Do SEND family voices matter in consultations?

A major part of having a family is being a responsible parent or parents. Naturally this means doing all you can to ensure your children are looked after and provided for in all aspects as much as possible.

SEND parents have a greater responsibility to a degree as they must ensure the correct provisions are in place. This can cover a range of things of course depending on the severity of the child's needs, from equipment, to medication, to schools, and seeing specialists who are there to guide and support them long term.

With so much on a parents plate already, would it be safe to assume that a consultant is someone who has our best interests at heart, and the outcomes they seek favour us more than annual targets?

Do we matter in SEND consultations?

I feel it appropriate to take into consideration our experience, along with many other families locally, as we all feel our voices do not matter when we see our long standing consultant.

Why would I and others say this?

The questions are almost always the same and there is almost a feeling that a decision was predetermined with our presence being merely a tick box exercise. A feeling of pushing us aside as much as possible, a feeling that the least that can be done will be done.

Is this just to save money, hit targets, are all SEND families put into the same bucket, are we all just a burden on the local authorities and their resources? Are our dependents seen as useless to the economy so we and they get treated that way?

Without disrespecting anyone's particular circumstances, not all of us are stay home parents and receiving support, there are many parents like us who work full time and still come home run it and take care of our dependants.

An example of limited help

Requests for further help in specific areas almost seem to be a burden rather than parents being understood and supported.

An example. We are currently experiencing a lack of sleep due to Luis waking up at various early hours during the night and at times not going back to sleep at all or going back at almost 6am. We know this is not an isolated case with us as others have discussed with me similar experiences with their children.

We have been seeking help to get something more effective than melatonin but have had nothing but pushbacks and pushed onto sleeping workshops. The information provided in the workshop is very basic, but compulsory to attend if you want further help which we still cannot seem to get.

I do personally know someone who has been prescribed something more effective for their child to help them sleep, so I do know it is possible.

The current challenge we are being told is about the effect sleeping medication may have on his ASMs (Anti-seizure medications). The effect on AMS's is another topic in itself, but to generalise effects seems to border ignorance. Consultants are suppose to know that no two individuals are affected in equal measure.

Is this with all Consultants?

Are all consultants operating in the same way, I am not able to answer that, however having researched and spoken to enough people, I feel as thought my experience is not isolated.

There is a general feeling that those who are supposed to offer more help to us are actually offering a lot less and inconsistent support.