The British Polio Fellowship has launched a pathway to outline how good treatment, care and support looks like for polio survivors in England, Wales, Scotland and Northern Ireland.
The British Polio Fellowship, a national charity supporting and empowering polio survivors unveiled its clinical pathway during an event held yesterday (20 March), attended by more than 100 people.
Healthcare commissioners, general practitioners, clinical specialists, and therapists working locally and in neurological rehabilitation centres and specialist centres will have a much better understanding of the pathway polio patients should be following, to enable them to provide more effective care with earlier diagnosis, improved treatment, and better outcomes.
“For many years polio survivors have reported delays in diagnosis, a lack of awareness by healthcare professionals of the late effects of polio and post-polio syndrome and poor levels of care beyond specialist centres.
“With the support of clinicians and people affected by polio across the UK, the pathway has been developed to show what is needed to provide good healthcare for the polio community.
“The pathway has been endorsed or approved by numerous clinical, professional organisations and this is a major step forward” explained Kripen Dhrona, Chief Executive Officer at the British Polio Fellowship.
In the UK, over 76,000 cases of polio were recorded between 1932 and 1962, significantly dropping after the vaccine was introduced in 1956. Today, it is estimated at least 47,000 people are living with the late effects of polio. It is anticipated this figure is even higher, because many polio cases were not recorded at the time, either because the person fully recovered, or polio simply was not reported.
Polio was eradicated in the UK, in the 1980s. Those who had contracted polio, were left with varying levels of disability such as paralysis, a shortened or withered arm or leg, sleeping or breathing issues, or twisted and bent spine.
As they grow older, survivors are beginning to notice worsening or new symptoms. Post-polio syndrome (PPS), as it is known, is quite common amongst those who have had polio. Around 60% will go on to develop new muscle weakness, leading to further muscle atrophy and worsening pain, fatigue and breathing issues.
The Fellowship advise polio survivors experiencing deteriorating or new symptoms to take a copy of the pathway with them when they visit their GP. They may need to be referred to a neurologist or specialist centre, such as the Lane Fox Unit in Guy’s and St Thomas’ Hospital in Westminster, London.
Dr Simon Shaw, Clinical Lead for the pathway and former Consultant in Rehabilitation Medicine at Lane Fox said, “Once a patient has a very clear care plan, they can be referred to a whole multitude of people. For example, at Guy’s and St. Thomas', we have some very specialist orthopaedic consultants who work with polio patients, who are adept in looking at knee replacements and joint replacements.
“There is very specialist experience around pain management, but also respiratory management, sleep disorders, and a whole range of other people. And then obviously, there’s the ongoing therapy and some very esteemed colleagues at Guy’s and St. Thomas' lead that through the Lane Fox post-polio service.”
Dr Shaw has gone on to become Clinical Director at The National Spinal Injuries Centre in Stoke Mandeville, Buckinghamshire.
Shaw added “Polio patients are very deserving of this tailored and specialist care, and I think it shouldn't be underestimated. Even though a lot of the symptomology, is in common with other neuro disabilities, the polio cohort come with a unique set of circumstances. So socially, psychologically, historically, I think there's a real role for a specialist service.”
The polio community in the UK is a broad church of people with various needs. It includes young people, older people, people with children, people still at work and survivors from other countries.
“The pathway is a guide and will need to be flexible and tailored to the individual for it to be used locally and regionally – or adapted to local population needs” commented Dhrona.
“We very much hope it will raise the level of awareness and prioritise the needs of survivors with late effects of polio or post-polio syndrome.
“But equally important, it needs to direct Commissioners of Health Boards and Integrated Care Boards to ensure healthcare services can meet the needs of this very important population.”
The pathway document is now available on the British Polio Fellowship website: www.britishpolio.org.uk