PANS PANDAS UK

Joining up with Neurological Alliance

Joining up with Neurological Alliance

As part of Neurological Alliance, PANS PANDAS UK, are pleased to join other leading charities in writing to Jeremy Hunt, Chancellor of the Exchequer, about the cost of living crisis and the potential impact on those living with neurological conditions.

Neurological Alliance members have all expressed grave concern about how the increase in energy bills and cost of living can affect their members.

The letter to the Chancellor proposes three actions that will make a difference:

  1. Uprate benefits in-line with inflation
  2. Increase the levels of Disability Cost of Living Payments
  3. Extend the Warm Homes Discount to disabled people

Georgina Carr of the Neurological Alliance said,

“Not only is it a struggle to access the right support, but living with the effects of a neurological condition often comes with a hefty price tag. A safe and comfortable home, the right specialist care and the right aids and adaptations, are all vitally important to staying in work as long as possible, socialising and retaining independence. That is why support to manage these extra costs is so important, but right now, the Government has not committed to meeting those costs.”

For anyone who wants to get involved with The National Neurological Patient Experience Survey ‘My Neuro Survey’, please follow the link below. The survey is ran across the UK every 2 years by the Neurological Alliance, and closes on the 15th November.

To participate through the PANS PANDAS UK link go to https://revealingreality.welcomesyourfeedback.net/ze8jfg

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Glossary

  • ADHD
    Attention Deficit Hyperactivity Disorder
  • AE
    Auto-immune Encephalitis
  • ARFID
    Avoidant Restrictive Food Intake Disorder
  • ASD
    Autism Spectrum Disorder
  • CAMHS
    Child and Adolescent Mental Health Service
  • CBT
    Cognitive Behavioural Therapy
  • Dysgraphia
    difficulty writing by hand
  • EHCP
    Education, Health and Care Plan
  • Emotional Lability
    Rapid, and dramatic changes in mood (for example uncontrollable laughter to crying)
  • Enuresis
    wetting
  • GAS
    Group A Streptococcal infection
  • NHSE
    NHS England
  • NICE
    National Institute for Health and Care Excellence
  • OCD
    Obsessive Compulsive Disorder
  • PP
    PANS PANDAS
  • PPUK
    PANS PANDAS UK
  • PPN
    PANS Physicians Network
  • PPSG
    PANS PANDAS Steering Group
  • SENCo
    Special Educational Needs Coordinator
  • SIGN
    Scottish Intercollegiate Guidelines Network to the glossary
  • Tic
    Sudden repetitive movement (motor tic) or sound (vocal tic) which is difficult or impossible to control