What if doctors don’t believe my child is really ill?

This is an issue that has provoked a lot of debate and comment; parents are concerned that they are being accused of hurting their children when in fact their children have serious medical conditions. Some parents feel that if they try to bring these conditions to their doctors’ attention, they run the risk they will be accused of ‘fabricating illness’. 

We agree this area needs debate. Here is a piece from a parent who has been involved in this scenario. We would welcome any other contributions from people with knowledge of these issues.

You may also find this post useful – the social worker tells me my child has been hurt.

 

A medical condition – or a non accidential injury?

I have a concern around the subject of rare genetic connective tissue disorders such as Ehlers Danlos Syndrome and the high levels of non accident injury and Fabricated or Induced Illness (FII) accusations made against parents with children of this condition. A ruling was made last year and published in Family law week I believe, regarding non accidental injury and EDS.

Having spoken in large group settings organised at the Ehlers Danlos Support UK conferences, there seems to be a large number of Mothers who also have the same condition of FII. The numbers of parents reported to social services, that have gone on to be seen one particular doctor are out of proportion for one small group of the population, the last quote was 50-60%. I can provide contact details for this doctor if you want to verify the information. There is I gather debate if FII even exists, or if the symptoms are of a personality disorder. I am sure that there will be in the EDS community the same levels of FII/personality disorders as there is in the rest of the population.

 

So why do I think there are so many reports of this by professionals to social services?

Well there is a high proportion of Autistic diagnosis in the community apparently.

There have also been brain scans showing that the Amygdala works differently in hypermobile people, where as someone with antisocial personality disorder would have not much going on we seem to have far too much going on here.

We have issues with pain, and Anesthetic not working.

There is still so much to be found out, there is some interesting work done by Dr Driscoll. She has theories about mast cells and pressure levels in the brains of EDS people.

The parents will have not had their medical needs met and once they understand what has happened they will be keen for the children not to suffer also as they have. When you discover the complexity of what has been going on in your bodies and written off for so long, you go through all the stages of grief for yourself and for your children.

There are often undiagnosed secondary issues, for example it was only in November 2013 there was a proven link between sleep apnoea and EDS. There are complex GI issues and Neurological /cardiac issues from our autonomic system not functioning properly. These will interfere with the cognative ability of the parents and children. They will make them appear to have a primary mental health issue which is a secondary mental health condition, heal the physical cause and they will not have anxiety and depression. We look like there is nothing wrong with us, we don’t complain and we get on with things.

We are not helped by the fact there are two names for what is through to be the same condition, some doctors seem to have different ideas and the two charities not working together.

Right now I understand the department of Health, NHS national genetic EDS clinic think EDS and HMS (Hypermobility Syndrome) are to be treated as the same condition along with EDSUK, yet some other high profile NHS hospitals along with HMSA have other ideas.

Here are some links

http://www.hypermobility.org
www.ehlers-danlos.org

You can also visit the author’s Facebook page for more information about EDS and hyper mobility.

Case Law

We think these cases will be of interest

The case of Devon County Council v EB in 2013 where the Judge rejected the LA case that the parents were responsible for inflicting non accidental injuries – the mother had Ehlers Danlos syndrome and the father joint hyper mobility.

But see also Re J & R, decided shortly after Devon County Council v EB where the parents were not successful on similar arguments – the Judge stressed the importance of taking into account ALL the evidence and was not so impressed by the parents’ evidence in this case.

In Re B 2014 the parents were reunited with their child after the court found that he probably had EDS Type III which would have made him more vulnerable to subdural bleeding.

 

Further reading

You may find interesting this article from Gene Reviews about diagnosing Ehlers-Danlos syndrome. Also this article from PubMed about sleep disordered breathing for those with the syndrome.

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