Barriers to education for children with Ehlers Danlos Syndrome

Ehlers Danlos Syndrome is a genetic connective tissue disorder characterized by pain, frequent dislocations, and fatigue. In many patients it affects the vascular system leading to cardiac and bleeding issues.
I undertook a self selecting survey about the support children receive in the education system when dealing with EDS/hypermobility and got 273 respondents.

Of the respondents, 54.1% of respondents children had a diagnosis of EDS, 37.4% had a diagnosis of hypermobility and the rest were suspected or under investigation.



The majority of children, 60.4%, were receiving and education in mainstream school, 11.5% home educated, only 2.6 non mainstream, 9.3% were in college and university. 
When a child has a chronic illness and takes more than 15 days off education, (they dont need to be consecutive) they are legally entitled to alternative education like medical school, online education or  home tutoring funded by the local authority. However, only 2.6% had online education or tutoring provided by the local authority and a tiny 1.1% had secured a place in medical school. 

A worrying 3.7%, ten children, were not receiving any kind of education at all.


Attendance can become a problem if not appropriately managed in children with chronic illness and disability. Schools are pushed to attain high levels of attendance in their students and in turn offer students rewards for 100% attendance. This is a contentious matter amongst those with chronic illness and disability as 100% is impossible due to medical appointments alone and no fault of the student. 
Happily, 44.5% of respondents had encountered no real problems with attendance issues and medical absences were marked as authorized absences. However, 16% (42 respondents) had received warning letters, 6.8% (18 respondents) had been threatened with prosecution, 2.7% had school raise "concerns" to social care for medical absences and 0.8%, that is 2 respondents, have been prosecuted for low attendance, which can include a fine and possible jail time.

Home education is one possible way of supporting a child with chronic illness or disability in a school system that puts so much value on high attendance. Currently home education is in the firing line and there is a bill making its way through parliament looking to develop a register of home educating families. This is down to ideas that home education is sometimes used to cover up abuse or indoctrination into extremism. However in many cases, home education isn't even a choice. Out of our respondents that home educate, 49.2% felt pressurized into removing their child from mainstream education, 33.9% removed them because they felt that education wasn't meeting their needs and home education would be a better option and only just under 17% electively home educated. That means that out of 2734 respondents, 10 are electively home educating, so elective home education remains very ,much in the minority, but is being seen as a way for schools to reduce numbers of children with low attendance, or being used by parents of children unsupported in the school system. This is despite, as I have said,  it being law that any child who has 15 or more days absent with ill health should be offered funded home tutoring. It is illegal for local authorities and schools to refuse this, but many still do due to budget concerns. 

One way to support children with chronic illness and disability to remain in education is through a Education and health care plan (EHCP).
EHCPs are put in place for children who have extra needs and replaced the SEN register, EHCPs were supposed to encompass physical needs as well as educational needs in order to better support children and young people, up to 25, to access education. Of our respondents, only 26.2% had an EHCP in place, 6.7% had one in progress. A large proportion, 38.6% had never attempted one, but worryingly, 13.5% had never heard of a EHCP and 15% were refused an EHCP. More information and support is obviously needed in order to put these in place to ensure that children with extra needs can access education. Health, social and educational professionals need to be pro actively putting forward children for EHCPs which come with extra cash in order to facilitate the childs needs. 





The most important question we asked is "What could be done better?" Many of those that responded to this question were asking for things that are already their legal right, EHCPs, EHCPs being stuck to, home tutoring and online education funded by the local authority and for professionals to take time to actually understand and support children with EDS and hypermobilty. A major theme seems to be societies disbelief when it comes to invisible illness, something that many people have experienced. This should never be allowed to manifest from professionals, particularly those professionals involved with children who have chronic illness and disability. A change in how we as a society view disabled and chronically ill as having less value is desperately needed in order to enable these children to access the education they are legally entitled to.

 I have included all the responses below, but have edited some if i felt their was a risk of identifying the respondent. 

Listen better tools to help 

Get an OT in school 

Understand 

Online school

Offer flexi or part time schooling especially for art and science courses you can’t take online.

Listen to the children

By listening to child and parent concerns, taking them seriously and attempting to meet the needs of the child, rather than dismissing them as ‘over anxious’

We changed daughters primary school as they never met her needs, they threatened to fine for absence even with medical evidence. New primary were supportive, got echp in place and supported her fully. This has continued into senior school. It proves that it depends on the management of each individual school how they deal with each individual case and if the Sen dept are good you are lucky, if they’re not our children suffer, and that’s not s fair system.

Training for staff

Better understanding of the condition and how it differs from one individual to another. More tolerant to my sons needs. He goes to school sometimes having 4 hours sleep and his hands are very mobile yet they expect him to write far too much even when it’s painful. Some teachers are better than others. Frustrating to say the least partly because he looks normal!

More access to online learning

Be more efficient. To arrange and have meeting with the relevant people to put a plan in place at the school took almost a year, way too long and my son's education suffered as a result

More flexibility eg school sixth form would not met her drop an ‘ A’ level ...

Feedback

Knowledge of how hypermobility affects folk

by acknowledging  he has over bending joints which cause him pain.

Removing the ‘padding’ - non essential things

Learn more about diagnoses...Change policies to authorising absences for medical appts.

Understand better about conditions at how can worsen in puberty and as child as another diagnose put echp in place

With more understanding and knowledge,

More breaks in the day

Think at times could do with reduced hours

Communication between medical and school better

Better systems for providing work to be done at home and keeping track of where he is in the curriculum. (None of his teachers were able to tell his new LA tutors where he was up to and what he needed to cover.) Also LA home tutoring to kick in earlier. My son was at 30% attendance and they still said he was attending too much to get any support!

Very hard slog when my child was at school. I was continually polite but firm. My daughter wasn't believed some of the time and had support taken away from her but in the end I went to the LEA and they supported my daughter. They set up meetings every 6 weeks and acted as a mediator between school and us they were very understanding and supported my daughter fully, believed physio and drs reports and implemented lots of assistance. She got 50 % extra time in exams (she is dyslexic too) a reader, rest breaks, iPad, travel bursary to get to school as she was walking 2 miles on crutches when I had to go to work. They started an EHI C but she left for uni. Uni have been great about her absences as she has been in hospital several times this academic year with recurrent infections and had surgery. Despite this she has caught up the work with the right support and her motivation and has got a first in the first 2 years of her degree. Proud mum.

not waited for 2 years for an education

The EHCP could actually work!! It was only put in place (via tribunal)  but hasn't been stuck to... the school have done nothing in the EHCP. LA have been great in providing e-learning though.

By listening to us with regard to his basic needs, supporting him, helping with EHCP instead of hindering.

By listening and not just trying to get what they want rather than what is best for my child

Training professionals, about hypermobility and the difference between hypermobility and hypermobility syndrome/EDS, all professionals that come into contact with children, our child was in a special school, all I can say is they hurt her, traumatised her, she now has a fear of schools, being left, she suffers OCD, attachment issues, as well as her HEDS and other rare syndrome

Better way of catching up on missed school work

understanding and accepting medical needs

Better understanding EDS so he is not accused of lying about his condition and the pain that goes with it

They could try reading consultants letter about not making him do contact sports, every week we have calls from school wanting to know why he doesn't play rugby/football etc.

Better understanding by ALL agencies, flexibility of funding options, more online options

Lockers for storage of all the things they need, for those children who have a diagnosed condition - there's a lot of weight to be carried to and from school every day, on public transport, especially with musical instruments, PE kit etc as well as everyday books, pencil case etc.

By sending more work home when she is absent

More understanding of hidden diseases.

By understanding that the same condition doesn’t mean exactly the same symptoms.

Be inclusive, follow the health plan, believe the young person and accept they may need alternative support.

Better understanding of this condition for a start. How EDS affects not only joints but other bodily functions like PoTs and MCAD. Obtaining a EHCP and having home tutors when off I’ll with fatigue or pain will be a huge benefit to children struggling in full time education. Stop blaming parents and reporting parents to SS. This is emotional abuse in itself. Parents need much more support with children with these complex conditions.

Still need a bit more understanding of illness.

Provide emotional support, work when away from school & generally be all Inclusive

Understand the condition more. Authorise hospital appointments even if they have lots. Understand that everyone with the condition is different.

More believing of parents so that they then support the child accordingly instead of blaming the parent and leaving the child to fail

Lots of support has been given at uni already

Providing a tutor years ago

Flexible timetable and EHCP and suppport

Flexible time table

Listen and actually help the child

To provide funding for those in home education, to sit exams as and when they want to. At the moment home educators are forced to pay for exams out of their own money, despite paying for the school education and exams through our taxes. Equality should be for all children, who’s parents have paid their taxes for it!

Automatic help instead of having to apply for extra funding and proving all over again your child is disabled enough to need extra help . I did homeschool for a year but needed to put her back into education to do her gcse . Her attendance was that low she wasn’t even entered for them . Now she’s at college it’s the same all over again redoing her gcse . No one understands EdS

Give them enough money to make the changes to the school buildings that they want to!

Believe parents about behavior at home

Listening to the parents

Learn about the condition would be a start

I chose to home educate but can see from friends’ experiences that school would have been a nightmare to navigate with my daughter’s needs. Out of interest I calculated that by March this year her attendance would have been 45% had she been at school, possibly less as this was a reflection of what she couldn’t do that would normally be ok if she was well.

The current school is brilliant with a care plan in place a echp isn't always needed . However, the last school were only interested in getting money from her

More understanding of invisible disabilities

Actually help the child in the environment

We never knew we could have got home tutored. They refused to provide work too

they have no understanding how this affects children on a daily basis most of them dont want to know how it affects them

Be flexible and recognise that each child is different and has different needs.

Seriously considering Home Ed as daughter has been out of any formal school setting for three years in September 18. Had to move schools as they disbelieved us and blamed me,

Provide a,safe environment and understand lower attendance. .

Not enough support or funding

I feel we are very well supported

Both my children were referred to SS for emotional abuse. One is diagnosed Jhs and the other hEDS. Oldest is now 18 and college are much better, no EHCP but they are more understanding and she is only there part time so manages better than at school.

Understanding there limits especially fatigue

Making appropriate opportunities for rest breaks during lunch etc - they are good as far as corridor pass, lift pass, variation to uniform all given.

If people were more aware of the condition and how it can affect them, they may be more accommodating and not just scared of what could happen and deal with things as they do happen.

More contact whilst studying at home due to poor health.

Greater understanding of fatigue, anxiety, mast cell reactions, pain with hEDS. Greater awareness of invisible disability that ebbs and flows in severity. Greater acceptance of long term health problems on mental health, particularly predisposition to enlarged amygdala and anxiety.

Inform the parent that their child should have an Individual Healthcare Plan

Better education for teachers. Better understanding of absence due to illness. Help and support for those in education. Funding for those who home educated children with chronic illnesses. Support for those who are home educating from authorities in a positive way.

I found private school more understanding.

My child aged 15 has only had a few issues with EDS so far so has not impacted on her education greatly.

Quicker process with LEA and School for Home tutoring

To be more informed about the condition and how it affects our children on a day to day basis, for 3 yrs I had to fight to get help for my daughter and at times I felt very lost and alone , but I joined support groups self educated myself on the condition and effects . And it became easier . Main stream school should be educated on the physical & mental health effects of these conditions on our children and be able to support their pupils .

I found that private school was more understanding. Social services became involved whilst at mainstream as they did not believe/understand eds issues. She is coping ok at uni. Still has extra time for exams etc. With consultant support.

More educated in illnesses and asd

Not to judge what they cannot see and listen more.

Just a basic understanding that’s non judgemental. It’s so hard age but be seen lacking would be a start

Be aware that tiredness is not due to not sleeping properly and give extra support for this.

have believed her when she said she was too ill for school and not labelled her a school avoider. they reported her to social services, who dismissed it but it did a lot of damage to my child, more emotional/mental health issues now.

Stop acting like attendance is all a child has to offer.

Better communication (willing) with parent/carers, lower numbers, listening to needs, not shouting or humiliating children in front of their peers, not repeatedly accusing them of 'making it up' when they can't understand the work and ask for help - especially when there are medical reports and evidence of very low memory processing difficulties. Not taking away supports that are already in place and working, recommended by professionals and child wants because the teacher feels it's not appropriate. Floating TA between several children if they are struggling, exception from spellings or anything that lowers confidence when they are repeatedly scoring zero, it just crushes self esteem. Don't continually ask children to write the same piece of work out 9 or 10 times because it's "not good enough" when they are proud of their final piece in that batch, praise rather than say it isn't good enough, don't then stamp it as independent work when you've intervened on each attempt - because that's not independent. Finger tips flex which makes it really hard to write, he should have been given a laptop or allowed one to be used but the teachers wouldn't allow... could go on - sorry a sad old situation! Happy now in home ed!

Classroom and toilets were up a set of stairs - some days needs wheelchair. Low numbers work well but the children in provision were varied, many having very outward autistic behaviours. My child also has autism but tends to go inward. He found this really unsettling. They did provide laptops which worked well. No adjustments on PE, although it was individual e.g. using gym machines, it could still be high impact on ankles etc. No flexibility on days if very fatigued or quite area to go and lay/sit in.

Have a better understanding of illness and how fluctuating it is.If more support and my daughter not continually been questioned on symptoms I wouldn't of felt the need to home educate her.

Not record absences incorrectly. Not prosecute parents who's children are under hospital awaiting diagnosis. Not refuse access to senco. Not lie about referral to Social Services. Not lie about EHCP. Read and act on all medical reports sent to them and record facts and meetings accurately. Pass documents and reports on when child progresses to middle / upper school. Inform all involved teachers of childs condition / status (better internal communication) and agreed support. Actually implement agreed strategies and support. Ensure work is sent home when this is agreed. Not withold information on support and concessions available. Refer to agreed appropriate supporting bodies timeously, especially when approaching GCSE. Not belittle or humiliate child for their condition or difficulties. Promote inclusion by peers as well as by staff. Act immediately on bullying and intimidation (by children and staff). Educate staff on lesser known conditions such as Ehlers Danlos. Listen.

By taking time to understand her issues and pay attention to what that means.

More awareness of what eds is and day to day issues and effects it has on the child.Took a long time and me insisting on meetings with her health professionals before they would put anything in place. This was despite letters with recommendations from her OT,physio and consultants. It was a constant battle as was an invisible ish disability. SeNCo needed education in what he was dealing with too as he didn't know how to deal with her as she didnt slot into any of his categories fully.

Increase their knowledge

Through educating children about disabilities that are invisible or variable. Other children have not been understanding and there has been some bullying. Has taken a long time to get good communication with teachers at secondary school. Once we got that have felt supported by school. They have given accommodations we asked for without need for ehcp

Read literature on illness.

More online content so sessions missed could be easily caught up on.

Time out, more understanding of symptoms and effects. Reduced timetable ie PE and other non core Lessons so can rest. Quiet area for rest or time out of noise busy pushy environment.

Having a 'Plan B' such as work for at home when he cannot attend...at the moment this takes far too long to organise.

Follow the advice given by the physio & Occupation Therapist, limited funding means school cannot meet her needs and she has been refused an EHCP so we are in a no win situation.

Funding from EHCP needs to be used for my child. School only providing funding for Maths/Eng despite being given adequate funding from LA to cover more online subjects with Nisai.

Why home educate?

There are many reasons to home educate and many families never intend to use the school system for their children. This is about my choices and reasons though.

Funnily enough, I have encountered alot of negativity over my choice to home educate my son, but not my daughter. My daughter is severely ill and mostly bedbound with ME, so obviously I should take on the responsibility right? Well wrong, it's still the school systems responsibility to educate all children and any child that has had 15 days plus off with an illness is entitled to home tutors or funded online tuition. This is a legal requirement and its illegal for them to refuse, like hundreds of other families, we were refused this.

My son enjoyed nursery school while they were in small groups. I tried to talk to the SENCO about his sensory needs and fear of large social situations. I was, of course, dismissed and offered parenting classes, because its always a failure of parenting and never a failure of the system. Once introduced to a class of 30 pupils in nursery and then a class of 60 in reception (!!) it all became too much. It was still seen as a parenting problem because he would, like many children, hold it together at school and then meltdown before and after school. He was refused assessment and referral to services by the. SENCO because "the form is really long" and "I'm busy with the kids who lick the walls".

So I took him out and was met with a nasty backlash of "child protection" who told me that I couldn't do that, but were very wrong, I could and I have. They stated that unlike my daughter, my son was *physically able* to attend school, so should.

Why should children attend school though? The current school system hasn't changed in many years apart from the banning of beating children. It's still made to produce compliant factory workers, which isnt even relevant to the current and future workforce demands.

My son was 5, he was screaming in distress every morning, wetting the bed on school nights, even vomiting before school after they confiscated his lunch box so he couldn't even have his safe foods (no reason was given).

Now he is back to being the confident. Happy child we know, through the NHS he was diagnosed with Sensory Processing Disorder, but refused an autism assessment, so we paid privately for that and now he has a ASD diagnosis. If there was any way of ensuring those needs would actually be met in the school system then maybe he could return. But why? He is thriving, he adores learning, just finds it impossible with 60 other loud kids around and who wouldnt find that environment over stimulating?

Our school system has become little more than barely functioning free childcare, or child prisons. Merging two classes of 30 so they can reduce the number of teachers. No way you can give a child the attention they need in that environment and if they have sensory problems it's hell on earth for them.

Deregistering a child does not mean you are *taking on the responsibility* of their education. They government never take on that responsibility, the responsibility is always the parents. So when they are forced into a failing school because its the only one with room. When they leave with no qualifications or completely illiterate, it is the parents responsibility. If it was the government's or the schools responsibility they would have to take a good look at the school system. The only thing taken on by the parent when they deregister (or never register) a child from government education is the financial responsibility for that education.

And of course, constant criticism from the local authority and ignorant people.

2tired and a (not so much) toddler

Affects of child services involvement on families with SEND

I undertook a survey on the affects of the involvement of social services on families who have children with SEND.
The survey ran for just over a month and I received 113 respondents.
Overall, 33% of those surveyed were threatened with child protection and 30% were threatened with removal of children. However only 38% of those threatened with removal of children suffered actual court proceedings seeking to remove children. Within those surveyed 19% suffered court proceedings seeking to remove children.

A significant point I would like to share from the results of the survey is that 30% of those surveyed originally asked for help. Out of those who approached child services for help and support;
25% were threatened with child protection proceedings
32% were threatened with removal of children
41% were directly accused of FII
66% were indirectly accused of FII (concerns raised for seeking 2nd opinion  seeking diagnosis or knowing medical terminology for example)
31% of those that approached child services for help and support had their children removed.
The long term consequences for those approaching child services for help are overwhelmingly negative.
34% of parents asking for help developed mental health problems due to child services involvement
43% of children in those families developed mental health problems
38% of those families developed financial difficulty due to child services involvement
31% experienced relationship breakdown
38% of children experienced a worsening of their condition
Only 6% of families asking for help found that their child's condition improved and only 3% experienced an improvement in family circumstances
Other consequences for the families who asked for help from child services were, isolation, stress, long term fear and mistrust of professionals for both adults and children and worrying, forced contact with abusive non resident parent.

For the 41% of families directly accused if fabricated and induced illness, a concerning 75% had adults with special educational needs, disability and/or chronic illness. 39% of those directly accused had a child with EDS (Ehlers Danlos Syndrome), 11% had a child with ME, 22% had mental health problems, 35% had SEN, 13 % had ADHD and a very worrying 43% had autism.
58% of those directly accused of fabricated illness felt proceedings were a direct result of complaining about services. There has been many recent news articles about how services like school and health are failing our SEND children. It would seem that the consequence of daring to complain about poor provision is to face accusations if child abuse and fabricated or induced illness.

Only parents who have been accused of fabricated and induced illness can really say how far reaching and completely devastating these accusations are. Within those families accused of fabricated and induced illness;
51% of parents developed mental health difficulties including PTSD
52% of children in those families  developed mental health difficulties
48% suffered financial difficulties
26% experienced relationship breakdown
52% saw a worsening in their child's condition
39% saw a worsening if adults condition
59% felt it was difficult to access medical care due to previous FII accusations
Other consequences included, collapse of business, loss of house, lost career, children scared of professionals, fear of attending appointments, distrust of professionals and children terrified they will be removed from their parents, being "bullied" into treatment that they felt was inappropriate or told to reduce use of services.
21% of those accused of fabricated and induced illness had their children removed.
The scale of this problem is huge, compared with the estimated scale of fabricated and induced illness, which I spoke about in a previous blog.

Even within those families not directly or even indirectly accused of fabricated and induced illness, the outcomes of involvement of child services are less than positive.
32% I f those not directly or indirectly accused of FII developed mental health problems
18% of children in these families developed mental health problems
18% of families suffered financially
23% suffered relationship breakdown
27% saw their childs condition worsen
27% saw an adults condition worsen
Only 9% saw an improvement for the child
Only 14% saw an improvement in family circumstances and only 5% saw an improvement in housing.
Other negative consequences for those families was isolation, fear of professionals and family stress.

The survey was shared on twitter and many non geographical Facebook groups. Most local authorities featured only once. However some seem over represented.
Northamptonshire accused one family directly of fii and 4 indirectly.
Hampshire accused 2 families directly and 3 indirectly.
Nottinghamshire accused 3 families of fii and indirectly accused one other family.
Warrington accused 2 families indirectly and 1 indirectly.
Rochdale accused 2 families directly and one indirectly.
Lancashire accused 2 families directly and 1 family indirectly.
Conwy, Durham, Leicestershire and Hertfordshire all accused 2 families directly of fii.
This is a very small survey, but I think there are some significant "hotspots" where families with children who have SEND are more likely to find themselves facing accusations of fii. Whether this is due to poor services which result in more complaints, or attitudes in the local authority and health trust I couldn't say.

If you are experiencing direct or indirect accusations of fii please join Fiightback Closed Group on Facebook or look at my list of resources for help.

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

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.

http://www.transparencyproject.org.uk/guidance-on-parents-recording-meetings-with-social-workers/

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)

http://www.cerebra.org.uk/help-and-information/guides-for-parents/dla-guide/

Council for disabled children have made a legal handbook available for free as a pdf https://councilfordisabledchildren.org.uk/help-resources/resources/disabled-children-legal-handbook-2nd-edition

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

So your child has ME/CFS

You may feel that a diagnosis should be the start of the story with the doctor, but sometimes, when it's a chronic illness, they believe it's the end. This can leave you feeling abandoned and that your child has been failed by "the system" and you'd be right.
Myalgic Encephalitis has been called many things over time. ME, CFS, hysteria, laziness, multiple psychological disorders, yuppie flu. As society we don't recognise those who suffer for years, we see those who have big operations as brave, who fight cancer as warriors, but to endure 24/7 suffering with no hope is sight is seen as an annoyance and one to be dismissed as fictional. No one wants to believe that something that you can't see, cant measure, won't show up on an x-ray or blood test, can rob your child of years if their life and have no real treatment or cure.
I'm sorry if that sounds bleak, but you may be here for answers and I want to give them to you. ME can feel bleak, because society and the medical community at large will not help. There is a massive lack of investment in research into the causes and mechanisms of ME. That isn't accidental, it's part if a wider dismissal of the disease by scientific communities.
The World Health Organisation (WHO), National Institute for Clinical Excellence (NICE), Department of Health and NHS all recognise ME as a physical illness. In reality, it is seen by many practising physicians as a psychiatric condition, a common theme you will find is that people believe you can simply "pull yourself together" and be well.

The one main symptom of ME that is recognised by most is Post Exertional Malaise (PEM). That means that when you exert yourself in any way (getting out of bed, brushing your teeth, walking) the malaise or fatigue felt afterwards is several times that of someone who doesn't have ME. This is best explained by the spoon theory. Spoon theory claims that most people have a supply of spoons to get through the day. A well person's supply is not infinite, but is very high and rarely runs out unless they undertake boot camp or a marathon or other extreme task. Someone with ME may only have a few spoons between 3 and 10. Getting out of bed takes a spoon, getting a shower would take 3 spoons, making a meal is takes a spoon, getting dressed takes a spoon. That's why you won't often meet alot of people with ME. You can easily see how having so few spoons and needing so many to just simply get ready and fed, getting out of the house becomes impossible. Some people with ME may have 20 spoons. They may have a part time job or go to school. Compared to a healthy person who may have 100s of spoons, they are severly limited in attempting a "normal life". What happens when you run out of spoons? You may ask. Nothing. Nothing can happen if you run out if spoons. Where ever you are you will be unable to sit upright, totally unable to walk, many are unable to talk. This is called a crash and many people with ME are familiar with this.
This is where pacing comes into things, because you need to open your eyes and be able to assess how many spoons you have today. A key point of ME is that your spoon supply will vary day to day. So you need to draw on your personal experience of ME and think, "How many spoons do I have?" Then plan the day around that spoon supply. Ensuring you have enough spoons to get back to bed before you run out, or else you will require literally carrying back to your bed. That suddenly doesn't sound so easy when you only get 10 spoons, it's impossible if you wake up with 2 or 3.

25% of people with ME wake up every morning with such a vastly reduced number if spoons, they are severely ill, sometimes paralysed in the legs, sometimes paralysed in the digestive system requiring tube feeding. They are completely bed bound and extremely sensitive to light and sound.

You may see this to a lesser extent in a person who is in a crash. If you constantly run your spoons down and try to use spoons you don't have, you will crash. This leads to worsening symptoms of ME such as nausea, vomiting, muscle pain, headaches, sensitivity to light and sound, uncontrollable tremors, difficulty controlling body temperature to either extreme, general flu like symptoms. This miserable mis-management of ME will drive you into more and more severe ME until you could end up as one of the 25%.

Unfortunately for many children with ME, the above mismanagement and misunderstanding of "spoon theory" is exactly what they are prescribed to "cure" ME.

Graded Exercise THERAPY (GET) is the official terminology and it involved increasing exertion by 10% every week. Every single week, ignoring how many "spoons" you have, how bad the Post Exertional Malaise is, even if you crash completely. There is no mercy for increasing symptoms and the steady decline into severe ME. Failure to get well from GET is considered to be due to failure in the patients part, refusal to comply or labelled as ODD or other psychiatric illness.

GET comes from a trial which reported to show improvement in patients with ME. These results have been shown to be fraudulent. Faked to gain notoriety and financial gain. This has not stopped them being rolled out across the NHS as a supposed treatment for ME. The ME Association did its own study into GET and found that for many it does not help and for the majority it causes a worsening of overall symptoms. GET is not accepted by the vast majority of ME charities and advocates as anything but damaging to children with ME. 

In America they have removed endorsement of GET from official documentation and there is currently a review of the British NICE guidelines that recommend GET as a possible treatment option for mild to moderate ME. The tide is slowly turning on GET, but that doesn't mean you wont be offered it as a treatment plan for your child with ME. When what they really need is rest and tlc, since there are currently no treatment or real understanding of the causes of ME.

CBD oil for fibromyalgia

Having been seriously ill multiple times in a short period of time, I have been left with fibromyalgia. A condition that causes chronic pain all over the body and chronic fatigue, I also get nausea, and sensitivity to light and sound. One of my major serious illnesses is having clotty blood, I've reached the stage where the only thing I can do to reduce my risk of clots is  to loose weight. For 2 years I have been trying to loose weight with no luck, loosing a couple of pounds, but puting them back on. Of course doctors, friends, they all think I'm simply not *trying* hard enough. It also doesn't help that due to fibromyalgia and asthma, I can't exercise.
I decided to take a risk and wean off pregabalin as there is some evidence that it can make it hard to loose weight. I was on 100mg twice a day and still in a lot of pain, so this was quite a scary prospect. I reduce steadily down each week decreasing from 75mg, 50mg 25mg and then nothing. Through those four weeks I lost weight every week! Something I have failed to do for two years! I have lost a total of 8lbs in four weeks due to weaning off pregabalin, but the pain was unbelievable.
My hands and feet burned to the point it was painful to type, I couldn't cope with daylight at all, every sound was multiplied like one permanent hangover. My whole body ached like I was coming down with the flu. The chest pain was the worst though, I have scars on my heart and lungs from having 50-60 clots and chronic chest pain, it felt like I was having a heart attack 24 hours a day. I longed for bed, but it was like lying on rocks and I couldn't sleep.
Desperate I posted in various places, I was desperately upset, the pain was huge, but I was loosing weight and with it, the risk of a fatal clot was also dropping. A good friend of mine suggested CBD oil and I decided to give it a go.
CBD is cannabinoids and is a *legal* extract that is used as a treatment for many different conditions. Being skeptical, I didn't expect much, but willing to give anything a try, particularly as CBD Brothers were kind enough to give mean free sample.
I popped a drop under my tongue and waited for it to dissolve, the taste is not something enjoyable. It tastes exactly like you'd expect mown grass to taste, not pleasant at all! Soon however, it was all worth it as I felt my body relax and the pain dissolve! I have been taking a drop of CBD oil twice a day and I can honestly say it has completely replaced pregabalin. Of course I'm still in pain, I'm still fatigued,but only as much as I was on 100mg pregabalin twice a day. 
I have no idea how it works, but I can honestly say it does. I'm just hoping the weight continues to come off!