From the Harlow Star, 4 April 2013 (story by Chris Moss).
THE parents of a Harlow schoolboy suffering from chronic fatigue syndrome claim their son is being “denied an education” because of his illness.
Ten-year-old Luke Hannibal’s condition means he is often too tired to attend Potter Street Primary School – but local education authority Essex County Council have so far refused to provide him with home tuition support.
Parents Jacky and John Hannibal, of Potters Field, say they are “disgusted” by the authority’s stance, and are now worried their son has fallen so far behind with his work that he will never catch up with the rest of his class.
“Neither the school nor the county council seem to believe that Luke is genuinely ill, even though they’ve been provided with letters from his doctors,” mum Jacky told the Star.
“Their attitude is that Luke is just being lazy – and that we’re letting him get away with it.
“But the reality is that he has a very serious illness, and desperately needs home schooling.”
Luke’s problems began back in January 2011 when he was struck down with severe gastro-oesophagal reflux disease.
Following treatment, his parents noticed that he was becoming increasingly lethargic, and some days struggled to get out of bed at all.
Unable to establish the root cause of his tiredness, the family’s GP referred Luke to a consultant paediatrician, who identified a number of minor immune deficiencies and wrote to the school to inform staff Luke would be forced to take time off.
Further tests suggested Luke could be suffering from chronic fatigue syndrome – sometimes referred to as ME – which causes persistent exhaustion that is not alleviated by sleep or rest.
He began treatment for the condition in September last year, and gradually reached the point where he was able to attend school for one-and-a-half days per week.
But he has since struggled to improve further – and now mum Jacky fears the school will exclude him because of his poor attendance record.
“One of the problems with this illness is that when he has a good day he can seem quite alert and active, but the very next day he might not be able to get out of bed,” Jshe explained.
“The school won’t accept this because they don’t understand his condition.
“We think the school now wants to exclude him beacause of the amount of time he’s had off, but there’s no way I’m going to put my child’s health at risk by sending him in when he’s so ill.
She added: “We’ve pleaded for help with home tuition, but neither the school nor the county council seem to want to help us.
“He is effectively being denied an education – and we don’t know what to do”
A spokesman for ECC declined to comment on Luke’s individual case, but suggested he would be given help if the school was provided with more “medical evidence”.
“Referrals to the Children’s Support Service must be supported by medical evidence which demonstrates that the pupil is medically unable to attend school,” he added.
“In cases such as these we work with the school to support them in ensuring that the pupil concerned is able to access education.”
A study conducted in 2011 found that CFS could be ten times more common than previously thought and was a major cause of school absence across the UK.
As many as one in 100 children are believed to suffer from the condition, which currently has no cure.
This is exactly the situation that myself and my son have had to deal with. I have M.E. for 4 and a half years and my son for 3 and a half years approximately. From the onset of his illness and his diagnosis he was not catered to as regards his inability to attend school. It was ‘bums on seats’ and constant criticism of his inability to perform or to attend. Even when his symptoms seemed to be improving after a great deal of rest, he was bullied into attending school by the SEN’s and the LEA. His paediatrican was of the same mind and eventually he tried to attend and had …………a relapse. A serious one at that. Neither his paediatrician or the education authorities took this seriously and basically left us to our own devices for a while. He was discharged by the paediatrician and for 2 years no homework or education was received by my son ( who is also called Luke)
As of September 2012, my son started to attend a special school called firstly LEMS (then it changed to East Lancs ACERS). He tried to attend one afternoon a week and didn’t always manage it. This special school mixes children with behavioural problems and medical problems. I am not impressed with this as, in my view, the children with medical problems are not adequately cater to.
I have emailed the Dept of Education in London and it has been confirmed that the education has to fit the child’s needs and not the child fit into the education where there is illness involved.Section 19 of the Education Act emphasises this.
A descriptive letter indicating the child’s difficulties from a consultant is needed urgently when M.E. has been diagnosed in a child so the school and LEA cannot make excuses as to providing adequate education. I have found this out the hard way. The first letter we had from a consultant was ignored by the mainstream school and ‘lost’. So that is the first important step. Next, a person to liaise with needs to be arranged. We had nothing but confusion. My son was deemed as being ‘constantly absent’ according to his CAF report. They still haven’t bothered to change the labelling despite my requests.
Until the diagnosis is met head on as M.E or Chronic Fatigue Syndrome those in in authority will pussyfoot around until it is too late to give adequate education.
I changed paediatrician and had to travel to Bury to get any joy. At last, the questions and criticism has stopped but my son who is now finishing Year 11 soon and only able to do 2 afternoons per week at the ACERS school has had very little education and is totally ambivalent towards the those who have failed him.
It is extremely stressful to have to deal with people who just seem to deny what it is obvious. The child needs education and if he cannot go to the education the education must come to him.
Do have a look at the new Statuatory Guidance for Local Authorities for Education of Children wiith Health Needs (January 2013). It is an improvement on the previous document, for example, parents and the child/young person views must be taken account, no blanket policies, a GP is medical evidence enough from 15 days, & onwards, until/if a Consultant is seen often months later often, virtual education can play a part, or the whole provision for a time.
This has to, as the law says and the previous document did, “…a suitable education must be provided according to the child/young person’s medical /health needs”.
Jane Colby (Tymes Trust) had input to this, and has since put together a summary of advice (see T.T. website April 2013 email alert & below) to go with a recorded presentation on these education guidelines. It is clearest & most supportive of what’s needed for youngsters with ME I’ve seen, and I will be posting it to many education professionals.
Although my youngster is nearly beyond the age of it’s remit, it should help the general understanding of ME by education staff, if it gets wide publicity for others.
http://www.nisai.com/Articles/350386/Nisai/Jane Colby on.aspx
http://www.education.gov.uk/g00219676/special-health-needs-education
JANE COLBY’S RECORDED PRESENTATION
For schools, parents, Local Authorities
======
Just 25 minutes long, this talk with 10 slides shows how the Department
for Education’s new statutory guideline helps children with ME.
http://www.nisai.com/Articles/350386/Nisai/News/Jane_Colby_on.aspx
ME can be so severe and chronic that the education system has great
difficulty in coping with it. As a Head Teacher I learned that the best
thing to do, is just to do what works. And that will be different in
different cases – but it must comply with this new government guideline,
and that’s what my talk explains. It is significantly different from its
predecessor (the ‘Access to Education’ guideline).
I start with a look at the title: ‘Ensuring a good education for children
who cannot attend school because of health needs’. The Department states
that this ‘applies equally, whether a child cannot attend school at all
or can only attend intermittently.’
It applies to children in all types of school, free schools, academies,
state schools, private schools, and those who are not on the roll of a
school. It’s the Local Authority’s responsibility to ensure that these
children get a ‘good’ education.
The whole guideline is based on the question of what’s best for each
individual child. In my emails and phone calls with the Department, they
have said to me that they really do want the child to know that: ‘It is
not their fault’. They are ill. It is so easy for a child to feel a
failure when actually it’s the system that is failing them.
Remember, a keynote of the guidance is that there must be *no blanket
policies* for any particular health condition, nothing inflexible, no
lists of what will and won’t be done for any specific condition. That’s
one of the ‘should nots’.
I have taken care to examine the growing controversy of hospitals
‘prescribing’ graded attendance programmes which schools and tutors often
feel they must follow, despite families telling us they have become a
focus for conflict between them and the school. Such programmes that I
have so far come across have run contrary to several aspects of this new
statutory education guideline. In this talk, I explain why. It is
important that in liaising with medical professionals, education
professionals do not abdicate their own role.
Disability and equality legislation is also relevant. ME involves
disability within the brain, something I discuss in my talk, and we must
not be guilty of discrimination. It takes time and energy to heal,
together with sufficient recuperation, and because there is no cure, the
National Institute for Clinical Excellence makes it clear that no
treatment of any sort need be accepted. I understand that some schools
have erroneously believed that the family must accept a hospital’s
management programme for their child, which is clearly contrary to NICE.
To go back to the key point of this guideline; everything must be done to
address the child’s individual needs, rather than impose some blanket
policy or programme. But there are many practical ways of doing this, and
really much of it is down to common sense and building trust and good
relationships. And, of course, modern technology and virtual education
are becoming very successful and an excellent alternative or adjunct to
other forms of education. In that connection, I must thank the Nisai
Virtual Academy for enabling me to make this presentation and for hosting
the webinar on which it is based.
Without going into lots of medical detail, I do touch on the problem of
the different terminology (ME and CFS) so that any school listening to
the talk understands that they need to play safe, because of the
potential for relapse in cases of ME, under whatever name.
So now it only remains for you to click on the link! There should be
something there to help everyone and this is a tool you can send around
to others. The link to the guideline itself is also there, if you wish to
read it after listening.
All our best wishes
Jane
Jane Colby FRSA
Executive Director
The Young ME Sufferers Trust
PO Box 4347, Stock, Essex, CM4 9TE
http://www.tymestrust.org
Tel: 0845 003 9002
Holder of The Queen’s Award for Voluntary Service:
The MBE for Volunteer Groups