Sunday, 18 March 2018

Accusations of fabricated illness and child abuse used to bully innocent families

Fabricated or induced illness (formerly Munchausens By Proxy) is a rare form of child abuse. NHS choices website reckons that the incident of FII is 89 cases in every 100,000, however it does not quote its source. The government document "Safeguarding children in whom illness is fabricated or induced" put the figure at 0.5 out if every 100,000 over 5 and 2.8 in every 100,000 preschoolers, or 1 child in a million, per year.
FII takes many forms but usually includes;
- poisoning to induce symptoms
- physically inducing symptoms
-over or under medicating
- claiming false symptoms that are not easily verified
- exaggerating symptoms
- obtaining specialist treatment when not needed
- falsely alleging psychological illness in a child

However, despite the extreme and very rare nature of FII, accusations of FII are very commonplace. There is a worrying trend of using FII accusations routinely in child protection against any family that complains about services, is seen as "difficult", does not comply blindly or in any other way annoys professionals involved.

Current training for HCPs on FII gives a list of symptoms which is very worrying. These include, use of complaints procedures, seeking out advocates and support, advocating on behalf of the child and seeking multiple diagnosis. These behaviours are blatantly the normal behaviours of parents fighting for a seriously ill child or a child with additional needs who is being let down by the system.

What we end up with is a system that attacks families that are trying to care for children with rare, complex, invisible, or multiple illnesses, conditions and needs.

I compiled a survey to look at the extent of this problem as I am personally aware of a number of families who have been bullied in this way. What I found did not shock me, but I hope it can highlight this very real problem in our society.

I received 168 responses to my survey, of those 61% had been accused of FII. This worrying trend if FII is very ableist, targeting those families who have multiple members with extra needs, illness, or disability. 57% of parents accused of FII had an an additional need, chronic illness or disability themselves.

One surprise was that the accusations of FII seemed to be thrown at parents from a variety of socioeconomic backgrounds:
38 % were single parents in benefits
16% were a couple on benefits
38% were a couple with one or more person working
9% were single working parents
So it would seem that these accusations are not targeted at one class alone, however, families whose children have additional needs, chronic illness or disability are more likely to experience poverty (Kuper et Al 2012). Poverty  of course, not being measured by whether or not your parents work. It is estimated by Scope that disability costs an extra £570 on top of average living costs, so there is a massive financial burden to be taken into account when talking about families with children with additional needs.
However, according to the Office of National Statistics, single parent households make up 25% of families in the UK, so it would seem single parent households are overrepresentated in accusations if FII, making up 47% of those families accussed of FII.

Bullying by social services is of course, not limited to FII accusations. There does seem to be many similar trends through other malicious practice.
Of those surveyed who had experienced child protection proceedings, 59% had found themselves facing child protection proceedings following a complaint they had made. Worryingly, 18% faced child protection procedures after complaining about a professional abusing their child. If complaints of abuse by professionals like social workers and health care professionals are silenced with malicious proceedings, how can we trust those professionals with our children?

Within those parents who had experienced child protection proceedings, 54% have an extra need, chronic illness or disability themselves. Although it may be argued that parents with SEND or chronic illness may need additional support, this is not what is happening here. This is a high incident of these parents facing accusations of child abuse or neglect. A massive over representation of those with additional needs, illness or disability and shows the blatant ableism within health and social care.

This is reflected within the children of the families experiencing child protection proceedings, 87% of the families who faced child protection proceedings had a child with additional needs, illness or disability.
Remember again, that this isn't families being supported by social service, but those accused of abuse and neglect.

"Invisible" Illness and disabilities seem to be a particular target for these proceedings, namely;
- Autistic Spectrum Disorder
- Ehlers Danlos Syndrome
- Myalgic Encephalomyelitis
- Attention Deficit Hyperactivity Disorder
- Mental health difficulties
The ableist nature of society against those with Invisible illness and disability is well documented and there are current campaigns seeking to highlight Invisable illness and disability.
However this does not seem to have penetrated the health and social care community. Instead of offering support and understanding to those with these conditions, there seems to be a culture of disbelief.
This leads to mistrust and therefore a reduced likelihood of compliance and engagement with health and social care, which only increases their disbelief and suspicion.

Out if those that had been taken through child protection proceedings, 18% declared they home educated and the vast majority of them, 83%, had home education used as a concern against them. It has been highlighted in the media recently that education is often failing to meet childrens additional needs and forcing parents into home education, to then use this as a concern against the parents ignores the lack of provision for children with additional needs, disability and chronic illness.

One major point I feel need to be made is that while there are major cuts to health and social care, combined with higher rates of referral to social services, means resources are overstretched. Focusing resources on bullying these innocent families leaves victims of actual abuse vulnerable and perpetrators free to abuse these children without consequence. The results are far reaching for all of society and require a response from the government to tackle this problem and provide all families with the support they require.

If you have experienced bullying and/or accusations of fii then Fiightback may be able to help. They are on Facebook, have an open page, closed page and a specialist EDS page.

Please, if you have children who have SEND or chronic illness and have had positive or negative social services involvement, take my new survey

And sign my petition against this cruel practice

Thursday, 1 March 2018

Resources for parents of children with invisible illnesses

Some simple advice for dealing with professionals when your child has a special educational need, disability and/or chronic illness

1.Seek out charities and local organisations that support your child's conditions, so that you can gather as much advance information as possible.

2.Do not trust anyone, may seem dramatic, but they aren't your friends and its not their child who is ultimately affected. At the same time, be polite and smile and try not to elicit any bad feeling from professionals or show distress, however upset you are.

3. Record all meetings and visits, things will be recorded wrong, whether by genuine misunderstanding or falsifying information  make sure you can prove what was said if needed as your word is immediately less than a "professionals".
If you ask to record anything, you will probably be told you can't, but that is also false. Please see the downloadable and printable book on this website.

Where do you turn when you are let down by doctors, schools and social services?
The answer is simple, we help each other! Most of these resources are set up by parents who feel they are let down or victimised by the system. Others are charitable organisations.

Transparency project website (ref above) clear, easy to understand advice on family law.

Tymes Trust (The Young ME Suffers Trust) offer support and helpline to parents and hands on help with false allegations of child abuse

ME Association, offers support for all those suffering from or caring for someone with ME

Parents of Children With ME/CFS Facebook group, support group for parents caring for children with ME and the many problems that arise

Fiightback EDS Facebook group, set up for parents facing false allegations of child abuse and or FII in children with EDS, but open to other invisible illnesses

Home Education UK, Facebook page and group, General Home Ed support and chat

Ed Yourself, Fiona Nicholson, Home Education Consultant, has alot of knowledge and expertise in the area and will actively support if needed.

Pop Art Facebook Group, discounts in subscriptions to online resources for home educators

Home educating our special needs children Facebook Group, for all extra extra needs

Home education  and PDA Facebook group, specific to PDA

Your local SEND group and home education groups can provide valuable insights into dealing with your local hospital/local authority

NISAI online college, we used NISAI for a short while, for reference, 2 GCSEs is £1000 a term 5 classes a week plus homework. After 15 (non consecutive) days off from school for chronic illness the local authority is legally required to make opportunities like NISAI available, but you will have to fight for this legal right because it is expensive.

Other online schools are available  apricot, inter High and others.

Not Fine In School school refusal Facebook group

School Refusal support Facebook group

Parents Protecting Children Facebook page and website, resources regarding dealing with aggressive social services

Local SENDAISS team, can attend meetings and help to pull support out of unwilling teams

YAS Youth Advocacy Service, to ensure that your children have a voice in proceedings (unless your local council has blocked such services and instead provides an "in house" service)

Council for disabled children have made a legal handbook available for free as a pdf

Please remember to always double check any advice and information given to you by social media to ensure it is correct before acting on it