Ehlers Danlos Syndrome is a connective tissue disorder, in extreme cases it can affect the vascular system (vascular EDS). EDS is a genetic condition that often runs in families and there remains no cure, only symptom management. EDS in children can lead to false allegations of Non Accidental Injury (NAI) due to high incidence of fractures and bruising (particularly in non mobile infants). EDS also attracts false allegations of Fabricated and Induced Illness (FII) due to it being an "invisible illness" this is particularly perplexing in those who have proof of EDS through genetic testing.
I recently did a survey on Barriers to education in children with EDS which showed massive failings in the education system, children being failed and families being attacked with false allegations of fii. In response to feedback i compiled this follow up survey on barriers to accessing NHS healthcare for children with EDS and received 170 responses. This is, as usual, a self selecting survey, shared around social media in EDS groups and general SEND groups.
Does your child have a diagnosis? 168 respondents, 57.1% EDS, 18.5% Hypermobility syndrome 10.1% hypermobility 14.3% no official diagnosis
Have you been discouraged from seeking an EDS diagnosis because the health care professional said they didn't want to give your child a label (or more labels)? 79.2% yes 20.8% no
The idea that a diagnosis is bad because it "labels" someone is an outdated an ableist concept. Some people may react badly to disabled child and make certain assumptions about them, this is no reason not to seek appropriate diagnosis and management. The point of appropriate diagnosis is to ensure that a child's needs are fully met and so they can access management of their condition. EDS causes pain and fatigue alongside many other symptoms, it is a chronic condition with significant impact on the individual and therefor protected by the disability act. The fact that the vast majority of health care professionals do not want to appropriately diagnose to avoid "labels" speaks volumes about the ableist mismanagement of EDS within the NHS.
Have you been refused a referral for EDS? 125 responses. 45.6% Paediatrician refused to refer to specialist. 10.4% GP refused to refer to paediatrician 11.2% Refused 2nd opinion 3.2% No not refused referral 29.6% other refusal to diagnose
With adjustment for those who did not respond (45 non response)
29.8% Paediatrician refused to refer to specialist
7.64% GP refused to refer to paediatrician
8.23% Refused 2nd opinion
2.35% Not refused
26.47% No response
The fact that only 2.35% of respondents said that they were not refused a referral to look into EDS is shocking, when compared with the first chart that shows 85.7% of respondents children have an official diagnosis. That is a massive amount of children with EDS being refused diagnosis and usually having to go private for a proper diagnosis.
Have you ever been told by a NHS health care professional that they don't believe in EDS? 75% yes 25% no
As I said at the beginning, EDS is a genetic disorder that can be diagnosed via blood tests, yet a whopping 75% of families have been told by a health care professional that they don't believe in EDS. This somewhat explains why such a large percentage find it so difficult to get a diagnosis.
Have you ever been told that "all kids are bendy" or similar when rising concerns? 88.8% yes 11.2% No.
Has your paediatrician or specialist been helpful in liaising/writing to school? 26.3% yes 73.7% no
Maybe we would have seen better outcomes in the survey asking about children with EDS experience in education if EDS was accepted, appropriately diagnosed and supported by health care professionals in the NHS? This chart shows that the majority of families did not feel that health care was helpful in liaising with education to ensure the best outcomes for children.
Have you been referred to social services for concerns of fabricated or induced illness/Munchhausen's by proxy, due to your belief they have EDS? 27.1% yes 72.9% no
Remembering that FII is a one in a million mental health condition which leads to child abuse, it is of course very worrying, but not surprising that more than a quarter of families who responded have been accused of FII. In combination with health care professionals declaring that they don't believe in EDS and refusing to refer appropriately, it leaves parents in the horrible position of having to pay for private diagnosis to help clear their name. With the unscientific epidemic of false FII accusations, even a genetic result confirming EDS does not always clear you of FII. Many families found themselves still accused after proving beyond doubt that their children do have EDS.
Have you ever been investigated by police and social services for unexplained bruising? 88.8% no 11.2% yes
EDS causes unusual bruising and fractures that may indicate child abuse in a child who does not have EDS. Due to the attitude of health care professionals and educational professionals, many families of children with EDS are accused of physical abuse where appropriate diagnosis and support could of prevented such upsetting and damaging procedures.
When managing EDS, of those surveyed 8 families (4.7%) reported medication and physio being used together. 52 families (30.5%) reported physio only and 57 families (33.5%) reported pain relief only. That leaves 31.3% of children having neither physio nor pain relief.
Such poor management impacts on every aspect of a child's life including their education, these children and families are being failed by the NHS, left without pain relief, physiotherapy, appropriate diagnosis and exposed to inappropriate child protection proceedings and investigation which causes massive stress to everyone in the family. Its time the NHS and those who work within in it acknowledge that sometimes when you hear hoof beats, it is a zebra and rare doesn't mean that they will never come across it in their practice.