Tag Archives: doctors

Ehlers Danlos Syndrome

You may be interested in our post here about the issues around certain genetic conditions and accusations of non accidental injury or Fabricated or Induced Illness (FII).

Meeting at the Houses of Parliament

Justice For Families in collaboration with EDS UK is holding a Family Law Meeting in the Houses of Parliament on 24th June 2014, as a response to all the allegations of child abuse and FII reported in the EDS community.

Mr John Hemming MP and Lara Bloom, Chief Operations Officer for EDS UK, will host a gathering of professional minds to discuss Ehlers within Family Law and NAI’s.

The confirmed speakers so far are:

Professor Rodney Grahame

Professor of Clinical Rheumatology – Senior Consultant in Clinical Genetics – Extensive experience in complex cases involving allegations of serious non accidental injuries especially those concerning scientific or medical issues.


Dr Anand Saggar

Senior Consultant in Clinical genetics.


Paul Storey QC and Alexa Storey

Barristers with extensive experience in complex cases involving allegations of serious NAI.


Time and place

The event will take place on June 24th from 6.30 – 9.30 at the MacMillan Room at Portcullis House SW1A.

If you would like to go, please email Jacque Courtnage at [email protected]

as attendance is by invitation only.


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.

Medical Doctors – Basic principles of child protection and reviews of evidence

The British Medical Association Child Protection Tool Kit.

The British Medical Association (BMA) have an excellent resource called the Child Protection Toolkit which distills essential principles of child protection practice for doctors. This is now hosted on on Paediatric Care Online – an online decision support tool for all frontline practitioners in contact with infants, children and young people.

The BMA set out the basic Principles on ‘card 2’

Basic Principles of Child Protection for Doctors

  • In child protection cases, a doctor’s primary responsibility is to the well being of the child or children concerned. Where a child is at risk of serious harm, the interests of the child override those of parents or carers. Never delay taking emergency action (card 7).
  • All doctors working with children, parents and other adults in contact with children should be able to recognise, and know how to act upon, signs that a child may be at risk of abuse or neglect, both in a home environment and in residential and other institutions (cards 5 and 6).
  • Any doctor seeing a child who raises concerns must ensure follow-on care. In particular, children must not be discharged from hospital without a full examination (cards 13 and 14).
  • Efforts should be made to include children and young people in decisions which closely affect them. The views and wishes of children should therefore be listened to and respected according to their competence and the level of their understanding. In some cases translation services suitable for young people may be needed (card 8).
  • Wherever possible, the involvement and support of those who have parental responsibility for, or regular care of, a child should be encouraged, in so far as this is in keeping with promoting the best interests of the child or children concerned. Older children and young people may have their own views about parental involvement (card 11).
  • When concerns about deliberate harm to children or young people have been raised, doctors must keep clear, accurate, comprehensive and contemporaneous notes. This must include a future care plan and identify the individual with lead responsibility (card 12).
  • All doctors working with children, parents and other adults in contact with children must be familiar with relevant local child protection procedures, and must know how to deal promptly and professionally with any child protection concerns raised during their practice (card 7).
  • All doctors working directly with children should ensure that safeguarding and promoting their welfare forms an integral part of all stages of the care they offer. Where doctors have patients who are parents or carers, they must also consider the potential impact of health conditions in those adults on the children in their care (card 7).
  • Wherever a doctor sees a child who may be at risk, he or she must ensure that systems are in place to ensure follow-up care (cards 1 and 3).
  • As full a picture as possible of the circumstances of a child at risk must be drawn up (cards 13 and 14)
  • Where a child presents at hospital, inquiries must be made about any previous admissions (cards 14 and 15).
  • Where a child is admitted to hospital, a named consultant must be given overall responsibility for the child protection aspects of the case (cards 14 and 15).
  • Any child admitted to hospital about whom there are concerns about deliberate harm must receive a thorough examination within 24 hours unless it would compromise the child’s care or wellbeing (cards 14 and 15).
  • Where a child at risk is to be discharged from hospital, a documented plan for the future care of the child must be drawn up (cards 14 and 15).
  • A child at risk must not be discharged from hospital without being registered at an identified GP (cards 14 and 15).
  • All professionals must be clear about their own responsibilities, and which professional has overall responsibility for the child- protection aspects of a child’s care.

Key advice: Royal College of General Practitioners; Safeguarding Children and Young People

Key review findings from systematic reviews

These inform clinical best practice in the Child Protection Companion. All reviews can be downloaded from the Royal College of Paediatrics. As of 2018, 7new studies have been included in this update. Two studies reported on fractures indicative of abuse, two studies described the evidence for radiological dating of fractures in children and three studies discussed which radiological investigations should be performed to identify fractures in suspected child abuse.

Further reading

  • There is also this useful article from the Patient.co.uk site about how doctors can recognise and report child abuse.
  • See also the guidance from the GMC ‘Protecting children and young people: the responsibilities of all doctors’