Seeking diagnosis

These postcode variations fly in the face of government promises (not that I believe in any of them) and the various follow ups to the autism act.

In theory you can assert your concerns if the infrastructure has developed at all. The clinical commissioning group in Lincolnshire should be accessible via GP surgery Patient Participation Groups (PPGs).

In theory every GP surgery should have a PPG - a voluntary patient-led panel or committee. If the GP surgery has a website information on the PPG should be on it, or just ask the surgery about PPG. This provides an opportunity to raise a concern about autism diagnosis and support. PPGs will have some interface with the local clinical commissioning group, and could provide a means of raising the issue in your area.

Your area hospital should also have committees accessible by the public addressing disability and equality, as a means of raising concern.

Within the local authority there should, under the autism act, be a commissioning officer who covers autism - trouble is this has tended to end up being either the mental health or learning disability commissioning manager, not really functioning in line with the autism act (eg only helping people with autism if they also have a learning disability). NAS was monitoring this and providing performance tables, by local authority, but this has fizzled out, and many local authorities made false claims to avoid penalties at autism act deadlines.

However your local authority should be responding to both the autism act and the care act, and there should be some sort of review panel quarterly or some other frequency where a member of the public can ask why diagnosis services haven't materialised.

In both the health sector and local authorities, autism provision is very inconsistent, but the present government claims these mechanisms exist - it may not be easy, but posters on here in Lincolnshire should be able to make their voice heard.

This is important given the situation of OrangeCow, who at 16 cannot seem to get the help to which Orange Cow ought to have a right. So Lincolnshire readers of this site need to start asking questions about local provision in the light of the Autism Act and the Care Act. Lincolnshire may be ducking their responsibilities because no-one has yet challenged their failings.

hi OrangeCow

My daughter is nearly 16 and it was the mental health practitioner who eventually suggested she be tested to see if she was on the ASD spectrum.  She brought questionaires for my daughter to fill in and took notes on early years, child development, school,  etc.  

Could you possibly ask your mental health nurse if she knows how to go about it? Even if you don't see the nurse now, you could perhaps still give her department a ring?

The GPs around here doesn't do any referrals for testing either.

Lincolnshire is a big area, and it seems some parts have better support than others.

I have been told that even if my daughter is diagnosed there is no support in my part of the county.

Sorry, full link is

www.spirehealthcare.com/.../

Hi

I think you're really brave and resourceful to be tackling this by yourself at 16.

Have a look at http://www.canadda.org.uk/

and

www.spirehealthcare.com/.../

I found both of these links by searching the NAS site and don't know how useful they might be. The support group may not require you to have a formal diagnosis before they support you. Maybe try emailing them to explain your situation.

I wish you heaps of luck!

Yours Neurodiversely

Electra

Hi OrangeCow,

I am sure making a phone call must be very tricky for you.

If you were able to maybe ask for support from a friend or family member who could support you to make a phone call, or if not, please follow the link below, as there is also a link to email support with the helpline;

www.autism.org.uk/.../contact-us.aspx

I hope you are able to find some answers soon,

Kind regards,

Coco (Moderator)

I don't usually ring people as i worry A LOT about my family hearing. I really don't want to cause arguments or more distress for me. I don't want to seem like i am avoiding things, sorry. I did look on the map, i then tried to research this place which landed me on the nhs website--> www.nhs.uk/.../GenericServiceDetails.aspx do you happen to know anything about them? Because i wouldn't want to take the trouble of finding the money to travel around 2 hours on the bus to be let down.

thank-you for the reply:)

Hello OrangeCow

I'm sorry, I don't Live in Lincolnshire, but I'd be surprised if you don't get an answer shortly.

I just wanted first, to let you see that people will be here at some point, and second, have you rung the Helpline or looked on the map?