TYMES TRUST ALERT
12th July 2008

Jane Colby
Executive Director
The Young ME Sufferers Trust
www.tymestrust.org

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TRUST PRESENTATION TO ALL PARTY PARLIAMENTARY GROUP ON ME:
CHILD PROTECTION ISSUES

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On 2nd July 2008, Jane Colby, Executive Director of The Young ME Sufferers
Trust, together with Joanna Smith, parent and Welfare Rights Advisor to
Brunel University, gave a presentation by invitation of the All Party
Parliamentary Group on ME concerning Child Protection Issues. They covered
Child Protection procedures and recommendations, misunderstandings over
parental or carer influence, and the personal experiences of a parent of a
Tymes Trust member.

You can read the full presentation at
www.tymestrust.org/pdfs/childprotectionissues.pdf

Jane first laid out the situation regarding Child Protection procedure and
gave the Trust's recommendations to help stop their misapplication to the
families of children with ME. She said: 'We cannot just discuss this problem
and wring our hands over these injustices. I have been fighting this problem
since the 1990s and I did the survey for the BBC Panorama programme which
revealed the statistics of the problem at that time. Now these cases seem to
be escalating again. The Trust is today making practical suggestions that we
believe would go some way to improving the situation.'

Jane explained that the Trust was continually dealing with these cases,
which were frequently reopened after they had previously been resolved
without action. She had reopened her discussions with Dr John Sentamu,
Archbishop of York, where cases had taken place. He had asked Jane to keep
him apprised of developments and report to him the outcome of the APPG
meeting.

> From the presentation:

INVESTIGATION PROCEDURE

If a family is suspected of child abuse, the following procedure is
initiated:

Within 24 hours: an initial decision is made about whether to pursue a child
protection Section 47 investigation.

Within 7 days: an initial assessment must be done which involves seeing the
family.

Within 30 days: a core assessment must be done.

Thus the process moves swiftly and parents are unprepared as to how to fight
it.

ACTION

The Trust takes the view that The Department of Children Schools and
Families should urgently alert Social Services professionals to the
frequency of misunderstandings in cases of ME.

The Trust also recommends that a leaflet clarifying the procedures that
should be adhered to by professionals in child protection investigations
should be given to families under suspicion, and they should be informed of
their rights.

ME - THE ILLNESS AND COMMON MISCONCEPTIONS: ABUSE, NEGLECT, MENTAL
INCAPACITY

Jane then read out to the meeting the section on misunderstandings over
parental or carer influence from the Trust's recent publication, 'ME - The
Illness and Common Misconceptions: Abuse, Neglect, Mental Incapacity',
available at
www.tymestrust.org/pdfs/metheillness.pdf

This concise document describes the disease of Myalgic Encephalomyelitis,
contrasts it with Chronic Fatigue Syndrome and explains why young people
with ME are commonly misunderstood as being abused or neglected by their
parents, or as lacking mental capacity to know their own minds and make
decisions affecting their lives. It was written by Jane at the request of
the Official Solicitor as a Judge's briefing.

Joanna Smith's presentation covered her personal experience of an erroneous
Child Protection investigation. She concluded:

'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.

'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.'

Joanna has now joined the Trust's Professionals Referral Panel as our
Welfare Rights Advisor.

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Jane Colby is Executive Director of The Young ME Sufferers Trust.
She was a Headteacher for nine years, a member of the government
Chief Medical Officer's Working Group on CFS/ME and co-authored
ME/CFS In UK Schools, the largest epidemiological study of ME to
date. She is a member of the National Association of Educational
Inspectors, Advisers and Consultants (now ASPECT), a life member
of the National Association of Head Teachers and a Fellow of the
Royal Society of Arts.

Copyright (c) 2008 The Young ME Sufferers Trust