Wednesday, 27 February 2019

Policy funnels families of children with ME into inappropriate child protection scenarios.

You may be unaware of a doctor called Danya Glaser, she works in children's psychology at Great Ormond Street Hospital. She is a major force behind the current epidemic of false allegation of FII against families with children who have complex needs. She and her team have devised the flowchart "Guidance on management of Children & Young People Presenting with Perplexing presentations to secondary healthcare Sept 2017" which is being used by children's services and hospitals nationally. Families may enter the flowchart because indeed Myalgic Encephalymylitis is a "medically unexplained symptoms" in the fact that there is no medically proven cause for ME. However that's because nobody has ever properly looked into what causes ME, rather than it being a fabricated illness.

Any family with a child with ME whose health and social care professionals have had hold of this horrible flow chart will have a hard time avoiding false allegations of FII and child protection proceedings, which can cause, physical and emotional abuse of children, forced admission, forced GET therapy, family breakdown, loss of income, career, housing, benefits, mental health problems and even suicidal ideation (see my previous articles )

Box 1
 one or more of the following present 
. A carer reporting symptoms and observed signs that are not explained by any known medical condition

Recently ME has been repackaged and relabelled to be "CFS" "chronic fatigue" to "unexplained Medical symptoms". This all encompassing term includes pretty much any other medical or behavioural condition that a professional wishes to stick under it. A training document was leaked from a major hospital last year advertising Medically Unexplained symptoms training that seemed to refer to these children as MUPPETS. They claimed that it actually referred to the medical professionals as MUPPETS, but most people in the chronic illness community did not buy into this explanation.

. Physical examination and results of investigations do not explain the symptoms or signs reported by the carer

There is no physical sign of ME, there is no blood test for ME, there is no brain scan that will show a change big enough to convince a general paediatrician of ME, there is no xray that will show ME, there is no breath test, biopsy, psychological evaluation, there is NOTHING that will show ME. This is because no one invests in ME research.

. The child/yp has an inexplicably poor response to prescribed medication or other treatment, or intolerance of treatment.

The current belief that Graded Exercise Therapy cures ME which is categorised by Post Exertional Malaise is completely ridiculous and based on a fraudulent study which has now been debunked but continues to rest in the NICE guidelines and be prescribed by practitioners. If GET works, it is quite unlikely the patient actually has ME and more likely they were caught under the umbrella terms CFS/MUS. It was discussed in Parliament that GET is harmful and suggested that further prescription of GET could result in litigation last year, however it continues to be prescribed. If indeed the presenting ME was "medically unexplained symptom" then how could it possibly have prescribed treatment, given it is unexplained?

. Acute symptoms and signs are exclusively observed by/in the presence of one carer. 

Many children with ME have one carer, many children with ME "crash" (exacerbation of ME) at home and are seen to be very sick there. They are denied GP home visits and this is only seen by family members. Children with ME are only ever out of the house when they are feeling at their very best. Also, relating this to children with "high functioning autism" we see the "coke bottle affect" where children "mask" all day and then show behavioural symptoms at home. Children with ME may do a similar thing where they push themselves to do something and then "crash" at home.

. On resolution of the child/yp presenting problems the carer reports different symptoms or reports symptoms in children in sequence.

MEis often seen in families, they do not "resolve" as they are chronic illnesses.

. The Child/yp daily life is limited beyond what is expected due to any disorder from which the child/yp is known to suffer, for example partial or no school attendance and use of seemingly unnecessary special aids. 

Many children with ME have had their condition dismissed by medical and other professionals (see my articles) . So considering many professionals claim to not believe in these conditions, its not surprising they don't believe these children can't attend school and need a wheelchair. The stigma towards ME of "just being tired" drives many ableist ideas that these children can just "push through" and aren't really disabled".

. The carer seeks multiple opinions inappropriately

"Inappropriately" is not defined here, but my experience of several other peoples cases tells me it means "getting a private opinion when dismissed by NHS professionals"

Actions to take/consider

This is where many families are badly let down, no one takes the time to actually look properly at the time line of events and instead rely on heresay. Communication is always massively lacking in every case i have personally heard. The last idea, to consider if it is an organic disease is ignored, especially by those professionals who choose to declare that ME/EDS etc doesn't exist. Also, there is no way of positively confirming ME. Many professionals go for the option of admitting the child/yp for close observation. The fact that this usually means all treatment of symptoms, aids, pain relief etc is removed is not openly stated, but that is what happens and this so called "observation" can quickly become physical and psychological abuse of a sick child.

Green box 

New or rare syndrome

ME is not new or rare, yet also still has no test to show it is present, so will never be cleared and "treated appropriately" until there is proper investment and investigation into the causes of ME.

Yellow Box 

Still no agreed medical explanation child's presentation

There wont ever be, until professionals acknowledge the existence of ME and proper investment is made into ME research.

Lead consultant meet with family to explain:
. that they are unable to give diagnosis, (avoid naming disorders which are actually descriptions eg chronic pain syndrome)

Its rather convenient that ME is renamed "Chronic fatigue syndrome" only to be dismissed here, leaving the child with ME with no diagnosis.

. These symptoms are not life threatening and the child/yp will not come to harm result 

ME is life threatening, failure to record deaths as related to ME makes it seem not many die from ME, as their complications are recorded as cause of death rather than the ME. Some headline names of children/yp with ME who have died of ME died of a direct cause of the neglect/abuse from health care staff in pushing GET and ignoring the condition.

.Investigations/opinions to date

Nothing will show up in investigations to indicate ME, opinions on ME from medical staff will not be positive or child centred or we wouldn't be on this pathway. If these symptoms are medically unexplained then there should be little valid opinion.

. Further investigation/specialists referrals are not warranted and likely to do more harm than good

Finding a professionals who treats people with ME with care and respect is invaluable and does not cause harm.

.Child/yp needs to be helped to function alongside symptoms

This completely dismisses the severity of symptoms

.Health team recommends and will support rehabilitation and coping with symptoms and that evidence shows this improves quality of life even though actual symptoms may take longer to improve.

What evidence? The shameful and fraudulent PACE trial? At this stage we are still treating something we declare to be medically unexplained, there can not be any research on a treatment for a set of symptoms that aren't medically explained and have no diagnosis.

2nd Green box

Parent and carer accept plan and engage in multi disciplinary agency plan

The plan is detailed at the bottom of the page and includes weaning off unnecessary treatments/aids, parents to "coach" children to get out of house, graded exercise, sleep.

Not many families will accept a plan where their very real symptoms are dismissed they are denied a diagnosis of ME or even CFS and are told to exercise and sleep well. The very diagnostic criteria for ME is that people with ME can not exercise or sleep well. Failure to comply with this plan (or failure to improve) or initially agreeing and then realising it is a ridiculous way to manage a biomedical disease, lead to Red Box 2

A shorter journey to red box 2 is to deny the professionals the opportunity to physically and psychologically abuse the child with an admission with forced GET and removal of pain relief and mobility aids.

At this stage it is advised that the professional seek safeguarding advice and refer for FII.

I would love to hear anyone explain to me how a family with a child with ME could possibly get through this flowchart unhurt.

In the recent (January 2019) discussion of ME in Parliament the health commissioner Steven Brine, declared that NICE state GET is a choice and no one is being forced. This flowchart shows that if you refuse GET for your "medically unexplained symptoms" that ME (and many other conditions) have been relabelled as, you WILL be referred to children's services for Fabricated and Induced Illness. The consequences of this could be a criminal record, loss of career (due to record), loss of benefits and housing, loss of children, damage to children (from medical neglect of ME), and forever encountering barriers to receiving medical and social care. (see my article)

Are we now declaring that the UK has discovered all their is to know about medicine? Because i can see no other reason that any condition that doesn't currently have a physical test to classify it could be funnelled into "medically unexplained symptoms" and child protection.

Saturday, 23 February 2019

Treatment of families with ASD by childrens services

There is very little out there about parents with ASD, there are many many articles around the "stress and pressures" of raising an autistic child and transitioning that child to adulthood. However many people don't see their autism as a negative thing, there are many positive factors of autism and indeed it can lead to particular career paths. The past view of autism as "low functioning" and "high functioning" are slowly being eradicated with the diagnosis being changed to ASD and getting rid of "Aspergers" diagnosis. However, many people, especially the medical profession and children's services see ASD as a "condition" or "illness" categorised by low functioning, sometimes mute individuals unable to sustain Independence, much less be parents.

The fact is that there are many wonderful parents out there who are ASD, many received an adult diagnosis of ASD due to the medical professionals blinkered view towards ASD and belief that you have to have significant "problems" such as being non verbal to gain an ASD diagnosis.  This systemic abliesm is also partly behind the constant threats of FII against parents trying to get diagnosis for children who may not present as stereotypically autistic.

I undertook a self selecting survey in order to show the experiences of families with autistic parents and/or children when going through the Children's Services system. The results were predictably poor.

As we have seen repeatedly, many of those dealing with the sometimes horrific consequences of children's services intervention and monitoring came into the system by asking for help.
Have yo had child services involvement?
Yes asked for help 40.6%
Yes referred by school 18.8%
Yes referred by medical professional 12.5%
Yes referred by someone else 28.1%
Forms response chart. Question title: Have you had childrens services involvement? . Number of responses: 96 responses.
A large proportion of the parents who believed themselves to be autistic, had avoided assessment due to fear of negative consequences 
"If either parent suspects they are ASD why do they not have a diagnosis?" 
Don't want a diagnosis 18.6%
Scared of negative reactions to my diagnosis 34.9% 
Refused an assessment 9.3%
Awaiting assessment 9.3%
Haven't got round to it yet 27.9%
Forms response chart. Question title: If either parent suspects they are ASD why do they not have a diagnosis? . Number of responses: 43 responses.
This fear of negative treatment seems well founded as in many cases parental ASD is treated negatively or raised as a concern

Families are more likely to self refer to children's services by asking for help if they have both parents and children with ASD 

Families who have both parents and children with ASD  seem more likely to ask for help and have social services intervention, but also more likely to have children taken into foster care. Out of those families with both ASD parent(s) and child(ren) 22.5% were taken into care, in those with only ASD children it was 16%

Advocacy services for parents with ASD dealing with childrens services seems very sparse, most parents with/suspected of ASD felt disadvantaged by the system. Only 1 (one) parent received advocacy support

All children with a social worker are entitled to an advocate, we see in Fiightback the vast majority of cases are given no advocacy, refused advocacy or given very poor, not independent "advocacy" services. In this survey only 16.7% were allowed an advocate and 13.5% were actually refused advocacy services.

Generally families report poor outcomes after dealing with social services, with the majority reporting their family situation is worse, but families with parents with/suspected of ASD are more likely to experience poor outcomes