many of you will know, I have spent years battling for local services who either don't want to or don't know how to offer support.

Our community paediatrician is lovely beyond measure but she can't invest clinical pathways which don't exist or summon up services through wishful thinking. This feels like going back to square 1!

I was also frustrated that children who had a problem with their eyesight or bowels while on the course, were referred straight on to specialist teams by the physios. But the only response to complex children like DS (who projectile vomited when he smelt something he didn't like) was to refer to a community paediatrician who can't do very much about anything at the end of the day.

The idea of having a single person guide DS's care and support is marvellous but this is the real world and it doesn't happen. I am not even sure who it should be!

I would happily pay for a referral to someone if I thought they were capable of addressing overlapping needs but who would you go to??

It sounds lovely, but, as you say, I think that person is you! The parents or carers. Of course the Paediatrician does in some ways (although usually only the medical staff).
Do you use an Early Support Family File ? At least that means the documentation and information is altogether and accessible to whoever you are involved with.

Dd3 also has hypermobility syndrome and ASD and no, no one oversees her care, [except me].

I asked exactly the same question to her SENCO a couple of weeks ago. Basically Dd3 has been discharged rom everything.

She had physio for 6 months and then was discharged.

Ot's assessed and discharged.

SALT assessed and passed her onto school outreach who we haven't heard from since, although to be fair her old school wouldn't have invited her in because Dd3 had no problems there!!.

Community paeds passed her on to CAMHS and then discharged her and
CAMHS diagnosed and then discharged.

Podiatry said yes she needs orthotics, prescribed them and then discharged but I have just rereferred her becasue her feet are growing.

The SENCO is trying to find out if the Outreach team even know about her, I am betting they don't, she is also requesting SALT to come in to school and she has set up a physio club at school, Bless her.

I bet you wish you hadn't asked now.

I have the reverse problem with GOSH. They are quite happy to refer to different departments/specialisms within GOSH - but DS3s community paediatrician is linking his care and couldn't give a.... GOSH have to write to her and ask if our PCT can offer the service that they would like to offer - she doesn't reply or passes the buck to local gastro team \ ENT team.
I can only see this problem of who refers to who getting worse as they try to de-centralise the funding route and pass it off to the smaller GP consortiums. Ultimately all referrals are seen as funding decisions and rarely clinical ones. The decisions they make are 'guided' by NICE, by which I mean that if NICE say something shouldn't be funded then it won't be, if they say yes it should - well it's only a guideline and the PCT don't have to go with it.
Btw, DS was referred (I asked for a second opinion ) by ENT consultant to GOSH who has seen Gastr, ENT, SALT and been referred to psychology services (which is the bit we're waiting for)

I can see that money is the root of all evil!

Interestingly, the team were very keen to refer one child who did not appear to have any signs of ASD (talking to his mum at length) but wouldn't do as they asked, to the specialist neurodisability team. Yet DS, who they described as having complex problems and who has a diagnosis and was clearly suffering with a whole host of sensory difficulties was left to it.

I was really annoyed when I pointed out DS's constant floppiness to the physio doing the assessment before we left. This hadn't seemingly been improved at all. Her answer - I don't know why that happens, who knows what that is about, maybe no one knows. I had to say that's fine as a response as long as the person who is saying this says - this is my area of expertise, and I can tell you no one knows why this happens. Instead you get, I don't know, maybe no one does, who cares anyway.

This was neatly rounded off with 'he'll learn as he gets older by watching other children not to do that'.

Seriously? He's got an ASD, if he learnt by watching others, we'd have no problems!

I would happily pay for someone to advise if I felt they knew what they were talking about!

Dd3 is seriously floppy too AT, she is worse when she is tired or unwell.

The OT's said she has poor core stability, low muscle tone, poor shouldre stability and she came out as 16th percentile for her motor skills. And then they discharged her.

I knew nothing about her being hypermobile until this point [she was 8], I only knew that she tired very easily [she continued to have an afternoon nap until 4.5] and often complained about her feet hurting when walking or hands when writing. I just thought she was being lazy, I felt awful when I realised that she genuinly has a problem.

The only person apart from the SENCO who has been supportive towards her has been her swimming teacher who is ace.

She is slowly improving and getting stronger with all the physio, we do it every day and she does it at school now too.

I agree about not learning from others, Dd3 doesn't notice anything that other children do, oh unless they break a rule of course.

This week becasue she has been unwell she has spent most of the week draped all over me, I said to her the other day it is like I am wearing her.

I went to tesco today just for a break, how sad is that.

Ineedalife - I know the feeling!

I have spent 2 weeks in London alone with DS and just doing the washing up in the kitchen alone is bliss!

I too have to 'wear' DS. I said the other day that I end up dragging him down the street like I'm press-ganging him - with his leaden legs trailing behind him.

I wear DS1 - And I hate it when he leans on my bag to support himself - It doubles the weight of the bag and pulls me down - and I'm too short to be dragged down even further!
Hate to say appropriately that DS3 gets referred and doesn't have ASD - not to say that i'm that he doesn't have ASD - that would be weird, just that I know what you mean that he has less overall issues to contend with than a child with ASD but seems to be getting the referrals.
DS1 on the other hand is more like Ineedalife experience - discharged from everything - then having to get re-referred to get further help - the same merry-go-round.
I'm trying to get support re hypermobility at the moment for him - and I'm getting nowhere fast. Just been contemplating my next move - but waiting on community paeds latest report to see if they have decided what they are going to do. Everything had to be run by the boss - so couldn't give me any idea as to what the next steps are. I was all ready to ask for a second opinion - but I didn't even get a first one. Even more annoying as I was due to see the boss - but she didn't show. Don't know if it had anything to do with her saying to me that we were going to have to agree to disagree. Which amusingly was about DS3 - and GOSH didn't disagree with me

Hi DS2 has a community consultant paed who overseas all his care & she is fantastic. Organises & chairs all his multi disiplinary meetings, insists everyone addresses all reports to her & kicks ass if people dont do as she tells them.
I honestly believe we have had such good support both medical & educational because of this lady.
She is my hero!

Wow, that is impressive! Maybe they think everyone's community paediatrician is like that.

Ours is lovely but no one does anything but follow their own agenda.

Wow, that is impressive! Maybe they think everyone's community paediatrician is like that.

Ours is lovely but no one does anything but follow their own agenda.

Yep appropriate, she is impressive, proper old school, say it as it is but kind & caring with it.
Its not uncommon for her to phone parents at 8pm & say I've just got a DLA form for your child, now what are we going to write?

From my expereince the only person to oversee your childs care is you. I work as a nurse specialist and oversee my patients care within my speciality make sure all appointments are made and kept, test done, treatment planned etc. have discussed this issue with lots of different individuals in the multi-disiplinary team and have been told it is because ASD is a spectrum and so multi-faeceted that it is impossible to have one person to act as an advocate. I have to say i strongly disagree but as said before unless money is ploughed into this we have no hope of this ever happening. If you are really lucky you might get a professional that really cares and goes the extra mile unfortunately moral in the NHS is so low it is hard to get the motivation to go the extra mile everyday!