Campaigners and MPs met in parliament last week to discuss the need to ensure a treatment pathway is developed which will enable all children impacted by this condition to access treatment for PANS and PANDAS. Accessing the most appropriate form of treatment is an important step towards reducing the impact their symptoms have on their quality of life.

Toby Perkins, who attended the event, said “This is an important issue and after speaking to a local family whose child completely changed having contracted PANS, I am committed to raising awareness amongst parents and medical practitioners.

The lack of knowledge and awareness of such devastating conditions which affect thousands of children in the UK shocks me. It is vital that the Government’s long-term plan for the NHS includes a treatment pathway for children with this condition.”

PANS and PANDAS are conditions which commonly present with both physical and psychiatric symptoms. They can be caused by common infections such as Strep or Covid 19, and those affected suffer from a sudden onset of Obsessive Compulsive Disorder (OCD) and/or tics and/or eating restrictions. Many of those impacted by these conditions are often misdiagnosed and given incorrect medication which can increase their suffering and potentially cause long term damage.

According to PANS PANDAS UK’s 2020 Parents Survey, 35% say that their child has missed more than 6 months of school due to their symptoms. This statistic emphasises the need for more awareness amongst healthcare professionals to ensure all children presenting with symptoms gain access to effectively treatment on the NHS and do not continue to miss out on time which should be spent learning and developing skills for their futures.

​​​​​​​Toby added, “Despite the fantastic work of organisations such as PANS PANDAS UK and those who are personally affected advocating for change, further action is needed to enable all sufferers to access a diagnosis and appropriate healthcare on the NHS. One of the first steps is raising awareness of this condition, which I will continue to do in Parliament.”