I received a reply to my submitted post "Young people with ME dismissed by NHS professionals"
0 Comments
Do you think there should be a home education register? NO. Why do you not support the concept of a duty on each LA to maintain a register? Education is the sole responsibility of the parents and school is an opt in facility and one option for parents to provide this education. Due to many schools failing in both education and safegarding of children, parents are rightly acting in their role of "responsible person" and moving children out of substandard education. Any perceived safeguarding or radicalisation fears should be dealt with seperate to home education as they are seperate issues. Local authorities have the right to issue an order to attend school should a child not be receiving an education. Local authorities and childrens services have a duty to safeguard all children where ever they are educated. Radicalisation often happens to children who are educated in mainstream school. For example the Manchester bomber was educated in the mainstream Manchester education system and many young children who have left for Syria to join ISIS have been educated in the mainstream education system. We are yet to see any link between home education and abuse or radicalisation Should such a register specify whether children are attending an educational setting (other than their own home) during school hours? Add comments if you wishNO The vast majority of home educated children do not remain in their own home between traditional school hours. School hours were developed to be convinient for schools and not for optimal learning. Personally, learning never stops and we visit a variety of educational settings. I would be interested to see a definition of "educational setting" as we visit museums, farms, sancturies, play areas, other home educators homes, theatre, home education specialist sessions with a variety of providers. If you are going to include this information it needs to be defined appropriately. What is an educational setting? What is included here? Does this mean flexi schooling? Illegal schools? Free schools? Tutors? Organised home education visits? Informal home education visits? Should the register be widened still further to also include children who are being educated under s.19 arrangements? Add comments if you wishNo Children who are home educated in Pupil Referal Units and home tuition provided by the local authority to a child who is too ill to attend school, but still enrolled with school is not home education. However there should not be a register anyway Should the register include flexi-schooled children (ie those who are educated at home or elsewhere for some of the week during school hours but are also on the admission register of a state-funded or registered independent school)? Add comments if you wishNo Flexi schooling is considered home education and would come under simular legislation, but there shouldnt be a register anyway What information as a minimum do you think the register should contain about each child?None Do you think DfE should prescribe a national format for the register? Add comments if you wishYes If there was a register it would be important that it was national format and did not breach data protection, but there shouldn't be a register Do you believe that local authorities should share information from their register with other local authorities and other agencies? Add comments if you wishNo That would breach data protection, data should only ever be shared if there are legitimate safeguarding concerns. Home education alone is not a safeguarding concern Do you think that a local authority should include any information about a child on its register which has been legally obtained from other agencies? That would breach data protection, data should only ever be shared if there are legitimate safeguarding concerns. Home education alone is not a safeguarding concern Do you agree that a register held by a local authority should be open to inspection by other bodies as prescribed by the Secretary of State, in order to check whether the local authority is carrying out its obligations to maintain the register?No You do not specify what authorities this would be, so I cannot agree to it Do you agree that local authorities should have to make annual returns of collated data from the register to DfE for statistical purposes? Surely that would be the entire point of the register, which should not ever happen Do you have any other comments on either the principle of registration or practical issues related to registration on the basis proposed? The government will not discover purposefully hidden children with a register that relies on parents coming forward, that is nonsensical Do you agree that parents should be under a legal duty to provide information to their local authority about a child who is within scope of the proposed registration requirement?No If a duty on parents was created what data should parents have to provide about their child? None Do you agree that there should be a consequence for parents for failing to register details of a child for the purposes of registration?No Whether or not your response to (3) was ‘yes’, do you think that the most effective consequence for non-compliance with the registration process is that it authorises the local authority to begin the school attendance order process by serving a s.437(1) notice on the parents, which begins the formal process of considering suitability of education and whether a child should attend school?No Whether or not you favour any consequences of non-compliance, what alternatives to initiation of the SAO process would you prefer as an effective way of securing compliance?Not wanting to be on a register that is being started because home educators are allegedly child abusers or radical ISIS members is not indicative of educational provision. This whole exercise is to cover up the failing education system that parents are rightly taking their children out of, or in many cases, the children are being illegally off rolled from. Do you have any other comments about the concept of a legal duty on parents to supply information for the purposes of the proposed register? There is no need for this register, the parents who would supply information are already registered with health services and known to the LA in many cases Do you agree with the general approach that the proprietors of settings providing education in school hours - other than specified types of school - should be under a duty to supply information to local authorities about any child in scope of the proposed register?No Which settings do you think should be included in the scope of the duty? That would breach data protection, data should only ever be shared if there are legitimate safeguarding concerns. Home education alone is not a safeguarding concern Which information should proprietors of the settings in scope be required to supply on request to the local authority about a child in scope of the registration requirement? That would breach data protection, data should only ever be shared if there are legitimate safeguarding concerns. Home education alone is not a safeguarding concern Regardless of your answer to the previous question, which type of sanction do you think would be most effective? That would breach data protection, data should only ever be shared if there are legitimate safeguarding concerns. Home education alone is not a safeguarding concern Do you have any other comments about the concept or details of a duty on the proprietors of settings to provide information about children who attend their setting and fall within scope of the registration requirement? That would breach data protection, data should only ever be shared if there are legitimate safeguarding concerns. Home education alone is not a safeguarding concern Do you agree that there should be a statutory duty on local authorities to provide support on request to parents who educate children at home, of a type to be prescribed by the Secretary of State in regulations?NoIf such a duty was to be created which of the following should it encompass?Local authorities should provide adequate schooling for those who do not wish to home educate and make schools provide adequate facilities for SEND pupils instead of failing and/or off rolling them What are the potential difficulties, apart from availability of resources, in ensuring that such a duty is properly discharged by a local authority?Home education rates will only increase unless you tackle poor provision in school Should the duty to provide support on request be limited to children whose details are included on the proposed register?No Should other mechanisms be explored for enhancing access to public examinations for children educated at home, and if so, what?No we never asked for that, make school provision adequate for those that want it Do you have any further comments on the issue of local authority support for home-educating families? Elective home educators do not want "support" from local authority, those that need support are those forced out of education by failures, bullying and unrolling, which all needs tackling Do you consider that support for home-educating parents should be provided by the Department for Education?Yes Regardless of your answer to the preceding question, which forms of support do you think particularly suited to delivery on a national rather than local basis? Elective home educators do not want "support" from local authority, those that need support are those forced out of education by failures, bullying and unrolling, which all needs tackling Do you have any other comments on the government’s proposals for legislation relating to registration, and support for home education?Educational provision within schools is failing many children especially those with SEND, this is the area thats needs funding and support I undertook a self selecting survey about NHS care for children and young people with ME and received 151 responses. I am particularly interested in this at this time due to the Parliament debate on ME this January (2019) Steve Brine, Health Commissioner dismissed the ideas that : 1. People with ME are dismissed by their doctors 2. People with ME are coerced to do Graded Exercise Therapy My last article Policy funnels families into unwarranted child abuse shows how refusal to force a child to undertake Graded Exercise or failure of the child to *improve* whilst doing this dangerous and debunked therapy, leads directly to child protection and false allegations of fabricated and induced illness. Clearly, young people with ME are coerced into doing Graded Exercise Therapy, regardless of the wording of the NICE guidelines. Steve Brine quoted these guidelines and the fact that they clearly say that a patient can refuse treatment and that this refusal will not affect their ongoing care, to dismiss this very real problem of abuse of people with ME. However, we can see that unwarranted and false child abuse investigations are used in order to coerce GET engagement. GET is the idea that increasing exercise by 10% every other week can cure you of ME/CFS, a condition that is characterised by Post Exertional Fatigue, that is, any exercise causes a massive increase in fatigue and other symptoms and/or an exacerbation or "crash". Despite the study behind GET being debunked, it remains in the NICE guidelines and the vast majority of those surveys had been prescribed GET. The NICE guidelines are now under review, however NICE have refused to remove GET from their recommendations in the mean time, stating that patients have the right to refuse. Pie chart "Have they/you been prescribed Graded Exercise Therapy?" 149 responses 38.3% No 61.7% Yes Of those that were offered GET, 59% refused and of those 22% were referred to children's services for either Fabricated and Induced Illness, Neglect or Emotional Abuse for refusing GET for, or on behalf of their child. Just a reminder that this is a therapy that is debunked and has shown in further studies by the ME Association to actually harm people with ME. Many felt that their refusal to do GET and CBT affected their care, despite it being stipulated in the NICE guidelines that this should not happen Pie chart "If GET and/or CBT was refused, do you feel this refusal affected your care?" 89 responses 47.2% NO 52.8% YES The affects of GET on the ME population was first raised in Parliament on 21st June 2018 and it was actually said that anyone prescribed GET after that date may be able to sue the NHS due to the knowledge in the public arena that GET harms patients and yet GET continues to be prescribed. Pie chart "If you/they were prescribed Graded Exercise Therapy, was it prescribed after 21st June 2018?" 115 respondents No 77.4% Yes 22.6% Extremely worryingly, a very high amount of young people have been told by a NHS health care professional that they "Don't believe in ME" Pie chart "Have you ever been told by an NHS medical professionals that they "Don't believe in ME"? 150 responses 58% No 42% Yes Children and young people with ME are going to struggle to access any services when they are openly told by professionals that a condition recognised by NICE and WHO isn't real. This shows a massive amount of unprofessional conduct where NHS workers think that they are right to voice their personal prejudice towards a sick and vulnerable child or young person. Another common phrase heard in ME circles is "Everyone gets tired", I don't know of a single phrase that is so hurtful and dismissive when uttered to a child struggling with a condition that has been shown to have a worse quality of life than those with cancer. “ME/CFS is as disabling and has a greater impact on functional status and well-being than other chronic diseases such as cancer. The emotional burden of ME/CFS is felt by lay carers as well as by people with ME/CFS.” Nacul et al (2011a) The scary thing is that many NHS professionals seem to think that this is a phrase which it is totally reasonable to say to a child with ME Pie chart "Have you every been told by a NHS professional that "Everyone gets tired"? 150 respondents 63.3% Yes 36.6% No Ironic, that the parents of these sick children are being referred to Children's Services for abuse, neglect and emotional abuse, when such blatantly abusive phrases are coming from the professionals that they go to for help. Most Children's services do not recognise ME/CFS as a disability and very few children are referred for support. Most who are referred are for false allegations of fabricated or induced illness, neglect/abuse due to the child having ME (which we have shown are due to refusing GET) and low school attendance. Pie chart "Have you been referred to children's services ?" 147 responses 75.5% No, 13.6% Yes for school attendance, 4.1% yes to the disability service, 4.1% yes for fii, 2.7% yes for abuse/neglect related to having ME Out of those surveyed, 27% were offered no medication to help deal with the horrific symptoms of ME/CFS Bar chart "Have you/they been offered medication for symptoms?" 50 responses 45.3% Melatonin for sleep, 31.3% pain relief, 20.7% anti sickness 30.7% other medication, 27.3% No medication offered The NICE guidelines specify that ME/CFS diagnosis should be made only when after other possible diagnoses have been excluded and symptoms have persisted for more than 3 months (4 months in adults). The vast majority, 92% had blood tests before being diagnosed, but only 24% had ct head and 5% had sleep clinic. Of the respondents, 63% were diagnosed after blood tests only. Once a diagnosis of ME is made, despite the professional attitudes that they either "don't believe" in ME or seem to think its *just* feeling a bit tired, many young people find other symptoms and conditions are dismissed as relating to ME. Indeed a low but significant percentage reported injuries being dismissed as ME/CFS. Bar Chart "Have any other illness/injury and or symptom that isn't ME been dismissed as related to ME?" 146 responses 26.7% Yes another illness, 20.5% Yes other symptom from something else, 3.4% Yes from injury, 57.5% No In fact, securing any medical care for any condition when you have a diagnosis of ME/CFS becomes increasingly difficult, with young people with ME/CFS reporting they are refused referrals for other conditions. Bar chart " Gave you been refused referral for other health needs due to it being dismissed as ME?" 142 respondents 2.8% yes refused mental health referral, 15.5% yes refused referral to specialist for something else, 66.2% No, 21.1% Yes refused referral for POTS, 8.5% yes refused referral for EDS This is the paradox of NHS treatment for ME, where ME/CFS is dismissed as "in your head" "not real" "Many Excuses" "everyone gets tired" while at the same time responsible for any and all conditions or symptoms that patient may present with, including, rather ridiculously, any injury they may present with. The NHS and NICE has a very long way to go to win back the trust and respect of people with ME and their families. I will be sending this information to Steve Brine and my local MP and can only hope that they don't dismiss the plight of people with ME. Update: Steven Brine has quit due to other matters, but I'm still hopeful that we will receive a response from his replacement when they are appointed 2 tired and a toddler
I undertook a self selecting survey on accessing education for children and young people (upto 25) who suffer from ME. I received 137 responses, 130 of the young people had a diagnosis of CFS, ME/CFS or ME. The rest were waiting on diagnosis or had no formal diagnosis. Only 18% of those surveys young people had an Educational and HealthCare plan Pie Chart "Does your child/yp have an EHCP (educational and healthcare plan)? 137 responses Yes 18.2% No not applied for one 32.8% Refused EHCP 16.1% In process 18.2% Wasn't aware 14.6% This may be for several reasons, but among community members it is often stated that educational staff do not believe that an EHCP in appropriate in ME/CFS and is only for learning difficulties. This is of course false and and Educational HEALTHCARE plan would help to support any child whose addition medical, educational, social or emotional needs impact on their education. When we look at where (and why ) children and young people with ME are educated we can see that they are definitely in need of support and are being let down by the education system. Pie Chart "Where is your child/yp educated?" Mainstream school 29.2% Non mainstream 3.6% Private school 3.6% Home educated 12.4% No education 8.8% college university 20.4% Home tuition/online education funded by school/LA 22.6% Of those that were home educated, most felt that they were given no other option. Pie Chart "If you home educate, why do you do so?" Electively home educated before ME 7.1% Home educated due to ME by choice 17.9% Home educated due to ME because child was forced out of education ( off rolling) 25% Home educted due to ME to prevent prosecution for attendance 7.1% Home educated due to ME as felt there was no other option 42.9% For those childrens still registered at a school, missing 15 or more non consecutive days means that the schol must ensure that the childs education is not affected. In the case of chrnically ill children this usually takes the form of online or home tuition services. As we see from the above pie chart "Where is your child/yp educated?" This amounts to only 23% of respondents. Barriers to recieving this legal right to education otherwise may have heavily influenced the level of young people with ME bein home educated becaus ethey felt forced to, or were off rolled. Indeed, 24% of respondents were refused this education, despite it beinga legal right. Pie Chart "Aer you aware that schools/LAs are legally obliged to provide education otherwise if a child is ill for more than 15 days (non consecutive)?" 137 respondents Not aware 32.1% Yes aware but was refused tuition/online education 24.1% Yes aware, we have tuition/online education 27.7% Yes aware tuition/online education was provided but was unsuitable for child/yp 10.2% Electively home educated before ME/ N/A 5.8% It is not a reaching assumption to suggest that the reason for refusal of this legal right is due to the high cost in the current climate of austerity and cuts. HOwever 10% receiving online education/tuition that was unsuitable shows that even when funds are made available, the young person is not made central to the education provision. Most of those students who are still physically attending school for some part are on a reduced timetable, happily 38% are on a reduced timetable that suits the child. However that leaves the majority fighting for a suitable timetable and education that meets their needs. Pie Chart "If your child/yp attends school do they have a reduced timetable to suit their needs?" 84 respondents Reduced timetable in place that suits the child/yp 38.1% Reduced timetable in place, but pushed to increase attendance 20.2% Reduced timetable in place but child/yp unable to attend 19% Refused reduced timetable 8.3% Full time student 14.3% One of the school services that could be a great adoacte for yung people with ME is the school nursing service. I cannot think of anyone better placed, to ensure that the heath and educational needs of these vunerable young people are met. They are a liason between health, social care and education and should have knowledge of the condition which afflicts so many young people. They are responsible for all young people of school age, even those that are home educated. However the majority of those surveyed had never seen anyone from the school nursing service. Only an absolutely disgusting 7% felt supported by the school nurse. Pie Chart "Have you been supported by the school nursing service?" 137 respondents Yes 6.6% No 34.3% Never seen anyone from the school nursing services 59.1% In my last article "Young people with ME dismissed by NHS professionals" it revelaed that 25% of families had been referred to childrens services 13.6% Yes for school attendance, 4.1% yes to the disability service, 4.1% yes for fii, 2.7% yes for abuse/neglect related to having ME It would seem that you are unlikely to have input from the school nursing service unless you are referred to childrens services and that you are very unlikley to find that input helpful in any way. Indeed anecdotally, school nursing seems to be used as another arm of childrens services to falsely accuse and bully families of sick children. One way in which school services can support a family is by recognising that a chronically ill child isnt in any way "truant" and preventing extra stress by not subjecting the family to threast and prosecution due to attendance. THis is in the best interest of the child and family ad should be the norm, however 62% of respondents felt that they received this. My heart absolutely breaks for the two families that answered the survey saying they have been fined/prosecuted for low attendance due to their child having ME. Pie Chart "Have you been supported with atendance issues?" 137 respondents Threatened with socials sevirces due to low attendance 5.8% Referred to social services due to low attnadance 6.6% Threatened with prosecution due to low attendance 13.1% Fine/prosecuted due to low attendance 1.5% School acknowledged ill health 62% Electively home educated before ME 5.8% Attendance has become very important to schhols as it is heavily reflected in OFSTED reports and linked in some ways to funding. This has led to many schools offering rewards for children who attain 100% attendance and punishments for those whose attendance is low. I could rant for a long time on how harmful and ableist this whole system is, but that is another article in itself. The facts here are that 40% of those surveyed had been excluded from trips and events due to low attendance because they have ME. Pie Chart "Has your child/yp ever been excluded from events/trips/ect due to attendance?" 125 responses Yes 40% No 60% If you ask people with ME what the hardest things are about the disease they will usually at some point talk about being disbelieved or dismissed. Due to the fact that ME is an "invisible illness" many people feel the need to dismiss it as not existing, in the persons head, an excuse ect. I was not expecting the numbers on this to be great, having just written up how many NHS healthcare professionals dismiss young people with ME, however I am still sad to see 68% of those surveyed say educational staff have dismissed their condition. Children and young people can never feel valued and heard by the educational community if they are dismissed so easily and so frequently. Much education is needed to ensure that those entruted with young minds, do not traumatise them. Some young people with ME show a improvement in symptoms after a few years (between 1-5 years ) and are able to go on to college and university. Many of them still suffer from ME to some extend, so I asked how well they were being supported to access further education. Only 28% reported that they were being supported by college/university disability services and 1 respondent reported being refused access to such services. Pie Chart "If your child is in college or university have they been supported by the disability services at the educational establishment?" 47 respondents Yes supported 27.7% Accessed, but little suppport 23.4% Refused access to disability service 2.1% (1 person) Wasnt aware of disability services 42.6% chosen not to acces disability services 4.2% Clearly, this survey shows that young people with ME are being dismissed and failed by the educaton system, there seems very little support is given and services are only used to push false allegations of child abuse rather than to support. Much work is needed to win the respect and trust of these young people and to ensure that they get the education that they have a right to, in a way that doesn't harm their health. 2tired and a toddler
|
AuthorSpoonie, carer of severely ill child with ME and bouncychild with ASD. Advocate, cat lover, fundraiser, recycler ArchivesCategories |