RIP MANDIBA

Feeling quite emotional with all the Mandela coverage. My student and immediate post student years were at the height of the anti-apartheid struggles. I knew many South African & Zimbabwean exiles in London - some of whom went home to take important positions in governments and academia. I remember refusing to buy fruit of unknown origin for fear of it being South African. I made British Lion masks for a dance drama outside the gates of the Springbok match. I remember the smuggled out film 'End of Dialogue' and some of the people who made it especially Rakhetla Tshelana. It was an exciting time to live through in London but we didn't have the hardships of those fighting the real battle in Africa. Seeing all that old footage on tv jogged many many memories. I feel for Graca Machel now widowed twice - but at least she knew it was coming this time, I was with African friends when her first husbands plane was shot out of the sky, an unforgettable day. So many images, so many memories. The end of an era. RIP Mandiba. Nkosi Sikekele Africa.

I couldn't bear it when Cameron was eulogising on the news and being the first to sign the condolence book - what right had he got to do that?

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.
http://www.nhs.uk/Conditions/Joint-hypermobility/Pages/Diagnosis.aspx

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)
http://www.familylawweek.co.uk/site.aspx?i=ed113379

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.
http://www.wollenmichelmore.co.uk/team_members/team_member.php?id=74

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
parentsprotectingchildren@live.co.uk
https://www.facebook.com/PPPC.UK

Ehlers-Danlos Support UK
http://www.ehlers-danlos.org/what-is-eds
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
https://www.facebook.com/PPPC.UK/info
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.

Ehlers Danlos Syndrome & Child Protection Concerns

Article currently being medically verified and will be available shortly.

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. 

Children Screaming to be Heard. Conference Speech.

Conference: Children Screaming to be Heard.
Grantham, 4th September 2013.
Jan Loxley Blount
Parents Protecting Children UK
http://www.facebook.com/PPPC.UK
http://www.parents-protecting-children.org.uk/

I'm very excited to be here today to meet you all and hear your stories. I also have a few things for which I need to request your help. We've heard a lot about marches and protests. I think we are more likely to make ourselves heard by putting clear information into the public eye. I think we need something like the Independent Panel Inquiry, which after so many years of cover up, finally brought the reality of what happened at Hillsborough out into the open and showed how the police had contaminated evidence to protect their careers.

You don't need to take notes, my children will put the slides and this speech online. Links will be posted later on the Facebook pages for Parents Protecting Children UK, Children Screaming to be Heard & Parents Against Injustice Network.

Many people have asked how I became involved. As you can see I'm now a careworn OAP, but when I was young I qualified as a teacher and worked in primary and special schools. I ran holiday play schemes and set up a training course for adventure playground leaders. I appeared on the front cover of Woman's Own magazine as 'the girl who cares for latchkey kids', helped advise Thames TV on which children's projects to fund from the first two Telethons, vetted children's play projects for grants from public donations, UK Association for International Year of the Child, Marks & Spencer and the Baring Foundation. I set up the National Out of School Alliance which became Kids Club Network and is now known as 4Children. I sat in the Commons gallery and heard my own postgraduate research on children's play needs quoted by MPs on both sides.

Belatedly I took time out to have children. I found a lovely part time job in a local special school, but lost it because my son was never fully well. I therefore became both Carer and parent.

Five years later I had a daughter who seemed healthier than her brother. I helped at mothers & toddlers, did a bit of childminding and lots of arts & crafts with my children and their friends.

We bumped along, My son was privately diagnosed as having a high IQ together with a Specific Learning Difficulty.  We went to a SENDIST Tribunal and the Local Authority were instructed to undertake a Statutory Assessment of Special Educational Need, but they failed to do so.  He had an ENT infection which the GP dismissed as a 'snotty nosed kid with an over anxious mother'. It progressed to serious bilateral pneumonia for which he was hospitalised and in its wake he developed the symptoms of ME / CFS and missed a lot of school.

His school had an OFSTED Inspection and were worried that his attendance would affect their statistics. They sent an Education Welfare Officer to counsel us about returning him to school. We declined to participate as our son was not truanting, he was ill.  So the EWO visited my daughter's church school to warn them to expect trouble as she had an uncooperative family.

I took the children for an extended half term break in a caravan in Brittany and returned via Normandy on the 45th Anniversary of D Day, Sunday 6th June 1999. We had spent a wonderful last day in France listening to kilted Scottish Pipers on the pier and following balloon decked tanks on country roads. My sons health was much improved by the sea air.

On Tuesday the 8th of June a letter arrived informing us that a Child Protection inquiry had begun.

The process was entirely brutal. The social workers highly intrusive. It felt as if burglars were rifling through my bedroom with hob nailed boots on the carpet and filthy gardening gloves snagging delicate underwear.

Our lives would never be the same again.

I'd been a well respected Children's work professional and wasn't prepared for an intrusion such as this. It was surreal to have supposed professionals, young enough to have been taught by me in an infant school classroom, questioning and criticising my care of my own children.

I was no longer allowed to accompany my daughter on school trips, to help on the classroom cooking rota or to attend class assemblies. The head teacher gossiped and the news got out via the church. Parents didn't want their precious offspring anywhere near me, so my 5 year old daughter suddenly found herself with no invitations to parties, or to play at other people's houses. Nobody accepted our invitations to anything at all. My daughter was ostracised and bullied. My son was forced out of his school and became reclusive and isolated. My career in education and children's services was forever finished.

The charges against me at the so called Professionals Meeting, of which we later obtained forbidden minutes, would have been funny if their consequences weren't so devastating. They included:
Disrupting the children's education by having a second week in Brittany.
 Eating crisps in a school governors meeting.
Applying to SENDIST for a Statutory Assessment of Special Educational Need - they suggested that this was attention seeking on my part and that testing my son would be harmful to him!
Arriving late for a church service and stepping on the noisy metal church floor gratings as we came in.
Being obsessed with death and dying because I wore a silver crucifix and had Spanish Icons (bought on our honeymoon) on my living room wall.
Neglecting to send my son to school when he was ill.
Delivering my daughter to school late on a small number of occasions when her brother had made the morning difficult.
Upsetting the peripatetic woodwind teacher by copying her letter notes onto stave notation, because my dyslexic son could read music, but not letters.

We were convicted by a kangaroo court, masquerading as a Child Protection conference. My children spent about 10 months on the register in the category 'likelihood of future emotional harm'.

The Local Authority Child Protection plan couldn't be implemented because, after contacting the Australian researcher Helen Hayward Brown for advice, we pursued a policy of tactical non cooperation and refused all tests, investigations, appointments and meetings. Tactical non cooperation had worked well in Australia but there were no other UK reported cases.

The Local Authority were prevented from taking the children away by the intervention the late Dr Rudi Vis MP, who said that he had known me for many years and that these charges didn't make any sense to him. Also by a senior local Councillor, now a Lord, who met the chief executive, Jewish patriarch to Jewish patriarch, and told him that families should be left in peace to make their own decisions about family life and their children's upbringing. The chief executive reportedly told social services 'to get themselves out of this one' .

We were taken off the register but the damage was done.

It took us six years from first asking and three years from the Child Protection scam, to finally win a Statutory Assessment of Special Educational Need and a diagnosis of Asperger's Syndrome for my son. He was given an excellent Statement of Special Educational Need, which was then withdrawn at a critical time. His health concerns were largely un-investigated until he was adult. Children's Social Services ignored his needs but Adult Social Services now treat him well. He's part time at a local university and is recognised as an innovative young composer, but his pathway need not have been so fraught with difficulty.

My 19 year old daughter was to be here with me today but she was ill last night and couldn't come - she made the PowerPoint presentation. Last month I sat with her in a London hospital, discussing with a top specialist consultant why her recent ill health is preventing her progressing to university. He noted that symptoms had been reported since she was eight and asked 'why weren't these investigated much earlier?' I could hardly tell him that when she became ill in school year 3,  the PCT blocked all paediatric referrals on the basis that her mother was supposedly suffering from Munchausen's Syndrome by Proxy.  She waited over 10 years until she was 18 for anybody to take her health seriously. It now seems that medication could have allowed her an easier progression through adolescence and her teenage years and possibly avoided or reduced the severity of current serious ill health. This was denied by the precipitous action of inadequately trained professionals, who failed to spot her brothers Aspergers Syndrome. She has most certainly been abused by the system.

I'm here today because in the wake of what happened to us I contacted Charles Pragnell, who had been part of the team which uncovered wrongdoings by medical and social work personnel in Cleveland in 1986. Charles told me that the way out of depression at the loss of my career and the intrusion into our family life was to fight!

In conjunction with Charles and others and facilitated by St Margaret's URC Church in Finchley, I set up a network and a website and later a Facebook group known as Parents Protecting Children UK; through which we have supported many parents.

Parents Protecting Children UK works very closely with Parents Against Injustice Network and False Accusations Support Organisation. Without the back up of the sterling work done by Alison Stevens at PAIN (who is sad not to be here today because her husband is ill) and by Margaret Gardener at FASO, smaller organisations like ours would find it much more difficult to provide support where it is needed.

Parents Protecting Children UK strength is in preparing and submitting documentation to Government and other bodies, I have a postgraduate diploma in Child Development, so I learned how to put information together. It's ironic that I was more highly qualified, than the people who thought I didn't know how to bring up my children.

Parents Protecting Children UK works primarily with families where the issue is around undiagnosed neurological and medical conditions, notably Asperger's syndrome and the symptoms of ME / CFS. We are beginning to see cases where Ehlers Danlos Syndrome is part of the picture, relating to the hyper mobility and acute sensitivities of Aspie kids or to misdiagnosed Postural Orthostatic Tachycardia Syndrome & Dysautonomia in kids thought to have ME / CFS. This is an area of cutting edge new medical information.

The most frequent Child Protection problem which reaches Parents Protecting Children UK  is around failed diagnosis of Aspergers Syndrome in child or parent or both. Teachers, School Ancillary Workers, GPs, Midwives, Health Visitors, Social Workers and the like aren't trained to understand Autism Spectrum Differences & Difficulties. I've even met a hospital psychiatrist who said that it wasn't in her training. Aspergers Syndrome in women and girls has been massively under diagnosed. It is very widely missed. Schools resist applications for expensive assessments. Lists of symptoms of supposed Child Abuse, produced on websites and training courses by Save the Children, Barnado's, NSPCC et al overlap with lists of symptoms of Aspergers Syndrome, Dyspraxia, ADHD and related conditions. Many many cases get into the Child Protection system because an over zealous poorly trained support worker confuses symptoms of Autism Spectrum Differences & Difficulties, with symptoms they have been wrongly taught to identify and report as abuse. Well meaning but mistaken primary school ancillary workers have much to answer for.

Freud died before Aspergers Syndrome was properly understood. By definition Freudian trained psychiatrists and counsellors don't understand autism & Aspergers Syndrome. I've seen several cases where a mother, weary of educational and social services incompetence, has fought for a medical opinion and been mistakenly fed to Freudians, who have spat her family out with a string of harmful misdiagnosis, creating further problems. She then needs yet another assessment to refute this. As the Family Courts are now allowing fewer reports this could get even more difficult.

The new DSM (American diagnostic 'bible' used extensively in the UK & Europe) which recently came into force, will make things more difficult for identifying children with Autism Spectrum Differences & Difficulties, as the term 'Asperger's Syndrome' is disappearing. I think we could be in for a bad time.

However as regards mothers & girls on the spectrum some work is being done on new criteria which should eventually mean that less are missed.  The problem to date has been that criteria which were drawn up when it was assumed to be a male condition, fail to identify women & girls on the spectrum. I've come across a number of Child Protection cases where a very capable but clearly Aspie mother has been wrongly assumed to be difficult and obstructive or to have a borderline personality disorder.
There's one I've been involved with, in which an Aspie widow has been treated absolutely abominably and her children's lives totally wrecked. She has the Aspie trait of tenacity and will fight on and on and on. She's just starting to turn things around in a situation where most others would have given up long before now.

We have all been let down and betrayed by both Labour and Coalition Governments.

On 8th May 2000 Kirsty Wark reported on BBC2 Newsnight that there would be an enquiry into the validity of the diagnosis or Munchausen Syndrome by Proxy as espoused by David Southall & Roy Meadow. This never happened and sometime later, John Hutton, then in a junior position at the DoH, performed a conjuring trick, which presented an inquiry into wether MSBP existed, as a set of guidelines as to how MSBP, or Fictitious and Induced illness as he renamed it, could be identified. This was the same Svengali who later at the MoD helped to pull the wool over our eyes concerning Iraqi Weapons of Mass Destruction. Don't ever trust this man - he is now a Lord and was on the radio this very morning having a go at the long term unemployed! For those who want to know more about the failure to investigate MSBP, the old but excellent 105 page Concensus Document, which has recently been doing the rounds on Facebook, explains a great deal. My much shorter 2004 UCAFAA speech explains enough to give a basic understanding. The critical factor was the involvement of personnel associated with major children's charities, who have a vested interest in Child Protection witch hunts, which generate both jobs and funds. Both links are on the slides.

I was interviewed by Michael Rosen on John Peel's 'Home Truths' and sent  transcripts to Government Ministers Harriet Harman & Margaret Hodge who, as the Sunday Times & Evening Standard later reported, ignored me!

I also sent a transcript to Dr Liam Fox then at the DoH. He recognised the scenario from his work as a GP and asked his Lords Spokesperson, Earl Frederick Howe to investigate. This led to the 2001 House of Lords debate on False Accusation of Child Abuse in which Earl Howe and the Lib Dem Peer Lord Tim Clement Jones called for a Government inquiry. I've forgotten to put links to this in the PowerPoint, but you can find transcripts in the documents section on the Parents Protecting Children UK website. Some speeches make very interesting reading, from people who in opposition had much to say, but in office have done nothing.

Our family story has been referred to by Earl Howe, Baroness Williams, Tim Loughton and other parliamentarians, in and out of parliament. I appear in documents as the 'educated North London woman'. I've spoken on Radio 4 and been reported in various national, regional and local news papers. I've submitted documents to several government committees and enquiries. I'm appalled at how long this has gone on and how much worse it is getting. 10 years ago I thought we were winning, now I know that we are not!

Earl Howe, Tim Loughton, Liam Fox, Dominic Grieve, Caroline Spellman, Baroness Williams, Lord Tim Clement Jones and many of their colleagues in the Coalition are very very knowledgeable about false accusation of child abuse, spurious diagnosis of MSBP / FII and the horrific happenings in the Family Courts, leading in some cases to Forced Adoption. I fail to understand how they can have stood by whilst Michael Gove and his henchman Martin Narey have made everything so very much worse. I remember Howe once quoting Edmund Burke who is reported to have said "all that is necessary for the triumph of evil is that good men do nothing".

In 2002 the case of P,C & S v UK reached the European Court of Human Rights. They ruled that parenting skill should be tested before children were removed for adoption. For a while it was helpful but it now seems forgotten, especially in the wake of Baby P. It has never been revoked, I'm ever hopeful that a new case will find its way to the ECHR and demonstrate how the Brits have ignored its ruling.

I remember the case extensively reported online at Family Wrongs. The father and I used the P,C & S ruling to avoid his baby being removed from the Labour Ward and eventually to secure the homecoming of his two older children. But it didn't work out well for them as his wife died later of grief, never having recovered from the mauling by social services.

I wanted to tell you briefly about two other cases.

One where a mother bleeding heavily and waiting for a hysterectomy was struggling with an adolescent son now diagnosed with ADHD & probable Tourette's Syndrome. Education and Social Services conspired to accuse her of having a Borderline Personality Disorder and being an unfit parent. Her spurious diagnosis is refuted by a specialist NHS Hospital and her sons later diagnoses prove that she wasn't responsible. She's recovered from her gynae problems and three years later is still fighting to get the boy home from a series of highly unsuccessful & inappropriate kinship care & foster care placements. The extent Social Services will go to to protect their own careers, at the expense of this boys teenage years, is beyond belief.

Another case where some years previously a young woman had been involved in trying to protect trees from destruction in a controversial road scheme. She spent a few days in prison for contempt of court because she refused to leave her tree. Much later she was respectably married and pregnant, but the health visitor or midwife found out that she had a 'criminal record'. The baby girl was born on the Child Protection register and when she became ill everyone ignored it, assuming her mother to be attention seeking. Having a criminal record for protecting trees somehow implied that she must also have MSBP. The little girl had a life threatening illness, which was not identified or treated and resulted in a stroke which has left her permanently disabled.

It's not just the forced adoptions which create life sentences for children and their parents.

I've got a number of things for which I need to request your help.

1/ little recognition or notice seems to have been paid to Gove's attempts to reform GCSEs. Schools are driven by cash and statistics. It will become impossible for them to admit children at Secondary Transfer who could pose an exam risk. This will include bright children with Dyslexia, Dyspraxia, ADHD, Aspergers Syndrome & a whole host of neurological differences. Those with fluctuating or permanent ill health, including ME / CFS and even severe Hay Fever may all be refused places because they can't deal with a system that has no coursework and no winter repeats, a system where everything hinges on a pressurised exam in May or June.
I foresee many more fights for school places and many more arguments over children's conditions, inevitably some of these will end up in Child Protection Conferences & Family Courts.
My epetition has only about a fortnight to run. There's a flyer on your chair. Please pick up your mobile now or go home to your computer tonight and sign!
Please pass the flyer onto your friend or relative or colleague and get them to sign too.
Please Tweet it &  post it to Facebook groups and networks - lets see how far we can take it! We have very little time left .

2/ I've found another epetition that I didn't know about concerning social services - it looks worth signing - the link is on the slides.

3/ I've applied for another epetition demanding an inquiry into False Accusations of Child Abuse and Forced Adoptions, preferably by an Independent Panel, like the one which exposed the Hillsborough Tragedy.  We need an inquiry which would listen to parents and children and see through the defences put up by Social Services, Paediatricians and Education Authorities.
If it gets accepted I will post the link everywhere I can think of - so please look out for it in the next few days.

4/ My son & I created an online survey questionnaire. I will paste the link everywhere I can think of and invite you all to share it widely. Please complete it!
If you are gagged you can do it anonymously as names aren't required information.
Lets see how much evidence we can compile and see if that makes the media or the government or the major religious bodies wake up and take notice of us. I want to demonstrate the urgent need for an inquiry.
I'd love them back by the end of the month so it doesn't drag on and we can present our evidence as soon as possible.
If you can't complete it online please email me and we will send you a printable copy.
I've had a few offers via the Parents Protecting Children UK Facebook page for people to help me collate replies. We will need more help, so if you can offer even a little time, please message me via Parents Protecting Children UK on Facebook or email me at Parents Protecting Children UK.

THANKYOU for listening and please remember to sign epetitions and complete the survey.

(C)Jan Loxley Blount 04:09:2013

Parent Carer

This is part of my talk to Barnet Carers Forum this morning 10.09.2013

Not many generations ago, being the Parent Carer of a child with disability or chronic long term illness was relatively rare. We've all read stories in novels and seen them in television dramas.
If a child was born with some sort of obvious deformity, the midwife may well have failed to clear its airway and told the parents that it was a stillbirth. If it was very sickly, it would fail to thrive and die in infancy. Before antibiotics a weak child would have sooner or later succumbed to infection and died young.
A surviving child with an obvious disability would have quite probably been kept in an institution, hidden from view.
These days midwives and doctors would be dragged through the courts and blazoned across the front pages of the tabloid press, if they didn't do everything in their power to ensure the survival of the weakest of babies. A baby born the size of my hand, can now be kept alive and develop to full term in an incubator, instead of the womb. Increased survival rates mean that a higher proportion of children with long term medical and neurological difficulties have the opportunity to grow up. We no longer hide disabled children in institutions, they live at home with their families. Inevitably more parents find themselves as Carers.
You talk to your pregnancy bump and dream of it being clever, rich and famous and keeping you in comfortable retirement. Then there's a difficult or premature birth or something just doesn't seem quite right. You get extra visits from the midwife, or the health visitor finds herself repeating one of the milestone checks.
It may be a gradual process, or it may be quite sudden, but one day it dawns on you that all isn't quite as you expected it to be. This  adorable long awaited child is different, less than the perfect dream.
You find yourself with a string of hospital appointments where everyone uses words you've never heard before. You start to pick up the medical terminology and to use it when talking to friends or family, who look at you strangely assuming you are showing off, exaggerating or attention seeking. You come face to face with the reality that your life will never be the same again and that, with or without your partner or co-parent, you are alone.  

Or maybe the child is in perfect health, but when she or he starts to socialise in mums and toddlers, nursery or the reception class there are arguments and tantrums, toys unable to be shared, circle time not joined (because your offspring was hiding under the coats, waiting until the daily ordeal was over). Maybe she's clumsy and breaks things, or has multiple minor accidents. Maybe he finds it impossible to learn to read. Maybe your child can't sit still and concentrate and is constantly being reprimanded for bad behaviour. You ask for some kind of assessment but the school refuses. Your child gets branded as uncooperative and you start to realise that something is wrong.    

Ideally the medical or educational personnel involved should take you metaphorically by the hand and lead you kindly and gently through the maze of medical or educational or neurological assessments. They should help you to find the best of everything for your beloved child, help you find support for yourself and other family members. Social services could make life easier for your family.
Sadly thats rarely how it works. Doctors don't like difficult or insoluble or hard to diagnose conditions, which clog up their waiting rooms or cost the practice money in onward referrals. Schools and education authorities are budget driven and don't want additional children with expensive and cumbersome Statements of Special Educational Need. Social services are so obsessed with 'Child Protection' that they no longer consider support for loving families in difficult circumstances.
Parent Carers finds themselves as warriors, fighting for diagnosis, services and support. Employers may be critical of the time spent on the telephone or at appointments. Jobs may be lost or careers downgraded. Siblings may find that they get less parental attention and are often bullied by classmates who don't understand. Grandparents probably find the whole situation incomprehensible. Aunts and uncles stand back and keep out of it, so there are less invitations to family gatherings, less visits and phone calls.
Parent Carers clamour more and more urgently for vital diagnosis, services and support. Somebody somewhere may suggest that the frantic Parent Carer is attention seeking, in which case the situation of 'no available resources' turns upside down. If a Child Protection investigation is instituted, the funds flow in for endless meetings and innumerable assessments, but rarely the ones which will actually help the child.
Only this morning I had an email from Disability Today with the results of a survey demonstrating that many Parent Carers are near to breaking point.

Copywrite Jan Loxley Blount 

My holiday reading. Victoria Hislop

'The Thread' & The Last Dance'

both by Victoria Hislop

Read on holiday in Quiberon, Brittany, France. July 2013

I discovered Victoria Hislop in Crete in 2011, when my holiday neighbour's daughter lent The Island to her mum, who lent it to me. I read and returned it in a day, downloaded a copy to my iPad for safe keeping and in 2013 gave copies to many via World Book Night. Whist on Crete, I visited Spinalonga and was able to share pictures of the island at the WBN 2013 lunch party for Finchley Carers.

I'd always intended to get back to this author, purchasing The Return & The Thread on Kindle and treating myself to an early hardback of The Last Dance for Christmas. Circumstances  had left all unread.

Here in France, surrounded by sea on the Presqu'île de Quiberon, where most of the time the mobile phone says 'no service' and the internet is all but non existent, has some of the timeless village feel of a Greek island. Thankfully, I remembered to bring Victoria Hislop on holiday with me.  

Having not had the peace of mind to read for some time, I began with the short story book The Last Dance. She drew me in gently with a parrot changing the course of the lives of two people and thereby (presumably) going on to rock whole village and the wider Catholic Church; she finished with a man marrying the wrong bride. As in her longer works, the recurrent theme of seeking the balance between family ties and a just equanimity in society was explored. This was powerfully illustrated in a rather bloody tale of rival butchers in a meat market. Always she looks for hope and reconciliation.

Along the way her One Cretan Evening, which I believe comes from another of her short story collections, is a powerful tale of misrepresentation leading to cruel injustice. She takes the story far enough to demonstrate the attempts at atonement, by those who had followed the words of others rather than seeking the truth for themselves. How I wish that I ever saw that in my own work with the misjudged.

Having feasted on the hors d'oeuvre of short stories, I was finally ready to start the main meal of a complete book. Although tempted to track her progression as a writer by reading The Return, I decided to stick with Greece and skipped to Thessaloniki for The Thread.

She begins in 2007 with an English born student visiting his grandparents whilst studying for his Masters in a Greek university. At a port-side cafe he encourages them to consider invitations to live out their days with their lawyer son's family in Highate, or their doctor daughter's family in Boston USA. Having posed the question, he helps a blind man across the busy street. The blind man suggests that the student shuts his eyes for a moment to see Thessaloniki with his other senses. Dimitri is overwhelmed by the experience. He returns and is told that although there had been no other option than to send their children abroad for education the old folks had always hoped that they would return to Thessaloniki. They buy meagre provisions in the market and carry them to their modest flat to prepare a feast for their beloved grandson. Whilst the food is cooking, Dimitri senior and his beloved wife Katerina tell their stories and demonstrate why they could never leave. The book ends with the young Dimitri (whom his grandparents address using the diminutive Mitsos) accepting that they will stay and making a radical decision about his own future.

The story takes us through two world wars, a civil war and massive political and economic change. We see destruction of life and property by fire, earthquake and fanatical human cruelty.

Dimitri's Grandfather, also called Dimitri was the son of Konstantinos, a wealthy, right wing Thessalonian merchant; who manufactured for himself the perfect family, to demonstrate to the town that he could entertain in style and to ensure the survival of the business through inheritance by the son. Changing circumstances ensure that this will never happen. None of his money passed to his son but when it became apparent that they couldn't be treated fairly in Thessaloniki, his widow (Olga senior) paid for her son's children Theodoris (a gift from God) and Olga junior to be educated in London and Boston.

Dimitri's Grandmother, Katerina, was a child refugee from Smyrna (Izmir) involved in a population exchange of Greek Christians and Turkish Muslims. We meet her trying to find her mother who has just left with her new baby on a boat to Athens. A soldier tends little Katerina's wounded arm and thereby saves her life. He binds the wounded arm with part of his shirt, on which a silver button hung by a thread.

What is unusual about Victoria Hislop is that she tells you so much at the beginning. No need to take a sneaky look at the last chapter. You, the reader, start out knowing that both Dimitri and Katerina survive. You know almost from the outset that it is Dimitri's ill fated uncle who saved Katerina's  life, although it is only in the closing pages that this is revealed to the two central characters. You are therefore left not wondering 'if' they will survive, or get themselves out of seemingly impossible life situations of vastly unequal wealth and poverty, to end up together in modest retirement with highly educated international children and grandchildren. You can only wonder 'how on earth' it is going to happen, especially when you realise that so much of the book is gone and so much is left to resolve.

The pace is fast, she makes compelling reading, difficult to put down. Some of her descriptions are utterly brilliant, for instance telling us about the uninvited flies who live with the the goat and the chickens, as a way of helping us to see the stench and squalor of living in abject poverty, with essential animals as part of the household. To cover 90 years of history containing so much detail of two world wars, the events between them and afterwards, within a relatively short novel about love and family ties is a daunting task, brilliantly executed. Her ability to get behind the headlines and tell us how it felt for ordinary and extraordinary people caught up in unbelievable catastrophe is awesome.

Hislop explores the changing place of women in society as mothers, wives, daughters, lovers, workers, homemakers, prostitutes, mannequins and chattels. She explores the relationship between mother or mother substitute and daughter and between father and son, especially when politically there is no common ground.

At the heart of the book she tells the story of Jews going like lambs to the slaughter. Encouraged by the gullible Rabbi to withdraw and exchange their Greek savings for Polish currency to take with them on the train to their 'new lives' in the gas chambers. As we know from the preface to the book Katerina ensures the survival of some of the most precious Jewish relics by sewing them into very ordinary objects in daily use by Christians. Places where they would never be discovered until, much later, she was able to hand them over to those who could pass them onto future generations.    

The Thread and The Last Dance are two books very much to be recommended. As was The Island.  Now I need to get my head out of Greece and head for Spain, to read The Return. Then I'll have to wait for her to write something new!

The only frustrating thing about reading Hislop on the beach or campsite with no Internet is the inability to Google for explanation of her many references, historical events, passages from the Bible & the Torah, names and illustrations from classical mythology and folk tales. Maybe I need to re-read her books in London and thereby teach myself some history and culture.

(C) Jan Loxley Blount 15/07/13
Conguel, Quiberon, France.