What It Takes To Be A Mother Like ME

 Dear William Quince

 

As a minster you are required to be available to the general public, not just constituents as some have been led to believe, I do think the link I have used should be made more public.

 

With regards to this review you must be open to all that are going to be impacted upon. You are the servant of the public and as such have a social responsibility to carry out duties that support and enhance health, care and education through robust data, research and science and not of opinion, theories or for others gain.

 

You cannot invite parents with lived experience and then cut out their voices and say you have engaged with them. All their comments in writing must be made public and you should have enabled this at the start of the process. As for my letters I will be making them public as I have with regards to the NICE guidelines for ME, Children’s Commissioner, Social Care Reform and Family Court Review.

 

You must be aware of all the reforms that impact on SEN (Department of Education and Department of Health and Social Care, 2014)[1] and the fact that our educational system has been rundown to fail, with the disregard of the SEND code of practice, so that private enterprises that are also failing to provide adequate education can take over. You also need to have a good grasp on the laws, duties and obligations with regards to EHCPs. This includes health as that is the biggest barrier to education and social care and is now part of the extended powers of which you need to enforce and make sure they are upheld, not just if the Local Authorities decides; as they are not law makers and their actions could constitute discrimination.

 

My name is Tina Rodwell and I wanted to show you what it takes to be a mother like me and the trauma I go through, but more importantly the trauma caused to my son.

 

I have a young person that was chronically sick and disabled from the age of 8, he is now 17. He should have been covered by the (GOIV UK Chronically Sick and Disabled Persons Act 1970, 1970) [2]which states that [it shall be the duty of every local authority having functions under section 29 of the National Assistance Act 1948 to inform themselves of the number of person to whom that section applies within their area and of the need for the making by the authority of arrangements under that section for such persons]

 

• So why do we not know how many children, young people and young adults who have ME/cfs and their needs understood and accounted for by Local Authorities or governmental departments so CCG can fund appropriately?

 

Most if not all parents with children or young people with ME/cfs are not told or informed of their rights given correct diagnosis or supported with an EHCP.

 

It would seem that I have to cover many ‘professionalisms’; just to make sense of the situation I find myself in. I have to understand the health, care and educational systems in crisis and the laws that bind them together. I should have been informed and barriers taken down, this did not happen and that is unacceptable. This report is only part of my research needed to keep my son safe.

 

Throughout my child’s illness I have been misinformed, misrepresented and as a result of NHS hidden agenda and tyranny, I feel as if I am the government’s scapegoat. I will explain via each one of the questions I ask of you. However, as you read them I want you to understand the research I have had to do and the effort I have put in which could be recorded on my health records as a Red Flag to Fabricating or inducing illness (Fii) (Royal College of Paediatric and Child Health, 2021)[3] Now linked to Education through the NICE guidelines.

 

·        How can this happen?

·        Why is my critical thinking challenged

·        Why do GP and paediatrics not support those with hidden disabilities, understand and protect them.

·        Why are they so misinformed with chronic and perplexing presentations, when so many conditions are not bio-medically researched such as my son’s condition of ME.

·         How many mothers are treated with disrespect and their concerns dismissed? (Clements & Aiello, 2021)[4] we need urgent change to stop what was discovered as Institutional culture of parent-carer blame.

·         It is now an Educational requirement to look for Fii but not understand chronic sickness (Jones, 2021)[5] causing barriers to good education and discrimination, a way of gatekeeping.

• When I am asked to go on EHCP legal training as a parent, to look up conditions my child has to advocate for them and then asked to give informed consent. How can I then be investigated for Fii under the perplexing presentation from the training of teacher safeguarding. Those safeguarding guidelines - which was supported  (Royal College of Paediatric and Child Health, 2021)[6] cause harm. It is recognised that disabled children and young people are more vulnerable to discrimination and abuse or neglect from services and that is unacceptable and why Fii needs a full public enquiry.

 

The suspicion and accusations are before my son’s disabilities are even considered; not that they ever have been considered without my expertise, input and our lived experience. I want you to remember that; as you work through these questions that every word I write can be held against me through the red flag system of Fii. How that increases my stress and trauma, when I have a very sick child to care for. I have no support and cannot get healthcare for myself; as once again that can be held against me.

 

What I have suffered; being a mother with a child with complex perplexing health disabilities is at first unbelievable.

 

·        How can this be in 2022.

 

It is all down to policy impacts and no joined up understanding when Health, Social Care and Education; now so interlinked but separated by reforms and reviews. I hope to address that disjointed issue here with my questions and I hope with your answers.

 

Furthermore, for mothers with disabilities; as we know they mostly run in families, it seems that they are blamed and disrespected as a parent even more - as if it was their fault they have a disability and should not have children. I have no idea how mothers with any form of disabilities cope and we need research on the trauma caused to parents and especially mothers; as we know their health and care services are misogynistic. We also need that trauma understanding and how to recognise it in our children and how this impacts on their life in the future, when the system does not recognise or dismisses their disabilities.

 

My trauma of the system however, is nothing compared to that of my courageous son. Sadly we are not alone and no disability; learning or otherwise is untouched by the questions I ask.

 

The questions we; as parents and the public need answers to and should form your review going forward:

 

1/

·        Is this review going to be fit for purpose or to fit in with an agenda of the Local Authorities and Government’s plans to privatise all health, social services and education, with the use of Fii as an easy accusation to keep parents quiet, as it has for a decade or more?

 

After all you said you would listen but would not necessarily agree. That to many of us sounds like a caveat and what appears to say to us - the public, is that you will brush over the lived experience and what is needed for children that are different and with needs.

 

Recent announcements from what we have read and heard shows the minds of ministers was clear - cut services and choice and a carry on with the trauma of blaming parents. No accountability due to a non-blame of the professional culture we live in; but blame the parent (Clements & Aiello, 2021)[7]. In the report it found that  most English Children’s Services Authorities operate a ‘one size-fits all’ approach to families –regardless of whether it is a parent carer seeking support for a disabled child or family where the evidence suggests there is be neglect or abuse. The effect of this approach is to create an institutional culture of ‘parent blame’.  This then causes the denials of the safeguards we have in place in our laws to protect sick and disabled children and their needs; education or otherwise, is clear for all to see.

 

·         Is this then leading to a system of Conscious incompetence after the review?

 

2/ Why are our children being failed, why so many children with obvious ill health, disability and educational needs going to tribunal, wasting time, effort and public funds while the Local Authority hold all the power to deny and step over accountability? Even going so far as taking Judicial Reviews away?

 

Under the Equality Act 2010 (GOV.UK, 2010)[8] it states that the public sector and authorities need to have due regard to the need to –

 

1.      Eliminate unlawful discrimination, harassment and victimisation;

2.      Advance equality of opportunity between persons who share a relevant protected characteristic and persons who do not share it.

3.      To foster good relations between persons who share a relevant protected characteristic and persons who do not share it.

 

These Laws should not be opinions or a postcode lottery of Local Authorities and are integral to deliver health, which is imperative to education. This Law gives understanding of disability impacting on educational needs, yet is disregarded at every opportunity. It is your social duty to our young people as citizens, that you uphold the advance to equality in this review.

 

3/

·        Why can’t we keep the retention of good teachers and protect them from being made to carry out bad practice; such as refusing to acknowledge a difficulty and not put forward the legal required Education & Health Care Plans?

 

Also help protect them from being made to over reach in expertise – the Local Authorities, teachers and education officers are not able to competently diagnose or to assess the young people. However, they are constantly; over decades able to refuse or accept clinical diagnosis of qualified and leading experts in their felid of Health, Educational Psychiatry and Occupational Therapy.

 

The pathway to disputing a diagnosis is there, it is just not adhered to. All experts involved, private or otherwise have to be a member of the same professional bodies, trained and delivering to the exact same professional standard.

 

If there are concerns over any professional, in particular a health professional, action must be taken under the “Whistleblowing policies in place”. The relevant professional bodies should be contacted, to see if they have the correct accreditation, licence and followed the correct pathway. The reason we have consultants is to safeguard against unconscious incompetence or conscious incompetence. There must be an understanding that local GPs are generalists, even if they have an interest and must not be permitted to over reach their capacity with regards to accusing mothers or parents of Fii. Sadly many good doctors are targeted when they try to stand up for parents against the accusation of Fii and this sadly also must be acknowledged.

 

 

The Robert Frances review was 7 years ago (Sir Frances, 2015),[9] which promised to enable and support those that spoke out, yet we still have a culture of “bully boy tactics”  used in Local Authorities to silence the good professionals and support and promote the bad practice. This leads to many leaving the occupations that surround SEND, health and social care.

 

There are also whistleblowing procedures for education introduced in 2014 (Department of Education, 2014) [10]for maintained schools which are poorly understood. 

 

·        What will happen for academies and free schools as the voices of those in education, SENDIAS need to be heard?

 

Looking across our health and care sectors such as the loss of mothers and babies in maternity settings, are showing us how bad the situation has been and still is for women. They are even blamed for the deaths of their child in childbirth (Bucanan, 2020)[11]. So is every mistake coved up this way - blame the mother.

 

You have heard how bad mothers and or both parents are treated when they have a child with a disability and you must give a strong voice to them.

 

No one is disputing diagnosis for some conditions are difficult, duty of candour is hard for professionals but somehow we miss the fact that mothers cannot be held responsible for their or the systems failings. Neither can they be held responsible for the recording of medical information or diagnosis. Symptoms with regards to children are difficult to respond to and they fluctuate, so we need a little more respect for women/mothers and little more critical thinking with regards to safeguarding and Fii in the educational setting or healthcare in general.

 

4/ We need in place scrutiny of funding.

 

·         How can a former cabinet member for education; who now is a finance portfolio holder at Suffolk County Council, be on the board of directors for the private limited company who provide our children’s education and have such discrimination/lack of understanding in place? (Noble, 2020)[12] Gordon Jones is on the board of directors for Unity Schools Partnership found to be discriminating against a SEN child.   

 

The finances of the schools need scrutiny. (Noble, 2020)[13] The Education chiefs in Suffolk gave a contract for five special educational needs units, when they were aware that the academy trust had breached quality laws by excluding a dyslexic pupil. The breach only come to light in a tribunal.

 

·         How can a school trust; known to exclude children because they are dyslexic, be given further funding for SEND children? Where is the funding going?

 

These are profit making businesses, who work on ‘less is more’ approach for their business profit margins.

 

Furthermore, a consultancy firm that apparently saved a council millions of pounds, that over saw significant reduction by slashing council care plans with 414 fewer EHCPs (Schools Week, 2022)[14]. Sadly the national trial to evaluate shows how detrimental this will be as the need for EHCPs are clear and health and social care should now be binding and mandatory to fit in with NHS 10 year plan and provision. 

 

For decades SEND/EHCP needs have never been met (Schools Week, 2022)[15] this one audit and study show this Government has no intention to change this. There has been no longitudinal study with the help of EHCP so the picture is not clear of the harms that have been done by this pilot study.

 

Stephen Kindom, from the Disabled Children’s Partnership, said “the finding raise concerns the government’s new scheme is “simply a cost-cutting exercise” and will make it even harder for parents to get the support they need for their disabled children. In this report they say “behavioural Science” is about the science.

 

·        I wonder what science they are talking about as it bears no resemblance to the lived experience that you have been hearing. We have a lot to look back on with regards to inappropriate opinions about behaviour, which has been resulting in the downfall of good educational intentions.

 

So many schools are failing SEND children in Suffolk and this is encouraged it would seem and supported by the Local Authority, MPs and government. Suffolk is not the only one, as private Limited companies are taking over these tasks for SEND with no visible safeguards, transparency or scrutiny.

 

Once again this Government is going ahead with plans, when clearly there are many issues all around England, with funding and failing schools.

 

·         How can there be a proper fully informed debate in The House of Lords on Academy and Free schools when the information and data is not there or what is there is misleading (House of Lords Livrary , 2022)[16]? It states Among other reforms, the Government proposes to deliver “a fully trust led system with a single regularity approach”. Opportunity for All Education white paper (HM Government Opportunity for all Presented to Parliament by Secretary of State for Education by Command of her Majesty, 2022)[17] how can this happen when there is no level playing field for those with disabilities?

 

·         How can academies and free schools be debated, when most of the troubles in the system are hidden by Local Authorities who are able to put the blame on parents or their child’s bad behaviour.

 

 

5/

 

·         Why are mothers targeted with abuse and threats, when asking for support, subjecting our children to trauma that is not recognised or addressed?

 

The amount of autistic adults now being recognised as such; shows clearly the failure in the system and has proven how wrong Fabricating or inducing illness (Fii) is when parents simply ask for assessments. The trauma on children through their lives and going into adulthood when they are not recognised as who they really are, causes immense trauma and harm. This is why we have discrimination laws so disability or being different is not punished.

 

 

·        Being Autistic is not a behaviour or bad parenting; it is a different way of taking and using information.

 

·        Nor does it automatically indicate an inability to learn, live in the community, or use information to live semi-independent lives, so why are so many artistic people dying in abusive environments with service providers and taken from loving homes. In this article the MP asks “we need to look at individual responsibility if we’re serious about changing culture.” (BBC News Norfolk Autisum and learning difficulties: MP urges closure of long - term units, 2021)[18].

 

 

·         The answers are not found or evidenced in the EHCP system; is it now time they should be.

 

·         Nor are the laws we have in place to blame - they are, in theory strong enough and the laws are clear if they are adhered to.

 

·        So what has failed our children over decades?

 

It is clear it is down to the people who control the system, the way Local Authorities are allowed to gate keep provision and schools delegate responsibility of SEND to the next stage of a child’s education, until it is effectively too late. It is simply a failure of consecutive governments to grasp professional misconduct.

 

·        It is said that ignorance within the law is no defence, so why are so many in the Local Authorities and Government are left ignorant of the laws of the land and why is no one tracking and tackling this issue?

 

 

6/ Local authorities play litigation games with the law and children’s lives.

 

·        How are you going to provide data for this bad practice?

 

·         Why are they, not held accountable?

 

Legal bundles that are incomplete and in a mess to hide the reality, should be thrown out of court as Local Authorities are paid by Government funding to go to tribunals, it is imperative they do so correctly. So many tribunals are unnecessary as clearly EHCPs are needed to support and give advice and why they are not in place needs to be explored and notes put on individual EHCP when discrimination happens to prevent it happening in the future.

 

Local Authorities should not be held above reproach and allowed to put arrogance and self-protection before the truth. If they are challenged they should question their approach, not accuse the parent. The challenge should be clearly marked and left for clarity and remedies of practice put in place for learning purposes and data collection.

 

7/

·        Why is there no retraining on the Laws in the legal departments of the Local Authorities and Local councils that do not uphold them?

 

8/

 

·        How are you going to make sure the experiences of parents and young people going forward are properly reported and given respect?

 

9/

 

·        SEND or family court Judges need to be encouraged to report bad behaviour by Local Authorities, be joined up with Education health and care, demand retraining on the laws. They should not accept these professionals are working in the best interests at all times for the child; as clearly that is not the case.

 

Clearly the responsibility of safeguarding our children’s health, education and social care is that of the Government. It is Governments duty and social responsibility to keep standards to meet the needs of the people, their communities and business. To choose not to agree to this point is not an option. As Lord Munby while debating the Family Courts being a system in crisis stated the need for research to identify the reasons for the rise in care cases in the article (Stevenson, 2016)[19] needs to be addressed. EHCP show us the needs for support not only in education but also for the chronically sick and disabled. This article clearly shows back then how bad things were, they are much worse now as education can hide failings with unfounded safeguarding concerns. We now need research into how many parents face accusations and family court proceedings because their child is disabled and unrecognised as such, in education and social care.

 

Governments’ can only safeguard the promises made to our children and their families (HM Government Opportunity for all Presented to Parliament by Secretary of State for Education by Command of her Majesty, 2022)[20]about the support they offer, if the data is there and accurately recorded and all of it taken into account. That data is one of the reasons why EHCPs are integral going forward, as these plans determine the services of CCGs and debates in the House of Lords. These debates can only be constructive if the appropriate professional assessments are done, as set out in the framework of the (Information, advice and Support Program ),[21] the services of which go to make up the CCGs duty under section 3 of the NHS Act 2006 (National Health service Act 2006 Section 3, 2006);[22] leading to the Local Offer and our understanding of the needs of our communities and impacts funding.

 

10/

·        How are you going to introduce the recording of the information of unfounded accusations and the trauma and long term impact of those accusations on the child, for future learning purposes?

 

The problem here is that there are very few medical professionals that can accommodate disabilities or complex perplexing health conditions. This is due to lack of teaching, research and recoding of harms and misdiagnosis. Hidden disabilities such as with my son; who has Myalgic encephalomyelitis (ME) Ehlers-Danlos Syndrome (EDS) Postural Tachycardia Syndrome (POTS), Mast Cell Activation/histamine intolerance and celiac disease, it is even worse when the research is controversial. If a condition is controversial, parents should not be accused of Fii but the doctors need to be alerted to NICE guidelines and adhere to them.

Due to the safeguarding red flag system, if I look up information about his conditions or try to understand them and advocate for my child in education, health or Social Care I am red flagged as Fii; it is said for my own gain. This is a heinous restraint on my knowledge to understand my son and is on every level inhuman.

This system impedes correct diagnosis, and impacts his needs for education. Furthermore, it restrains research and our growing knowledge.

If I complain or point out NICE guidelines, the chances are that I will be silenced by Fii accusation and put on child Protection. If I continue with stating the truth, my child will be taken.

·        How is this possible in 2022?

11/

·         How can a researcher attend a meeting about a disability such as ME, POTS and EDS that has been recognised as physical illnesses and misinform a group that they are Medically Unexplained or Psychological and use the acronym MUPPETS (South West Paediatric Club, 2017)[23]?

 

We all appreciate the term is used as a slang word for idiots. We can also appreciate how discriminating the word is upon the mind-set of professionals. However, it is still left unpunished by GMC and the MRC. Furthermore the researchers are supported by the Royal College of Paediatric and Child Health (RCPCH) who have paid for some of the research in which the conference was based. A full inquiry into this is needed due to the misinformation (Strategy & External Relations Directorate, 2015)[24] which states that “Any statement made to a regulator or a commissioner in the course of its statutory duties must be completely truthful and not misleading by omission”.

The Government felt that there was a lack of suitable redress across the health and social care system to cover instances where false or misleading information was published or submitted outside of the regulatory processes. Information published in such a way can put patients at risk of harm or conceal that harm has or is occurring. The FOMI offence makes clear to NHS providers and their leadership, that such behaviour is not acceptable and could be punished in the criminal courts.

It would seem both Fii (Perplexing Presentations) and MUPPETS break all the “The False or Misleading Information offences”.

If the medical Profession cannot or will not understand the perplexing conditions and has no experience of the illness or their symptoms, this is then put under Perplexing Presentations (Royal College of Paediatric and Child Health, 2021)[25] as put forward by RCPCH (who earn money from the courses they provide) as a sign of Fii. Therefore my child is under threat due to misinformation. This then forces him to say he is OK, allow others professionals; including misinformed teachers to gaslight him and I am taken to court and my child taken under the safeguarding being taught to everyone – “as a mother who may in the future cause emotional harm”. Laws just don’t protect me, I am silenced, gagged and bound by untrustworthy and confused direction given by the RCPCH (Gullon-Scott & Long, 2022)[26] as they report in the article there is no diagnosis and so much uncertainty, so why are there so many accusations, who has the ultimate responsibility of diagnosis pathways, it is the Government.

There is no treatment for his ME, though other conditions he has who do have medication to treat his coexisting conditions, however the threats made and lack of consistent knowledge of the robust facts, we are unable to explore these due to Fii safeguarding. This is down to the government, who have been repeatedly asked to take away harmful research and treatment and yet refuse to do so. It is the government who ask for new conditions to be explored and some of the research they have paid for with taxpayer’s money with regard to ME has been found possibly fraudulent. This research has been discredited the world over of how not to conduct a trial. It was called the PACE trial (Hug, Geraghty, & Pheby, 2021)[27]. This has caused misinformation and lack of trust in the medical professionals themselves and also the patients and the public.

What mothers like me are forced to do is beyond words. To rehabilitate our child with ME is like giving sugar to a diabetic. Post Exertional Malaise (PEM) is the inability to sustain any activity beyond - their own pre-PEM state. We are told that gentle or otherwise increase in activity which follows the Graded Exercise Therapy (GET) model is rehabilitative. Yet if this was tracked and on EHCP it would be clear for all to see this is far from the truth. It is used to get very sick children back into school regardless and has caused harm. Parents are also offered/expected to use a form of gaslighting their child with Cognitive Behaviour Therapy (CBT) to convince them they are not sick or any harm is going to come to them. This is also misleading courts who are happy to be misinformed?

 

Even though in 2021, NICE changed the guidelines on ME, the Academy of Royal Medical Colleges refused to adopt them.

NICE new Guidelines NG206 which incorporates social care and education (NICE guideline 206 Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndeome, 2021)[28] and it’s ‘Implementation Agenda requirements hold the key to some resolution, particularly in Suffolk and NE Essex NHS Alliance via integrated-care/sustainability-transformation-plans for patients, adults and children with ME.

 This is co-production work, which I and others are engaged with, falls under your influence and under your ministerial duties. As well as being on your ‘patch’ of NE Essex, so I do hope you find time to inform yourself of this.

Please note: Leading the new Intergrated Care System in Suffolk and North East Essex Talk by CEO ED Garrett,

Date 5^th May 2022 time 18.00 – 19.30 BS Location University of Suffolk Waterfront, Neptune Quay Ipswich IP4 1QJ

 

 

12/

 

·        How do you intend in gaining early support for children and young people and protect mothers and families from the ignorance and misleading information or no information given about their child’s medical disabilities, learning or general disabilities?

 

 

 

 

13/

 

The laws are there for all to read, so what are the incentives that you will put in place to uphold them and remedies for Local Authorities to make quick amends and retraining is put in place for continual learning.

 

14/

 

·         How are professionals going to be kept accountable by you, when so many are not upholding the first 2 GMC Duties of a doctor registered with the General Medical Council and make sure they do?

 

1. Their important contribution to the management and leadership of health services and

2.  The primary duty of all doctors is for the care and safety of patients.

 

The treatment of those with ME shows this is not being upheld. Professionals are given the allowance of confusion and difficulty yet parents who are non-professional in education or health are given no such allowances – they must get it right.

 

If the laws and the system were upheld from the outset of SEN in 1978 (Warnock, 1978)[29], which followed on from The Chronically Sick and Disabled Persons Act 1970 (GOIV UK Chronically Sick and Disabled Persons Act 1970, 1970)[30], the Children’s and Families Act 2014 (GOV UK, 2014)[31]which is now having a post-legislative scrutiny inquiry launched on the 9^th March 2022, an understanding by the Local authorities and of Government of the EHCP would be in place, the sections within them filled out correctly, we would have the infrastructure necessary and fit for purpose. Sadly that is not the case and that needs to change.

 

The answer to these public questions would give us the funding required with fact and figures attached and outcomes clearly seen, a seamless way of supporting and achieving the very best of education as in the Every Child Matters which was set out in 2003 (GOV UK, 2003)[32]. Yet the same failures, which was pointed out then, still continues or is possibly worse in 2022.

 

Failures need to be clearly marked and acted upon.

 

What we experience is an indiscriminate use of child protection, that actively harms children long term, hiding not only individual failures but teams, schools and Local Authority failures too.

 

We have seen that with the Maternity scandal the toxic professionals and the blaming of mothers and we are still silencing those that speak out. What chance do parents with children with extra needs have to speak up and out, when the Local Authority holds all the power with no accountability and bully boy professionals? They even now intend to hold advocacy as their own, giving more control and silencing powers. This needs urgent attention and you need to make sure this is addressed in the SEND review, as advocates like me are imperative to balance and understanding.

 

15/

 

·        Does each “looked after child” get the best of educational assessments, when they come into the system and how is this reported, especially when we can’t even house them and protect them from abuse?

 

Your reform needs to make provision for the continual scrutiny of those children services, especially those taken from parents under Fii through asking for an EHCP. Those young people need to know why they were taken and need a chance later to ask their own questions, it is their human right to know what has happened in their past and their medical history that may impact on their future.

 

It should never be left to parents to hold Governments to account or fight for rights clearly stated. That is the job of Parliament - to challenge the work of the Government. However, we do not see that happening.

 

On the 9^th March 2022 a question was put to the Government by Lord Story asking Her Majesty’s Government how many children have an Education, Health, and Care Plan (EHCP) who have ME. The answer was that the department does not hold data on the number of children who have an EHCP due to having ME (UK Parliament, 2022)[33]. A stunning reply that clearly shows how hidden the truth is.

 

She explained that the department is committed to supporting pupils with medical conditions at school to ensure they have full access to education (UK Parliament, 2022)[34]. Sadly this is not borne out with the lived experience of those with ME/cfs in the past or in the present.

 

Another question was asked with regard to the education of healthcare professionals with regards to ME. On the 8^th of June 2021 Helen Whately MP minister of State (Department of Health and Social Care) provided a written reply to the question from Caroline Lucas MP on behalf of Sussex and Kent ME/cfs society (Sussex and Kent ME/CFS Society Parlimanetary Question -June)[35]. The reply was that each medical school in England sets its own undergraduate curriculum. There is little to no understanding of ME with GP as Gatekeepers to NHS hospitals and no to little provision (Hug, Geraghty, & Pheby, 2021).

 

·         Is this going to change as the Government so far has been detrimental to young people’s lives with this condition and so has the involvement of Royal Colleges of Paediatric and Child Health?

 

16/

 

·        So my question here is - are we lawless and misled with untrained professionals?

 

 

17/

·        How are you going to keep professionals who are protected by ignorance of the facts from harming children with extra needs to enable them to have a level playing field in education?

 

In parliament questions, The Countess Mar drew attention to individuals who have mistakenly been labelled with Munchausen syndrome by Proxy. Fabricating or Inducing Illness (Fii) said Baroness Ashton of Upholland, was favoured as stated in 2003 (Hansard, 2003)[36].

 

18/

 

·        Where was the evidence of this term Fii and where is it now?

 

Opinion or theory should not form Fii or safeguarding guidelines that segregate families or contribute to forced adoption. A longitudinal study of harm from unfounded accusations is urgently needed and in the public interest, as most of the public are parents.

 

19/

 

·        Who asked for the name change and why?

 

I think this alone needs a full public enquiry as anyone can accuse a mother and she has no defence as pointed out above.

 

Now the problems with Fii are well known and so are the issues with incorrect data of individual GDPR. Even when told or given evidence, the Local Authority will not amend their records or EHCPs, nor will local GPs. Their bundles for court hearing are a joke. This is well known behaviour and is renowned (Gullon-Scott & Long, 2022). (Fii) accusations are on the increase when a parent asks for support.

 

20/

 

To enable you to complete the work on the review a full enquiry to Fii needs to be done with a full qualified forensic medical, Social Workers, physio and educational expert team, who understand perplexing conditions as pointed out above with parents with the lived experience as a full part of that team.

 

It is now time to make sure that the figures of these unfounded accusations are recorded and harms it causes noted - for leaning from mistakes purposes and to ensure safeguarding young people is assured and family life is protected.

 

This has been asked for since that 2003 (Hansard, 2003)[37] and just before the cot death scandal was reviled and the unsafe witness of Sir Roy Meadows and the mothers freedom in 2005 (Sweeney & fate, 2021) John Sweeney “22 years on, he fears we have not seen the end of a modern witch-hunt” In 2003 It is clear it was the Government’s intention to bring in the term Fii without robust and clear research or pathway. Clear procedures need to be put in place to take inaccurate and unfounded accusations off records, for the public trust in the educational and medical system to be restored and GDPR upheld. Baroness Ashton of Upholland stated,

 “Well, my Lords if the allegation has been proven to be incorrect, that will be part of the record”.

SARS request show that is not to be the case. Nearly 10 years on we have no way of knowing the damage done, because mothers have faulty records, are silenced and families broken.

 

If those laws to protect the chronically sick and family law were upheld, teachers would have the support and training to enable schools to see how provision can be put in place, at the earliest point of a child’s needs with their EHCP filled out correctly. However, what we have is abuse on all levels of discrimination being carried out to stop provision and the support necessary. Good practice is the rarity and not the rule.

 

21/

 

·        How is the Review going to address this openly and accepting responsibility and move forward with proper accountability?

 

Those good people in the system are not allowed to make the system work. Many are forced to ignore the plight of the children needing support from nursery, to post 16 and into adulthood. They are also threatened or silenced and not allowed to stand up for the parents or the children they are educating. This is down to treating our children as commodities, as in the private sector that we are beginning to see with Academies and Free Schools’. A need for profit over the needs of children is not what we should be accepting or paying for as tax payers.

 

22/

 

·        How is your report going to change this culture of covering up, making a profit and hiding from responsibility?

 

The system is misogynistic, political, discriminative and abusive and allowed to continue by watering down accountability, transparency and humanity. The system is in anarchy with the most evil acts; which we have seen in education, social care, housing and health, all wrapped together when parents ask for help.

 

It needs the whole of the political spectrum to support what is necessary going forward. We have in the UK to understand standards, and be held accountable for them. The UN pointed out our failings in 2017 (Equality and Human Rights Commission How is the UK performing on disability rights?, 2017)[38] with regards to discrimination against the disabled and we are still struggling with inappropriate culture. Through the covid outbreak many autistic young people were asked to sign the ‘Do Not Resuscitate’ declaration,

 

·        How is it possible to put DNR on a disabled persons records, when they are not informed of this as has been the case for some?

 

There are double standards of support and safeguarding between professionals and that of parents.

 

Complaints by parents are not dealt with respect or concern. They are simply denied and covered up; with professional reputations protected, leaving children vulnerable to professional abuse. Protection for professionals is the priority in the system from those in top jobs down to those that have daily contact with our children. We have all seen it around us and in the media and yet nothing gets done.

 

·        What is going to be put in place to give the power to the system already in place and the encouragement to carry out discipline when needed?

 

The public, most of whom are parents, have been told too often, lessons have been learnt, when clearly this is not the case.

 

Litigations games are played to force parents to give up, losing their homes, businesses but most heartbreakingly their children; when they are simply desperate to do the right thing and support their child with extra needs in their health and education. Parents are misinformed, taken advantage of by professionals, who claim they have the best interests of their children at the heart of their workings. Parents, not knowing what it will mean if they fight, make a complaint or ask for help are left in trauma, when they go through the EHCP system and there is no way of recording this and therefore no learning and the same mistakes/targeted gatekeeping are made over decades.

 

All of this is documented and in plain sight for all to see and yet still we see in 2022, the same problems as back in 1978 when SEN was first introduced (Warnock, 1978)[39]. We don’t need to keep going round in circles wasting tax payer’s money on reviews or on court cases, we need appropriate supported professionals, following the correct procedures and the law, anything else is discrimination.

 

When the proper procedures, guidelines and the law is not followed there needs to be resolution in the local area, not sought by parents but by the authorities. Charities also have a responsibility when they see dereliction of duties by professionals that harm children. They need to ask for accountability and proper procedures to be followed.

 

How have we got the 2022 and do not recognise

 

1.      The basics of those with autism, dyslexia, attention deficit and or sensory processing issues, all denied and child and parents blamed for bad behaviour leading to lifetime trauma.

2.      Discrimination and belittling of those with chronic ill health and disability, in health education and social care. With no support given to children or listen to their parental advocates.

3.      Learning difficulties still blamed on the child or parents not putting in the effort.

4.       Bad research or inappropriate research paid for by government funds, talked about in parliament and yet still used in policy making. Such as PACE trial funded by DWP ‘One of the greatest Medical scandals of our time’ (Parliamentlive.tv, 2018)[40] and Fii not even diagnosable, yet parents can be diagnosed with this theory and it would seem by head teachers and school nurses or anyone else.

5.      Mental health used as a weapon on either parent or child, which has no foundation of science or research and belittles the importance of mental health. We are seeing more diagnosis of educational, chronically sick or emotional growth as a mental disorder.

 

 

 

The lowest form of human knowledge is opinion, we all have them and it requires no accountability, no understanding and no empathy, yet most of the time this is what we face as parents when asking for support and some form of empathy for our struggling young people. Yet we are branded as dysfunctional or mentally ill, needing to fit some sort of need in us.

 

The new Children’s Commissioner said that she has no patience for “good enough” (Children's Commissioner, 2022)[41]. That the ambitions of every child being matched by the support around them. Sadly she needs to listen to stretched families, the schools and the lived experience of SEN children to fully understand the reasons of why education is failing our children and attendance low. Why are “looked after child” also being failed and not attending school and abandoned, especially those with SEN needs.

 

Parents are easy targets to blame; we have seen the increase of this in all our media and political arenas. Home schooling is being demonised, along with Education Other than at school, but they are an essential part of our education system from section 61 of the Children’s and Family act 2014 (Mason & Lee, 2021)[42]. Now with young people facing long Covid and those with ME that have faced decades of discrimination in health, education and social care; are we once again going to see discrimination for political gain in your review. Will we see a continuation of “parent bashing” to get numbers up in schools and out of special provision?

 

The highest form of human knowledge is empathy that gives support where needed without being asked, a seamless understanding of need, a way of being able to see the bigger picture of what can be done and how that strengthens our community and our workforce. 

 

Your first duty is to our children minister, it is to safeguard them, their safety especially when we have faced with such disregard by professionals that we meet, silenced by them and made to stand back and watch the trauma of our child continue. Their health and wellbeing is in your hands. Look around you as MAY 12^th is ME AWARENESS DAY. Will you turn your office blue?

 

You can’t cite ‘I did not know’ as ignorance is no defence in law. I sincerely hope the words and your reassurance that you will be working hard to make this right come true.

 

Sadly after 8 years of fighting to get facts at the front of health, Education and care for my child and thousands of others, I/we still face the opinion by professionals that do not or will not understand, that tell most of the parents I know, incorrect procedure and facts.

 

Sadly I was failed at school being very dyslexic myself I was put in the lowest academic set. I was belittled because my reading was fragmented and my writing was like a dying spider crawling across the paper. I was told I would never amount to much.

 

I was told not to fight for my older children’s rights for the support that they needed, because “I did not want them labelled did I?”

 

It is with my youngest child and all those thousands like him, who fight every day to breathe, to survive, that I write to you, that I stand and make their voices heard. I know you cannot or will not listen to them as the system has taken their voices. You do need to listen to them to all of us that live the system, before the system collapses and our society and businesses crumble.

 

I am very sceptical that you will listen, but I am willing to be hopeful you will give our children the support they need through EHCPs. However, it will be the deeds of the future that will determine if the outcome for those with Special Educational Needs were supported by your paper and not just empty rhetoric that we hear on a daily basis.

 

Remember these young people are the future, they are the work force of the hidden disabled and they are as worthy of your/our attention as those that have no barriers to education.

 

What it takes to be a mother like me - a lot of knowledge because unlike siloes I have to know everything about my child’s Health, Education, Care and social work laws and what needs to happen. It should never be like this!

 

As always my letters are open on my blog for all to read and will be posted at the same time I send this email to you and also given to all who have had an interest in our children.

 

Kind Regards

 

Tina Rodwell

 

 

 

Childrens Commisioner. (2022). Where are England's children? Interm finding from the children's Commissioner's Attendance Audit. Childrens Commissioner.

Clements, L., & Aiello, A. L. (2021). Instituationalising parent carer blame, the ecperineces of families with disabled children intheir interactions with English local authority children's serices departments. Cerebra.

GOIV UK. (1970). Chronically Sick and Disabled Persons Act 1970.

GOV UK. (2003). Every Child Matters .

GOV UK. (2014). Childrens and Families Act 2014.

GOV.UK. (2010). EQUALITY ACT 2010. Equality Act 2010: guidance - GOV.UK (www.gov.uk).

Gullon-Scott, F., & Long, C. (2022). https://academic.oup.com/bjsw/advance-article/doi/10.1093/bjsw/bcac037/6543955?login=false. Oxford Academic, The British Journal of Socail Work.

House of Lords Livrary . (2022). Education: Multi-academy trusts. UK Parliament.

Information, advice and Support Program . (n.d.). Health Assessments and Duties . National Childrens Bureau.

Noble, J. (2020, February 17). School trust whcih breached discriminationlaws awarded five special educational needs contracts by Suffolk County Council. East Anglian Daily Times.

Royal College of Paediatric and Child Health. (2021). Perplexing Presentations (PP)/Fabricated or Induced Illness (FII) in children -guidence. Child Protection Portal.

Sir Frances, R. (2015). Freedom to Speak UP. UK Govenment .

South West Paediatric Club. (2017). A Day with the MUPP(ET)S - Medically Unexplained Physcial, Psychological Symptoms.

Stevenson, L. (2016, September 20). Munby: The system is facing a crisis, and we have no clear strategy. Community Care, pp. https://www.communitycare.co.uk/2016/09/20/munby-system-facing-crisis-clear-strategy/.

UK Parliament. (2022). Written Questions submitted by Lord Story. UK Parliament.

UK Parmiament. (2003). Written Questions child Abuse. UK Parmiament.

Warnock, H. M. (1978). Report of the Committee of Enquiry into the Education of Handicapped Children and Young People. Her Majesty's Stationary Office .

 

 

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[1] SEND Code of Practice 2014

 

[2] Chronically Sick and Disabled Persons Act 1970

[3] (Royal College of Paediatric and Child Health, 2021)

[4] (Clements & Aiello, 2021)

[5] (Jones, 2021)Perplexing Presentation/Fabricated or Induced Illness: A matter for Schools

[6] NICE Guidelines Safeguarding  2021

[7] Clements, L., & Aiello, A. L. (2021). Instituationalising parent carer blame,

 

[8] Equality Act 2010

[9] The Robert Frances Review 2015

[10] FOMIGuidance

[11] (Bucanan, 2020) School trust which breached discrimination laws awarded five special educational needs contracts by Suffolk County Council

[12] (Noble, 2020) School trust which breached discrimination laws awarded five special educational needs contracts by Suffolk County Council

[13] Firm given ‘value for SEND’ contract slashed council care plans Noble 2020

[14] (Schools Week, 2022)

[15] Firm given ‘value for SEND’ contract slashed council care plans (schoolsweek.co.uk)

[16] Education: multi-academy trusts - House of Lords Library (parliament.uk)

[17] Opportunity for all - Strong schools with great teachers for your child (publishing.service.gov.uk)

[18] Autism and learning difficulties: MP urges closure of long-term units - BBC News

 

[19] Community Care, pp. https://www.communitycare.co.uk/2016/09/20/munby-system-facing-crisis-clear-strategy/

[20] Opportunity for all - Strong schools with great teachers for your child (publishing.service.gov.uk)

 

[21] Information, advice and Support Program . (n.d.). Health Assessments and Duties . National Childrens Bureau.

 

[22] (National Health service Act 2006 Section 3, 2006)

[23] (South West Paediatric Club, 2017)

[24] (Strategy & External Relations Directorate, 2015)

[25] (Royal College of Paediatric and Child Health, 2021)

[26] (Gullon-Scott & Long, 2022)

[27] (Hug, Geraghty, & Pheby, 2021)

[28] (NICE guideline 206 Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndeome, 2021)

[29] (Warnock, 1978)

[30] (GOIV UK Chronically Sick and Disabled Persons Act 1970, 1970)

[31] (GOV UK, 2014)

[32] (GOV UK, 2003)

[33] (UK Parliament, 2022)

[34] (UK Parliament, 2022)

[35] (Sussex and Kent ME/CFS Society Parlimanetary Question -June)

[36] (Hansard, 2003)

[37] (Hansard, 2003)

[38] (Equality and Human Rights Commission How is the UK performing on disability rights?, 2017)

[39] (Warnock, 1978)

[40] (Parliamentlive.tv, 2018)

[41] (Childrens Commisioner, 2022)

[42] (Mason & Lee, 2021)