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Here are some suggested organisations that offer expert advice on SN.

Social Workers!!!!!!!!!!!!!!!!

(21 Posts)
Twinmumof2 Thu 15-Sep-11 11:04:12

I have had a total of 9 visits from about 5 different social workers. All of them say the same thing - we need to have a diagnosis for my 2 year old twins. They cannot stand up, feed themselves with a spoon, drink from an open cup, they have sleep problems. I have mental health problems, my husband has arthritis in his hands which is so painful for him. after 10 months of asking no help. We have been referred to Great ORmand Street because none of the local doctors know or understand what is going on. It is possible that we will never get a diagnossis - so no help ever.

Dawndonna Thu 15-Sep-11 11:12:20

When you get your appointment at Great Ormond Street, book to see the social workers there, after your appointment. They're really good at getting things going in your own area.

StarlightMcKenzie Thu 15-Sep-11 12:40:56

Write to them and outline the difficulties you are having and ask them to clarify their policy on no help without diagnosis and send you their policy document that states this is okay.

lisad123 Thu 15-Sep-11 12:52:00

I would ask where it states in their policys that help only comes with dx, and not based on need angry

Twinmumof2 Thu 15-Sep-11 13:03:01

The whole thing turns on the phrase "Substantial and longterm" - 2 year olds who can't stand is definitely substantial but as there is no diagnosis the argument is about long-term. As there is no diagnosis no one can give a prognosis - which means no Doctor will go on the record about long term. Oh and just to top it off my husband has really bad arthritis in his hands which means he has been signed off work for 2 months.

Twinmumof2 Thu 15-Sep-11 13:03:34

I have no idea how we will survive the weekend, we have no family or friends who can help

StarlightMcKenzie Thu 15-Sep-11 13:38:10

wtf? No-one can EVER give a prognosis.

And what is long-term? 3 weeks? 3 years? 3 decades?

Ask them this too.

Although tbh, Dawn's solution might be the quickest and easiest.

Twinmumof2 Thu 15-Sep-11 17:38:42

I have been on the phone nearly all day - it was a good call speaking to GOSH social work - we have to get ourselves referred when we visit. I spoke to a county councillor and the head of children's services PA. Hopefully now there will some movement.

thank you for your kind replies

TalesOfTheUnexpected Thu 15-Sep-11 18:35:15

twinmumof2 you have to fight, fight and fight! You've done the right thing getting in touch with the CC and head of services PA. GOSH is a great place but you need to get in touch with the people that provide the local support yourself. Ignore the Social Workers you've already seen who have been no use and get on the phone yourself (it sounds like you've done that already).

The best thing I did was get in touch with my local "Children with Disabilities team". I'm not sure if they have one everywhere in the country, but this gave me access to so much help.

I have twins. They have not got a diagnosis, but we've had help since they were about 2 years old. Both didn't walk until they were over 2 years old, both had feeding difficulties, etc.

A lack of a diagnosis should not prevent you from getting help. 7 years on, I have no diagnosis for my twins but I've had help for the past 5 years in the way of Portage, placement in a SN nursery and then a SN school, and a Carer who comes for 8 hours a week.

Sorry to hear about you and your husband's ailments. It must be hard.

signandsmile Thu 15-Sep-11 18:57:53

Though this might help...

Children Act (89) defines Child in Need

2.10 A child is defined as being a child in need if:

They are unlikely to achieve or maintain, or have the opportunity of achieving, or maintaining, a reasonable standard of health or development without the provision for them of services by a Local Authority

Their health or development is likely to be significantly impaired or further impaired, without the provision of such services

They are disabled. (Sec. 17/10) Children Act 1989)

There is no mention of specific diagnoses within the Act, At the least you should get an assessment of need, (this doesn't guarantee services.) It might also be useful to look at the definition of 'disabled' used in the act, as (if my memory serves me right,)it is the old and not very pc one...

Also worth talking to adults team around support for your husband as 'disabled parent' might be some direct payments available...

Good luck

TalesOfTheUnexpected Thu 15-Sep-11 19:41:19

signandsmile very useful info. I'm sure it will help the OP. x

(oh, am I allowed to put 'x' on Mumsnet????) smile

signandsmile Thu 15-Sep-11 19:52:37

I won't tell anyone if you don't grin

Frustrated2003 Fri 16-Sep-11 20:40:40

A lack of diagnosis does not preclude them carrying out an assesment of need. If the child is not achieving or meeting the 5 outcomes due to an additional need the Local Authority have a duty to provide support. An assessment should be carried out under s17 of Children Act 1989 and parents are entitled to a carers assessment under the Carers Recognition Act.

Local Authorities are notorious for trying to get away with not following their duties under legal obligations, but I tend to find a well worded letter to local MP gets them off there butts, and in my experience take your local MP to a meeting with Children Services and this gets you more support also.

clevergingercat Fri 16-Sep-11 20:50:11

Hi Twinmumof2,

Where abouts do you live?

Just wondering as I could try and see what help you have available. I do feel for you as I have 4 special needs children.


clevergingercat Fri 16-Sep-11 20:52:31

Actually, before I forget, my daughter couldn't even sit up when she was 2 and the GP referred her to the physio service - have you tried this route first?

singforsupper Fri 16-Sep-11 20:57:31

It is possible that GOSH have decided they can't afford to take you on. They have been getting tighter with their referrals recently so maybe that's something to do with it. Were you on medications when you were pregnant? It is also possible that, if you were, and that (god forbid) the meds affected your babies, the hospital trust would be liable for damages. Sorry to be blunt about it, but it does happen. This may explain the slow diagnosis and support.

singforsupper Fri 16-Sep-11 21:00:13

Sorry I just read that you have made contact with GOSH. Once you're on their books you will be fine. smile

BakeliteBelle Fri 16-Sep-11 22:35:49

What do you need from social services? Is it anything that you can self-refer to without the need of a social worker? I'm just saying that because sometimes, social workers are just an obstacle to help and you can access some things without them

Twinmumof2 Sun 25-Sep-11 10:56:14

thank you for you kind messages - I live in Norwich - I will try and make contact with the children with disabilities service - that sounds like a good idea.

I do think you are allowed to put 'x' on mumsnet


tiredoffightingwithjelly Sun 25-Sep-11 13:53:11

Have you thought about requesting a statutory assessment in order to get things moving? Ipsea have information on their website and at least this would lead to a number of agencies undertaking assessments.

Have you contacted your early years service or have you gone direct to a generic local ss team? Have they completed an initial assessment or core assessment or have they closed your referrals on the basis of advice given only?
I would maybe try to contact your local early years services, it may be that portage is available to you.

2old2beamum Sun 25-Sep-11 18:14:45

What is a social worker may I ask? I have 2 DC's 6 and 12 both tube fed, non mobile, one deafblind. Haven't seen or heard from SW dept for nearly 2 years, and I am not alone in this area.

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