One step beyond

Polio has been successfully eradicated in the UK since immunisation began in the 1950s, but awareness of post-polio syndrome, which can occur later in life, is little known and treatment even less understood, writes Jennifer Trueland

When physiotherapist Esther Palmer was referred a patient with post-polio syndrome, she admits that she was none too sure how to treat it. ‘It was something I knew very little about I certainly hadn’t had any training in it as an undergraduate so I thought I’d find out a bit more. I did literature research and read up on best practice. I also visited the Lane Fox Unit, a specialist centre at St Thomas’ hospital.’ What she discovered was that physiotherapy can help post-polio patients but it has to be done judiciously. While exercise programmes are of benefit, they have to be sub-maximal ‘going for the burn’ is completely out. Instead, patients have to be persuaded of the benefits of energy conservation. Many people may share Esther’s initial lack of knowledge of post-polio syndrome. But chances are there are patients with the condition in clinics throughout the country as well as many more yet to be diagnosed. Polio, an infection disease that can lead to paralysis, has been eradicated in the UK since the introduction of an effective immunisation programme in the late 1950s and early 1960s.  

Living with symptoms  

There are, however, around 120,000 people in the UK – according to official figures who have survived polio. While some are left with varying degrees of permanent disability and weakness, others can appear to have made a full recovery often after years of arduous rehabilitation. Many of these, possibly more than 50 per cent (although the incidence is not known), are now suffering the effects of post-polio syndrome, a condition that goes beyond the normal problems associated with ageing, bringing a whole set of new challenges for sufferers. A glance at the user forum of the British Polio Fellowship, the main charity and support organisation for polio and post-polio, reveals heart-breaking stories of people who had previously enjoyed independent lives, but who now struggle to walk from one end of their living room to another. And it also shows how difficult some of them find it to have their symptoms taken seriously. Post-polio syndrome has been recognised in the literature for a long time, says Alexandra Curtis, clinical lead in rehabilitation at St Thomas’ Hospital, who is involved in developing treatment guidelines for the condition. But it is only in the last 10-15 years that it has been given a name. As a syndrome, or set of symptoms, there is no simple diagnostic test, but sufferers will usually suffer from a variety of things including fatigue and muscle pain. To make matters more complicated, every single case will be different. ‘The first thing we have to do is establish a baseline,’ says Alexandra Curtis. ‘We have to look at the effects of the polio and work out what they were able to do when they recovered. We have to look at the aids and adaptations they have been using. We also have to look at new symptoms. Additionally, we have to check that, from a medical point of view, everything else has been ruled out. A lot of the symptoms could be caused by other neurological conditions and just because you’ve had polio, it doesn’t mean you won’t get something like MS.’  

Tailoring to the individual

As well as the physical assessment, however, the consultation can involve emotional therapy too. People with polio, who had been encouraged to push as hard as possible to recover as well as possible, can find it hard to come to terms with new problems, she says. Helping them to accept there is a problem is an important first step. ‘Independence is a running theme with these patients,’ says Alexandra Curtis. ‘And it’s perhaps less hands-on than traditional physiotherapy it comes with quite a lot of emotions. You’ve got to look at each patient holistically.’ While management is tailored to the individual, in general it will involve help to understand the importance of pacing, of energy conservation, and of managing fatigue. It will also include exercises, but again these must take into account the effects of polio and the needs of each patient. And it could involve encouraging them to accept referrals for equipment or orthotics to help them regain independence. Siobhan Macauley, who chairs the Association of Chartered Physiotherapists in Neurology, and who works in Belfast, believes it’s important that someone who has knowledge of the condition treats patients. ‘A lot of physios will never have come across polio certainly the last epidemic in Northern Ireland was in the late 1950s and I think that people with post-polio will really want to see someone who is knowledgeable. Otherwise, it might do them more harm than good.’      

Expert opinion

Esther Palmer, who is now a clinical lead physiotherapist with the Kensington and Chelsea rehabilitation service, has seen several patients with the condition since that initial encounter. Although she insists she is far from being an expert, her work with post-polio was honoured this year when she was named physiotherapist of the year in the British Polio Fellowship awards. The judges praised her for ‘excellent listening skills and her ability to carry out a comprehensive assessment and create personalised exercise programmes’. She was nominated by Verite Reily Collins, who developed polio in 1956 when she was 15. A journalist and writer, she didn’t realise she had post-polio syndrome until she was being treated for cancer. ‘When I was in hospital, I met a doctor who was really of the old school. I was incredibly lucky many doctors these days, indeed, many health professionals, don’t seem to know anything about polio or post-polio syndrome. They say things like “Polio, we haven’t had it here for years”. But he sent me off for all sorts of tests and they started giving me exercises to do.’ When she was referred to Esther Palmer, Verite was immediately impressed. ‘Esther is unique she took the time to listen to me. I know I’m very lucky to have her, and my specialist doctor, because I’m getting treatment that so many others in my position just don’t get.’ She describes the physiotherapy she receives as ‘very targeted’. I get a lot of pain like red-hot pokers going up my back, several times a month. But it’s almost totally disappeared, thanks to Esther and her tiny exercises.’ She also enjoys weekly hydrotherapy and is trying to persuade her health club to institute aqua-aerobics classes (‘even once a month’) for people in her position, after receiving a research paper on the subject from her physiotherapist. Although the official figures suggest that there are around 120,000 polio survivors living in the UK, Verite Reily Collins thinks the true figure will be much higher. ‘There are three million in the US, I think there are probably a million here,’ she says. Many of these may already be suffering post-polio syndrome undiagnosed and untreated. Does she think it’s unfair that having had polio as a child, its impact returns, to such effect, after so many years? ‘If I thought about it being unfair I’d be miserable for the rest of my life,’ she says. ‘A lot of people have worse things like having a leg blown off in Afghanistan. So I wouldn’t say it’s unfair but yes, it is annoying.’ fl         

 

What is post-polio syndrome?

Symptoms include:

  • onset of new weakness or abnormal fatigue in muscles
  • reduction in stamina
  • pain in muscles and/or joints
  • muscle atrophy
  • problems with sleeping, breathing and/or swallowing
  • intolerance to cold
  • The British Polio Fellowship estimates that approximately 120,000 people in the UK are living with post-polio syndrome.
  • However, considering only 55 per cent of GPs are able to diagnose it, and 18 per cent know how to treat it, the number may be much higher. www.britishpolio.org.uk Verite Reily Collins’ website is at: www.healthspanews.com
  • Post-polio syndrome is a neurological condition that can occur in people who have had polio. It generally starts slowly, but can come on suddenly, and can be triggered by events including falls, surgery, or periods of immobility.
Author
Jennifer Trueland

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