Friday 25 October 2013

Ehlers Danlos Syndrome & Child Protection

Ehlers-Danlos Syndrome & Child Protection Concerns

Jan Loxley Blount TCert., Dip Child Development
 for Parents Protecting Children UK, October 2013

“Once the label of child abuse has been attached to a parent it is extremely difficult to remove. Yet we know that there are many hard to diagnose conditions that have been mistaken for parental maltreatment with devastating consequences for families.” Earl Frederick Howe to House of Lords 12.02.03

Ehlers-Danlos Support UK and Parents Protecting Children UK are amongst those groups who have recently come to realise that there are a number, as yet unquantifiable, of Ehlers-Danlos Syndrome families who appear to be inappropriately caught up in the Child Protection and Family Court System.

Ehlers-Danlos Syndrome is genetic, heritable and familial. Someone with Ehlers-Danlos Syndrome may be caring for another or others within the same family also affected by EDS, although the type, severity and symptoms can differ. It may be that diagnosis of one family member may throw light on unexplained symptoms, which have been missed in their close relatives.

There appears to be an unproven link or crossover between Ehlers-Danlos Syndrome and some Autism Spectrum Difficulties & Differences, although this has not yet been adequately explored. Many spectrum children appear to demonstrate the kind of hypersensitivities and hypermobility, which may be indicative of Ehlers-Danlos Syndrome. Social Workers have been known to comment on the untidiness of the home of a spectrum family, in some cases this could be because parents are struggling with fatigue derived from undiagnosed Ehlers-Danlos Syndrome. Some Ehlers-Danlos Syndrome families appear to over-react or react aggressively to suggestions that there might be child protection concerns; this reaction may be through sheer terror, which is often exaggerated in spectrum families or individuals. There is none so dangerous as the tigress defending her cubs from perceived danger. If a mother, especially a spectrum mother, fears the loss of her children to Social Services, her reactions may be regarded as excessive or inappropriate by those who seek to judge her.

It is becoming apparent that some cases previously diagnosed as ME / CFS may be symptoms of chronic fatigue caused by Dysautonomia and Postural Orthostatic Tachycardia Syndrome, resulting from undiagnosed Ehlers-Danlos Syndrome. Some of the Fibromyalgia symptoms experienced by many ME / CFS sufferers could be symptomatic of Ehlers-Danlos Syndrome. It is possible, but unproven, that the longstanding argument within the ME / CFS community about the benefits or harm of graded exercise, could be that those with ME / CFS type symptoms caused by Ehlers-Danlos Syndrome & Postural Orthostatic Tachycardia Syndrome improve through graded exercise, which develops muscle power to compensate for defective collagen and thereby improves cardiovascular function; whereas those with actual Myalgic Encephalomyelitis may not benefit from and could be harmed by inappropriate exercise. It seems important to us that GPs are alerted to simple protocols for testing all patients presenting with chronic fatigue symptoms for positional blood pressure differences (which may indicate Postural Orthostatic Tachycardia Syndrome) and for checking joint hypermobility on the Beighton Score.

Some infants and small children suffer spiral and other fractures and joint dislocations which at first glance may appear to be caused by rough handling, but on more detailed consideration of context and symptoms may indicate Ehlers-Danlos Syndrome.

There is a recent complex judgement by the Honourable Mr Justice Baker, February 2013, which involves an Ehlers-Danlos Syndrome family. Mr Justice Baker highlights the need for medical and legal expertise that should not be rushed. He suggests that it is very difficult for the judiciary if cases of this complexity are brought by litigants in person.
Devon County Council v EB & Ors (Minors) [2013] EWHC 968 (Fam)

EDS UK & PPC.UK are currently seeking information about other such cases and will be pleased to hear from anyone who can help us. Rachel Carter, Associate Solicitor at Wollen Michelmore Solicitors appears to have some knowledge of this area. We are not suggesting that she is the best or the only solicitor working in this area, however we are naming her because she is the only one who has made herself known to us at this time and because Wollen Michelmore were the instructing solicitors for the parents in the case before Mr Justice Baker cited above.

This is an initial tentative and exploratory document, written because of a rising level of concern.  There is much to be explored, some already begun, some much needed and hoped for. Ehlers-Danlos Support UK & Parents Protecting Children UK are committed to further investigation and will comment in more detail when we have more knowledge and information.

EDS UK has a survey document that we are using to gather information about child protection interventions in families with Ehlers-Danlos Syndrome. We invite Ehlers-Danlos Syndrome families to complete this. LINK TO REGISTER DETAILS

The views expressed in this document are those of the writer,
Jan Loxley Blount, T Cert., Dip Child Development.
(C) Jan Loxley Blount, London. 24.10.2013

Ehlers-Danlos Support UK
EDS UK was set up in 1987 to support, advise and inform those living with Ehlers-Danlos Syndrome.
EDS is a collection of inherited conditions that fit into a larger group known as heritable disorders of connective tissue. Connective tissues provide support in skin, tendons, ligaments and bones.
Connective tissue covers over 95% of your body so there is little that escapes the symptoms.

Parents Protecting Children UK
Parents Protecting Children UK was formed in October 2001 at the time of the House of Lords Debate on False Accusations of Child Abuse, PPC.UK aims to support families with illness, disability, mental health concerns and learning difficulties, who need additional education or healthcare resources
and/or who find themselves caught up in the child protection and family court system.

Thursday 24 October 2013

Ehlers Danlos Syndrome & Child Protection Concerns

Article currently being medically verified and will be available shortly.

Wednesday 16 October 2013

Hunger strike by father who lost his kids to Social Services.

Re: Hunger Strike by Father who lost his kids.

This is what I've just put on Parents Protecting Children UK 

This is a personal comment from Jan Loxley Blount about the reported hunger strike of David Paul Jenkins in Swansea jail. 

I don't think & have never thought, that breaking the law is the way to make our point and get changes to law and practice to stop social services intruding on and breaking up the wrong families. I've never supported action such as blockading the M25. 

However I do understand that when people have lost or face loosing their children they feel entirely desperate. To loose a child to adoption, when you know in your heart that the authorities have got it wrong, must be every bit as devastating as Kate & Gerry McCann losing Madeleine. 

I gather from others that David Paul Jenkins of Stolen Children of the UK is on hunger strike in Swansea jail. 

I don't know the ins and outs or the background to this, but I know he feels that his children should not have been taken from his family and that everything he does is motivated by his desire to get them back, or at least to expose the situation which his family was placed in. 

Social Services should be made to deal properly with the families with which they get involved. They should get their facts straight before they intervene. Unless there is immediate danger, they should not take a child until they have explored absolutely every diagnosis and reason for family difficulties and considered and tried every possible way of keeping the family together. If it is genuinely justifiable and unavoidable to remove a child they should continue to support the birth parents in their grief and anger. 

I don't know why David's children were taken, or why he is in prison, or why he decided that a hunger strike was his best or only option. I do hope that the situation can be resolved without further harm to him and his family. I do hope that any publicity surrounding this will be helpful to his family and to other families who beleive that their children have been stolen without just cause.