Noswaith dda/Good Evening and thank you to the British Polio Fellowship for inviting me, as a Patron of the British Polio Fellowship, to Sponsor and speak at this evening’s event launching of their Optimal Clinical Care Pathway for people affected by Polio.
(I am pleased to see fellow Members of the Senedd here today including…..)
Tonight we will hear from CEO of the British Polio Fellowship, Kripen Dhrona, who will speak about The British Polio Fellowship; from Trustee Jerry Hutchinson, who will speak about What is polio, the late effects and Post-Polio Syndrome; from Trustee Frances Quinn and Senior Specialist Occupational Therapist Maria Potter, who will speak about the Launch of the Optimal Clinical Care Pathway; and from Ambassador Hamish Thompson, who will tell us about a polio survivors experience.
It is estimated that there are approximately 40,000 to 50,000 polio survivors in the UK, including many living in Wales.
However, it is widely acknowledged within the polio community that these notification figures represent a low estimate of people infected by the polio virus and sustaining neurological damage.
Polio survivors face significant unwarranted variation in care across the UK, which is compounded by an overall lack of awareness and understanding amongst both health professionals, including those in primary care, and the public, about polio, late effects of polio and Post-Polio Syndrome or PPS - as well as the misconception that polio has been completely eradicated in the UK.
Polio survivors report significant difficulties when accessing healthcare settings, including:
* a lack of health professional knowledge of polio and its long-term consequences
* failure to diagnose PPS
* misdiagnosis
* assumptions that weak/atrophied muscles can be built up through exercise
* failure to investigate early PPS symptoms such as difficulty breathing or swallowing properly
* inadequate orthotics provision and maintenance
* poor pain relief
* and inappropriate referral for surgery.
PPS has become more common in the UK in recent years, because of the high number of polio cases that occurred before routine vaccination was introduced.
Polio survivors in the UK are typically age 50+. There is now a growing cohort of polio survivors presenting in clinical practice who are younger, and many of whom contracted polio abroad prior to moving to the UK.
The last polio outbreaks in the UK occurred in late 70's, whereas the last outbreaks elsewhere occurred much later, India and Nigeria in 2014 and 20 cases in Pakistan and 2 cases in Afghanistan in 2022.
The optimal clinical care pathway, which we will hear of in more detail later, sets out what good treatment, care and support looks like for polio survivors in the UK.
The pathway has been designed to support local systems, health boards, providers and health professionals to commission and deliver quality and efficient services to meet the needs of this population.
It is expected to be flexible enough to be adapted to local population needs and resource.
I will now pass on CEO Kripen Dhrona, who will tell you more about The British Polio Fellowship.