Parents Protecting Children UK Wednesday 3 September 2014 Right Hon David Cameron MP Prime Minister Right Hon Nick Clegg MP Deputy Prime Minister Right Hon Ed Miliband MP Leader of HM Opposition Right Hon Jeremy Hunt MP, Secretary of State for Health Earl Howe, Parliamentary Under-Secretary of State, Department of Health. Dear Sirs, We are writing in the wake of the much publicised story of the family of Ashya King, who found themselves under legal attack for challenging the medical establishment over the care and treatment of their seriously ill son. It seems that they were threatened with draconian child protective measures and that this, as well as their desire to get their son to the Czech Republic for treatment, precipitated their decision to flee to Spain. We are delighted that this family are now reunited. Our hopes and prayers are with the family as they strive for Ashyas recovery. However we wanted to alert you to the fact that this case is merely the tip of a terrifyingly large iceberg of cases, in which families, who challenge certain medical personnel, are vilified and victimised and find themselves subjected to unnecessary and unwarranted child protective interventions. These actions are not benign and usually cause serious harm to children and their families, as has happened to the Kings. The processes are frequently blinkered and insensitive, producing the wrong result which sometimes includes the removal of a child with illness or disability to state care or adoption, when the families should have been listened to and supported in staying together. Chronically sick and disabled children do not have good outcomes in state care. Placements frequently break down when adoptive parents find themselves as Carers of a child with additional needs. Recent moves towards interagency working are creating situations where more people are working beyond their sphere and level of competence and making tragic errors of judgement. At particular risk are families with difficult to diagnose, genetic, familial and multi-generational conditions, in which parents may be struggling with their own health or neurological difficulties, as well as coping with the immense medical, educational or socialisation problems of their child. Families who are particularly at risk are those with: Autism Spectrum Difficulties & Differences affecting educational and social functioning. Collagen deficiency conditions such as Osteogenesis Imperfecta, Ehlers Danlos Syndrome and Marfan Syndrome, giving rise to other conditions including brittle bones and Postural Orthostatic Tachycardia. Other rare genetic disorders and deletions including 22q11.2 deletion / DiGeorge Syndrome which causes multiple symptoms including heart defects. Children who develop Myalgic Encephalopathy (ME/CFS) which is recognised as one of the main causes of long term school absence but is frequently misunderstood. Pregnant women who challenge the care on offer, or who exercise their right to choose how and where to give birth. Children with vitamin D deficiency which can result from lack of sunlight, milk intolerance or genetic disorders with consequences including broken bones and symptoms of Rickets. Parents who request second medical opinions from another clinician or hospital. Parents who ask for their seriously ill child to be moved to somewhere providing a higher level of treatment eg to a leading UK heart unit or for cancer care abroad Those who have put complaints into hospitals in relation to their childs care. Those who choose to home educate (often because of Local Authority failure to provide or implement a Statement of Special Educational Need). It is frequently difficult to get proper diagnosis and desperate parents find themselves scorned and accused of Fabricating or Inducing Illness in their child, merely for asking for further investigation of their childs difficulties. Numerous families are threatened with Child Protection proceedings and a number find themselves in court, if they won’t comply with medical and social care plans, which from the parents point of view, appear not to be in the best interests of their child. These situations can arise when medical, educational and social services personnel have insufficient or no knowledge of these conditions and illnesses and of the consequent stresses on all aspects of family life - living with a sick or disabled child is not easy. Misunderstandings can occur because clinicians are not always good at listening to or reassuring frightened parents. The 26 week rule for procedures in the Family Court is causing additional difficulties, as local authorities seek to meet targets by taking things further before moving matters into the justice system. This frequently means that, to the detriment of many families, independent scrutiny is denied until a very late stage in the proceedings. What is of note is the failure by child protection teams to implement the guidance on genetic tests issued by the GMC in January 2013. A couple of weeks ago the Prime Minister said that there is a need to check that systems put in place to support children are working properly - it is clear that for families with illness and or disability, there are a frightening number of cases where supposedly child protective measures are going tragically wrong. Parents Protecting Children UK has some raw research data which appears to confirm this view. There is a proposed in depth research project by Dr Clive Baldwin, Professor of Social Work, St Thomas University, Canada, to build on this preliminary data. Other organisations and individuals, including those listed below have their own research data and observations, which they would be happy to share with government. We recommend that you discuss this matter with Earl Howe who, when in opposition, did considerable research in this area and knows most of the people on the list below. He notably described the condition of families with illness and disability who find themselves at odds with the statutory agencies as a parallel universe. He and Lord Clement-Jones requested a parliamentary enquiry which has never been undertaken. Please also contact John Hemming MP and his organisation Justice for Families, who have considerable expert knowledge and experience in this area and have helped many families. The Family Rights Group also have relevant experience. You may also wish to talk to the Countess of Mar, Baroness Williams of Crosby, Lord Clement-Jones, Rt Hon Dr Liam Fox MP, Rt Hon Dominic Grieve QC MP, Rt Hon Caroline Spelman MP, Timothy Loughton MP, Claire Curtis Thomas former MP, and several others parliamentarians who have some background knowledge in this area. This letter comes with the support and involvement of several organisations and individuals with experience, knowledge and concern in this area. With more time this list could be much more extensive, but speed seemed imperative. Those who have agreed today that their names should be included here are: Parents Protecting Children UK - Jan Loxley Blount, Charles Pragnell & Revd John Alan Cox Parents Against Injustice Network - Trevor Jones & Alison Jane Stevens False Allegations Support Organisation - Margaret Gardener AIMS - Association for Improvements in the Maternity Services - Beverley Beech The Five Percenters - Rioch Edwards Brown Forward-ME - Countess of Mar Tymes Trust - Jane Colby AYME - Association for Young People with ME - Mary-Jane Willows Autism Women Matter - Monique Blakemore Education Equality - Evelyn Ashford PAFAA with SOFAP - Helga Speck Professor Dr Clive Baldwin (St Thomas University, Canada) Dr Lynne Wrennall (Liverpool John Moores University) Peter Dale & Associates - Dr Peter Dale Independant Social Worker Carolyn Canavan MEd - Writer on Autism (LiterAuti) Fiona Woollard - Support Worker for families with DiGeorge Syndrome & related difficulties, We look forward to an early opportunity for knowledgeable individuals and representatives of the organisations listed above to meet with you to discuss these urgent matters. Very Best Wishes, Yours sincerely, Jan Loxley Blount TCert., Dip Child Development. [email protected] https://facebook/PPPC.UK
Posted on: Fri, 05 Sep 2014 20:19:57 +0000
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