We reproduce below the transcripts of all four of the presentations on Child Protection Issues that were given to the All Party Parliamentary Group on ME at Westminster on Wednesday, July 2.
JANE COLBY, EXECUTIVE DIRECTOR, THE YOUNG ME SUFFERERS TRUST
Sick children and innocent families are being caught up in a web of professional misunderstanding about ME. It seems to these families that the presumption of innocence that is enshrined in British law does not apply to them.
Proceedings are held in the Family Courts, which do not demand the same level of evidence as the criminal courts. Secrecy adds to the difficulties in these cases.
The children's chapter of the Department of Health report of 2002, which was not widely circulated to professionals, stated:
- In cases of CFS.ME, evidence clearly suggested of harm should be obtained before convening child protection conferences or initiating care proceedings in a family court.
- Neither the fact of a child or young person having unexplained symptoms nor the exercising of selective choice about treatment or education constitutes evidence of abuse.
It would appear that child care professionals often do not proceed in this way; one professional's suspicions typically have a ripple effect, influencing all the other professionals who come into contact with the child.
A great deal has been written about Munchausen's Syndrome By Proxy (now called Factitious Induced Illness) in the child protection context. in Australia, the Queensland Appeal Court judgement of R v LM QCA 192 (2004) ruled that the term was inadmissible evidence. Holmes noted that MSBP/FII was ‘circular reasoning' that ‘explained nothing'. That legal reasoning was adopted by the UK High Court in the Family Division (A County Council v A Mother and A Father and X, Y, Z children (2005) EWHC 31 Fam). In the case, Ryder stated that he hoped MBSP would be ‘consigned to the history books'. However, the term FII is still in use in its stead.
If a family in suspected of child abuse, the following procedure is initiated:
- Within 24 hours: an initial decision is made about whether to pursue a child protection Section 47 investigation.
- Within seven days: an initial assessment must be done which involves seeing the family.
- Within 30 days: a core assessment must be done.
Thus the process moves swiftly and parents are unprepared as to how to fight it.
The Social Services Manager who advises the Trust feels that ideally, if anyone becomes the subject of a Child Protection investigation and it is not clear if the child's symptoms are due to ME, the family should be informed of organisations that can advise and assist them.
The Department of Children, Schools and Families has published ‘Working Together to Safeguard Children', which is the statutory guidance in relation to child protection.
There is a general theme of giving information to families who are the subject of Child Protection enquiries, except where to do so would place the child at further risk. This is subject to a fair degree of interpretation in individual cases.
In practice, it appears that families in this situation are not being adequately informed of their rights or of the procedures that are being followed.
There is another important theme of the guidance; the wishes and feelings of the child should always be sought, as should the child's account of what has been happening to them.
In ME cases, the child may not be well enough for a detailed discussion with someone they don't know, especially where ME-friendly procedures are not used, for example, short discussions with rest breaks. Where workers do communicate with the child, they do not always attach great weight to what the child says.
The Trust takes the view that the Department of Children, Schools and Families should urgently alert Social Services professionals to the frequency of misunderstandings in cases of ME.
The Trust also recommends that a leaflet clarifying the procedures that should be adhered to by professionals in child protection investigations should be given to families under suspicion, and they should be informed of their rights.
Misunderstandings over rehabilitation
Many misunderstandings have arisen amongst professionals without specialist knowledge of ME. Physicians usually consider the term ‘ME' as another name for Chronic Fatigue Syndrome. Generally, they have not read the original virology papers, the historical records of ME epidemics or patient profiles.
This has had a knock-on effect on patients and on families whose children have classic ME. The loose symptom profile of CFS means that various causes of fatigue, some of which are of mainly psychological origin and respond helpfully to graded exercise therapy, are caught under its label.
Moves to standardise rehabilitation treatment for those with ‘CFS' have proved counter-productive for patients fitting the classic ME symptom profile. Patient surveys show that of the people with CFS who have been given graded exercise therapy (GET) the majority saw an exacerbation of illness, rather than recovery.
A number of consultants have had to apologise when their patients, who were previously sufficiently recovered to walk, became wheelchair-bound after rehabilitative therapy.
Misunderstandings over mental capacity
SPECT scans on the brain of people with ME confirm that, when mental or physical effort is made, blood flow to the brain decreases, which is the opposite of the normal pattern, where demand increases blood flow. Intellectual confusion and further illness typically result from too much effort; in practice, this can be very little effort compared with the healthy person.
Principles of interviewing people with ME include the need for the interviewer to speak slowly in order for the words to be processed into sentences, and the need to avoid saying anything else while the brain is processing the previous remark. This is because a typical severe ME sufferer recognises words but is unable to process them into meaningful sentences unless sufficient time is allowed without other distractions.
Typically also, any interview needs to be short, and should be broken into shorter sections of around 15 minutes maximum. Without such specialist techniques, the interviewer is unlikely to get a fair picture of what the patient can actually understand. In addition, the patient usually forgets words, rather like someone with a mild stroke, and may not, to start with, say exactly what they mean to say. An inappropriately long interview is virtually guaranteed to exacerbate the illness. The patient may eed someone who knows them well to speak for them due to severe exhaustion.
None of this mean that a person with ME is not mentally capable of knowing how they wish to be cared for, nor where they wish to be.
Misunderstandings over parental or carer influence
Large-scale misunderstandings about parental influence exist among physicians, teachers and social workers with a poor understanding of classic ME, as professionals are not trained in this illness. The Trust's caseload of families seeking help would suggest that these misunderstandings are on the increase.
In 1999, the Trust co-designed a questionnaire for the BBC which was sent to families whose children had ME. It received a 62% response and revealed that 7% of children from families questioned had been subject to child protection proceedings (court proceedings either threatened or carried out) and 4% had been labelled with Munchausen's Syndrome By Proxy. National statistics at that time showed that MSBP affected just one in 100,000 families so clearly that this was a statistical anomaly. The Trust is not aware of any of these cases having, in the end, been shown to be due to parental interference with the child's medical condition, recovery or treatment.
Several years after the BBC survey, the Trust carried out its own survey ‘Our Needs, Our Lives' in the county of Essex, with a grant from Essex Community Foundation Local Network Fund. It revealed that 25% of families involved had faced the suggestion that parents were causing the illness, and 79% reported that doctors had misunderstood their illness as psychological. The Trust is not aware of any of these cases eventually having been found to be due to parents or to psychological factors.
These common misunderstandings appear to occur mainly because physicians and social workers have found it difficult to appreciate that severe and chronic disability would be due to a condition as benign sounding as Chronic Fatigue Syndrome. They often regard it as partly psychological, either in origin, in perpetuating factors, or both. CFS is often treatment as if it were a mental health problem and professionals may propose that carers have in some way caused or exacerbated the illness or sabotaged recovery, out of a personal need to keep the patient dependent. The Trust is not aware of any such suggestion having eventually been found to be the case in its own work.
The care and treatment of people with ME is greatly affected by the split in the medical profession between those who have knowledge of classic ME and the existence of subgroups of CFS, and those who do not.
It is therefore a misperception that the divide is between the medical establishment and the patient support fraternity. When the government Chief Medical Officer set up a Working Group to report on what the DoH now terms CFS/ME, I was an invited member of the Group and assisted specialist paediatricians to produce its Children's Chapter (Department of Health 2002).
Comnon misdiagnoses/sensitivity to medication
Common misdiagnoses are: anorexia nervosa, school phobia, Pervasive Refusal Syndrome; separation anxiety.
Sensitivity to medication is common and can produce side-effects; specialist doctors recommend smaller doses and/or alternative drugs.
Jane Colby then introduced Joanna Smith.
Ladies and Gentlemen
My name is Joanna Smith and I am a mum of 2 teenagers who are suffering from ME.
I work as a Senior Adviser for Brunel University Students’ Union and am an experienced legal adviser of many years.
I am here to tell you my story about how having children who are ill with ME can lead to the nightmare of Child Protection proceedings.
My older daughter, Patricia fell ill in 2001. It took six years for the diagnosis to arrive. Our GP said he doesn’t know anything about ME. As there are no local ME specialists, Patricia was referred to the Adolescent Health Clinic at Great Ormond Street. I was so happy- it is a world famous hospital, I assumed they’ll be able to offer proper help and support.
I was bitterly disappointed. Not only the consultant there referred to ME as a “fatigue” which is an entirely different thing, he proceeded to conduct a battery of psychological tests, spending less then 15 minutes of our 3 hour long visit on physical symptoms and needs. My daughter was struggling to sit up, answer his questions, was getting confused and had to continue without being offered a rest break and losing her ability to participate – as a consequence she has suffered a very bad relapse.
Great Ormond Street Hospital’s physiotherapist ignored Patricia's pleas that she'd rather not get on the exercise bike because she was really exhausted and nauseous and was worried that she’d fall.
I was in despair – Great Ormond Street Hospital is not a good place for kids with ME. The consultant there would not even support our disability benefit application because, as he stated, Patricia "may recover in future" and that describing her as "incapable" would be bad for her chances of recovery.
He wrote to me to say that it is not helpful if she is thinking herself ill!
So the medical side: a nightmare.
On the educational side things were not faring much better. Patricia was granted a place in one of the best High Schools in this country. Her attendance was falling, yet she has managed to stay in top sets in all core subjects. We were reduced to writing pitiful begging letters to her Head of Year, asking for assistance. I still want to cry when I think about those days.
In year 11 we realised that she will not be able to attend at all. It was like we have disappeared from the school and the LEA’s horizon. For the school – Patricia has stopped being a useful league table statistic, for the LEA – I was a nuisance. My calls went unanswered.
Throughout that year I received one call from the LEA and a few emails from the Head of Year; none offering practical support.
Patricia by then was suicidal from pain, insomnia and distress. And when I say suicidal, I don’t mean she vaguely thought about it – she actually attempted to take her life.
It took a year-long complaint, and the assistance of an educational specialist solicitor, for the Local Authority to admit to serious shortcomings in provision of education for my ill child. At first they denied any wrongdoing, prolonging my anxiety needlessly. Then they wanted to offer a few hundred pounds. Finally, they wrote to the Local Government Ombudsman to say they’d offer £3040. (That was in May – they still haven’t paid.)
Then, in February of this year, my younger daughter Emily fell ill and our Child Protection nightmare began.
After a few months of slowly deteriorating, I could not pretend otherwise – it looked like she too had ME.
Emily’s school, where I am a Governor, was not happy about her attendance, which slowed down to a halt, when she started to come home shaking and throwing up from exhaustion. They requested a diagnosis. I understood this perfectly – the school has a right to ask for it in light of a prolonged absence.
So the vicious circle started again – a GP who refused to acknowledge ME, a long wait for a paediatrician’s appointment, and the school pressuring me for medical evidence.
The school would not believe me that there is a tendency for clusters of ME in families- even when I sent scientific papers.
The letters from the school started to arrive – terse, harsh letters about deregistration and penalties.
I knew I must keep the dialogue with the school. I sent publications, which consisted of brilliant guides by Jane Colby for education professionals, I explained how these are relevant to us, I explained that, by now, I have considerable experience of ME and that Emily is definitely not well. My requests for a meeting were ignored, and when I got to speak to someone at school, I was met with barely masked scepticism.
We were visited by a Social Worker, on referral from the school – without the school notifying me about it (the lack of notification being typical in child protection procedures). The school wrote to the Social Worker – and I have seen this letter- that Emily is copying her older sister, that she does not look unwell and that she is not reporting health problems to the school nurse.
The Social Worker knew nothing about ME. I gave her a lot of information and explained that ME kids may not always look unwell (of which I have already informed the school) and that Emily, previously very active and sporty, had 6 years to copy her older sister, so why now?
The Social Worker called me a few days later to explain that there is no case to answer, the file is closed, she is happy that there is no need to continue the assessment.
Yet the worst came recently, when I was informed that, on the advice of a Child Protection Nominated Nurse the school is requesting Social Services to re-open the case. No explanation why, no information about allegations, no advice where to seek support. I was ill with shock.
The school has requested that the file is re-opened, on child protection grounds, clearly due to their lack of knowledge and understanding of ME and despite a Social Worker’s assertion that there is no need for further assessment.
The irony of it all is that one of my responsibilities as a Governor is child protection issues. Also, please note that I am talking about the same Local Authority which already admitted inadequate support in the case of my first daughter.
The school, it seems, is now prepared to ruin my professional reputation; the Principal has written to my employer and other, outside parties, and invited my employer to instigate gross misconduct procedures as I used post franking facilities -which my employer allows anyway, upon reimbursement – to send one letter to her. She also circulated my email with all its confidential details about my daughter.
The overall picture shows two children with complex neurological disease, in London, in the 21st century, without access to adequate medical assistance and without access to education. Furthermore, the level of ignorance is so shocking, that despite the wealth of knowledge about ME, Child Protection measures are still brought against families like mine.
I am sure you will agree: it is an appalling situation.
NB I would just like to add that without the support of The Young ME Sufferers Trust I don’t know how we would have coped so far.
Mary-Jane Willows, chief executive of the Association of Young People with ME, then introduced Ian Webster.
My daughter Victoria ( " V " ) is severely ill with ME. She is 14 years old. She has probably had it since she was 2 years old but was only diagnosed on 2005. It took the medical profession some 10 years to make a diagnosis and clearly they had some difficulty in coming to terms with the illness. She is currently bed bound and has not been to school for 3 years.
SS were initially involved in helping V as a Child in Need but were limited in what they could offer and they dropped out of the picture very early on. In July 2007 V was designated a social worker following a referral. The referral was actually on the grounds that we were not getting adequate medical assistance at the time. Despite our best attempts to educate the social worker she had as much difficulty in coming to terms with the illness as the medical profession. By this time we had a diagnosis of ME. However the social worker either did not believe us or did not appreciate the severity of the condition.
In January 2008 V was seen by Dr. Crawley, a specialist ME consultant , for a second opinion. She devised a care plan, provided training for the local professionals involved ( although not all attended ) and offered ongoing support ( which was not taken up )
Child Protection Procedure
Initially the social worker’s involvement was low key and our relationship was workmanlike. We now have documentary evidence that she wanted to take CPP steps some time ago but was dissuaded by both V's doctor and by her manager. However by April 2008 she had enough support from some of the professionals (non-medical) to apply to put V on the At Risk Register.
The criteria for placing a child on the at risk register are when a child is at risk of either physical or sexual or emotional abuse or neglect. The correct procedure in our case would have been to treat V as Child in Need. However we understand the reason for the proceedings was to enable the professional to have more input in the care plan. They thought they could do more to make V better. They failed to take account of or even grasp the concept of “ booming and busting.” This was explained to us by Dr. Crawley and experience has since shown that this is the key to V’s recovery. Any therapy that ignores this concept will not work and would very likely be dangerous and occasion a severe relapse in V. Dr. Crawley explained very clearly to us and the professionals that progress may be slow and needed to be taken at V’s pace with her goals at the centre of any decisions made.
There was a period of a few weeks between our being told of the proceedings and the date of the hearing. During that time we were involved in a great deal of paperwork. V was interviewed on a number of occasions by non medical professionals. This involved her expending great deal of energy contrary to the therapy recommended by Dr. Crawley.
There was no evidence of abuse or neglect and this came out very clearly in the early the hearing. Normally at a hearing the professionals make their representations and at the end a vote is taken as to whether the child should be placed on the at risk register. In our case the police and V's doctor both gave evidence that the case did not meet the criteria for entry on the At Risk Register and with the Chairpersons consent no vote was actually taken. V was not placed on the Register.
Dr. Crawley had earlier written to the social worker strongly advising against the proceedings and made it clear that she would support the family should the matter proceed against her advice. We obtained a copy of the letter and gave it to Chairperson at the beginning of the hearing. The social worker never mentioned the existence of the letter. We wonder if the Chair would have been made aware of the existence of the letter if we had not been able to produce a copy. In addition V's doctor stated that the case did not meet the relevant criteria i.e. both of V's doctors were against the application. My impression is that the proceedings were being driven by non medical professionals. Bearing in mind that this was an illness case and that the welfare of the child is paramount this is worrying.
The hearing was administrative rather than judicial. The professionals made their representations but we could not cross examine them. Thus their representations were unchecked unless the Chairperson raised queries. We were represented by one of my business partners and V was represented by Mary-Jane Willows the CEO of AYME. Both of them put in a great deal of time and a lot of hard work on our behalf for which we are unable to adequately express our gratitude. We worked as a team and involved V. What became clear at the hearing was the fact that the professionals were not communicating either with each other or adequately with the medical professionals and were not acting as team.
The meeting was attended by a large number of people who we did not know and still do not know what their involvement was in V's case. We calculated there were nineteen people at the hearing. As it turned out the matter was not put to a vote. However the non medical professionals outnumbered the medical professionals by approximately four to one. Thus if all the medical professionals had voted against V. being placed on the Register they could have been outvoted. We would be in the position of a child in an illness case being placed on the Register against the express advice of the medical professionals. As the welfare of the child is paramount this is worrying.
The proceedings were wholly misconceived. We won the day because
1 The Chairperson was excellent
2 Excellent representation by Mary-Jane Willows on behalf of V
3 Excellent representation by my colleague on behalf of my wife and myself
4 Dr. Crawley’s strongly worded written advice against the proceedings
5 The view of the police and V’s doctor
6 Our ability to work as a team in contrast to the approach of the professionals
Effect on V and the family
The proceedings were stressful for the family and disrupted V’s therapy. The family had to cope with an extra and unnecessary burden. Stress is known to have a detrimental effect on people suffering from ME. V has been very ill for a long time and has coped with the illness admirably. She is strong willed and coped with the proceedings very well although she should never have been put through coping with this extra burden. All she has tried to do is get better. She was told by the professionals that she was not doing enough and she now feels that the professionals do not trust her . She did not understand why , bearing in mind the nature of the illness and that she was following the recommended therapy. She asked us what had she been doing that was wrong. We told her she was not doing anything wrong and that she was complying with the care plan. The proceedings disrupted her therapy which resulted in a deterioration in her health which in turn resulted in a regression of her condition thus reversing previous periods of recovery. A great deal of time was spent on the proceedings which would have been better spent caring for our daughter.
1 Child protection proceedings should not be used in illness cases in the absence of evidence of abuse or neglect. There are insufficient checks and balances to prevent non medical professionals overriding the wishes and advice of the medical professionals
2 There should be a presumption that the child is a Child in Need and not a “child at risk”.
3 If ME is diagnosed , or earlier if it is suspected , a service plan should be adopted involving parents and child and all relevant professionals. It is essential that the family and the professionals work as a team and trust each other. In our case the professional were not working together with disastrous results for V. If CPPs are instigated trust breaks down completely and the ability to work as a team is lost. The impact on the child and the family cannot be reversed once the damage is done and can only lead to further distrust between those who should be acting in the best interest of the child.
4 In illness cases the team leader must be a doctor with ME experience. In our case the non-medical professionals had far too much leeway in a matter in which they had too little experience or understanding.
5 In CPPs parents should have legal representation and legal aid should be made available. The decision of the hearing is too important to the welfare of the child to allow non-medical professionals to make important decisions in illness cases without being brought to account.
6 Remember that the welfare of the child is paramount.
MARY-JANE WILLOWS, CHIEF EXECUTIVE, ASSOCIATION OF YOUNG PEOPLE WITH ME
AYME has supported families like the Webster’s for almost twelve years. It was hoped that after the CMO’s report in 2002 things would improve – they didn’t!
Then in 2004 AYME was involved in the development of the Royal College of Paediatrics and Child Health Guidelines. Again we were optimistic that these guidelines would take the pressure of parents, children and young people with ME and to a certain extent, for a while certainly amongst healthcare professionals, there did appear to be a shift – but not for long. In 2004 the Department for Education and Skills produced, with input from AYME, an exemplar for GP’s on CFS/ME – did anyone read it?
Finally last year we received the NICE Guidelines and however contentious some of those present believe them to be AYME has used them as a tool to fight for care for our members and have had positive outcomes. They have been a valuable tool in the fight in cases like the story you have heard to day but it still hasn’t put an end to it!
What good is all the money spent on this guidance if no one reads it or takes any notice of it, or chooses to misinterpret it!
AYME supported 37 crisis cases in the last year alone, the majority of whom were threatened with Child Protection proceedings. All of them families who were put under protracted periods of additional stress and anxiety – sometimes for many months -whilst professionals gathered information which is readily available should they choose to look in the right places.
The majority of the cases brought to our attention came from professionals in education and a few from those with a background in social care. Even when parents, advised by AYME, provide them with all of the guidance previously mentioned, they still proceeded ! Again you ask why, how can that be? Well they just can’t accept that something more can’t be done. To quote several of those involved: ‘ we just want to speed up the process’, ‘get things moving’, ‘break the close bond the parents have developed with their child’ (as if that is a crime) ‘get them back to school where they belong with their peer group’.
How offensive is this for parents to hear. Don’t they know that if only it were that easy we would have a queue a mile long. These parents will do anything to help their child sometimes spending a fortune chasing miracle cures which we know don’t work. Who can blame them when only 25% of the country is provided with specialist CFS/ME Services.
Another vital point is that the Guidelines all, including NICE, make it absolutely clear that no one should be forced into a treatment program they don’t agree with. To quote Dr Crawley ‘There is no evidence base for the best way to proceed in children who are severely affected. I advised the family based on experience and the evidence for adults. However, even if the family did not engage with this, there would be no reason for this to be a child protection issue.’
How much more clear could she have been but they still chose to proceed even though Dr Crawley made it clear she would speak in court should it come to that for the family.
The necessity for a family to follow a particular course of treatment or refusal to do so, is not sufficient cause for professionals to follow this damaging route. It is my belief that this position is being exasperated by the drive and pressure in education for attendance figures to be met, and to meet targets and rate highly on league tables. Not in the best interests of the child.
Driven by these statistics in 2007 AYME chaired a working party of highly respected professionals, from health, education and social services all with a child protection background and developed ‘Child Protection Guidance for professionals in education and Social Services’. Even with all of this we continue to see a rise in cases.
Something must be done now as a matter of real urgency to stop this damaging and debilitating process from putting yet more families through an unnecessary process. For these professionals to put their energies into the genuine cases we read about daily in the press where children are abused, neglected and yet missed by those people persecuting my members. The cost of pursuing these cases could be better spent.
When I first joined AYME I supported a young person who was forced, against her and her families wishes, as a ward of court into hospital. It took 18 moths and re-mortgaging the family home at a cost of £60,000 and a High Court battle to get her home. In court nothing was ever produced, no evidence was made available to prove why this action had been taken. The understandable result is a young woman and family who have lost faith and trust in all professionals. They now struggle on alone rather than ever risk asking for help of any kind except from the charities that support them. There must never be another case like this – but there ARE even as we speak. Three as vulnerable young adults.
To close with a quote from NICE
The NICE Guidelines: ‘should be read in the context of all the recommendations and be specially tailored to suit individual choice, need and level of severity'. Throughout the document it talks about: shared decision making, collaborative relationships, taking account of preferences and experiences, the patient being in charge of the aims of the programme and the choice of programme’ and finally and most significantly ‘people with CFS/ME have the right to refuse or withdraw from any component of their care plan without this affecting other aspects of their care’.
This guidance is not being followed.
AYME calls for the following actions to be taken:
1. A directive to be issued by the RCPCH for all paediatricians to refer to the colleges’ guidelines when treating children and young people with ME.
2. ME to be included in the training of all GP’s and Paediatricians.
3. That all parents under suspicion of putting their child at risk are informed of their rights and are given the details of an organisations who can support them.
4. The cost of pursuing these cases is investigated.