Thursday, 3 May 2018

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.

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

Friday, 19 January 2018

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.

Saturday, 16 September 2017

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!

Sunday, 18 June 2017

My heart is breaking

"My stomach pain is 3/10 but the muscle pain is 7/10"

I know what that muscle pain (myalgia) is like, I have struggled with it daily for the last few years, maybe you too know how bad it is. Maybe you have had 'flu and you felt every muscle in your body scream and ache, that's what we are talking about.

But not in my chronically ill broken body, not a friend, but my sweet, funny, kind, teenage daughter.

I know what it is like and I don't know if it makes it better or worse, I know the feeling of sleeping for 10 hours and waking up exhausted. Feeling like your warm, soft bed is full of rocks, feeling like you have run a marathon, when you have only made it to the bathroom. I would gladly double my load if only that my daughter didn't have to go through this too.

We are full of hopes and dreams for our children and those never include chronic illness and suffering. We worry about them getting into trouble, not doing well at school, not making good friends, getting sun burnt or eating too many sweet and getting a cavity. Something we never see is months or years lost to being in bed sick, weekly hospital visits and them getting used to blood tests.

Then she starts to get used to being in pain. I ask her several times a day "How is the pain?" unless I press her beyond answering "OK" nobody would be able to tell that she was really suffering, so I adopted the hospital 0-10 pain score. She lives in between 3-6 out of 10 and only ever gets upset when it climbs past 7. It feels so wrong that a child should be used to pain and able to cover it up on a day to day basis.

Worse than the pain, worse than any of it is when the doctors don't believe you, recently a senior doctor at the hospital took me aside and tried to tell me that my daughter wasn't in as much pain as she said, "She isn't rolling around the bed screaming.."

I heard myself respond a lot louder and more assertive than I meant to, "When you live with pain every single days you don't roll around and scream anymore!" I saw the other doctors around flinch and the senior gave up what he was trying to tell me.

Surely any sane person can realise that you acclimatise to pain,  you might start of screaming and rolling round the bed, but a year later, you wont be shouting out, because nobody is coming to help, so what is the point?

This is what kills me the most, its worse than the rest, the missed school can be caught up on, life can be rebuild, but the experience will forever leave scars on both of us.

Saturday, 25 February 2017

Heart Sink

Trying to talk myself out of a panic attack sitting outside the GP office like a naughty student at the headmasters office. I'm waiting for the paperwork for a transfer to hospital and I am, of course, very scared. There are two ways that my appointments usually go, the younger doctors tend to look a bit panicked, the older ones get that "Heart Sink" look.

If you aren't familiar with the phrase "heart sink patient" well lucky you! Its a rather derogatory term for patients that are seen as a pain in the backside and you get that 'heart sink' feeling when they enter the office. If you google it you will find stories of doctors who have these AWFUL patients that waste their time with their (probably fictitious) idiopathic pain. These patients are never *happy*, never get better, just keep coming back! Before you feel sorry for those overworked GPs and their difficult workload, listen to the other side of the desk.

The doctor I saw was less experienced, she started to look panicked as I outlined my worrying symptoms and history. By the time I was finished she has physically moved back from me, like I was an un-exploded firework that may go off at anytime. Still wet enough behind the ears to hope for a more senior person to take this train wreck off her. The obvious choice, of course, being the hospital, they'll know what to do. She is of course making the right decision, anyone this medically complex needs investigation.

I want to make something absolutely clear, this next point is vitally important, please take it in and digest; I don't *want* to go to the doctors and I'm terrified of the hospital. No, I'm not bored, lonely, slacking off something, looking for attention, the *only* reason I would consider going to the hospital is if I *believe my life is in danger*. Four times the hospital sent me home on the verge of heart failure, twice they sent me home with acute pancreatitis (if you don't know what that is, it will kill you if not treated), FOUR times they sent me home saying it was impossible for my condition to have progressed the way I was claiming (which it had and it was potentially fatal) FIVE HOURS I sat in A&E before anyone noticed that I was slowly bleeding to death. Every time I was treated like I was a time waster, mentally ill, attention seeker, I was told that I needed to get serious psychiatric help or that I didn't love my kids and wanted to get away from them. That is abuse, it is gas-lighting, belittling behaviour dealt out by someone in complete control of your life. One night I was in agony all night with pancreatitis and the nurses withheld painkillers for hours and then made fun of the way I was acting "looks like shes about to give birth!". The hospital is *not* a fun day out for me, it is somewhere that I have nearly died several times and a lot of the time, not in the best care. Not that I'm saying all doctors and nurses are like that, not at all. I used to sit on that side of the desk, they're just people, people who set out wanting to help other, people who under the right circumstances easily slip into institutional abuse. People who label patients as "heart sink" or "frequent flyers" and cant see them as fellow humans anymore, just a problem to be passed on as soon as possible.

On a normal day I wake up exhausted and in pain, having had little sleep, because it feels like my mattress is full of rocks. Its not of course, in fact its a relatively new and not cheap mattress, but everything HURTS ALL THE TIME. After several complicated conditions my body has had enough and rebelled, now I have chronic pain and fatigue. That's how you become a "heart sink" patient, you survive. Maybe you get through one particularly traumatic accident, or an all too close health scare, you pick yourself up and dust yourself off. The doctors involved in saving you get a well deserved pat on the back. Perhaps you are even interesting enough to get a case study written about you and all the student doctors want to talk to you because you are such an interesting specimen. You take yourself back to work, whatever your daily routine looked like before and you are happy to be alive. You are a success story!

Then, a few month or a year later something else happens, you nearly loose your life again. It takes that bit longer to get back on your feet and you don't feel able to do quite what you did before, there are complications. After two close calls where you were fobbed off as "over anxious" you become a self fulfilling prophecy, becoming anxious about health concerns, about every time you need to see a health care professional. You end up sitting outside the doctors office trying to talk yourself out of a panic attack, because you know once you panic, or start to cry, you loose all respect from the doctor and become a problem no one wants. An over anxious, crying, hysterical woman with a complicated medical history.

So why do I keep going back to the doctor with constant complaints of fatigue and pain  and other conditions that never get better? Well because, I remain, as a fellow "chronic" said to me, 'defiantly alive'.

2 tired and a toddler