Inequality of resources...

[eidsvold]

Went to DSA AGM this weekend gone... interesting hearing people moaning about having SALT and portage and think that perhaps their child does not need SALT at 6 months old..... I wish we lived in London - seems to be lots available.

I can't get portage as they don't do it in our area, SALT does not want to see dd as she has no feeding problems... no mind that she is not progressing with her language development.

Had a SALT presenting a session about creating standards of care for people by SALTs and the number of people moaning about what is happening - I just wanted to cry. I felt for a couple sitting next to me whose little ds is about 10 months old and has Down's syndrome. They have had no support - no physio, no OT, no SALT nothing.... certainly made me count my blessing for the little that I got.

BTW saw dd's two page spread in the DSA Annual Review - she looks gorgeous ( even if I say so myself) dh and I must not have been too good as there were no pics of us with her

[fio2]

Sorry to be so self-centred but when that genetic woman came today (she came from B'ham womens hospital) she was saying what support has dd had etc.etc. ........I felt like saying none apart from me and her dad, and I mean it!!

Honestly I am so fed up with people trying to make out you get everything when quite honestly you dont

I just feel s sorry for people who havent got the knowledge to do 'therapies' and I dont mean this derogatory (oops sp?) I am crap at makaton I dont mind admitting it! but alot of people havent got the money to pay private or havent got the skills themselves to do the therapy and I think its rubbish

[Jimjams]

I soent ages moaning at the registrar last week about lack of SALT and lack of resources. He then sent a copy of his letter to the SALT but phrased it so it looked as if I had moaned about her (I told him 4 times I was moaning about lack of provision not individual SALTS.) So I had to explain to her that I hadn't complained about her.

I also pointed out to him that people who couldn't afford to go private were stuffed. And told her we'd got so desperate we'd taken to emailing a SALT in the US for advice. It's wrong wrong wrong.

Eidsvold the London Borough weused to live in was just as bad as down here. ALthough it was easier to buy in a service.

[lou33]

We didn't have any real support when we lived in our previous house a year ago. They only started giving ds2 one session of pt a month when they knew we were about to move areas! I feel really lucky to be where we are now. When we lived in London with dd1, she had good support from Hammersmith and Fulham, and later Kensington and Chelsea, but I would think it differs in London borough by borough just like it does elsewhere in the country, county by county.

[Davros]

I think we have had just about as good as you can get, but not without a fight of course. I do agree that it varies from borough to borough in London and it even varies within the same borough. The LEAs in particular, and health profs to a lesser extent, are always learning how to avoid spending their money. What I do, and so do many of my friends, is make sure that we share our experience, better ability at getting through the system, better education, confidence etc with those who are not as able as us or who have less time, english as second language etc. Basically anyone who needs some help we try to give it. (oh gawd, sound like bloody saint but just think its the only way to undermine the system and get help for those who need it)

[eidsvold]

that is not self centred fio that is what I am talking about - it seems depending on where you are depends on what is available and how you can get it. It seems such a same. In fact I think I would have said that fio. I am slowly realising that being a pushy assertive parent gets you somewhere although it is totally exhausting and stressful.

I am particularly angry as studies have shown that 97%of people with down's syndrome will have speech and language problems and yet parents where I live are not referred unless it is a feeding issue ( don't know about any of you and what occurs where you are?) Despite that - another baby in dd's physio group has a number of problems with feeding - she has seen the SALT for about 10 minutes 2 times in the last year or so.

I know reading about your fights jimjams just to get something - that is isn't just in our area.

Davros - not saintly just facts - I value other parents' support and input with any situation - often helps me achieve what I need to for dd.

We really can't afford it but have decided to look into private SALT for dd - might be the only answer.

IT just seems so wrong - if all of us aren't getting appropriate and adequate support who is?!?!?

[Jimjams]

What reeeaaaalllllyyyyy anooys me is when the professionals say "yes we agree your child does need x,y,z but there aren't the resources". Oh well that's OK then!!!!! I have had that from so many people now. Universal cop out. The paed said it to me last week so I replied "oh so it's write to my MP time then is it?" and he looked a bit shocked.

[fio2]

we get that too jimjams but our local mp goes to ALL the portage do's. Infact at the last one I knew I recognised him but I thought it was my sisters friends Dad and I went up to him and said ' what are you doing here!' and he replied well you know I like to support the sn community and all that, and I was babbling on about how was he, and the job, and his wife. It was only later I realised he was the mp and I had seen him in the local rag!!

[Jimjams]

ha ha ha fio- that's hilarious! I do want to go and corner my MP. Services down here are a joke.

[eidsvold]

oh fio - you should have let him have it after you recovered from the shock of realising who he was

I am thinking about writing to my MP about the appalling lack of resources available etc. I was told today by a HV that the SALT's in this area really don't want to see children with SAL problems until they are over 2 - from past experience of the HV referring children. Well we'll see about that Time to become angry pushy mum again ..... ( so tiresome...)