Here some suggested organisations that offer expert advice on SN.
Stop false accusations of bad parenting(25 Posts)
I had hijacked Rebls post on a false accusation to post this which was rather unfair but felt I would be reaching those most affected by the subject. Apologies Rebl and I am reposting as below.
There seems to be so many people being accused of bad parenting when the professionals should actually be focusing on the child. This mistaken focus is delaying or even preventing the necessary help for the child. I have had the most awful experience of this and my child suffered unnecessary pain although I posted under another name.
I have heard so many accounts on this forum and elsewhere of dreadful experiences with these types of accusations but everyone is fighting their case in isolation. When accusations are dropped I guess many people want to keep a low profile or are left totally worn out. Quite understandably as the fear and lack of trust never goes away. Also it is not something many people want to discuss as most people will think no smoke without fire especially if the children are declared at risk.
I feel passionately that something should be done to publicize and question how common this appears to be coming. I have no knowledge of the system to know if it is really becoming more common or if it has always been the case. Not sure if anyone works in this area? I have no idea if these false accusations are due to poorly trained professionals, over reacting following baby p or if it is due to retaliation for complaints at delays and mistakes in the NHS or a genuine inability to diagnose more complex cases or even to prevent access to funding without a diagnosis. I vowed that when I proved my childs medical misdiagnosis I would try to prevent any false accusations happening to anyone else in future!! I have to see some good come out of it to make some sense of it all and come to terms with it.
Does anyone else feel like this? Could this forum be used to publicize these issues more widely and to fight for a reduction in false accusations. I think because people dont go public there is little awareness of the damaging effect that these false accusations can have on a families life.
Nothing can ever be the same once all trust has been lost in professionals. Parenting styles change due to living in fear that one phone call to social services or one trip to A & E could then result in losing your children as the false accusations remain on file. Medical records appear to be made incredibly difficult to obtain when false accusations have been made even with the involvement of the ICO despite the DPA.
Does any one have any interest in this subject or know of any organisations that would be interested to get involved or are researching this? Is this the best place on this forum to post to try to get views/help? It will obviously not only apply to parents of children with SN but those that are not easy to diagnose appear to be most affected. Is there anywhere else more appropriate for starting a campaign?
All comments welcome
I asked for a carers assement and ended up with a parenting assesment . my DD is apparently faking illness (social workers words ) and isnt disabled , despite having phyisio , being treated by chams , getting dla,spending most of her time at school in a sn class. I now force her to go to school unwell only for her to be sent home again.
ps I have Asd which im sure they love to use against me .
Its not bad parenting we should be complaining about but poor professionals that prefer to take the easy option of blaming the parent rather than getting to the root of the childs [problem.
Theres a lot that a parent can do to avoid being in this situation or extract themselves from it. Ive dealt with some horrendous professionals so have some first hand experience of this. My tips are:
Always check the credentials of any doctor / consultant you are referred to by looking at the GMC Register. You would be amazed at how unqualified some of the doctors you are sent to see actually are. I know of one child sent to a particular doctor for ASD assessment. The doctor turned out to have a specialiam in renal medicine. What on earth qualifies him to make the often very difficult diagnosis of ASD. Nothing. So check you are seeing someone who is qualified to dx / treat your condition.
Paeds are just general practitioners for children. They may know about a range of common childhood illnesses and conditions but have very little specialist knowledge. Always ask for a referral to a psychologist / neurologist / etc. These are the experts.
Dont get strung along turning up for appointment after appointment with no progress being made. Another wheeze is for them to say its too early to dx or #we prefer not to label. Nonsense. Why keep turning up to see the same doctor if its not benefiting your child. You wouldnt take your faulty car to the same garage year after year to be told theyd rather not fix it. Ask for a 2nd opinion from a different doctor its your legal entitlement.
Dont treat the professionals as Gods. If you disagree with them say so. If they are rude report them. They work for you. You dont have to bow and scrape and accept rubbish from them.
Always ask for written reports and to be copied in on all correspondence from the professional to other professionals. Dont wait months / years for a written report. If they wont dx then aks for a working dx or go elsewhere.
Ask for a tertiary assessment if theres no one in the local area prepared or able to dx. If a case is so complex that your consultant doesnt feel competent to dx ask to be sent to an expert who has those skills.
They see your child for a few minutes in an artificial clinical situation. They are not the experts on your child you are. If you are being fobbed off / not believed then ask for a 2nd opinion.
The next ones very contentious. I have refused to allow my son to be treated by a consultant who has not trained in the country. A foreign name or one that looks like someone has leant on the keyboard, is a red flag to me so I look them up on the GMC register to see where and when they qualified.
The reason I do this is that in many countries (even EU countries) understanding of ASD is very rare. In some countries from where these doctors originate the treatment for ASD, if it is recognised at all as a condition, is institutionalisation. I therefore dont consider that a doctor that has trained in such an unenlightened country has the necessary background to treat my son. There are also a whole host of cultural differences that also come into play. I also have grave concerns about mental health experts practicing on the country whose grasp pf English is not native-born. They dont understand the subtleties / colloquialisms / nuances / inflections etc of our language and I consider that is essential for practising in the MH field which is all about talking and making assessments of how and what people say. You can accuse me of being racist but having dealt with a consultant psychiatrist who qualified as a general medic in Pakistan and who did his specialist MH training in Romania during the communist reign of Ceascescu and whose English was so poor that my son couldnt understand a word he was saying to him which led the consultant to mis-dx with serious mental illness, I think I can fully justify my approach and am entitled to refuse such doctors. Im not risking that again.
So, check who you are being sent to, set a timeline for action, ask for a 2nd opinion if youre not making progress and report crappy doctors.
There is a point about checking somebody's qualifications and specialisms: it was only later I realised that the doctor who diagnosed dd's Ehlers Danlos as psychosomatic was, in fact, a specialist in asthma and allergies- so perhaps not in the best position to recognise rare connective tissue disorders.
To campaign needs proof and that means mothers/fathers that are prepared to air their laundry in public in the hope that it will benefit others. At the same time everyone including the people they live by will know their business. I think that is why no shouting has been done about it.
Its bad enough being doubted by a proffessional and have visits to your home, the school made aware and basically all in sundry being talked to about you behind your back and you still have to hold your head high and walk into these places and smile like they smile knowing all the while exactly what they are thinking and that their smile is as false as it comes.
To speak up leaves us vunerable and open to opinion and more judgment. Also should a campaign fail............because it has become public then you have further backlash and judgment.
I think it is far better to have sights like this board where moral support is given and advice on how not to fall into the same traps some of us unfortunately have experienced and to help hold up those that are at crumble point
coff33pot - I totally agree with what you say and can understand why people would not want to go public unless they had actually had their children adopted for fear of retaliation and this actually happening.
I agree the moral support of this board is great when you are in the situation but surely it must be possible to do something to prevent it too? Couldnt we prompt someone to research what is happening and what are the most common mistakes to provide further training?
Does anyone have any thoughts on this or suggestions of anywhere else I could post on MN or elsewhere. I have to see something useful come from my experience to make sense of it all.
Message withdrawn at poster's request.
WetAugust Your post is most useful. These are all little traps that us unsuspecting parents can fall into without even realising before its too late.
Yes Wet August your post was extremely informative thanks
On another note there has been so much backlash to the social services and negligence on their part over the last couple years. Maybe they are pure just over the top and have been told to "grill the family" route first before anything else for fear of messing up again. Not right and not fair in any way shape or form but perhaps they need further training to get to that happy medium and how to recognise genuine signs of requests for help.
I would really like to know how the Law helps us when we are misrepresented or falsely accused. That would be very useful. How to proceed safely without further appearing to social services, CAMHS etc., as guilty or mad. The odds are stacked against us as individuals and no meetings are ever fully minuted or recorded, so any notes/letters that come out of a meeting are entirely from the perspective of the professionals. Why have we always accepted that?
We should really be asking for family leadership and person-centred approaches where parents are invited to lead or co-chair meetings and minutes are taken by an independent person, especially when controversial issues arise.
Social workers have the spectre of Baby P and there are parents who are abusive and parents with personality disorders and Munchausens by proxy etc., who must make them feel that every parents is under suspicion. It is very much 'us and them', but our powerlessness is shocking.
Bakelite - I have been trying to look into the legal route with limited success so far. I have found it unbelievably difficult just to get copies of all medical records which is obviously required before anything further. Every professional has held contentious things back for no legitimate reason and only backtracked when threatened with the ICO.
Should I try posting this on legal section on MN or will I face a barrage of upsetting replies? Or anywhere else??
I think Star's group is going to include collecting personal stories together and having a 'group' effect
I agree as an individual its easy to be picked on but if we can collect these stories and show how it happens up and down the country - I mean its like they give out some secret manual - then perhaps we can start to be heard.
We didn't get the anxious parent argument - we got the 'your using an alternative approach = you are an obstructive parent / damaging your child'
If there is stuff written in your medical notes you do not agree with you can challenge it and ask for it to be removed - usually they won't remove it as they will say that is their professional judgement - but you can ask for a note to be added to the records to say you disagree and why. If they won't do this use the complaint procedure and go to the Ombudsman. They can't make them change the records but they will make sure your 'clarification' is included.
I would imaging parents writing back saying I disagree with your assessment of my parenting, I think you are failing to recognise my child's disability and delaying intervention and that this will harm his prognosis would actually start professionals thinking they might be sued if they get it wrong and might (sometimes at least) make them think again, if only to cover their own arses.
Thanks for all the input.
Agnes - how is star collecting this information then and can I feed into this?
Message withdrawn at poster's request.
It's a trip into an alternate reality of hell that is all too easy to fall victim to.
It's so easy to become the victim of a witch hunt that it really frightens me off ever risking becoming pregnant again in the UK. Until it happens to you it's hard for the general public to understand just how much professional time can be spent on harrassing the innocent parent of a special needs kid who in all probability has made the first approach to services ASKING for help, expecting the "experts" to be the font of wisdom and to be there for the child, not their career, local lea/nhs pct politics, to cover a colleagues error etc.
The ordinary teacher, social worker, peadatrician has virtually NO training in even the "obvious special needs" such as deafness, spina bifida etc and how it can affect a child's behavior and development, let alone the child schizophrenic, asd, apd, adhd or rare chromosomal sufferers. I use the word sufferer as our kids do indeed suffer at the hands of illinformed "experts" whom society has placed on a pedastal beyond their capabilities. It's scary how few of the issues some of our children face are really understood by those we entrust to help them.
Hopefully Star's campaign will help sweep away some of the all pervasive arrogance within children's services and remind them once more that 99.9 % of parents WANT and NEED the very best they can achieve of everything for their kids. Parents like baby P's mother are the very rare exception and should not be treated as the "rule" until years of damage have been done to a child's family life (do remember the authorities prevented that poor child's loving father and maternal grandmother from being able to remove the child from harm and care for the child themselves - a travesty of justice that has never been explained to the public to this day!).
These people need to be reminded they are there to support tax paying parents and that it is OK to utter the word's "I'm not sure - I'll have to look that up".
If you PM Starchart and ask to be included in her campaign group
I admit after the orginal problems had with the disablity team and ds has dx of Pd .I have kept my head down and now take advocate to any meetings.
but yes I find it very uncomforatble and am uncomfortable about something minor that in any of my other kids i would not even worry about .
Ds has been dx with a very rare form of EDS and when i mentioned at meeting i was told by sw well you do not need todo anything more about it .
and am nervours as turns out that the proffesional who dx it has refered him to loads of othe rproffesionals as there are quite serious implications and so know sw will not be happy .I did not even know he had been refered just all appointments turned up
We have small number of really interested (and angry) people that want to do something and we will. The attempt to get a face-to-face session has proved difficult however, and then many had a tribunal to deal with, and now it is the holidays etc. so we are looking at half way into september when our children are settled into whatever education system, and we'll aim to have clear aims and outcomes of a group by the end of the year, if that is okay?
social servises have cleared me and declared me a good parent in 2 visits , but will they give us respite will they bollocks !!
In contrast i have had a diagnosis for my ds for aspergers.I am pleased as he will get some help (I hope) at secondary school.His primary school are in denial and urge me to get a second opinion(apparantly he's not sat under the desk chewing rubbers so why am i worried?!)
It has taken me several years to get to this stage - I have had to push and question myself/situation and parenting - but - i did wonder about the consultation process.
I thought it very contrived and I wondered why the consutant shut all the windows on such a hot day - then i noticed him asking me to repeat my answers -he couldn't hear me - when he came to my ds he clearly missed most of what he said.
I thought he was going to say I was mad and my ds was fine but he pronounced - yes aspergers - not barn door but his speech is pedantic and monotone - I was then a bit hurt as they seemed to be laughing and joking - then I noticed the consultant was wearing a hearing aid.
I am dubious about his assessment - it was mostly based on my subjective answers - since then and reading TonyAttwood I can see my ds has problems - but I'm not convinced a hard of hearing elderly consultant could spot them in half an hour.
Wetaugust, has some good points, the going from one Paed to another for years is exactly what happened to us. Most paed's are nothing more than children GP's. This is where all the 'bad parenting' comes from. Others look at this and think you been to see various paed's and still no dx, must be bad parenting. I eventually made an official compliant which intially made the allegations worse, as if i was pushing to label a child who had nothing wrong with him.
I was referred to CAMHS, although this was suppsed to be for ds, i am not an idiot and could tell by the questioning i was there to assess my parenting skills.
I applied for a Statement pre-dx and the LA even 'referred' us to SS. I suspect once the SS are involved, getting a dx would be almost impossible.
Although no 'official' alleagations were made, i could see where this was heading.
The sad thing is that most parents starting on the road to dx, dont know the first thing about it and the very people you expect to guide you, are often the people making allegations, because they do not know the first thing about it either.
The minute i was refered to a Paed who specialised in ASD, he could tell after our first appointment, that ds had autism and had a dx within 6 months. It took us 5 years.
You're right, this fear does affect parenting.
My son has a very swollen and bruised arm from trapping it in the door.
I was in a very bad way because I wanted to take him to A+E for an X-RAY, but because we're already being investigated by social services, because one professional decided my son's 'anger' could be the result of domestic abuse.
I was far too terrified to take him to the hospital incase social services went 'ah hah' and decided to use that to support their imaginative theories.
I had people close to us look at his arm, and the general consensus is that it's not broken, and it's recovering well. He hasn't complained that it hurts.
I then did not take him to nursery for a schedules afternoon because of the fear of his injury being reported back as suspicious, so he missed out that afternoon on nursery
But we're doing lots of activities anyway.
I hate social services with probably all the hate I have in me.
And that's due to knowing what they're capable of.
Obviously, my family and the consultant whose diagnosing my child all know that DS's 'anger' is the result of people getting in his face trying to talk to him when he's suffering from autism, and his reactions are completely normal for someone with his mental disability.
Social services are still on the 'could just be bad parenting' mission though.
They don't know ANYTHING about it, you'd think they might get some training
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