RESEARCH

Brain invaders
Gregory Burford was suffering hallucinations because of a
Liberal Democrat MP Wendy
Chamberlain: “With children
up and down the country still
suffering – and still being
refused appropriate treatment

little-known brain-inflammation condition called PANS, – there is still so much more

for our leaders to do”

which can be mistaken for autism, before doctors cured

him. Now, health minister Maria Caulfield has said the not real, though they did make him
“second guess” himself and his
UK Government could fund research into PANS and “moral compass”. Despite his
troubled mind, he was able to
the similar disorder of PANDAS after acknowledging reason with himself and ignore
Nico’s violent promptings.
that the conditions exist. Darren Devine reports Sleep deprivation and pain
As well as the hallucinations, he
struggled with sleep deprivation
and pain. He dropped out of
school for a year and, at one
stage, medics discussed whether
he should be sectioned. He
believes he may have ended up
killing himself if he had remained
trapped in a cycle of sleeplessness
and terrifying hallucinations.
“If I had been sectioned it would
have been the rest of my life
dealing with this condition and I’m

G
regory Burford is now a “Incredibly “perpetually” by a hallucination, syndrome). Thankfully, he autoimmune neuropsychiatric Wrongly not sure that in that state, being
20-year-old student thankful”: whereby he would see another recovered from the hallucinations disorders associated with diagnosed? that much in pain, sleep deprived,
studying music at Gregory version of himself he named Nico. after treatment with antibiotics. His streptococcal infections) are Those with consistently distressed – I’m not
Cambridge University, but his life Burford, who It was this figment of his disturbed autism symptoms also diminished. conditions triggered by infections PANS or sure that I would have seen that as
came within a hair’s breadth of recovered from mind that followed him “every PANS and PANDAS (paediatric that cause brain inflammation. PANDAS are being any better than death,” he
taking a very different course. PANS after waking moment” and would tell PANDAS is a subset of PANS, frequently given says. He says he feels “incredibly
In 2016, he was diagnosed with treatment with him to attack his family. where an infection of the skin, a mistaken thankful” for his recovery.
autism after falling ill with a nose antibiotics He says of that time: “If I was throat, blood, muscle or fat triggers diagnosis of Charity PANS PANDAS UK has
and ear infection while on holiday. eating with my family, using a knife the misdirected immune response. autism – but the said growing numbers of parents
He regressed heavily into autism and fork – I’m just eating – he’d The two conditions are little known situation may are discovering links to illnesses
and was also diagnosed with Lyme sort of be there and be telling me and are often misunderstood, improve with when they reflect on the history of
disease. During his darkest days, to stab my mum with a knife that I He’d sort of be leading to the frequent misdiagnosis government- their child’s autism. The children
he struggled with hallucinations was eating with. It was quite there and be telling of autism. But now, alongside funded can then be re-diagnosed with
and voices that prodded him graphic. I could only really ignore recognising that the conditions research PANS or PANDAS.
to launch horrifically violent it a certain amount.” me to stab my mum exist, health minister Maria Caulfield Caulfield told the House of
attacks on his own family. Two years later doctors with a knife” has indicated the UK Government is Commons in September that “we
Gregory, from diagnosed Gregory with open to funding research. have the evidence to sufficiently
Leamington Spa, says PANS (paediatric acute- Gregory says he always demonstrate that PANS and
he was haunted onset neuropsychiatric understood his hallucinations were PANDAS are discrete disease

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 RESEARCH

Specialist education and care

PANS and PANDAS.

She thinks it should run
alongside a public
awareness campaign
Coming soon!
that includes writing to
GPs about diagnosis Edgewood School is a new,
and treatment. state of the art independent specialist day
Caulfield says the
Department of Health and and residential school for children and
Social Care works on rare young people aged 7 to 18.
diseases through the
Pupils placed at the school will have a range
Health Minister Maria National Institute for Health
of complexity and need, including;
Caulfield: “We have the and Care Research
Autism, moderate to severe learning difficulties,
evidence to sufficiently (NIHCR). The NIHCR
speech, language and communication difficulties,
demonstrate that spends more than £1
and associated challenging behaviour.
PANS and PANDAS are billion every year on
discrete disease entities” research, particularly into CONTACT:
rarer conditions. She is Lingswood Park, Northampton, NN3 8TA
encouraging anyone with Email: edgewood.info@senadgroup.com
entities”. But she added an interest in raising Tel: 01332 378 840 Website: enadgroup.com/edgewood
that “we do not have the awareness of PANS and
evidence and research PANDAS to apply for
base on assessment, research funding.
diagnosis, treatment
and management”. Research awards
Gregory’s mother Vicky, The NIHCR could provide
who chairs PANS PANDAS the funding and guidance
UK, believes the and the minister has
Government’s recognition promised to organise an
of the conditions and “introductory meeting”.
willingness to consider Applications are subject to
funding research is “huge”. peer review and judged in
She says her charity is now open competition, with
working with the medical awards made based on
royal colleges on PANS the importance of the
Surround and PANDAS, so services
for “thousands of children”
topics to patients, health
and care services.

yourself with going without the help they

need are improved.
The dearth of research
on the conditions means

amazing people Wendy Chamberlain,

who serves on the all-party
there are no figures
detailing their prevalence
parliamentary group on in the UK, but in the US
PANS PANDAS, says scientists have suggested
Caulfield’s announcement up to one in 200 children
is an important step may be affected.
forward. But the Liberal NHS England is working OUR OTHER SCHOOLS:
Democrat MP for North on a nationwide Alderwasley Hall School & Sixth Form, Derbyshire
East Fife adds that “with surveillance study Aran Hall School, Dolgellau
children up and down the designed to identify the Bladon House School, Staffordshire
country still suffering – and signs and symptoms of Maple View School, Derby
still being refused PANS and PANDAS so Pegasus School, Derbyshire
appropriate treatment – they can be tested against Rowden House School, Herefordshire
there is still so much more diagnostic criteria. Doctors
for our leaders to do.” currently diagnose PANS FIND OUT ABOUT OUR
Discover new meaning Chamberlain wants the and PANDAS through SPECIALIST SCHOOLS
National Institute for Health observation after taking a
Join our team and Care Excellence detailed history. They first
AT SENADGROUP.COM
(NICE) and Healthcare rule out other conditions,
OR CALL US ON
Improvement Scotland to such as brain tumours, as 01332 378840
produce guidance on the cause.
kisimul.co.uk/careers We’re social.
LINK:
lP
 ANS PANDAS UK: https://www.panspandasuk.org/

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