It seems to me *open and transparent* are becoming buzz words with no real meaning, along with *patient safety*.
Sir Andrew McFarlane gave guidance on reporting in the Family Courts and asked for views so I thought about how we as women and as mothers are treated and viewed when we try to protect our children when they have
I am a layperson and not a
professional – my own experience and unique knowledge of what happens rather
than what professionals understand and what statistics seem to portray - needs
to be respected and presented so that the family courts are able to see the
whole picture, not just a part. I firmly believe the courts should be as open
as possible and that it is important that journalists are allowed to report in
a proper and safe manor.
Through many complex medical
conditions Fabricating or Inducing Illness (FII) is being used as a weapon
against mothers in two ways - first to control and the second to hide failure. I
will be mostly, but not exclusively talking about one multi system disease
hidden and abused in this way called Malayic Encephalomyelitis (ME). I advocate
and support those families that try to navigate the system that is more
designed to entrap them into FII then to put the child at the centre of care
and wellbeing.
There are no known cures for ME, no
biomarker and the normal treatments given by the NHS are known to harm and turn
a moderate case into a severe case (1) . There is no understanding of this
in the medical fraternity as a whole. Severe ME has been equated to the end of
life of AIDS patients and many who have suffered AIDS or Cancer say they would rather
have those conditions than ME. Yet most, if not all doctors are unaware of the
severity of pain or possible harms as they are not reported (2) . So how can professionals come to
court and express what ME is and why it is vital to understand Post Exertional
Malaise (PEM) (3) ?
It is true NICE are taking down
current guidelines and looking at ME again. I go into this further on.
The way FII is now implemented puts
all parents under threat, loose terms of “Possible Emotional Harm” can be used
in a multitude of ways (4) . This leads to unrealistic
expectations of behaviour by the professional on the family and the chronically
ill child in their hour of need.
As soon as
my child was diagnosed, I was aware I was viewed as the problem - that they
should literally beat me emotionally into shape so that I behave. They can take
me to court on fluctuating grounds and these constant threats are enough to
break the strongest of wills.
The medical professionals make it clear - I must know my place and not
respond with the truth or my child’s reality, as this is deemed a negative view
that impacts or imprints on my child’s physical and mental health.
I must know how to treat my child and emotionally support the medical,
educational, and social professions as they sadly flounder with my son’s
reality.
I must be able to let all authorities know when my child will be ready
for school, even though the medical fraternity are in dispute and my child is
not being fully diagnosed.
I must accept that “do no harm” has been flouted for decades.
I must be prepared to push my child beyond his endurance and stand
quietly by as the uneducated or miseducated professionals, threaten me and my
child with the court or the mental health system. That harm is never recorded
and is never ending.
I must know the procedures of court, mental health act, education,
medical and Social Services, even though the authorities do not, yet am
threatened because I do.
I must be able to use the pathways that are confused, disjointed and
convoluted, while some professional’s cherry pick to turn everything against me
and protect themselves.
If I know and assist the professionals that are wrapped around my child’s
care, I should be viewed with suspicion and those professionals I have helped
or informed targeted too.
I must understand the words and the meaning of that professionals’
discipline. However, if I start the conversation with those words I am to be
viewed with distrust.
They can infringe on my social media and twist everything I say but if I
point this out, I am being obstructive.
I must not come across too anxious but if I show lack of concern that is
a problem too.
If I look for information on my child’s illness - I must be trying to
manipulate the medical fraternity.
If I don’t look up the illness - then I am not showing enough concern or
leave my child to be misdiagnosed and mistreated.
If they take me to court, I have no defence against that plethora of
misinformed professionals, who each have their own legal team and do not
necessarily have to have had contact with my child.
I am demonised before I have chance to defend myself.
How can I make sense of it all?
My views, my innate parenthood denied, and my reality stripped while I
am gagged by the court (4) .
This all goes on in front of my son as though he is an object of no
importance. The family courts along with learned professionals that have a
comfort curtain around them, takes his voice away. My son, who I have taught to
be proud of who he is, to battle against the stigma of his chronic illness, who
is honourable and truthful and through all that he has gone through, be hopeful
things will change.
My son’s beliefs, dreams and personality has not changed, his body has.
No professional sees that apart from just one who knew ME and PEM. My son who
would walk before he could crawl, who would run before he could walk, climb
trees, ride his bike with his hands in the air, is the same child who is
isolated in his room, unable to dress some days. He is more crippled by the
professionals than his disease, that takes his ability to produce enough energy
to make movement free and easy and without pain.
I have had to listen to his questions and try to answer them as best I
can.
“Why do doctors hate me so much?” My answer goes along the lines of -
Hate is a strong word my son, they don’t hate you, they just don’t understand
ME and PEM.
“What do I have to do mum, for them to understand that I am ill, die?”
This one is particularly difficult to answer because young people have died of
ME and yet still his disease is not taken seriously. What would you say? Who
has the right to say what threshold of pain a child should have for any illness
or how long they should endure that pain - let alone add to it by complying
with the wishes of a few?
I am the mother of a 14-year-old hero of ME (5) . My son’s disease is not understood
by the medical profession, in fact it is not taught in medical schools. This
disease has been deluged with miss and nonsensical information (6) . If the Doctors do not get the
correct medical training based on the facts of the illness, they cannot
diagnose, give a balance so that parents can make an informed choice and duty
of Candour is not possible (7) Dr Muirhead only found out about ME
when she came down with it (8) . Where does this leave the family
courts?
When a young person such a Gigi who less
than a year ago was full of life and vibrant came down with something (no test
to find the cause) and slowly lost her ability to move or digest food, her
condition was not taken seriously. In less than a year she is bedbound and
paralysed. She expressed a concern about the treatment advocated to her by the
hospital staff who believed in the so-called evidence-based research and information
they had been given; she was ignored.
I believe they did not follow the NICE guidelines and evidence shows she was right in her concern and her thinking (9) . Gigi explained in eloquent terms how
the PACE trial was flawed science and yet the staff forced extending movements
and removing her mask from her eyes, this was expressly against her wishes.
They threatened her mother with FII and explained they were looking to put Gigi
in a secure mental health facility. When she tried to advocate for her daughter
the staff dismissed her and turned their backs on the decline Gigi was slipping
into and her increasing pain. How scared do you think this venerable young
person feels?
I believe they did not follow the NICE guidelines and evidence shows she was right in her concern and her thinking
Gigi went into hospital being able
to speak and walk aided, she came out only able to give a primal response screams
and paralysed. Yet the staff blame the mother. The emotional impact of this on
all the family members I cannot convey, due to my inability to express through
the words in my vocabulary. There are no words to express the living hell they
are forced to live now. Yet so many have gone before and will again if Gigi is
not heard. There will be no
accountability as there never has been before and the situation will continue
in this status quo.
Gigi was forced back into hospital
and the staff’s regime has not changed. Gigi is unable to object as they
dismiss her voice. And through the mounting threats her mother has to sit next
to her bed and try to advocate for the doctors to read the mounting evidence of
dysfunction in her daughter’s body.
As mothers we know what would happen
to Doctor Dionne Joseph and myself if we were to be taken to the family court
and that is scary on every level. We should be supported by the medical
profession to get the very best care for our children. We should not be
fighting accusations every step of the way. Our children need us to be there
and focused on them. To find a possibility of a very rare occurrence of FII they are
harming thousands of children. 25,000 children suffer with ME in the UK, most
mothers if not all will go through accusations of FII.
When children are taken into care
with misunderstood medical disabilities their lives are put in danger. One young
person with double stoma had their shoe inserts taken, forced to push their
wheelchair into school and abused verbally on a daily basis. They were viewed
as “worried well” an imprint of their mother’s anxiety or control rather than
incredibly sick. They came out of care starved and had no healthcare for the 2
years under the corporate parent. The emotional and physical harm will never be
heard unless they have the funds and capacity to pay for carers and the courts.
They have no choice but to deal with the aftermath themselves.
This young person now has life
threatening curvature of the spine. Who is there to hear their years of hell
and learn from the mistakes made? Is this young person ever going to trust the
system? Will the family court ever learn
from this? How many have been through the care system in the same way?
I promised them and many more like them,
I would tell the courts, healthcare and the all the professionals that will
listen of their experiences as their voices have been stolen. I promised to be
brave enough to write down what happens to them and their families.
Mothers are their safety net, their
advocate, main carers and support. However, we all know, I will in all
probability fall on deaf ears, after all who am I? I am just a mother a
layperson. No professional wants to hear the devastation they cause, and
balance is weighed on the professional side.
You have to protect children that is
true, and you have to make sure their best interests are at the heart of care.
It is the responsibility of all of us to make that happen and that is the
reason I’m sending this open letter to all those who should protect children
with serious and complex medical disabilities, that at the moment are so badly
let down.
Below is an outline of how the
system works against children and some of the history of ME. ME was once
treated with the utmost respect by those that could have taught us so much; Dr Melvin
Ramsay, Dr E Dowsett, Dr Petersfield, Dr A Franklin, Dr T Mitchell, Dr S Myhill
and Dr N Speight.
What the Charities find
Organisations such as the Tymes
Trust are only too aware of the problem of false accusations of FII that are
now daily being thrust on parents and in particular the mothers of children
with this complex condition. As Jane Colby said on the 5th June 2019
“Medical Dogma, blind refusal to accept the reality staring them in the face” this
is the true problem with ME. With now over 225 false accusations and supporting
one family who are now facing a second accusation (10) ; it would seem having a diagnosis
is no protection. Unfortunately, with ME our children are targeted and
penalised for no biomarker. There is no biomarker because there is no funding into
one in the UK at this time.
Action for ME survey 2017 (11) shows the same problem with many
more organisations showing the same picture. The damage done to these family’s
needs to be known, acknowledged and fully understood. Emotional harm can and is
being done by professionals to innocent families and physical harm to our young
people. 25,000 children and their families disbelieved and threaten. Their
family lives not only torn apart by their child’s medical disability; that
takes everything you value in life, but also the surveillance allowed on
personal and private thoughts and feelings.
So, what is ME?
ME is not Chronic Fatigue Syndrome
(CFS) as CFS is any fatigue after or with any illness or treatment; whereas ME
is defined by Post Exertional Malaise (PEM). PEM sets in after any activity
either physical, cognitive, emotional (especially excitement). Once in a PEM
state the impact of other activities deepens the severity and lengthens its
impact. It impacts on a multitude of systems dependent on that individual,
throwing them just out of kilter that causes extreme bodily and cognitive
exhaustion, pain, sensitivity and can be life threatening. It destroys any
normal family life and children have no safe place of understanding to turn to,
their reality gaslighted.
All the usual tests used come up
normal. It should be noted that tests are not infallible; Lymes for instance is
known to be inconclusive giving a false negative. Even though Lymes is caused
by bacterial infection passed on from a tick bite, due to the lack of knowledge
and direction it has become one of the many disbelieved diseases in the UK. Many children find out when they are a young
adult, they have been suffering from Lymes. Just because the doctors are
unaware, or lack skills does not mean the mother is falsifying the pain their
children are experiencing. Mothers asking for or having private Lymes tests are
again under threat due to the new improved safeguarding guidelines.
It also should be noted that there
still is limited understanding of our bodies and all its reactions to physical
or physiological stressors, such infections of different types. “Do no harm”
should be observed when so many share the same journey, even when a test is not
available. The courts need to be given the full facts not just the preferred
narrative. They can only do this if families are listened to. A doctor will
only see a child in the consultation room and not the two days after when PEM
sets in. Therefore, they have no experience of PEM and the devastation it
causes to the body.
ME is a common complex disease that
in 1969 was listed by the World Health Organisation as a neurological disease,
yet 80% of neurologists in the UK are unable or unwilling to look for signs of
white matter loss or neurofibrillary tangles of frontal cortex, thalamus and
basal ganglia problems. New research is looking into the problem of lactic acid
within the brain. I have known many
mothers asking questions of things picked up on scans and yet they are ignored,
and their concerns patted away. Neurologists are led to believe it is more a
behavioural issue and belief, so dismiss what they see. Through the pathways on
NICE they are told not to bother with imaging or testing; therefore, they do
not look, we never learn the different phenotypes and parents left wondering
what the differences mean. When a case comes to court the information is put to
one side and dismissed and the truth stays hidden. Many more are denied tests
of any kind.
ME is said to be one of the leading
chronic long-term conditions that causes absences from schools and yet no
records of numbers are kept. There is no prognosis that is backed up by figures
or disability provision ever reviewed, so no support for those who suffer, and
no funding allocated. The medical profession have been allowed to discriminate
against those who have ME with impunity. The courts should be fully aware of
the history of ME when a mother comes before a judge accused of FII, especially
when they are accused of “possible emotional harm” due to the confusion of PEM
and its impact on ability.
Professional Behaviour Gaslighting and
Gatekeeping
The LeDeR report for those with
learning disabilities (12) shows clearly the failings in the
system of not listening or understanding, with no one being accountable for
their lack of humanity. This causes discrimination. If the families were
listened to, then mistakes would be corrected, improvements made, and money
saved. The family courts need to take on the same sort of system. ME and PEM,
like autism should be well understood and yet they are victimised when they ask
for help from the Medical, Educational or Social professionals in 2019.
Jeremy; Bethany’s Dad showed how
mothers/parents are perceived and blamed for behaviour (13) . How courts can silence and how
unrelenting the pursuit of parent blame is by professionals. Going against a
gaging order he spoke out and the truth is now being show for what it is. Professionals
should be welcoming criticism when safeguarding children and young people’s
family life is about to be taken.
There is an urgent need for the
family courts to be open and transparent, allowing scrutiny and improving
education of the reality of living with and caring for, physical medical
disabilities. Judgements
should never be made when a child’s reality is denied, and their voices silenced.
should never be made when a child’s reality is denied, and their voices silenced.
The curtain of protection around the
professionals needs to come down and the safeguarding of children put at the
centre of family law, health and social care where it belongs. Courts should
take seriously the safeguarding of children against professional mismanagement
and abuse of gatekeeping provision, as this makes our system discriminatory and
unstable. Understand the level of harm it causes, especially when looking at non
evidenced based cases of FII. There needs to be a recognition of the emotional
strain that is put on the family especially the main carer, the frustration and
defensive manner the system evokes should also be acknowledged and understood.
There are enough cases through the
decades to show that children are used as objects, dehumanised by the state and
the corporate parent is letting children in care down. If their chronic medical
disabilities are not understood then how can the corporate parent give good
care, education and emotional support that is equal to or better than the
parent (14) ?
That secrecy and inaction or
delegation of responsibility only protects those who value their good names and
their carers. While those that strive to do the best they can, are leaving
health and social care services in droves and our collective health and
wellbeing is suffering.
The behaviour against Whistle-blowers
or those that test/question the system throughout our health and social infrastructure,
goes to show the systemic power at all cost approach to health and social care
and how politics have shaped our integral workings as a society. When you stop
looking for the mistakes and wrongdoing, is when a system falls apart and fails (15) . It has fallen and is failing those
who need protecting the most.
We all have to take responsibility
and play our part in building what should be or was once in place. Courts need
to openly show how many cases of FII are seen, how many are false and where
mistakes are being made - especially with a multi system and complex disease
where physical health is not fully accounted for. What should or could be done
differently - was “do no more medical harm” considered in these judgements?
Looking at ME as a parent when
deciding what appropriate treatment to give, I have found asking for
information to give informed consent can easily lead to FII accusations. I have
always believed that it is gullible and irresponsible to just accept “to never
question” or not to ask others opinion and experiences but that is what is
expected of you when your child who is very poorly with ME.
The Health and Social Bodies that
say they are there to protect and make sure a gold standard of care for your
child is there - has let them down on every level:
National Health Service (NHS England) (16) Are funding a trial where parents
have to take a course along with the child with ME and PEM is not mentioned. It
may not be their intention to demonise mothers but that is the reality. They do
not acknowledge deaths or severity, so when we talk about our child’s
experiences, the medical fraternity do not understand the seriousness of their
symptoms. They do not take seriously anaerobic threshold and no safeguards with
regards pushing the child into a possible metabolic trap, among other things.
No informed consent could be achieved using this protocol. This FITNET-NHS
trial is important for the courts to understand as it is already being
advertised to GPs as a cure, even before the trial has started.
Why are these trials happening and parents in a
multi systemic disease that is known for an inability to sustain activity, when
even thinking can provoke a prolonged PEM state? Professor Ola Disrik Saugstad who
was the World Health Organisation adviser, compared the treatment of ME
patients to those that suffered lobotomy’s decades ago and stated, “When the
full history of ME is written one day we will all be ashamed of ourselves”.
That was in 2009 and still the treatments are being forced on children via FII
accusations through noncompliance. Everyone states this should not happen but
that is our reality.
National Institute for Health and Care
Excellence (NICE) (17) New committee on ME refused many
world renowned Drs to sit on the committee and have an unhealthy lean towards
those that feel Cognitive Behaviour Therapy (CBT) based on the PACE trial, can
cure the systemic physical and biological changes that have been found through
the decades in patients with ME. Countess Mar has raised concerns about the
research being looked at as “relying too much on old research” and they seem to
be dismissing new findings (18) . This goes directly against the
Duty of Candour. How are parents to have confidence in the system when you look
back to how the 2007 guidelines were objected to by many medical, advocates and
patients, 12 years on and we are still struggling to be heard. 25,000 children
silenced by one small group of professionals.
General Medical Council (GMC) (19) Support and protect Drs only.
Decades of pointing out errors with treatments have fallen on deaf ears.
Hounding other doctors who support patients and not the establishment view is
well known and examples like - waiting 28 years from knowing about the virus
that sets of stomach ulcers to giving proper care, is just one we have long
gone past 28 years with ME.
Instead of looking at all facts of ME mothers
are blamed, children taken into care. Cot deaths in the 80/90s should have
taught us to be more vigilant and hear the voices that say the same experiences.
Still that flawed and unproven theories (20) are held against those parents that
have children with complex medical disabilities. Having such a lengthy period
of denying before the establishment then decides to take a deeper look and
investigate, is really unacceptable when so much emotional harm is being done. 30 years of ill treatment on children with ME
is unforgivable. Professionals also lose the ability to look beyond normal when
diagnosing and the harm continues. A full review of FII research and their
handing of complex cases needs to done.
Medical Research Council (MRC) (21) The research funding speaks for
itself as there is no balance, along with the dates of the meetings it is truly
shocking how little regard and discrimination is shown for a huge population. They
need to listen to the needs of the children with ME and PEM. If you compare
their funding with male pattern baldness it is truly astounding where their
priorities are.
Medical Journals. Need to acknowledge and be made to take down flawed science (22) , (23) (24) letting misinformation compound the
misery of children is unbelievable. Many lives are worth more than red faces.
Reviews in medical journals should not be marked by friends that are working together to protect
each other, silencing the child’s voice, their advocates and parents by name
calling is unprofessional. (6)
Royal Colleges educated by those that have flawed theories and research and do not
engage with the children with ME and PEM also need to be reviewed (25) .
Child Adolescent Mental Health Services (CAMHS) (26) No understanding of how to protect
children with autism let alone complex illness such as tickborne infection as
with Lymes. Yet CAMHS never look at biological cause to mental health. This
shows a constant inability to diagnose or differentiate between physical,
emotional or brain injury caused by disease. If they did healthcare would be
greatly improved. A full review of their involvement is needed. One young girl
in Norfolk pushed from pillar to post and treated as anorexia, not given a
feeding tube and yet had CFS shows how ME is not recognised. What are her
underlying health issues (27) ?
Office for Standards in Education (OFSTED) (28) No mention of Chronic or long-term
illness so those with cancer, ME or rheumatoid arthritis are discriminated
against and not supported by OFSTED. The only place the word “chronic” was
written was to do with attendance “chronic non-attendance”. If ME is the
leading cause of absences in education and no medical professional can
describe, diagnose or treat ME and PEM - then in all probability those with
this condition are going to be targeted and suspected of not complying with
treatment either by the child or by parent.
Special Educational Needs and Disabilities (SEND) are looking to the medical health aspect of disability in the
year 2019 (29) . I would have expected that the
Child Educational and Healthcare plan would have included health in education, before
now. This causes a gap in provision causing many FII accusations.
Children and Family Advisory Support Service (CAFCAS) are working on a false understanding of what ME and PEM is,
and the problems parents have, not to mention the child. They should actively
be seeking clarification and demand more respect for children with medical
disabilities. Who hears the child’s
voice in this? They have constantly pushed for the threshold to be lowered to
have emotional harm in the professional sights, without understanding the harm
they do as a consequence. Tracking children with health disabilities and not
understanding those diseases, takes up vital funds and take resources away from
the most vulnerable children who are likely to be killed and need the most
protection (30) .
Department of Work and Pensions (DWP) (9) The PACE trial was part funded by
the DWP. A trial that will go down in history as a teaching aid of how not to
conduct a trial. This trial has done so much damage both physically and
emotionally to patients. The relationship between medical professional and
patient has been damaged, that has ripped apart families and fuelled mistrust.
All this damage by those that teach and promote Psychological medicine.
The family courts and courts in general are
allowing too many organisations who systematically use FII and wrongly accused
parents to carry on doing so. Closed courts must take full responsibility for
this, as they deny access to all. As no statistics are collated this is hidden
and the abuse of power is allowed to continue. Yet you talk to those
professions around FII and they all agree that there is a systemic problem and
an industry being built around FII accusations that sight emotional harm.
A professional narrative that does not fit the lived
reality. Statistics only dehumanise and data is not fully held, there is no
independent scrutiny. Therefore, facts and the lived reality is hidden.
It is about time all the entwined
organisations are made to join together to protect our children and their
families, when they have medical disabilities. Disabilities deserve the same
quality of health, social care and standing that is expected by us all. However,
the many pathways through the system target health disabilities as FII.
What does this all mean to the child
and their families? Complete and utter devastation in children’s hour of need.
As the family fight for their
child’s human right to be heard and their reality recognised, they are unable
to support their child. Compounding a very difficult situation into an
untenable one, few are able to endure.
I am not unique; my experience
follows a pattern for thousands of children. Each day another family start out
on that same path I have journeyed - it is both shocking and shameful.
I have found over the last 5 years there
is no such justice, respect or understanding of the healthcare needs of several
multi system disabilities. The system requires me to perform not as a human or as
a mother but as a system facilitator, that can be set in a tick box that has
parameters that fit in designated statistics.
I’m one of the parent carers who
represented children, their parents and families to have a voice on the
engagement meeting for the new NICE guidelines for ME. Parents have a
particular difficult time as you can hear in the debate held in parliament in
January 2019 (31) , the previous debate was on the
flawed science (9; 9) .
It is said 1 in 5 of our families are
being falsely accused of FII due to the historic problems of ME, this is
unacceptable in 2019. There are an estimated 25,000 children with ME in the UK,
that is a lot of false allegations based on false information.
The emotional harm caused to parents
trying to protect their child’s health and wellbeing is never considered,
neither the impact of this on the child. The system does not consider the
emotional harm the ill-informed professional steeps on children. No figures are
kept on false accusations and their impact on families and the children
reviewed. Countess of Mar has worked hard to try and obtain balance in the
Forward for ME meetings she holds throughout the year (18) .
FII accusations are made without the
full understanding and impact of ME and PEM. This is astounding as PEM is the
distinguishing mark and diagnostic tool of ME. No harms are reported even when
a steep decline in health is seen. Research undertaken on young children with
no reporting of lost ability and therefore harm and PEM is not looked for or
reported on. Yet mothers are bound and gagged by threats of FII accusations.
Who is there to protect the child? What emotional damage is done to the child
and how do they regain trust in adults afterwards?
There are now very few professionals
that understand ME and PEM in the UK due to the combined working of the system.
How convalescence rest is needed when in a PEM state and why and how
spontaneous recovery; that happens when you have a normal infection or the flu,
does not happen in ME. Due to this lack of understanding ME has been treated openly
and by most that should protect our children with – disrespect, neglect and
ridicule. Over 100 paediatrics attended a MUPPETS day. What other illness would
anyone think that it is acceptable to call children MUPPETS? (32)
We were reassured at the
engagement meeting held at NICE that biomedical research and those that
understood ME and PEM would be involved, we have found that this is not the
case and we are left as parents fighting on every front to keep our children
safe and educate the medical profession who very often feel powerless, which is
shameful.
Receiving an email from the
Royal College of Physicians in charge of overseeing the guidelines into ME I
wrote a response to their call for tender from researchers. They are still not
asking for those that have been falsely accused of FII but have moved on their
approach to children severely affected. They still have not asked those who have
lost their child through ME to add their experiences. I will be sending this
letter to them to show their impact on the courts.
This is my emailed response to
their request:
We believed right from the engagement meeting that NICE was to
engage with children who have severe ME along with the adults, enabling them to
have a voice from the very start. Why has this not happened?
We also believed that mothers falsely accused of Fabricating and
Inducing Illness (FII) were to be heard. These three experiences show the true
picture of the treatment of those suffering with ME in the UK today. These
facts raised patient safety issues and we were assured that every effort would
be made to engage with those who suffered the most.
You cannot make sound guidelines without that true picture.
Without those that are hidden from statistics, due to not daring to ask for
help because of the current climate of patient blame, demonising motherhood and
vicious media assaults on those that ask questions of the medical profession.
On the engagement meeting we thought NICE agreed and
acknowledged the problems and were intent on changing the harm done to those
most vulnerable. However, it would appear they just gave us “lip service”.
To ask at such short notice - a total of 16 days and demand
research in such a manner shows a distinct lack of respect to those who have ME
and their families. It also points to NICE just going through a formality and
this erodes the little trust the ME community have left with NICE.
The stipulation of tender gives rise to serious issues:
1.
A serious lack of understanding
of ME and PEM
2. A serious lack of understanding the research capabilities in the
UK for those with ME and PEM
3. A safeguarding issue to those young people that have been traumatised
by the system.
4. A conflict of interest with those involved with treatments of
CBT and GET and needs to be clearly addressed with researchers putting
themselves forward.
5. Ethical approval needs to be gained.
6.
A lack of understanding of how
the revised NICE safeguarding guidelines have impacted on children with ME on
accessing education, involvement of Social Services, healthcare, and the
courts.
It shows that NICE are just giving lip service to those that
suffer the most. That they are willing to disregard the facts and experiences
of families.
Why is this such a concern? The
National Institute for Health gave funding to those who cannot explain or have
a lack of understanding ME and PEM.
1. Recently
the Royal College of Paediatrics and Child Health engaged Professor Crawley to
carry out a study on severe children and adolescents (16) . This was funded by The
National Institute for Health Research and Royal United Hospitals Bath NHS
foundation Trust. I believe there are 101 things of concern with this study,
but mostly in the abstract severe ME is described as
“Occasionally children are severely affected
which means that they are unable to attend school and rarely leave the house.
They often spend most of their time in bed and can find light and noise are
painful”
This does not
describe severe ME. Severe ME is an inability to breath freely, tube fed,
unable to talk, unable to tolerate light, sound or touch without triggering a
severe and prolonged PEM state. ME can lead to death.
2. In
the British Association for CFS/ME working group on Severe CFS/ME Shared
Clinical Practice Document version 1 January 2017 (33) . Again, shows this
problem of understanding those who are severely affected they state:
“we will define severe CFS/ME in adults as a
level of CFS/ME in which the person is housebound, unable to mobilise without a
wheelchair, or bedridden”
They quote the
NICE guidelines approach.
No part of health and social care is separate, and
this includes the Family Court. You are all joined and need to know each
other’s part to be fully informed and safeguard our children from all forms of
abuse; be it emotional or physical from medical, professional or parent. However,
it is the voices of those that have gone through the system that need to be
heard with urgency.
NHS staff, researchers in CBT and
GET and NICE along with the courts have learnt nothing since Ean Proctor (34) or the loss of
Sophia Mirza (35) who died before the
2007 NICE guidelines and as they were recruiting for the PACE trial. Yet NICE did
not mention this illness can cause death, which for all these years has clouded
the reality of ME.
Merryn Crofts died in 2017 (36) and still NICE are
not making it easy for those young people with severe ME to be heard. How many
more have been lost or near to death due to the lack of explaining the
seriousness of ME and PEM and get hidden?
Jessica Taylor-Bearham (37) , Naomi Whittingham (38) were young and
vibrant children who have battled decades of abuse, all documented and filmed.
Clair Norton and family members are vocal and experienced and yet the courts
will never hear their voices. Unless you have read my account.
When children and their families over decades
have not been listened to by the courts, it shows how deaf professionals can
be. Out of 180 countries the UK are now at 178 (39) when it comes to
enabling an environment for Child Rights. The indicators that these rights are
being upheld include non- discrimination and respect for the views of the
child. Children with health conditions that are little understood are
discriminated against very rarely have a voice. Those voices are there, they
are just swept aside by the system. If journalists do not pick them up, no one
else seems to.
Dr Melvin Ramsey in 1986 could diagnose and
pointed out that if the patient does not convalesce after the initial onset the
consequences could be “Catastrophic” all the biomedical research point to the
fact he was right. He explained about the fatiguability of ME as we understand
PEM today. So why do not the whole of the medical, mental health, educational
and occupational professionals understand the PEM state, so that they can
explain to the courts? Why are the courts not fully informed already about this
illness and the deaths that can occur?
ME is the main reason we are told that children
are absent from school. So why is it so little understood and why so many false
allegations?
Why are we told that CAFCAS has an outstanding
by OFSTED when OFSTED are aware of the deep problems? Why is SEND (29) is in such a state with
lack of understanding of ME as a disability and those three organisations are
linked. Why are they not seeing the discrimination that this illness is steeped
in?
Furthermore, those that promote FII are able to
take my ability to complain about the abuse I suffer away on no reliable open research
that they can be quoted. Clearly, they have got it so wrong with ME and PEM and
after decades of evidence I do wonder what it will take for those professionals
that say they care to give the right protection to our children.
I am unable to move to different doctors to
find one that is competent in a complex field. Unable to complain to PALS due
to everything I do is put under scrutiny. They can use my email to access my
online media platforms and yet the corporate parent is under no such scrutiny
and can abuse, harm and let deaths occur and they are protected as a
professional. Imbalance is my reality and I am one of 25,000 mothers just in
one illness.
There has been no further safeguarding of those
children that die at the hands of their parents (40) . In Northampton two
more children paid the price of an inability to tackle abuse suffered in plain
sight of the professionals.
Society and the structure that is there to protect
children has failed those young people with ME and PEM for decades, while some organisations
rejoice in the good that they do, sweeping aside the mistakes made.
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