Our Daughter is
pictured here having just been assessed for her “Fitness for Work” by the Department
for Work and Pensions (DWP), something they continually insist on. In 2015 we
were sanctioned by them and payments to our daughter stopped for months for refusing
to attend a follow-up interview only two weeks after this first one.
Fit for Work?
The facts of her
Condition
She was born with
and suffers from an irreversible, very rare neurological condition called
Ohtahara Syndrome with multiple associated complexities. She cannot talk, walk,
move independently or communicate. She is feed all her nutrients and medication
by pump via a tube to her stomach and is totally dependent and incapable; she
needs care 24 hours every single day. She is now 29 years old and enjoys seeing
her family and spending time at a specialist day college. We face losing her on
average 3 to 4 times every year due to infections and illnesses which she is
very susceptible to catching due to her condition.
What we are
suffering now at the hands of the Authorities is truly shocking and totally
unjust.
She is isolated at
home when she is ill as we have an intensive care regime to ensure she survives
the infections she so often suffers. This can be over many weeks and is not
only exhausting but can be quite harrowing as we have on many occasions had to
resuscitate her ourselves. Even in the most critical moments when the emergency
services have had to attend, she has not been admitted to hospital as there is
no guarantee she will receive the specialised care she needs and would be more
likely to survive from our care at home. As our daughter is so susceptible to
infection, hospitals are a very dangerous place for her.
When sanctioned by
the DWP in 2015, we involved the BBC to assist us, since all our appeals to the
authorities were ignored and we had exhausted all other options. Even a letter
sent directly to the then Prime Minister - Mr David Cameron (whose son suffered
the very same condition) was responded to, by his office, with contempt, delay and
deflection and a complete refusal to intervene. With the threat of a press
release the DWP repaid the withheld funds but had lied to the BBC about our
circumstances to prevent publication. We were not made aware of this and were
more than unhappy with how we were treated by the DWP which caused us
considerable upset and distress.
The DWP have since
seriously under assessed our daughters’ condition and her needs. They have made
false representations in her Personal Independent Payment (PIP) assessment
without seeing her and ignoring all the clinical evidence and reports from many
medical specialists and professional consultants.
It is the pure
fact that we have dedicated our lives to her at our home, that our daughter
remains happy and alive. Our local Authority, the Learning Disability
Partnership (LDP) and local NHS Care Commissioning Group (C.C.G) deny the
severity of her condition or true needs and have been of no support whatsoever.
They have, in fact, made false reports of her condition to seriously undermine
them, omitted vital information about her needs and intentionally “missed off”
crucial medical information from their records of her. They have also falsified
assessments, made false statements in her official documents, taken funds from
her unlawfully, have put her life at risk and ignored the clinical and medical
evidence presented. They have threatened her directly with
prosecution to try and force us to pay for services for which she is and always
has been fully entitled to be funded for. Data protection regulations have been
contemptuously disregarded by them but they have held us to these laws and
processes, another serious injustice.
The C.C.G even
made an attempt to alter her diagnosed condition to undermine what she truly
suffers from. The local Authority, L.D.P and now the C.C.G have cause us so
much suffering over a very considerable amount of time which is totally
unjustified and unlawful. They continue to make false reports about our
situation and have misrepresented us throughout; their dishonesty is shameful
and is no doubt affecting many others.
Due to the actions
and negligence of some members our local NHS C.C.G our precious little girl
nearly died, recently this year (2019), after suffering a massive seizure that
took her several weeks to settle from and is still not fully recovered, she may
not. The local C.C.G have made false statements in official reports regarding
these events and have not only made no apology but have gone to very great
lengths to cover up this incident. We are suffering from a very serious fraud
perpetrated by members of our local authorities which obviously; as our
evidence clearly shows; extends to a very senior level. There is no question
that there is corruption within parts of our local authorities, the very fact
that at a senior level the irrefutable evidence presented has been not only
rejected out of hand but they have added their weight to the denial of
responsibility. They have even sent letters which contain false statements to
our MP who has himself been of very little help in supporting us in such a
serious situation and has caused considerable delay by letting us believe he
would be doing all he that could to help and giving us much false hope.
There is no doubt
of the seriousness of our situation which has uncovered misconduct by some in
public office locally and a level of corruption within our local authorities that
is quite alarming, no doubt putting other lives at risk too and costing a great
deal of money leading to a serious misuse of public funds. They must be
investigated.
What we have
endured to maintain the health, wellbeing and life of our daughter over the
last nearly 30 years has been extremely hard and placed an unimaginable responsibility
and strain on us as parents but is something we have done unconditionally and
with an absolute commitment to her for all that time. We have had great
pleasure and reward in ensuring, by our actions, that she has the happiest,
healthiest and most contented life we can give her. She is so special and so
loved by all who know her and we give thanks she was born to us to care for.
What we have
suffered at the hands of our local Authority, L.D.P and local NHS Care Commissioning
Group is also unimaginable and has been by far the most arduous, most stressful
and most physically and mentally demanding aspect of our daughters entire existence.
The seriousness of all that has been deliberately done to us, covered up and falsely
reported on must be investigated. We would happily share our evidence with anyone
who is serious in helping to bring these people to justice.
We have prepared
other documents which can be presented containing the details of our circumstances,
all that we have suffered from each authority and an extensive set of evidence
documents making very clear what offenses have been committed against us including
those involved, which again is available to those genuinely prepared to help in
seeking justice not only for us but all those dependant on the honesty, truth
and support they should receive from those we have found to be dishonest and
corrupt.
All of our pleas
for help have so far been ignored and our desperate appeals to the Department
of Health and Social Care, including directly to the Rt Hon Matt Hancock MP,
have been met with contempt and rejection. They are not prepared to intervene,
even though the evidence presented is so clear. It is ultimately their
responsibility.
The Department of
Health and Social care along with the Rt Hon Matt Hancock MP have been sent
Part 2 (Evidence Pack) directly but have ignored its content and the severity
of our situation. They have instead attempted to add further delay in resolving
a situation that has placed our daughters’ life at risk which is being
maintained by the false reporting of members of our local authorities and
causing us a great deal of suffering.
Mr Hancock has
publicly stated that he wishes to “Put things right”, however he has so far
made no attempt in our case, even with such clear evidence being presented. By
the inaction of his department, allowing this dishonesty to go unchallenged, is
now allowing others to suffer at the hands of these public officials.
The constant
promise to increase funds to the NHS and inject cash into Social Care will not
solve many problems and will only allow these unscrupulous authority officials
divert increased amounts of funds from the needy and vital services by their
dishonest actions and failure to properly manage their budgets.
If a boat is
taking on water you would not build onto it as it sunk, you would repair the
leaks to save it. If we don’t block these leaks the NHS will sink regardless of
the input of funds.
There is no doubt
that current Government policy; allowing local Authorities and NHS C.C.Gs to
write their own procedures regarding the requirements for assessing the needs
of the most vulnerable and incapable in our society, in-line with the
regulations governing such requirements; is being abused. Its misuse by some
holding public office is allowing those who are unscrupulous and dishonest
within these Authorities to operate outside the regulations and without being
challenged. The evidence is clear.
Why are
Authorities permitted to write their own procedures, which in our case have
proven to be not fit for purpose or have been completely misused, when the
current laws (The National Framework Regulations, the Care Act 2014 and in some
cases the Mental Health Act) are the best tools and perfectly designed to be
fair. The outcomes of assessments when applying these regulations are as truly
defined and as accurate as possible and more importantly, the truest reflection
of need. These Rules, Regulations and Laws are not always adhered to by local
Authorities and C.C.Gs, in our case quite deliberately, and as a result, their
reports not a true reflection of those they are duty bound to support and protect.
There should be, at the very least, a government body in place to inspect local
Authority and C.C.G procedures, which relate to the undertaking of the
assessments of the most vulnerable and most at risk within our society, to
ensure they are in-line with the requirements of law.
