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
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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
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AuthorSpoonie, carer of severely ill child with ME and bouncychild with ASD. Advocate, cat lover, fundraiser, recycler ArchivesCategories |