Phil Hunt on the need for a national strategy to support those suffering post-polio syndrome
When the NHS began life in 1948, it was immediately faced with a series of polio outbreaks which swept Britain, claiming the lives of thousands and leaving many more with severe disability. Fortunately, a programme of mass vaccinations put a stop to new cases and whilst, sadly, this is not the same in many other countries, our knowledge of polio has become a distant memory.
For those countries where polio remains endemic, huge challenges remain and survivors face an uncertain future. But even in Britain, as many as 120,000 people are now affected by Post-Polio Syndrome, or PPS. This is similar to the number of people affected by Parkinson’s or Motor Neurone Disease, yet few people are aware of the condition – with a recent YouGov survey putting the figure at 7%. Even many of those who have contacted polio are unaware.
Yet, PPS is debilitating and a secondary blow to those who already live with the effects of polio. After several years of stability, individuals can develop increasing weakness, fatigue and pain in previously affected or unaffected muscles, a general reduction in stamina, breathing, sleeping and swallowing problems, and cold intolerance. The presence and intensity of each varies depending on the individual.
Up to 80% of those who had polio in the past can develop PPS later in life. We are also seeing more people of working age with the condition from South Asia and Africa settling in the UK. The provision of good services for this group will remain an active problem for many years to come.
Just as the public remains largely unaware, so sadly does much of the NHS. Many GPs lack understanding and there are few specialist consultants available, making it difficult for sufferers to get recognition of their illness and eventual treatment. The tragedy is that with proper management, the consequences of PPS can be minimised and quality of life can be good.
Particular problems exist with access to good orthotics services and compared to health care provision in Europe, Britain is significantly under resourced. There is virtually no free access to gait and vector analysis with biomechanical engineers, to ensure splints and other devices are manufactured optimally.
My Oral Question in the Lords is a timely introduction to PPS Day on 22 October, when many landmarks are being lit up with the British Polio Fellowship’s colours to support the event. These include iconic structures, such as Gateshead Millennium Bridge and Gloucester Cathedral, and I hope it will help bring knowledge of PPS into the public eye. The Fellowship is a charity that has been around for over 75 years, offering wide support with no government funding. The time is right to change this situation.
Rather than see polio as something from the history books, we must now understand that thousands of our fellow citizens live with its consequences every single day. The need for direction and control has become ever more important in our fragmented NHS, and I will press Ministers to launch a national strategy on PPS to give hope to those patients currently being let down.
Lord Phil Hunt of Kings Heath is Shadow Health Minister in the House of Lords. He tweets @LordPhilofBrum
Published 19th October 2015