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


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.

6 thoughts on “What if doctors don’t believe my child is really ill?

  1. Paula Frisby

    Our world has been ripped apart with NAI allegations. My granddaughter is currently living with us and a hearing is due in June. Her grandfather and myself wanted to seek a private consultation with a Paediatric Neurosurgeon who specialises in Vascual disorders but the local authority have forbid this. Our granddaughter suffered another bleed recently and no one can tell us if its a new bleed, or why after 3 months her brain is still bleeding. We are disgusted with the legal system in this country and feel so shell shocked with the whole process. We are loving grandparents and our granddaughters wellbeing is paramount but our hands are tied and our mouths are gagged in this heart breaking situation. The whole process for NAI allegations needs over hauling . I accept that people do harm children and this is a controversial subject but when doctors try to speak out and are penalised, something is seriously wrong.

  2. Harley lee

    Hi Sarah, please could you get in contact with the physicians name. Being subjected to an assessment, and have deep concerns, as an eds parent who is also autistic.

    No one read any of my evidence or gave me a copy of the evidence against me at all. Really very upset with it all. Heart broken as mostly, I feel my communication Barrera have lead to miscommunication mainly with physicians, and my thirst for knowledge about my own conditions, subsequently the ones the children have inherited, have left me with knowledge about them which have left a sour taste when I express this. In retrospect I should not have expressed this in appointments, but was not to know, and was just trying to ensure they got the correct care, and it’s led to a mess.

    Now I’m in a mess.

    1. Sarah Phillimore Post author

      I am not surprised you are upset if do not know what the evidence was against you. You ought to have all of that information. I am sorry but I can’t be of ay help and I can’t contact people involved in your case. But you absolutely are entitled to relevant information about you or your children. Did you have a lawyer? Can you talk to him/her? Or the social worker?

  3. Nicola Adolphe

    Hi there, I have just come cross your website. I am a student studying MA Bioethics and Medical Law. I have had personal experience of the issues with family law and medical treatment. I am currently doing a dissertation on this and have put a call on Facebook for volunteers to share their stories. I believe I have enough respondents, but if some drop out then I might need a few more volunteers, and people on here might be interested in contributing their case? You also have several professionals comment here, and I wonder if they would be interested in commenting? Excellent resources here. I will continue to follow the links!

    1. Sarah Phillimore Post author

      Thanks Nicola – I have people’s email addresses so I am happy to contact them to see if they want to speak to you – please email [email protected] if you would like me to do this. Will be interesting to read your dissertation!

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