My Story and the stigma of false accusations after vaccine injury
With an accusation of MSBP comes suspicion, stigma, prejudice and discrimination. I was wrongly accused of MSBP in late 1999 and my children were both put on the “at risk register” by Social Services in early 2000. I remember the first case conference as if it was yesterday. I was alone and taken into a room of around twenty professionals, most of whom I had never even met. I was subjected a whole morning of interrogation. My whole life and that of my children was put under a magnifying glass. It felt like I was named and shamed. I was guilty before I even set foot in that building. I was herded in and out of the conference whilst some of the reports were read privately. It was as near to being in court as I have been and I was terrified. I was subjected to three case conferences in total. I was forced to undergo a full psychiatric assessment, have a family worker live in my house for two weeks in the summer holidays and attend core meeting every two weeks.
I am a single mother with two adopted disabled sons. I chose to adopt disabled children as I felt disabled older children deserved the same right to a loving family as any other child. Many disabled children wait as long as ten years to find a family.I adopted my boys because I believed I could give them a chance, a future. I thought that by taking them out of the care system I could in some way make a difference to their lives. I thought my experience of working with the disabled would hold me in good stead and help me access the services they would need to thrive. It in fact became a vital part of the MSBP profile.
Labelling of any kind leads to prejudice, stigma and discrimination which in turn can lead to a person losing all self esteem. During the case conferences, I was accused of making my eldest son who has Cerebral Palsy (mild ataxic) ADHD, Aspergers and Learning disabilities swim as a disabled swimmer to gain attention and to make him feel disabled. I was told I was to promote him as a “normal” person to encourage his self esteem. My son who swum for Great Britain had hopes of swimming in the Para Olympics. I was told quote
“This is unrealistic, as swimmers with ******** level of disability would not qualify” “You are giving your son false expectations.”
This was totally untrue as my son had been profiled by the Para Olympic team profilers and also the Cerebral Palsy Profilers. He swam under the S10 profile. This is a category for Swimmers with a very mild physical disability. I was told ****** did not have Cerebral Palsy – even though other doctors could provide written diagnoses to confirm that he did.
One Social worker wrote in a report that a risk factor (to my children) was that
“Christina gains much of her feelings of self worth through her perceived dedication to her children’s well being”.
Even my children’s clothes were criticized. ***** liked and still likes tee-shirts with pictures on. He had just returned from Disney Land and had a tee-shirt with Mickey Mouse on which he decided to use for a P.E. lesson. I was accused of dressing him younger than his age to enhance his feeling of being disabled.
For my other son, I was accused of putting hearing aids on him to make him look disabled. Few of my children’s records were read properly or referred to. No paediatricians familiar with ********** were invited to the case conferences. My son has a permanent bi lateral hearing loss exacerbated by glue ear. Weeks later I went to his regular hearing tests and burst into tears asking why my consultant had not backed me. I kept asking if my son really had a hearing problem. I had been totally convinced by the panel that I had made this all up. My consultant was livid saying he knew nothing of any hearings or case conferences. In a letter he later wrote to Social Services he wrote:
“I was surprised and frankly appalled that comments can be passed in a specialist area of this kind without any reference to any of the audio logical professionals involved”
At the third and last case conference and only after professional Lisa Blakemore-Brown had become involved, my children were taken off the “at risk register” and since that time my name has been completely cleared. As it happened both children were found to have all disabilities that I had said and a whole lot more.
During the time I was accused I lost my father and had to arrange his funeral whilst also looking after a totally dependant mother. My father’s death caused the last case conference to be deferred. Comment by the Chair was
“Due to the untimely death of Ms England’s father the case conference is later than scheduled”
My father had died of lung and brain cancer. My largest regret is that my father died with his precious grandchildren on the “at risk register” and his only daughter accused of child abuse.
If that was the end of it I suppose I could come to terms with my feelings but it isn’t. For me and my boys it will never end.
Before I was accused, we were in the process of adopting another child. A permanent stop was put on that as with an accusation comes the child abuse register. It doesn’t matter that my name is cleared as my name will remain on there permanently as I have been suspected of child abuse. This causes me much intense pain as I felt I was a good caring and loving mother. I long to give another child with disabilities a home and a family, unfortunately through these accusations it means not only can I never adopt or foster again also I can never work with children. Before my accusation, I was a foster mother, I was fostering a child with severe Down’s Syndrome and challenging behaviour aged six, that child was immediately removed from my care. I am qualified as a Portage Teacher to work with children that are disabled in their homes. This means I am qualified to work out programmes of small steps to help the parents teach their disabled youngsters new skills. I am also qualified in learning support for children with disabilities. As it stands I cannot even help at my local Sunday School or go on one of their outings. I feel such deep pain over this. I feel that I have a stain on my character and am viewed with deep suspicion even hate by some people.
I was a member of the Mothers Union at my church but I was the only member not allowed to assist in Baptisms. This totally broke my heart. To enable me to do this I had to go through full Child Protection checks. I explained to the leader what had happened but instead of support she told every member of Mothers Union. Half still refuse to speak to me despite knowing myself and my children for more than 8 years. I no longer go.
I often feel stigmatised and discriminated against.
Getting my children’s needs met has been especially difficult as many referrals go missing. As MSBP is written right through all our records I am immediately viewed with suspicion. My youngest son has a low immune system and is frequently ill very often resulting in hospital stays. I am always monitored unnecessarily, this is because the assumption is, that a mother with MSBP may try to cause her child harm. All medical records are immediately removed from the room on my arrival as it is assumed that they will be tampered with. Doctors who don’t know me or my son ignore anything I say and this nearly resulted in my youngest being diagnosed with Appendicitis when I knew he had Pneumonia, why, because he was saying he had tummy ache. He doesn’t know his tummy from his head as he has severe learning difficulties and I had seen him in a similar condition when he had previously had pneumonia. Fortunately for us, a doctor who did know us said he was taking on the case. He said “I know this mother and I know this child”. I want all staff to listen to this parent”. He then asked me what I thought and immediately ordered chest x ray. It was later confirmed as Pneumonia.
All labels carry stigma. MSBP is all about labels. The child psychiatrist in my case conferences said I like labels. He had not even bothered to read my children’s adoption records and uniquely accused me of causing and fabricating the disabilities my children came to me with. He had at no time before the case conferences met me or my children.
Stigma means a mark or token of shame, disgrace or reproach. Through this label, I feel as if I have a token of shame pinned on me like a badge stating that I am not be trusted.
With labels comes prejudice. Prejudice means to have a fixed attitude against another person or group of people For example those labelled with MSBP, are thought of as having certain characteristics, even when the evidence shows that they do not. Holding any form of fixed attitude usually leads to a certain behaviour towards that target group, leading to the person with the prejudice acting differently towards them. This is called Discrimination. I have been discriminated against by the Mothers Union and the hospital.
When my eldest son was 20 he broke his finger in a basketball match. I took him to the hospital and then asked to prove how my son broke his finger. This resulted in me having to get a letter from his basketball coach.
MSBP is seen by many as mental illness and it is seen by all as child abuse. Anyone who has the label MSBP attached to them whether falsely or not is seen as either mentally ill or a child abuser and nine times out of ten they are seen as both. I feel I have to prove everything and in doing this I feel I may appear odd to outsiders.
I am not or ever have been mentally ill. My psychiatric assessment came out perfectly normal. I have no personality disorder. I know other falsely accused mothers, none of them I would describe as having a mental illness or a personality disorder.
In a recent paper by the National Economic and Social Forum or NSEF report 36 October 2007 called Mental Health and Social Inclusion, it states that Stigma and Discrimination are the greatest barriers to Social Inclusion.
A wrong label of mental Illness attached to any person affects that person and their family for life. The label MSBP given wrongly has led to children dying, parents serving prison sentences and many children being snatched away from loving caring parents and thrown into an already failing care system.
Very often a label of MSBP is given when the medical profession cannot find the answers. Instead of continuing to try they chose to blame Mum. Some parents push for answers they want to do everything possible to give their children the best they can in life. Often these children have undiagnosed disorders like mine. MSBP is very often attached to parents like me to quieten them and to save money. Here in “Justice out of balance” this is explained by numerous professionals and also in this email by Michael Nott
For me I question everything I do. I still have panic attacks on entering a hospital or a GP’s. My children do not get the services and provisions they are entitled to. Despite professionals giving expert opinions and diagnoses the LEA still deny certain conditions exist and so in turn my children cannot access certain educational provision. I have been left shaken and untrusting. For my family and thousands of others the system has failed us and our children. I agree with Charles Pragnell when he says in his article Charles Pragnell – Perverse Reversal of Child Custody
“it is child abuse gone mad”.
Because of my now extreme dislike and mistrust of medical settings and the professionals I take a witness to every meeting and every appointment and emergency. I am now terrified of challenging doctors. My childrens’ needs are neglected not by me but by the system because of wrong diagnosis
Both children have been diagnosed with Autism and varying conditions by Lisa Blakemore-Brown who for us has been a life saver. Without her I doubt if I could have got through. She is the only one who supported my eldest when he was so depressed he never wanted to swim again and felt that all his trophies and medals were worthless. His words “I am a nothing”.. She sat with him while he rocked, cried and was so distressed. She talked to him and persuaded him to carry on. Her diagnoses is still being ignored. This is I feel to save face.
******** struggled in a mainstream college and could only get on a part time course with very little educational support. Fortunately through Lisa he is now on a full time course at another mainstream college with full time support. He has severe dyslexia and really struggled to cope. He has been refused a social worker and so has absolutely no support.
Lisa did very full and thorough assessments on both my children. She read all the adoption papers and read their full histories. She traced back their past medical backgrounds and discovered that my eldest became very sick with bowel problems and Autism after his MMR vaccine. This was very well documented in the ‘foster carer diaries’ that he came with. She showed me and explained to me the patterns that I had not even considered at that time because I was totally unaware about the links with adverse reactions to vaccines and Autism.
She showed me the enormous amount of work that she had done over many years and the letters that she had written to the UK Government outlining her concerns. Lisa was the first professional in the worldÂ to link vaccine adverse reactions, Autism and false accusations of MSBP. Over the years she had seen a growing number of children with ‘Vaccine Induced Autism’ whose parents like myself had been falsely accused of MSBP.
She diagnosed my youngest son to have Autism Spectrum Disorder, ADHD Dyspraxia, Dyslexia, Severe Learning Difficulties and a Language Disorder on top of already diagnosed Low Immune System, Asthma, Epilepsy, Growth problem, Bilateral hearing loss and Mild curvature of the spine,
My youngest has now also left school. Fortunately through the knowledge of what happened to ****** I knew he needed to keep the educational statement to get education until 19. I have fought to keep this and have managed to, however, due to this borough ignoring and denying the label ASD he has had to go into a school for Severely and Profoundly disabled children for the remaining 3 years of his education This is totally the wrong provision and a placement he had already tried and been found to be too advanced in. When he has finished there, there is nothing unless his true disabilities are recognized and acknowledged. If they are, he can access a specialist long term provision and later go into independent living. Fortunately Lisa’s reports are so good and so in depth, backed up with references and written material,these will help me to fight for ***** needs and hopefully get him in that long term special provision which is now at the age of 18 being thought necessary. Finally in the last six months after two years at his present school he is believed to be (by the school) Autistic and extremely vulnerable.
By labelling me MSBP, I am thought to exaggerate and lie. I am viewed with suspicion so this makes the fighting all the more difficult. What chance does a mother have of fighting to get needs met when no one believes a word she says? Fortunately for this family we have an excellent MP, who has read every document I own and believes me. He is fighting very hard for my children. Nick Gibb MP has been a huge support and pillar of strength.
In my story there are some positive outcomes. My eldest son carried on swimming despite two years of depression and not wanting to swim, caused by Social Services. When I was accused he felt that all his 200 medals were not worth anything and neither was he. He however recently swam in the World Games in the USA. He swam in Holland in January 2008 and achieved a Gold, Silver and a Bronze. He also had a trip to Slovakia in June 2008 and won 1 Gold 2 Silver and 2 Bronze. He went on to repeat this in 2009 and hopes to go again this year. He recently was profiled out of the S10 category as the profile criteria changed so he now swims as S14 the category for those with a Leaning Disability. He is soon to go to Czech Republic.
My youngest enjoys his life, is passionate about wrestling, also swims and does Archery.
It is my belief that the vaccine link to false accusations of MSBP, SBS and SIDS needs to be looked into in more depth.
I was extremely lucky to have had Lisa Blakemore-Brown as the professional in my case. If it had not been for this incredible and dedicated lady I would not have had my children today. I will never be able to find the words to thank her enough. If it was not for her dedication and hard work throughout many years ,many families like myself, would not be together and their children would never have access to the services and education that they do today.
Also helping me has been Nick Gibb MP, Earl Howe and Countess Mar House of Lords and Charles Pragnell.
I have decided to use my experiences and have studied to become a journalist to expose the issues raised and help other families that have been falsely accused of child abuse after their child has been vaccine injured.