Brought up to think they could do anything, thalidomiders, as they term themselves, are now experiencing the health problems of middle age. Jennifer Trueland investigates
When Anne Horton was growing up, she was taught that she – and other children affected by thalidomide – could do anything they wanted. Now, as the group reaches their 50s, this attitude is beginning to have consequences. Some people, she says, brought up to believe there were no limits, are now feeling ‘disabled’ for the first time, as their bodies begin to submit to the strains they have been put under. She should know. A qualified occupational therapist, she is an adviser on the Thalidomide Trust’s HealthLink telephone support line, so hears at first hand about the problems people are facing. ‘Everyone’s getting on a bit,’ she says. ‘They might find one limb is playing up, that their shoulder is bad, or their hip. A lot of people have pins and needles. And when there’s a problem with one limb, they might no longer be able to do tasks which they could previously – like getting dressed and getting into the car.’ One of the issues, ironically enough, is the positive labelling which the group has experienced since childhood. ‘We were always told we could do anything – that’s why people have done all sorts of things, like bungee jumping’, she says. ‘But suddenly people can’t do things any more – I’ve had some people say that they feel disabled for the first time.’
Pain is worst problemPhysiotherapy is obviously one of the weapons in the armoury of those trying to alleviate the problems – and, in particular, to help people relearn the way they do things, to stop them putting unbearable strain on themselves and it’s something which Anne Horton often advises. Pain is one of the worst things, she says, with many rating it as seven out of 10 in intensity, and many are on numerous different forms of medication. Often, she says, it’s the people who have really pushed themselves, who have ‘carried the rubbish out with their teeth, but haven’t listened to their bodies’ who are suffering the worst ill-effects. Physiotherapy can help people to relearn habits which are putting strain on themselves, she says. For example, someone who has always sat cross-legged on the floor, and got up on their ankle, might find, as they age, that the ankle suffers problems. ‘They have to learn that they have to use their knees to get up – and relearning is hard,’ she says. Thalidomide – the drug taken by many women in the 1960s to prevent morning sickness in pregnancy – hit the headlines again earlier this year, when the four UK governments announced a package of compensation aimed at helping the group – now around 465 people – continue to live as independently as possible.
Compensation packageThe Department of Health pledged £20 million, with a further £1.1 million promised by Northern Ireland health department, £1.9 million in Wales and £3.4 million from Scotland. The funding is intended to help thalidomide survivors to make adaptations to their homes and environments and to support them with the effects of ageing. But, according to Dr Martin Johnson, director of the Thalidomide Trust, what it should not be paying for is physiotherapy. ‘Once a person has musculoskeletal problems, then physiotherapy is a health need,’ he says. ‘The whole point of this money is that it should not be used to do what the health service should be doing in any case.’ Individuals should be thumping their GPs’ desks, insisting that remedial physiotherapy is required, he says, although he admits that not many of the group currently access this through the NHS. Thalidomide survivors are a challenge to physiotherapists, he says, because they have unusual requirements: ‘Physiotherapists can restore function to joints that have been abused and can get the muscles back into working order, but they have to go back to first principles and look at each individual’s needs to see what works, and what it will take to get it sorted,’ he says.
Paying for physioDespite Dr Johnson’s aspirations, however, some thalidomiders are already planning to use some of their share of the funding to pay for physio and other forms of therapy. One is Sue Kent, who has, she says, already saved her first £30 receipt (payment to a massage therapist) to be redeemed when the money comes through. ‘The physio I see is fabulous,’ she says. ‘But, if you go through the NHS, you have to wait a long time – and physio is best done quickly. She is something of an expert in the therapy field. She trained in sports massage at Cardiff. Born with arms eight inches long and just seven fingers, she works with her feet – particularly popular, she says, with muscled sportsmen who appreciate the strength and power behind her massages. She has brought out a DVD – www.enjoyfeet.co.uk – demonstrating her techniques. She values her physiotherapist. ‘I’m quite sporty – I ski and sail – and physiotherapy helps me with day-to-day activities, such as driving.’ For some physiotherapists, the challenge is a great opportunity, however they happen to meet their patients. Chance, and her car stickers, brought physiotherapist Elizabeth Davison in contact with a thalidomide-impaired patient. Based in the Bedale/North Yorkshire area, Elizabeth Davison runs a mobile private practice specialising in neuro and functional rehabilitation. ‘I was driving through Northallerton and in the car behind me, a woman said to her friend “stop that physio, I need her”,’ she says. The patient lives independently but was developing a number of physical problems and recognised that she needed help. ‘She was having functional problems – she uses a wheelchair but was having difficulty with transfers. She has also developed chronic back pain. She used to walk and would swim three miles a week, but couldn’t do it because of the pain. She was putting on weight because she couldn’t maintain her fitness – and she couldn’t transfer into her car to go and see a physiotherapist. It was like a set of dominoes: one thing followed another.’ Her rehabilitation background meant that Elizabeth Davison was accustomed to taking a holistic approach, and this is what is happening in this case. ‘I could see the wheelchair was old and was able to link her in with the wheelchair therapists and suggested a glide board, which works really well, so transfers are no longer a problem. ‘I asked her what her ultimate aim was, when we got on top of the pain, and she said she’d like to get back to swimming, so that’s what we’re working on.’ Elizabeth Davison persuaded the patient to give the Wii-fit a try (a sports-based computer game), and posted on interactiveCSP, the Society’s networking website, for advice from other physiotherapists who had used this approach. She also contacted the Thalidomide Trust, which had advice on ways to adapt the Wii-fit console. ‘Now I’m trying to locate an accessible swimming pool,’ she says. She would love to see services such as those she offers available on the NHS and believes that for people like her patient, appropriate input from physiotherapists can mean the difference between an independent life and a higher dependence on carers or family. ‘I think physio is vital in terms of function – for many people, if they didn’t have physio, they wouldn’t have their independence,’ she says. Anne Horton says that members of the group have varying needs. Some will require orthopaedic surgery, she says, while others can see a great improvement through physiotherapy and exercise regimes. ‘Pilates is something I push,’ she says. ‘You can use the ball and do more exercise. Others have had success with acupuncture and with massage.’ Helping people keep mobile and independent is key. ‘People can feel their world is crashing in and physiotherapy can help,’ she adds. ‘For physiotherapists, it might mean throwing away the book and thinking out of the box, but we’re here to help and can put physios in different parts of the country in touch with each other.’ fl
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