Introduction and appeal

Where do you begin and on what grounds.

When so many things are wrong clearly something should be done but how?

I would imagine a class action would have to be about one thing with many parties involved.

What recourse does a parent have in recording their complaints and getting heard.

You can submit a complaint directly and if not satisfied with the way it is dealt with continue it into an official complaint. This is not that easy or straightforward though.

I would suggest to anyone that even though it may be fruitless it is still worth doing. If for no other reason than it provides you with some tangible written evidence that at that point in time you had an issue.

One problem with any complaint or discussion you wish to raise is that all meetings and even complaints filed are made very narrow in focus. Just like the patient when he goes to a Doctor must have one ailment only. Another appointment is required for the next ailment. So when you have meetings with the Doctor, Nurse, physio, teachers you might like to discuss many things. You may want recourse on past events etc.. None of this is really allowed, so narrow is the agenda that they move things in the direction they wish and at the speed they wish. Often and I am speaking from just having come from one such meeting today, these meetings will end up having consisted of an exchange of pleasantries by the professionals and statements exchanged of which they all know in advance. Mostly nothing has been concluded, it is a formality a bit like parents night put on for the parents. 

You can complain, but they are not there to register your complaints and won't do so.

You can explain, they will reassure you that's fine but they are not there to register your explanations and won't do so.

You can co-operate, this they like more, provided that it takes them in the direction the intend to go anyway.

So again by what mechanism does a parent have to effectively and speedily pick up concerns, have them addressed and logged for posterity. Also what recourse is there for hearing critisisms of the services being provided.

There is no effective feedback method, just long winded and narrow focused complaints procedure and a very narrow focused meetings for the purposes of demonstration of parents.

Next time you leave such a meeting ask yourself

what action is occuring that was not previously going to occur?

what descisions have been made in this meeting?

Don't be surprised for the most part if the answer is none to both. 

I feel very strongly that the Government are knowingly or unknowingly setting us up for a fall.

Central Government make promises and pledges to help children with Autism.

The local authority can't possible cope financially in honouring these promises so it reneges by simply not diagnosing. Problem solved and scr*w the parents.

'Sorry Mr and Mrs smith but we are going to take you on a magical mystery tour of our services. We won't lie to you, we will simply not tell you the truth. May also totally misslead you sometimes and when the penny does drop, and it will drop, we might get a bit nasty. All the same the joke is on you because we have done this time and time again. The Autism rate has skyrocketed but our budget has'nt. Must mean were getting better and better every year.'

I would prefer no services, no promises, just correct and ethical medical diagnosis quickly and information on how parents could really help their children. It would save so much stress and nonesense.

And another thing, when you do finally reach that holly grail of Autism and get the diagnosis. You will find that the people that are recruited to supposedly help your child have no specialization at all. Straight from a recruitment site for autistic carers for a Government position 'no experience neccesary'. Very few places exist with any proper training or any depth of knowledge about autism. The Local authority certainly can't afford them.

If you want something done right, better to do it yourself eh... 

NAS,

given the frequentcy with which we hear this story, and similar stories regarding the provision of education, is there a possibility of a class action suit against the state? This might be the only way to force minimally acceptable standards of ethics from the organs of government.

Yes, as I sit up not being able to sleep for one more night, I would agree about notes and recording. It may seem extreme to someone new to dealing with the process that comes with an Autistic child. Hopefully you will not need these things. It would provide some insurance however and definately leverage which you will almost certainly require at some point. If I had done this from the start perhaps things would have evolved differently. Even if not it would have made for a very interesting insight into the workings and absurdity which can occur in trying to get help for your child.

You may think some of my statements are over the top or exagerated.

If you do then you will most certainly be like a lamb to the slaughter when dealing with this unpleasant process.

My daughter had her 1st 2 month DTP(no longer available) vaccination on the 16/8/96.

By the 19/8/96 she was admitted by emergency with blood in her stools and the detection of a rotavirus(presumably from vaccination). This problem persisted in the form of bowel problems from then onwards. Long before any thought of autism we had to endure a medical profession which seemed to be in denial of our daughters problem.

The mother is rewarding the child for retaining stool causing constipation.

The child is being fed too much.

The child is being fed the wrong things.

This is a psychological problem not physical.

The mother has munchausen syndrome and is making child ill.

-> None of the above are true but the medical profession is quite happy to entertain any of these far fetched nonsense rather than the sad and more obvious truth.

And so it went with the emerging autism.

First a referal which had been sent out but never arrived.

Then some recognition of dsypraxia and possible autistic traits. Not admitted to us only in notes. A mention of possible dyspraxia was mentioned.

Then many years of contradictory statements and denial of autism, emphasizing anxiety only. We must focus on anxiety.

Then flat refusal of any autism. Followed by rallying cry that there is nothing available for autistic children and that her needs are being met and no diagnosis is required.

Followed by a 'leak' that our region has a policy of no diagnosis for autism.

Followed by the person leaking this information having their contract not renewed.

Followed by assesment day, guess what she is in fact autistic. Apparently the nurse knew all along she was autistic which is strange because only the month before they were adamant she was not.

Quite a bit later my daughter's mum tried to get help with what we now know was the first signs of her psychosis. Naturally she was imagining this and it was ignored and fobbed off until eventually she had a serious attack and A & E did what the Mental health Doctor would not do. Admit her, assess/diagnose her.

If you come forward concerned you are being over reactionary and dramatic.

Despite this the Doctor is suggesting a lack of care and that this problem should have been addressed at an earlier stage. Then as a result of possible liability they are now trying to suggest that she has only severe autism and not psychosis. Despite having been extensively tested and evaluated as having psychosis.

Can you see a pattern yet.

I know my daughter and I know her autistic traits, I also know after her first serious pyschosis the syptoms which are clearly different from her autism.

This stuff never stops, it never ends, the potential for endless bull***t from the medical profession is infinite and they are very good at it.

Protect against litigation is one of their priorities.

Don't even go near Autism|Vaccination|Bowel issues, the men from the government may pay you a visit.

Your child falls under mental health, this pretty much means they can bypass many of your and your childs human rights if they decide to operate under the child protection act. If you have an autistic child or child that presents as autistic then they can use this to intimidate you and get you to back off. When you push for diagnosis they can suggest all manner of things, sexual abuse, munchausens etc.. They don't have to prove a thing all they need to do is suggest enough concern then they can take your child away, you may never see them again.

Oddly once you back off pushing for diagnosis they no longer are concerned about such things and leave you be. Strange that.

When my daughter was in P5 I think I was waiting in my car to pick her up from school and heard a real story of a boy who has Aspergers, this was wrongly diagnosed as psychosis and he was given anti pyschotic medication which made him paranoid. He attacked teenagers with a knife and was detained. Later the Doctors admitted there was a wrong diagnosis in his case but they also maintained he was not in a fit mental condition and would be detained indefinately. Every year a panel of Doctors/pyschiatric decide if he is in any condition to be seen by his parents. He has not been seen since by his parents.

That kind of a story puts you right off pushing for diagnosis it has to be said.

Unfortunately you often don't get a choice. Events mean you cannot sit on the fence. You are locked into this even if you don't have the stomach for it or wish for an alternative route. You end up having to walk the only route available.

So yes, make your own notes and record conversations.

You will be glad you did. 

You should keep your own notes and insist on recording meetings

Thanks Daisygirl.

In some ways it's too late for us.

We entered the process totally unaware of what we were getting into.

Not for one minute did I think that we would be treated quite as badly as we have been.

However after 13 years of this process nothing is unfamiliar anymore. I do think people new to the fray should know the potential problems they may face. I cannot find anywhere or any resource which could enlighten people to the issues.

If I had known what I know now many things would have been approached differently. Every year new people are entering the unfortunate situation of having an autistic child or trying to get help for a child that may turn out to be autistic.

When I think how close we came to getting no diagnosis and how obviously autistic my daughter is it makes me very angry. Despite our region's pr saying they are one of the best council authorities for handling autism they have nothing to offer and no specialized trained people. Yes they have physio's and Doctor's and Teachers but when you scratch below the surface you realize nobody has a specialization in autism or training that gives them any more depth of understanding of the subject than someone with common sense. That last point is unfortunate also because there is a serious lack of common sense also. There seems to be no desire to go any further than to supply a sedative and treat child as if they were in primary 5 with regards autism. 

If you are unlucky enough for your child to develop psychosis then basically you get antipsychotic meds which are seriously not good with horrible side effects. It's what you don't get told that is interesting. What you have to find out yourself because no one will volunteer the information.

A cynical person would suppose that much of the way you are handled is the result of a local authority cost cutting and trying to budget services that have been promised by central government. i.e. the local authority can't cash the cheque written by central government's promises.

I don't want money, if there is no real public health help then that's ok.

What I do not want is to be lied to. To be 'handled' and deceived for years by people who know fine well what they are doing. Nor do I want professionals pretending, (this particularly applies to teachers here) to have specialist knowledge when they have no specific training or depth of insight into autism.

rant over with, personal therapy session ended for today!

Just to make everyone aware. This is the NHS in general.

I have found a great deal of mistakes in my medical notes, obstructive managers and seniour doctors who seem to think that the rules and the complaints process don't apply to them. Senior NHS staff covering their backs at all times. Loads of cut corners, complete lies and rubbish written that clearly does not apply. It is frightening.

It is every department. I would urge everyone to see your notes after every appointment to check what is going on.

The complaints process is long and hard and for Aspies it will destroy you, so get all mistakes sorted as soon as they happen.

I have talked to loads of people and this is also their experience. Mistakes, notes which do not resemble anything and contradict each other, decisions made without the patient's knowledge. Information held back. It is awful.

Thanks for the reply.

Yes my personal thought is that it would be a waste of time trying to legally challenge the parties even though there is considerable evidence they have adopted  a policy of non diagnosis in our catchment area. I also think if it were to be done it should have been done many years ago when it could have possibly acheived some good for my daughter.

Unfortunately however there will be no peace.

I am one of several parties involved and so it's out of my hands to some extent.

Also I would really like to say that the Doctors etc.. involved could help significantly

but I doubt this. Their main concern seems still to cover themselves and they show a very poor consideration of the facts of my daughters situation at times.

e.g. she started out on one anti psychotic which had unacceptable side effects, was moved onto different drug. After a considerable time she was then being swapped over to what was supposed to be a different medication again. Turns out that the Doctor had not fully read her notes and this new drug was in fact the original one which was discounted due to side effects. The Doctor denied this initially but we referenced her notes and it confirmed this to be so.

It seems strange that a system can evolve where the basic unwritten policy is to avoid and discourage diagnosis. They did identify my daughter was presenting with autistic traits very early on. We found this out when the medical notes were requested. They did not give up these notes easily however, first request they gave out only some notes and we specifically had to request the missing years from them.

Despite two Doctors assessing our daughter they did not inform us of their findings at the time. They continued to play dumb for the next 8 years. 

I am not sure how you could suppose to put your trust in people who coordinatedly suppress diagnosis of your child. They don't just fail to diagnose, they stall the diagnosis with every dirty trick in the book. They lead you on a grand tour of nonsense to put you off, intimidate you, sidetrack you, then delay you with waiting lists of years. Then last pitched efforts to stop you continuing the process.

This may all sound a little vitriolic and over the top but I assure you is genuinely our experience. I write it here and if nothing else you should be wary because it is a familiar story in our county. We have spoken to others with similar experiences and treatment. If you have an autistic child or think your child may have autism and live in certain catchments then beware!

No replies needed... 

Your daughter has complex mental health issues. She must come first whatever you do next.

I would be very sceptical about whether it is the best thing for your daughter for you to spend more precious time and effort on a legal dispute. This advice comes from someone who has been a client of the legal system on a number of occasions (only employment disputes, construction disputes - I am not a criminal that needs a brief!). If you have the spare time and cash to gamble on making a point then the legal system has its uses. If you want to improve your financial position so that you can provide better help for your daughter then I would look elsewhere. Spend your time with her, spend your time working, spend your time in campaigning but do not waste your time on a legal system that only serves the lawyers and only consumes time and energy from all involved. The legal system is a very expensive machine which causes more anger and frustration than enything else that I have come across.

The difficulty in getting a diagnosis consumes a lot of time on this discussion forum. Frequently, the doctors have a nigh impossible job of untangling the root causes of the symptoms that present themselves. We, on the spectrum, are singulalrly ill equipped to make the most coherent case in a doctors surgery. Our communication problems present an obstacle in convincing the doctor that we have a problem with our communication skills. This is a classic Catch 22. If we could communicate our problem better then we wouldn't have a problem.

The other issue is that we frequently present with a whole micture of other symptoms. Depression, anxiety, mania, etc etc present a smokescreen through which a doctor has to identify the autism which lurks behind this fog.

For all of these reasons I would say: "make peace with the people that can help your daughter". Engage with them and try and understand how you can help her.

If you think that there is an issue that can be campaigned for then find a local group that wants to make that point. Beware, however the problems of groupthink that will convince each other that the problems are all on the other side.