Presentation by Joanna Smith, APPG on ME meeting, 2 July 2008

Following the APPG on ME meeting, 2 July, Dr Charles Shepherd published a summary of the meeting on behalf of the ME Association.  His summary can be read here and please note that his notes are not the official Minutes for this meeting:

In a presentation focussing on Child Protection issues which was given during the course of the meeting by Jane Colby, The Young ME Sufferers Trust with Mary Jane Willows, AYME, four family cases were highlighted.  In his summary, Dr Shepherd reports that “A more detailed summary of these presentations can be found on the Tymes Trust website ( and in the next AYME magazine.”

Joanna Smith, whose own family’s experiences were highlighted as part of the presentation on Child Protection issues has kindly given permission to publish the text of her own presentation here, on ME agenda.


Presentation by Joanna Smith

All Party Parliamentary Group on ME, 2 July 2008

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 6 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 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.



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