Attitudes towards professionals

[Lougle]

I'm an 'old' face on this board. I used to be quite prolific in posting, then I took a step back...now I lurk.

I have always read the board, contributed and encouraged parents to be proactive and assertive with professionals.

Now, however, I have been increasingly disturbed by the wave of militancy I have seen here. It has disturbed me so much, that on the many occasions I have started to post, I have realised I have nothing to say that will be received.

What has happened to us? As a community, we used to be a body of people who would give new parents, desparate for advice and direction, clear, objective advice. Advice that encouraged them to ask questions, push forward their path to answers.

Now, I see new parents being given what I view to be propoganda. No longer advice alone, but a politicicised viewpoint of Us vs. Them. The Them being health and education professionals.

Thread after thread with the sentiment that cost is the only motivator for professionals. That all our children are being sold short. That nobody cares for their child. That TEACCH is rubbish. That only ABA will do. That you need to FIGHT and you need to attack.

It isn't so.

I am shocked and saddened. I am displaced. I am no longer sure of where I belong.

We spend our time moaning that professionals don't want to work with us. If attitudes are as they are expressed on this board right now, what is there to work with???

"Ah, so the letter that I received from the head of SALT with 24 apologies and next steps in it a year ago should be dug out and responded to with a request for an update as to how they are doing with their plans!?

I received a draft service descprition (can't remember the official name) after complaining that in the 2 years with them I had no idea what they were for, but as far as I can tell a whole year has passed and no final document has been produced."

Yes!!!! Definitely!

"No, I'm expecting them to do their job and apply skills which can assist my child in his development. If they do not have those skills, or they cannot use them because of internal pathways, protocols or whatever else you want to call them, then I expect them to tell me that so that I know where I stand."

This is easier said than done. We had local discussions about this in terms of the Lidcombe pathway for stammering - it is the best EBP for stammering but we are not able to offer it due to an issue with training the requisite staff/resources to offer the full 12 week programme (or whatever it is). Repeatedly, management have said that we are not to say that clients are not getting Lidcombe unless they specifically for it. This is discussed/debated/argued agan and again etc. If you go against management policy or break Trust communications policy (e.g. speak to the papers etc) you would face disciplinary.

"We wouldn't accept this attitude in any area of healthcare. You wouldn't go to your GP and get referred to a specialist and then have the specialist say 'you do have a problem and we can treat it and that would help you but our internal pathways says we don't need to treat that so off you go'."

Beg to differ there, Bigbobble :)

It happens ALL the time. How many cancer treatments are turned down because the 6 months life extension isn't deemed worth the £300,000?

What about IVF treatments, where arbitrary criteria such as age and number of children affect the approval of treatment?

Or the children who are turned down for state-of-the-art 'smart' prosthesis because they are sooo expensive and need replacing every year?

Rationally, it would be disgraceful if a child was denied the chance to learn to sit up on their own because my child was being taught how to use the /l/ sound within words, wouldn't it?

Incidentally, I have asked both HPC and RCSLT about this - about what you can do if you don't get action at local level when you raise a service delivery issue. Their response is to go via the union e.g. they won't take responsibility for it. Our union representation is pretty crap but I have tried this a few times.. I don't know how it is in other trusts, though.

I remember meeting with the SALT manager and the ineffective SALT. I heard a lot of 'x is gutted, truly gutted' 'x feels terrible'.

I said there and then: "I don't want x to feel anything. I want SALT for my child, and for assessment to be accurate and meaningful."

On a personal level, I think the term 'Speech and Language delay' is cruel and misleading. When will she catch up? The fact is, she won't, IMO. She has made no progress with speech clarity that I can see, since she was first flagged at 2.9. She is 5.5. 2 years 8 months on, she still needs me to translate even with close family who see her daily.

I have found that when I've met "the brick wall" or felt I should have been more forceful then I do have the option to become more unreasonable, more emotional etc. If you start out that way then you can't use it to your advantage when you need to. I know that sounds very cold and calculating and its not always possible to choose when you get upset and emotional but it does help when it is a natural response rather than a default approach. I also tell them everything, I had to tell our social worker recently that DH had been in tears on the phone to me because he was coping with both kids while I was in hospital. It was true for a start, really gives an honest and rounded picture of what is going on and is hard for them to ignore us as a family asking for help.

Lougle, if speech clarity hasn't improved in that amount of time and intelligibility is compromised, your dd needs another assessment! Look for a DEAP - you need percentage consonants correct and also an inconsistency assessment.

Speech clarity is one of the things that really, we can do something about... we have seen good gains even in secondary school students. With an appropriate programme and demonstration, you or school could do a lot of the therapy..

Hope this helps!