RARE DISEASES DAY 28 February

Today 28 February is RARE DISEASES DAY - in the couple of hours remaining and over the next few days - please spare a thought for the countless families who know that everything isn’t as it should be with the health or development of a child or siblings or a parent or parent and children - but they are fobbed off by supposed professionals with meaningless reassurances - and when they fight for proper diagnosis or services or SEN support in school they are accused of causing or imagining or fabricating the difficulties. 

This practice is becoming more and more common. Instead of getting vital referrals or support, vast numbers are dragged into erroneous and damaging child protection procedures and investigations. 

There was no money to sanction a referral for hospital investigations or for a laptop with special software or for a high tech wheelchair or for a part time classroom support worker or for a place in a specialist school or unit - but suddenly there’s endless money for solicitors and barristers and expert witnesses and court process and foster care placements. 

Families are being temporarily or permanently separated on the flimsiest of untested evidence which wouldn’t stand up to scrutiny by a jury in a criminal court. Adoptive placements break down when the new parents realise that there’s something unusual and difficult to cope with about this child.

There’s increasing evidence that very many of these tragic stories begin with failed diagnosis of a rare illness or neurological condition in one or more generation of the family. 

When it’s parents as well as children who are affected - then it’s even more likely that social workers, teachers, ancillary workers, lawyers and judges will get it wrong. 

There’s a petition online to ask Jeremy Hunt to stop restricting referrals for hospital investigations - you might like to sign it but also you might like to write to him personally to explain how vital this is when a child or family may have an undiagnosed rare illness or neurological condition.