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Barriers to accessing education for young people with ME/CFS

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%

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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%

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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 educated due to ME to prevent prosecution for attendance 7.1% Home educated due to ME as felt there was no other option 42.9%

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For those children still registered at a school, missing 15 or more non consecutive days means that the school must ensure that the childs education is not affected. In the case of chronically 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 receiving this legal right to education otherwise may have heavily influenced the level of young people with ME being home educated because they felt forced to, or were off rolled. Indeed, 24% of respondents were refused this education, despite it being a legal right. Pie Chart "Are 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%

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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.

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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%

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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%

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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.

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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 support 23.4%  Refused access to disability service 2.1% (1 person) Wasn't aware of disability services 42.6% ​chosen not to access disability services 4.2%

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Clearly, this survey shows that young people with ME are being dismissed and failed by the education 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. 


Original published 15th March 2019