What would be useful?

[mencapcharity]

Hi Mumsnetters. My name is Gemma and I work for Mencap which is a learning disability charity. We are currently working on developing information materials for parents of a child with a new learning disability diagnosis.

We know that currently, the information is either not available or is not good quality and we want to improve this. We also know that some parents have bad experiences of medical professionals and we want to use these experiences to turn this around and build a best practice guide.

The two main points we are looking at are:

What information would have been helpful to you at the point of diagnosis?
What were your experiences with medical professionals - positive or negative?

We would really appreciate your input. You can either talk about this here or if you would prefer you can email me at [email protected]

Thanks for your time,
Gemma

Most the children I know with unexplained learning disabilities didn't get a diagnosis of LD as such. The diagnosis is just a change of phrase in a long chain of changing phrases ( a bit delayed - GDD- MLD - SLD.)In addition the change of phrase is usually only in letters to others and could easily be missed by parents - it should be explained. Ours was in a copy of the paediatricians report for the statement review when our son was 8.
Where I could have done with support was in in the early years when nothing at all is happening, (the long waits for appointments which all seem to be wait and see) and starting school. Finding information is difficult if you cannot access a computor (or have a demanding sn child who sleeps poorly) and I wasted a lot of time just trying to get information. We all know early intervention is important - but children with LD (but without another Dx) get nothing - because they are deamed not able enough for SALT or OT.
There needs to be some system to support children who have sufficient delay to suggest LD long before the specialists give a Dx of LD(at 7-8). The support needs to include access to services including SALT for pre and newly verbal children (not just children able to acheive 3 word sentances), continance support (especially once child is at school) and behavioural advice.
A list of suitable playgroups,sn clubs, suitable afterschool clubs ( if any!) or other inclusive or sn facilities and parent support groups or training programmes would be helpful.
A list of resouces would be useful. Financial information like DLA and carers ( I did not know about these till my son was nearly 8)
So my point is that I needed support and information (about therapies/behaviour/ parent support/ schooling/ toilet training)long before my child got a Dx of LD.
As far as the support we have had from medical staff so far? Well I do not think we have had any, although there was a very helpful ot - unfortunatly ds was 7 by the time we got to the top of a very long system of waits and was too old for nhs ot. She very kindly saw him twice anyway - and copied loads of stuff to keep us going! I still use that information and techniques. Ds now gets SALT on a weekly basis ( and has done since he was 8).
There is nothing in place to support parents of children who get a Dx over school age.

Thanks magso that's really useful information. Best wishes, Gemma.

Hmmm. I'm a bit sceptical of Mencap, tbh.

However, fwiw, what would have been (still would be) most useful would be some sort of need assessors - not so much telling me that DD1 was entitled to DLA, or what a statement was (I can work that out, thanks) but rather assessing my child and telling me honestly what I should be fighting for from education, SS and NHS - does she need physio? How much? How often? When does melatonin actually help? What are the pros and cons of NG tubes? That sort of thing.

We're all trying to do the "best" for our kids but operating from a position of weakness because the gatekeepers to services hold all the information. They can always say "oh, I've been seeing kids like this for 20 years and I can assure you she doesn't really need anything from the service at present" and there is nothing you can say in reply that they will take notice of, because you are not the expert.