The 12th of September was a landmark day for those living with PANS and PANDAS in the UK. A backbench debate in Parliament considered these terrible conditions before seeking a response from the Parliamentary Under-Secretary of State for Health and Social Care, Maria Caulfield MP.
MPs from across the political spectrum and throughout the UK recounted stories they had heard from their constituents. They highlighted problems of misunderstanding, misdiagnosis and the current barriers to appropriate, informed and timely healthcare for young people affected by Paediatric Acute-onset Neuropsychiatric Syndrome and Paediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections.
Aberconwy MP Robin Millar first learned about the conditions from a constituent and, determined to do all he could to help took on the role of Chairman of the All-Party Parliamentary Group on PANS and PANDAS. During the debate, Robin said:
“Like most of us here, I was first made aware of PANS PANDAS UK when a constituent contacted me to discuss their case. Separately and much later, a dear family friend contacted me to say that their daughter had also been affected.”
Continuing, Robin said:
“According to a recent survey by the charity PANS PANDAS UK, 95% of GPs do not know about these conditions, and 19% of affected parents said that their paediatrician was aware of these conditions but considered it too controversial to diagnose a child with any of them. As a result, many children with PANS and PANDAS receive multiple diagnoses, often of more widely recognised conditions with overlapping symptom profiles, including anxiety disorders, sensory processing disorders, ADHD and Tourette’s syndrome.
“That shows a clear lack of appropriate training for health professionals and means that the wide-ranging symptoms of these conditions are not being recognised as potentially linked to one of these conditions.”
He concluded by asking that:
“research into post-infectious disorders is given adequate funding and is accelerated across the UK.”
He also pressed “for the swift development of a UK-wide consensus on the treatment of children presenting with acute-onset neuropsychiatric symptoms. As I have already highlighted, without appropriate training and guidelines, UK clinicians are currently ill-equipped so, thirdly, we need to prioritise the development of clinical pathways to ensure that children and families do not continue to suffer as so many have suffered already.”
In the debate, Health Minister Maria Caulfield responded:
“We have the evidence to sufficiently demonstrate that PANS and PANDAS are discrete disease entities. The Department for Health and Social Care is funding research into rare diseases through the National Institute for Health and Care Research, which is spending over £1 billion a year every year on research particularly into rarer conditions. It welcomes funding applications for research into any aspect of human health, which would include PANS and PANDAS.”
Following the debate, Robin said:
“It was a big step forward to hear the Minister acknowledge PANS and PANDAS as conditions. There is a long way to go but this is a critical first step and a lot of parents and children will draw comfort from this. Awareness and understanding of these conditions is still very limited so it was heartening to see a true cross-party consensus for improving care for PANS and PANDAS.”
Vicky Burford, Chair of the charity PANS PANDAS UK, said:
“We join Robin in welcoming the strengthening of support in Parliament for all young people and families living with these devastating conditions. The Minister’s commitment to working with our charity, the All-Party Parliamentary Group and the PANS PANDAS Steering Group to raise awareness, expedite research and develop pathways for diagnosis and treatment is a valuable step forward. On behalf of the community we support, we would like to thank all the members of the PANS PANDAS All-Party Parliamentary group for their commitment to raising awareness and building brighter futures for all those affected by PANS and PANDAS."
Vicky added:
“Awareness and prompt diagnosis are crucial in ensuring the best health outcomes for children with PANS and PANDAS. Whether you are a parent, grandparent or a health, social care or education professional. You can find out more about the signs and symptoms of these acute-onset neuropsychiatric conditions at www.panspandasuk.org. Being well-informed could make all the difference to a child’s life”.
AS Aberconwy yn croesawu cryfhau’r gefnogaeth wleidyddol i gyflyrau meddygol PANS a PANDAS yn y Senedd
Roedd y 12fed o Fedi yn ddiwrnod hollbwysig i’r rheini sy’n byw gyda PANS a PANDAS yn y DU. Trafododd dadl y meinciau cefn y Senedd y cyflyrau brawychus hyn cyn gofyn am ymateb yr- Is-ysgrifennydd Gwladol Seneddol dros Iechyd a Gofal Cymdeithasol, Maria Caulfield AS.
Soniodd Aelodau Seneddol o bob rhan o’r sbectrwm gwleidyddol a ledled y DU am straeon roedden nhw wedi’u clywed wrth eu hetholwyr. Amlygwyd problemau o gamddealltwriaeth, cam-ddiagnosis a'r rhwystrau sy’n bodoli ar hyn o bryd am ofal iechyd priodol, gwybodus ac amserol i bobl ifanc sy’n cael eu heffeithio gan Syndrom Niwroseiciatreg Pediatrig Acíwt-Cynnar ac Anhwylderau Niwroseiciatreg Awto-imiwn Pediatrig sy'n Gysylltiedig â Heintiau Streptococol.
Clywodd AS Aberconwy Robin Millar am y cyflwr am y tro cyntaf wrth etholwr, ac, yn benderfynol o wneud popeth o fewn ei allu i helpu, fe wnaeth ymgymryd â rôl Cadeirydd y Grŵp Hollbleidiol Seneddol ar PANS a PANDAS. Yn ystod y ddadl, dywedodd Robin:
”Fel y rhan fwyaf ohonom ni yma, fe ddes i’n ymwybodol o PANS PANDAS UK am y tro cyntaf pan wnaeth etholwr gysylltu â fi i drafod eu hachos. Ar wahân, ac yn ddiweddarach o lawer, cysylltodd ffrind annwyl o’r teulu i ddweud bod eu merch hefyd wedi cael ei heffeithio.”
Gan barhau, dywedodd Robin:
“Yn ôl arolwg diweddar gan yr elusen PANS PANDAS UK, nid yw 95% o feddygon teulu yn gwybod am y cyflyrau hyn, a dywedodd 19% o'r rhieni yr effeithiwyd arnyn nhw fod eu pediatregydd yn ymwybodol o'r cyflyrau hyn ond eu bod yn ei ystyried yn rhy ddadleuol i roi diagnosis o unrhyw un ohonyn nhw i blentyn. O ganlyniad, mae nifer o blant sydd â PANS a PANDAS yn derbyn sawl diagnosis, yn aml o gyflyrau sy’n cael eu cydnabod yn ehangach gyda phroffiliau symptomau sy’n gorgyffwrdd â’i gilydd, gan gynnwys anhwylderau gorbryder, anhwylderau prosesu synhwyraidd, ADHD a syndrom Tourette.
“Mae hynny’n dangos diffyg amlwg o ran hyfforddiant priodol ar gyfer gweithwyr iechyd proffesiynol ac mae’n golygu nad yw symptomau eang y cyflyrau hyn yn cael eu cydnabod fel rhai a allai fod yn gysylltiedig ag un o’r cyflyrau hyn.”
Daeth i ben drwy ofyn:
“bod ymchwil i anhwylderau ôl-heintus yn cael cyllid digonol ac yn cael ei gyflymu ledled y DU.”
Galwodd hefyd “am ddatblygiad cyflym i gonsensws ledled y DU ar drin plant sydd â symptomau niwroseiciatreg acíwt-cynnar. Fel y dywedais eisoes, heb hyfforddiant a chanllawiau priodol, nid oes gan glinigwyr y DU yr adnoddau angenrheidiol ar hyn o bryd, felly, yn drydydd, mae angen i ni flaenoriaethu datblygiad llwybrau clinigol i sicrhau nad yw plant a theuluoedd yn parhau i ddioddef fel y mae cynifer wedi dioddef yn barod.”
Yn y ddadl, ymatebodd y Gweinidog Iechyd Maria Caulfield:
“Mae gennym y dystiolaeth i ddangos yn ddigonol bod PANS a PANDAS yn endidau clefyd arwahanol. Mae’r Adran Iechyd a Gwasanaethau Cymdeithasol yn ariannu ymchwil i’r clefydau prin hyn drwy’r Sefydliad Cenedlaethol ar gyfer Ymchwil Iechyd a Gofal, sy’n gwario dros £1 biliwn y flwyddyn bob blwyddyn ar ymchwil, yn enwedig i gyflyrau mwy prin. Mae’n croesawu ceisiadau am gyllid ar gyfer ymchwil i unrhyw agwedd ar iechyd dynol, a fyddai’n cynnwys PANS a PANDAS.”
Yn dilyn y ddadl, dywedodd Robin:
“Cam mawr ymlaen oedd clywed y Gweinidog yn cydnabod PANS a PANDAS fel cyflyrau. Mae llawer o ffordd i fynd ond mae hwn yn gam cyntaf hollbwysig a bydd nifer o rieni a phlant yn cael cysur o hyn. Mae ymwybyddiaeth a dealltwriaeth o’r cyflyrau hyn yn brin iawn o hyd felly roedd yn galonogol gweld consensws trawsbleidiol go iawn i wella gofal ar gyfer PANS a PANDAS.”
Dywedodd Vicky Burford, Cadeirydd yr elusen PANS PANDAS UK:
“Rydyn ni’n ymuno â Robin wrth groesawu cryfhau’r gefnogaeth yn y Senedd i’r holl bobl ifanc a theuluoedd sy’n byw gyda’r cyflyrau brawychus hyn. Mae ymrwymiad y Gweinidog i weithio gyda’n helusen, y Grŵp Hollbleidiol Seneddol a Grŵp Llywio PANS PANDAS i godi ymwybyddiaeth, cyflymu ymchwil a datblygu llwybrau ar gyfer diagnosis a thriniaeth, yn gam gwerthfawr ymlaen. Ar ran y gymuned rydyn ni’n ei chefnogi, hoffem ddiolch i holl aelodau’r Grŵp Hollbleidiol Seneddol ar PANS PANDAS am eu hymrwymiad i godi ymwybyddiaeth ac i greu dyfodol mwy disglair i bawb sy’n cael eu heffeithio gan PANS a PANDAS."
Ychwanegodd Vicky:
“Mae ymwybyddiaeth a diagnosis prydlon yn hanfodol i sicrhau'r canlyniadau iechyd gorau ar gyfer plant sydd â PANS a PANDAS. P'un a ydych yn rhiant, yn nain a thaid neu’n weithiwr iechyd, gofal cymdeithasol neu addysg proffesiynol, gallwch ddarganfod mwy am arwyddion a symptomau'r cyflyrau niwroseiciatreg acíwt-cynnar hyn yn www.panspandasuk.org. Gallai bod yn wybodus wneud byd o wahaniaeth i fywyd plentyn