During this year's Learning Disability Week (June 20 to 26) the charity Mencap will be trying to raise public awareness of what learning disability actually means. They aim to show that, given the right support and opportunities, people with learning disabilities can broaden their horizons and achieve a great deal.
Mencap points out that every week in the UK 200 babies are born with learning disabilities that will last a lifetime, and may be the cause of frequent discrimination. Many of those born with severe and multiple disabilities are now surviving into adulthood due to improvements in neonatal care. But they require support from healthcare practitioners if they are to achieve a good quality of life.
Among the key groups of practitioners in this field are physiotherapists who specialise in learning disabilities. As members of multidisciplinary teams they provide a wide range of care to learning disabled people. But the future of the specialty currently looks uncertain - partly because so few undergraduates are aware of this area of work, or the opportunities it offers.
This is not a new situation. Patricia Auty, former head of a learning disabilities team and now a consultant, says that she knew nothing about learning disabilities before getting her first job. She believes the situation is worse today because there is little about learning disabilities on the undergraduate syllabus, and multidisciplinary health and social services teams don't give much scope for rotations in the discipline.
'One problem is that undergraduate programmes are crammed, and give little input into our specialist area. Another difficulty is that while many physiotherapists in learning disabilities are in the older age bands, and are gradually retiring, fewer people are coming in to replace them. This is because many physiotherapists are the only members of the profession in a multidisciplinary team, and they don't have enough time or support to take on and train newly qualified people. The future looks grim.'
This analysis is widely shared. 'The curriculum at the undergraduate level is full,' comments Maxine Goodman, professional lead physiotherapist with East Sussex County Healthcare, a mental health and learning disabilities trust. 'I do a lecture once a year locally, and we do have some placements for students, but we don't have senior II posts. I would like to see learning disabilities issues, such as dealing with cognitive and communications difficulties, threaded through the undergraduate curriculum as an addition to the core physiotherapy skills that are anyway required in learning disabilities. I think students would benefit from this.'
Maxine Goodman also believes that many students know so little of learning disabilities that they may be deterred from applying for the placements that are available. 'Most students don't know what to expect, and maybe a little fearful. But once they have had a placement they see it as a very positive experience.'
Steven Southwell, a second year student at Brighton University, who had a placement on Maxine Goodman's team, agrees. 'I was interested in learning disabilities, but I was a bit concerned at first because I didn't know what to expect. There was a degree of the unknown. But I found the placement extremely challenging and rewarding, and I have learned communication skills that are invaluable.'
Joan Green chairs a CSP clinical interest group, the Association of Chartered Physiotherapists for People with Learning Disabilities (ACPPLD). She says that while practitioners need a wide range of competencies, communication skills are vital, as their clients often have difficulty understanding. 'We also have to deal with their carers and help them cope with their worries about the future - and how to let go.'
At present the ACPPLD is a relatively small interest group, with just under 300 members; some specialists in the field have yet to join the group. Many practitioners believe that if more young physiotherapists realised the broad range of work and opportunities involved in learning disabilities, more would be attracted into this challenging field. 'No two days are the same,' says Jill Cassidy, senior I physiotherapist with Epsom and Ewell community learning disabilities team, and membership secretary of the ACPPLD. 'Much of my work is not hands on. It is much more holistic, looking at clients' needs across the board. You have to think laterally, look at their lifestyle - at their mobility, whether they need walking aids or orthotics - and about how you motivate clients.'
'We work not only with individual clients and their carers,' says Maxine Goodman, 'but with all the systems that surround people. We have to raise awareness, improve the skills of carers, train staff and generally try to empower people. 'There is also a health promotion aspect to our work. Many clients are at risk of obesity and lack of exercise because of their disabilities. We are working to the Choosing Health white paper. For people with long-term conditions, as soon as they move over into adult services we begin a lifetime plan to maintain their abilities and prevent health problems. Learning disabilities is a very exciting area where you have the chance to work innovatively.'
Apart from ensuring the future of their specialty, learning disabilities physiotherapists have another major concern: the impact on their clients of government policy to get more people to use generic services. 'I really don't see how this is going to happen,' observes Patricia Auty. 'All these services are looking at efficiency and cost effectiveness.
For instance, in acute services you can do an assessment and carry out, say, six weeks therapy and then do another assessment. But in learning disabilities it might take us six weeks just to do a difficult assessment. We would then have to teach the programme to the client, who may have difficulty understanding. In the end it might take us four times as long as an acute service. And what happens when you get a person displaying challenging behaviour? Clients who do not understand what is happening can become frustrated, and this leads to behavioural problems that most services cannot handle.'
Jill Cassidy shares this view. 'It may be possible for clients with less severe learning disabilities to access generic services, but there will be difficulties for the rest. Physiotherapists in outpatients have 20 minutes per patient. They will be unable to deal with challenging behaviour. Perhaps the only way around it is to have a learning disabilities specialist working alongside generic services.'
As to increasing specialist recruitment, Maxine Goodman and Jill Cassidy are more optimistic than Patricia Auty. Ms Goodman is hopeful about developing a senior II post in her team, and Jill Cassidy believes that more primary care trusts can be persuaded to come up with the right answers. 'They could provide a career structure with basic senior II posts, and then get rotations,' she says. 'The underlying problem is the lack of understanding of what our job entails.' Learning disability services may face an uncertain future, but practitioners are ready to go into battle on behalf of their clients.
Manchester's 'Fighting Fit' project was profiled in Frontline, January 7 2004 and in the supplement Public Health: promoting health and well-being (February 2005). Readers : see our Frontline archive for more information.
Further information about the project and the growing body of topic-related research can be accessed on the website of the Manchester Learning Disability Partnership, an organisation providing support to about 1,500 local service users: www.mldp.org.uk
Mencap is the UK's leading charity for people with learning disabilities: www.mencap.org.uk
Specialist physiotherapeutic information is available from the Association of Chartered Physiotherapists for People With Learning Disabilities: www.acppld.org.uk
ACPPLD's annual conference will be held from 12 - 14 September in Sheffield