Why are so many Mothers of children with invisable medical conditions getting accused of Munchausens by Proxy/FII?

[BuildUpMyFence]

www.dailymail.co.uk/news/article-2554867/The-schools-spy-Munchausen-Mums-Teachers-accuse-lying-childrens-autism-attention.html

What is going on in child protection training that so many Professionals are so obsessed with this type of witch hunt?

[BuildUpMyFence]

EDSUK have the new nhs info on their site, have a look at that. you can request the dr of your choice now, so ask for your ds to see Dr Rawatt for the GI issues.

[CouthyMow]

I'm not the only parent on here that has had these accusations. There are others on the SN boards here who have also had the accusations of FII from SS, usually when fighting for additional education help or better therapies on the NHS.

The most frequent conditions that DC's have where their parents are accused of FII are Autism, EDS (which often go hand in hand) and multiple food allergies. If you have these issues, your DC's often need quite expensive, multi disciplinary input that often isn't easily forthcoming and has to be fought tooth and nail for...

But PLEASE, don't go to JH - he's a fucking crackpot who will only harm what you are trying to achieve.

[BuildUpMyFence]

No I am not going to him a few of us did ages he did nothing anyway. He sounds to me like someone who was very hurt by ss personally, and has lost sight of the bigger picture.

Maybe the SN parents can post on the link someone else put on this thread.

[BuildUpMyFence]

I also think to be fair to the medical profession here, they simply have no idea the full extend that EDS is involved, they also get taught in medical school to not look for rare conditions.

Then to be fair to social services they are going on what the Dr's are telling them.

The schools are going on what the CP trainer is telling them.

Each agency is relying on the other to know what they are talking about and to information share properly, if that goes wrong then as has been said by someone earlier in the thread you get Sally Clarke/Angela Cannings situations, look at how traumatised that family were from false allegations in the paper last week, it wrecks lives.

[BuildUpMyFence]

You know that was a recommendation from a Dr that support be put in place for me to help me care for my children's needs, nothing was ever done.

[CouthyMow]

Silly - every time I back down on trying to get the better, more expensive therapies, after SS have accused me of FII, they suddenly decide that they can close the case (usually within a WEEK of me withdrawing a complaint, or agreeing to back down), as I'm a 'good parent'...

Until the next time I try to get a better, more expensive therapy the next time, when I again get accused of FII...

And it seems to be a popular phenomenon in my local area, among the SN parents I encounter (which is quite a lot, given I have DC's with SN's whose ages range from 3yo-15yo, and you chat a lot to people whilst waiting for appointments, and make friends that way...) who I would say at least 75% have had at least one accusation of FII in their time of parenting a DC with SN's, and usually in the circumstances I've already outlined.

I highly doubt that 75% of parents with DC's with SN's have FII / Munchausen's...

[BeyondTheLimitsOfAcceptability]

Can't comment in the article, do my best not to go on the dm site. Bit re the discussion here...

I'm a little involved with the Child protection resource website, also a mumsnetter, AND I have "hms" (on a side note, very happy happy is probably the wrong word, but hope you know what I mean! to find someone else who fits with their pots!!) though I've not been around much in the last month as I've had uni work due.

I don't know the details of any cases, but I can see why a child would be removed due to undiagnosed eds. But the problem isnt with the social workers, it is with the lack of diagnosis of eds, and (personal experience) the blasé attitude of hcps about it.

I had to explain to my (brilliant in other areas) gp what hms was, and why i thought it may actually be what was causing my undiagnosed-for-15-years fainting/fitting. (Still not officially diagnosed with pots, though I am now on the waiting list again to see someone) Luckily for me, I am a medical-science-area student and could explain it properly. My rheumy (I also have psoriatic arthritis so another bit of luck there - most people diagnosed with hms dont get referred on that basis alone) said my hms was not a concern, my arthritis is the bit to focus on. It was only when the arthritis-related xrays of my back were fine that she agreed the pain could be caused by my hms, when I asked. And this is all before we even get onto the "is it eds" side!

My personal 2p worth. I do not think eds is as rare a condition as it is supposed to be. Of course the worst, potentially fatal, variants are, but i think, based on my incredibly non scientific study of seeing how flexible friends are that eds hm type is massively under-diagnosed.

[scaevola]

Some of the link are broken, but EDS UK have been discovering this, as from their POV far too many parents of children with diagnosed EDS are being accused of FII.

[CFSKate]

It sometimes happens with ME/Chronic Fatigue Syndrome. This is from an interview with Dr. Nigel Speight.

[[http://cfstreatment.blogspot.co.uk/2014/01/cruelty-revenge-and-sadism-how-medical_12.html "I think it is easy to blame the social workers because when they come in what they do seems to be so cruel but I think we actually have to blame the medical profession first. It is the medical profession’s duty to be able to make a confident clear diagnosis of ME/cfs. And if they do that, this should be protection. But many of the cases I have seen have not even be diagnosed and then care proceedings are started by the education authorities for non-school attendance.

So doctors have to get it right to start with. The social workers will only get it wrong if the doctors don’t protect the child with a diagnosis. I should say, I have seen a lot of real abuse in my life, and I have been involved in protecting a lot of severely abused children. And to now being on the other side and to see innocent families being persecuted by the social workers who should be protecting other children is remarkable."]]

[Spero]

Hello, I am also involved in the Child. Protection resource site and I would like to get something posted about this as it does seem to be an issue causing a lot of concern for various people who have contacted the site and via twitter.

Is everyone ok with me cutting and pasting things from their contributions here? Or would anyone like to contribute a short piece? As ever, I think the issue is raising awareness of issues so that the parent/social worker relationship isn't undermined by lack of trust and understanding.

[llwynogbach]

Just adding my thoughts as a victim of msbp, it's awful that ss throw the term around so much now, in my case(late 80's early 90's) they didn't have a clue what was going on and let my mum carry on with years of abuse to the extent that one of my sister's died and the other yrs later following the same pattern was critically ill. Msbp is a serious thing, these days I'm sure that we would have been rescued sooner. However like I said it's not a term for the authorities to leap on when they're being lazy or uunnecessarily suspicious which harms the lives of parents and children, on the other hand we
don't want to go back to a time when it was all swept under the carpet when children did need help because they did know the answers. Difficult and controversial subject area!

[Spero]

In think it is important to try to deal with the fear and distrust because the bottom line is we ALL want the same thing - children to grow up safe and happy, with their families wherever possible.

Anyone who wants to contribute, it would be good to hear from you. We are not peddling any agenda but we are wary of assertions made about widespread corruption etc unless you can offer some reasonable evidence.

[Spero]

I would hope we will also attract some medical input - we have been publicised on a doctors discussion forum so if I can post something about this, it may get their attention and we could possibly start a real debate/discussion, which would be great.

[BuildUpMyFence]

CFSKate, do you realise that they think CFS/Fibro/ME Medically undiagnosed symptoms/ MUS can often be a case of incorrectly diagnosed EDS/PoTS/GI etc?

Beyond, I was going to link, I need to find it, to Professor who working from Rheumatology figures thinks there could be 6 in 100 of the population with EDS, heavily underdiagnosed then from 1 in 5000 who get the diagnosis, yes? I was told by experts that the condition is on a spectrum, so some affected worse than others in the various area's EDS affects.

[BuildUpMyFence]

Copy and paste my posts please.

If you want me to provide Dr's details you can contact, please pm me and I will tell you who to get in touch with.

As I said I am not sure if EDSUK are linked up with the right CP woman as I say from the experience I have been told about from people who have had contact with her, she is not all she seems. The solicitor though I gather is legitimate.

Personally I think the problem lies with Professionals not following guidelines and the type of child protection training they are having.

[BuildUpMyFence]

As for the Dr's I get the impression they can't keep up with medical advances and have no idea these things are linked. Once again in training they are told to look for horses not zebra's, they will know what that means.

[Spero]

Thanks Buildup, I think we have got the basis here for a very informative and hopefully very helpful piece. I will let you know when it's up, I am. It in court on Monday so hopefully soon. Please check it once it's posted and let us know what we need to add/change - this is NOT my field so I don't want to get anything wrong. It's a good learning experience for me too, in case I ever have a client dealing with this.

[CFSKate]

BuildUpMyFence - I saw this quote from the last ME conference It’s well known, said Bansal, that certain predisposing factors are associated with CFS, and people with these kinds of immune and autoimmune conditions (such as EDS) have a very high incidence of CFS

Hypermobility and POTS are listed in the Canadian ME Guidelines people with ME would like these guidelines to be used here.


Spero - if you wanted to contact Dr Nigel Speight you could probably do so through someone at Voices from the Shadows website.

[BuildUpMyFence]

The Professor also feels that whilst the beighton score is helpful, it is too heavily relied on, as there is hypermobility outside the scale and that is being ignored. They are trying to get out five questions now to work alongside the beighton scale.

I think if I remember correctly they have added questions about shoulders (not included in beighton scale), again this is not being trickled down.

There is also an issue with regards to Medic's understanding what stretchy skin is and how to check for it. It is not just skin that pulls away loads it does come away loads for some and with others it doesn't it does however pull from far too far away a distance, it is the way it pulls away from the skin that makes it stretchy.

There is a fantastic video demonstrating stretchy skin this Professor has. If the skin is pinched and lifted mid back of the hand and someone is wearing a bracelet, the bracelet will move if the skin is stretchy, it won't move if the skin is not stretchy. The skin has to be pinched and lifted in a certain way also.

There is another test with a bent elbow, pulling the skin on the elbow.

[BuildUpMyFence]

MrsD, the thing is if the Professionals followed the GOVERNMENT guidelines then these things would not happen. They should always get a paediatrician to give the child a top to toe examination and exclude all physical conditions in the child in the first instance before looking at FII. This does not happen, WHY?????? they jump straight to FII, why????

[BuildUpMyFence]

The other issue is why are psychologists taking on work in FII when they have no medical training and why are they being asked to write reports on it? This work should only be allowed by psychiatrists in my opinion.