On the 9th February 2018 I sent a letter supporting Dr Myhill's complaint to the GMC.
I received a standard reply that made no sense and here is my open reply back to them. A bit long but it is a big issue.
Dear Sir Terence Stephenson
Nuffield Professor of Child Health at University College London
Chair of GMC
Thank you for your considered response from Ian
McCann, and I am glad you took your time to carefully review our concerns as
there are 25,000 children’s lives at the heart of this long drawn out matter.
I can assure you I am not disappointed, neither
am I surprised by your inaction to my concerns, nor was the 250,000 adults or the
parents of the 25,000 children in the UK, who deal with this condition on a
daily basis. All those around the world have long anticipated your reply. I
guess, it was just a step we knew we had to go through. Furthermore, I am very
used to the standard reply you gave me and that speaks volumes.
I am an
patient Ambassador for Children with ME as part of #MedLearn, which is about
shared learning between senior healthcare professionals, patients and carers’,
I am one of the stakeholders on the NICE guidelines and am on the Community
Engagement Partnership in my area, as well as a mother with a son, who has
suffered by the training given to our local medical staff, by your listed
trainers.
I take my roles very seriously and when I see
harm being done, I report it and support those who would like to help make a
better NHS, based on good governance, mutual respect, and a learning pathway
that is open and honest.
There are over 25,000 very good reasons why I
do this.
In my roles I read many papers and talk to many
researchers and doctors all over the world. ME is not an opinion, a personal
view or caused by psychosomatic reasons. ME is a very complex, multi system, debilitating and life-threatening
condition, of which the research and understanding is being held back by some
of your training members. Dr Ramsay tried to defend ME against fabricating and
inducing mental illness on those that suffer ME, sadly he failed.
Can you confirm that you are not going to make
those on your register; whether they be a doctor, on your special register or
trainer to uphold their duty of candour.
·
Speak
to a patient, or those close to them, as soon as possible after they realise
something has gone wrong with their care.
·
Apologise
to the patient – explain what happened, what can be done if they have suffered
harm and what will be done to prevent someone else being harmed in the future.
·
Use
their professional judgement about whether to inform patients about near misses
– incidents which have the potential to result in harm but do not.
·
Report
errors at an early stage so that lessons can be learned quickly, and patients
are protected from harm in the future.
·
Not
try to prevent colleagues or former colleagues from raising concerns about
patient safety. Managers must make sure that if people do raise concerns they
are protected from unfair criticism, detriment or dismissal.
Dr Ramsay in 1986 said that this illness has an
“alarming tendency to become chronic”,
so we have always known that harm can be done to patients who are not listened
to.
Dr Wakefield; who you struck off your register,
the GMC stated he “abused his position of trust when conducting research” his
“dishonest irresponsible and showed callous disregard for the distress and
pain” cased to children. So why in your letter do you state to me, that you
will not be taking the matter any further at this time? Who are you protecting?
It is not our children. Please explain your actions and your obvious
misinformation you gave me. You also quoted at me that, “An investigation can only be opened if the concerns raised are so
serious that the doctor’s fitness to practise medicine is called into question.”
Thousands of innocent patients are waiting for this clarification of why the
difference between Wakefield and PACE trial authors, Sir Wessely, Crawley, Glaser, Parker.
It would seem to me you have not protected this
group of patients, some of which are very young and vulnerable children, and I
feel breaches the Ill-treatment and wilful neglect offences Act 2015?
You have enough evidence historically, through
the parliament questions and Westminster debates along with children who are no
longer able to live life, other than in an extremely constricted way and in
constant pain, neglected by all medical professionals, due to the lack of
understanding promoted by the PACE trial authors and supporters. 25,000 good
reasons why the status quo cannot be allowed to continue. You need to
give a full account of your inactions to the public.
Sir Robert Frances QC “Every time a patient or
a colleague is deceived, intentionally or otherwise, public confidence in the
service can be threatened”. I would suggest in this matter it has gone.
False allegations are thrown at parents with
children that have hidden disability or chronic conditions which ME is one. It
co exists with, EDS, VEDS, POTS, Mast Cell Activation, Celiac due to the misinformation
issued by trainers on your register, these children are wilfully neglected. This
is caused by medical teaching by your approved trainers.
This causes immense physical and emotional
damage to the whole family, not just the young patient, and lasts a life time,
like any form of abuse.
FII is being used as a form of abusive control,
a weapon in two ways. Firstly, to make parents do what those that have full
control of ME/CFS recommends, including pushing children on research trials and
secondly when things go wrong to blame the parent, and hide their
misconduct/misdiagnosis/ lack of understanding.
When parents are innocent, their innocence and
what went wrong is never looked into publicly, due to the secretive nature that
has been allowed to build up around FII; even when the parents have been
publicly announced as abusers. The harms caused by those on your register as
trainers, train medical staff in their beliefs that goes against all the
biomedical research, as I mentioned in my complaint and this is growing.
Giving the wrong treatment to a large group of
patients is against duty of candour, not reporting known harms is against the
Shipman report, and not learning from historical mistakes is against humanity
and informed consent.
Am I given to understand that you think as an
organisation you are above all three?
Who are you protecting? It is not our children
and you are showing callous disregard for the health and wellbeing of over
25,000 children around the United Kingdom.
I am aware you have connections with Bristol
University and Oxford, so you will be aware of the historical problems of over
30 years of pushing CBT as a treatment, with no obvious rewards to patients.
With nearly every trial being flawed on many levels.
You state your Role is: to oversee medical education and advise on good
medical practice. So therefore, a fitness to be a trainer and to educate
others, is within your domain of governance.
You are a public body, so therefore it is your
public duty to protect the medical staff on your register from being
misinformed and to stop bad practice by those that educate in their specialist
field.
You are there to protect the public from harm?
Since 2004 patients and some researchers along with doctors, have been talking
of systemic harm with treatment of CBT and GET on those that have ME/CFS. That
is 14 years and still you do not
listen.
CBT is being rolled out for all conditions and
is part of the IAPT, so this truth needs to come out as the country pays for
this wrong approach in two ways – misdiagnosis leading to harm/death as patient’s
symptoms are not being noted as important and financially when therapies
through their own research shows that CBT has no positive effects, therefore a
waste of public funds.
It is my opinion you have failed in your duty
of candour. You are allowing further harm of those that suffer and of newly
diagnosed to go through the same rehabilitation nightmare. You have been informed of harm, biomedical research historically and new, has consistently
proven dysregulation in the many systems and the harm caused by a two-day CPET
test. Yet you have chosen not to take action, therefore the known abuse
continues. You cannot call it different opinion? You are now a party to that
abuse, by your inaction of governance.
could you please explain the
following to me -
When I looked on your register I find that
Simon Charles Wessley is Reg no 2724740 is an approved trainer by yourselves.
Please confirm this is the same Sir Simon Wessley with many accounts of his medical
gaslighting towards patients verbal and written, carers, Doctors, advocates,
journalists, professors and reviewers. His views are biased to the point of…
well words fail. When you look at his fixation on Mass Hysteria with his paper
on the Camelford water poisoning, Gulf War Syndrome, I am perplexed that he is
still training medical staff. VEDS (life expectancy of 43 years and goes
undiagnosed and allowed to be called MUPPETS), Lymes and ME are not any form of
hysteria, they are physical conditions interlinked and with little biomedical
researched done due to the views of a few. If these physical conditions cannot
be picked up by biosocial lobby, there is something very wrong with our
teaching of medicine. Tick bites and associated known illness along with
shingles, have been around for many years, and their complex affects on the
body known. Therefore, it is absurd not to look for causes and find facts of ME
and just treat with increased activity. Even more so when the cardinal
diagnostic difference in this illness is that the body starts to shut down 48
hours or so after any form of activity and not just physical activity, I go
back to Dr Ramsay among others.
On your register is Michael Christopher Sharpe
2673545 Please let me know if this is the same Professor Sharpe who was part of
the PACE trial. Recently his behaviour has been in the public and Parliaments
eye with regards to the email sent to Carol Monaghan MP. His disputed work is the one quoted as
evidence based and forms the opinion, and I would suggest education of the
medical profession as a whole. Professor Sharpe had four papers as evidence for
the Occupational Aspects of the Management of Chronic Fatigue Syndrome: a
National Guideline 2006, I wonder who reviewed these papers. His methodology
has been again questioned in the awful named trial of “Fatiogo” and on the NICE
guidelines list of possible papers, so the problem perpetuates. There should
have been a halt to his ability to do research, as you did with Wakefield.
Public confidence is being lost in science, when the GMC do not administer
governance or balanced discipline.
Esther Crawley 3545946 who is the lead
researcher with the biggest grant in the UK for ME/CFS, that leads physical
trials on vulnerable children, with little to no understating of co-existing
conditions like POTS, VEDS, EDS Mast Cell and calls these conditions MUPPETS. The
lead researcher on the SMILE trial, MAGENTA and FITNET-NHS - inform me what apart
her trials play in your educational material. Medical staff not taught the relevance
of POTS testing or significance of using heart rate monitors. This goes against
NICE guidelines that she is very fond of quoting.
As with the Fatiogo trial if monitors are being
worn what assurance do we have they will be a reporting outcome in her trials?
or just hidden as with the other trials she has done? Harms are not listed and let’s
remember anaerobic threshold that a normal athlete would reach at high peak
intensity training, is reached doing daily tasks with these children, so harms
would occur, breathlessness, chest pain and irregular heartbeats, causing
distress and anxiety to young children. This is harmful with children that
suffer both ME, POST and VEDS/EDS/hypermobile joints, this is of great concern.
Dr Ramsay in 1986 defined ME with them in mind. The number of children made
bedbound by treatment shows the harm and these need to be reported to enable
medical staff and parents to understand ME better and be able to give informed
consent.
This is without the way in which children are
recruited. David Tuller can advise on the unethical approach. Wakefield only
enlisted the help of a few children; Professor Crawley enlists the help of so
many more; 700 on this new trial. Advertising to doctors of recovery even
before she has started the trial. How can she possibly predict the result?
Trials are there to prove or disprove, not assume the evidence will be there
before the trial starts.
The SMILE trial was based on a private
companies’ secretive approach and that once used tarot card reading as an aid
to diagnosis? The cost of this treatment is well above what the NHS would spend
on treatment for ME sufferers. This is wasting precious resources. How did any
of her trials gain ethical approval, as reading the letters of concern is sad
reading indeed with yet again many world renowned doctors and researchers
signing an open letter.
Could you please confirm that
Danya Ruth Glaser Reg no: 0291660 is the same who is also on the specialist
register and recommends children having tantrums should be looked as possible
FII cases, and also helped on the NICE guidelines with regards to FII.
As Alec Shelbrook has said “this
was a clear example of a governments body over stepping their brief” as he
explains “blurring the lines of abuse and normal childhood behavior”. This will
make the lives of parents with children that have autism extremely difficult. Now
she seems to be targeting parents with children with ME/CFS, MUS and probably
the new FND. Why?
There has been great concern with
how children with autism have been treated, again with many avoidable deaths. Many
parents who have children with complex needs are being gaslighted with their
concerns and knowledge.
Melanie Parker Reg No: 2639880 could you confirm this is the same Parker who
works with children with ME. If so, why
is she also instructing professionals on how to accuse parents of FII when they
have a medically diagnoseable Neurological condition as listed by the WHO. This
shows a distinct lack of understanding and is harmful to children, their
parents and their family life. I know of parents that have children that go to
her clinic, now feel very threatened.
All five have either completed research or
training that has formed medical understanding, influenced medical education
and public opinion, endorsed by the GMC. They have influence/control over
Choices, NICE, NHS, Science Media Centre; who protects Esther Crawley from her fictional
abuse stories; as none of the abuse she openly talks about has been proven and
one poster she used in a Bristol TEDtalk was made up, and which the artist
asked her not to use. Getting paid to educating public, medical, dentists and
police staff. This is your responsibility to correct the institutional and
medical gaslighting of a group of patients, whose parents have no power to
speak out. Your control is over the register of authorised trainers,
specialists and doctors, why have you allowed this behaviour to continue?
The History and the evidence of many young adults and children’s lives
brutalized.
Sophia Mirza autopsy report should have stopped
opinion and caused medical staff to do no
more harm. The recording of her being forcefully taken from her home still astounds
me. What action was taken by the GMC against those that wilfully and skilfully
perpetuated the abduction?
Please explain to me how the findings of her
autopsy could possibly indicate that rehabilitation would work, that it is not
serious condition and why doctors are not informed of the gravity of ME. This
was back in 2005 (the year my son was born). In 2018 doctors who tried to help
Merryn Croft were left helpless by your trainers’ opinions and against all
biomedical science.
That doctor endured what others would deny. That
doctor should have been supported by the biomedical knowledge we have. How many
more like Merryn are there, I know of many.
13 years of knowing the inflammation of the
dorsal ganglia and the pain that can cause, and we do what? Oxidative stress,
Cori cycle, ion channels, and how TRP channels are highly involved with our
sensory and pain. Don’t you think we should proceed with caution with regards to
rehabilitation methods of vulnerable children, and doesn’t take into account
thinking is the same as running a marathon with ME?
Sir John O’Hare QC who headed up the 14-year-old inquiry into avoidable
deaths of young children in the Royal Belfast Hospital said (I will paraphrase
for brevity) “there was an “indefensible” culture in which parents were
“deliberately mislead” by doctors and health trust chef’s intent on “avoiding
scrutiny” and protecting their own reputations.” I would suggest this whole
affair is showing the same signs of avoidable suffering, not only within ME/CFS,
but also EDS, Lymes, MUS, autism and FND and should and could be stopped now.
If we look more closely as with Karina Hansen
(Denmark) who was taken away and suffered enforced rehabilitation and drugs
that she did not need. Her parents were left helpless while abuse on their
child was carried out. When parents are accused of FII they have no say and are
silenced by the medical professionals. The trauma and sheer sickness of this
act is being carried out throughout the UK. In Karina’s case, they have now
asked another Doctor to come and look at her and what did she find:
On the 9th July 2018 psychiatrist Dr
Charlotte Emborq appointed by the court in Holstebro to make an independent
assessment of Karina’s health and her capacity to manage her own affairs. We do
not have the full report, but what has been made public and shows:
“Karina does not suffer from any psychiatric
illness. She does understand the role and purpose of her court-appointed
guardian and she would like him to be removed from her case. She was found to
be capable of managing her own finances.
How many children
with ME languish in mental Hospitals in the UK, caused by your blind eye to
other research and bias on someone’s considered opinion. How much suffering did
Karina endure, we can only imagine but we can listen to Sophia Mirza and her mother. Read the reports and how they tried to
take the good doctors who protect her down.
I am sure you are
aware of how this is in the UK, as Dr Myhill has been taken to the GMC, is it
28 times? She has been stopped from speaking the truth as quoting from her book
“I was heavily criticised once for stating that my CFS patients were in heart
failure – this was considered an alarmist statement which scared patients” Well
let me assure you, it is not as alarming as doctors not taking it seriously and
leaving a child in this state for weeks, or good doctors not knowing what to
do.
You are aware of expert paediatrician Dr
Speight and how they have tried the same with him. I suggest you ask his
council on the FII campaign - that has been going on for years. By his good
council you will be able to see how much damage has been done to the family
structure, and security of family life within the ME fraternity. Mistrust
against doctors, the NHS and the GMC is inevitable as the truth unfolds and remember
25,000 is not a small number of children.
If you ask Countess Mar of the forward for ME
parliamentary group; who has been asking for information over FII reporting. It
is clear there is no way of seeing how many doctors wrongly accuse parents of
FII and find they have misdiagnosed conditions, misrepresented evidence,
causing harm and death. Therefore, the learning pathway on this is NIL. We are
down to believing the doctors, which has proven historically dangerous for
patient safety, especially with regards to Bristol hospital where Crawley is
doing her research.
The Tymes Trust has helped many of those accused
with no parents being found guilty of FII and once again if you ask for Jane
Colby’s council, she will be able to assist you, in making sure you have a full
and unbiased opinion on the matter.
It astounds me that misdiagnosis
with near death or deaths are covered up with false FII accusations on parent’s.
When found innocent they still have courts gagging orders. How is this allowed.
This is taken from your approved Paediatric
Community Child Health Curriculum and is put under behaviour which goes
against the World Health Organisation. Please explain.
Understand the principles of treatment of chronic fatigue syndrome/ME
and the need to engage the family with a
rehabilitative approach. I do
not see much engagement going on, I see forced harm.
You cannot blame the medical profession if they
are not aware of an issue or wrong doing. Your education dictates a course of
action that they follow on trust of your good governance. It is your responsibility
with others to inform the medical staff of concerns, you must work as a team
across all departments and the patient voice is the one you need to listen to,
especially the children; past and present, so lessons can be learnt. We are not
talking one or two children, or even hundreds we are talking thousands!
How can you in good conscience advocate to take
well-meaning medical staff, that are following your recommended and approved trainers and approved educational
curriculum, believing the structure and teaching they have been given, based on
the PACE trial, (quoted at us as being “good solid evidence-based research”)
through any complaints procedure as you advised me in your letter?
All or most hospitals list ME as a mental
health issue of some kind or another and it is now being listed under
“Functional Neurological Disorder” at a teaching hospital. It is obvious that
no one is looking at the WHO definition of ME? Please explain why you do not
re-educate these doctors under your register.
A quote from the email you sent me,
“The General Medical Council
helps to protect patients and improve medical education and practice in the UK
by setting standards for students and doctors. We support them in achieving
(and exceeding) those standards and take action when they are not met.”
NOW PLEASE ACT UPON those words and inform me in detail with all the above points
raised.
An update on Angus:
On Thursday 9th of August we took my
son to receive his blood test results ordered by the paediatric. Even though he
bathes in Epsom salts several times a day, his magnesium was only just within
the normal range. If I had not known about possible magnesium deficiency, what
would have happened to my son in the past 5 years of his illness?
Low Vitamin D and liver problem have only just
been found. Unfortunately, they do not understand the relevance of these
problems. Yet even though he has celiac disease his Vitamin B has not been
tested.
If they had known about Cori cycle and Julia
Newton and Dr Myhill they would understand the importance and give emergency
and concern for his health. They have not taken EDS seriously. Furthermore, the
POTS that he is diagnosed with at my request and even when I show that his
heart rate goes up to 160 when standing, his symptoms have been put down to a
three weeks anxiety attack? Your teaching, your responsibility.
I have great empathy when a doctor or
consultant looks at me with dumbfounded hopelessness to know how to help my
struggling son. It is truly heart-breaking when good considerate doctors are so
let down by the GMC and their approved trainers. For my son it is taking his
life away one inaction after another.
Finally, this is what we face on a daily basis.
These doctors are on your register and are causing untold harm with no
safeguards for young patients and their parents. No homes or foster carers are
educated in how to care for the sever ME young person, how can they be when
doctors are flouting the rules that should protect the public.
This letter will be an open letter and I will
endeavour to send to as many influential people as possible.
