Into the mainstream: physio access for those with learning disabilities

^{On the ball: Sue Over offers support to acute hospital staff in north Lincolnshire}

People with learning disabilities have often seemed to be invisible to mainstream services. And that applied in physiotherapy as well – if someone had a learning disability it was standard practice to refer them on to specialist services.

Sue Over, operational lead with north east Lincolnshire’s adult learning disability service, remembers receiving numerous calls from hospital physios telling her that  ‘one of yours is here: can you come and help?’ ‘I would have to dash over to deal with it,’ she recalls.

But in recent years there has been a revolution in attitudes, prompted by scandals such as Winterbourne View. A stream of Department of Health policy statements has stressed that people with learning disabilities should have the same access as everyone else to mainstream services and that ‘reasonable adjustments’ should be made to enable that to happen.

As with many policies, of course, there can be a gulf between theory and practice. And the new directives pose significant challenges for many physiotherapy services – especially those that are hospital based.

Jenny Tinkler, chair of the Association of Chartered Physiotherapists for People with a Learning Disability professional network, explains that when specialist learning disability teams were set up in the wake of the hospital closures of the 1980s and 90s, mainstream services were encouraged to refer everyone with a learning disability on to them.

‘I don’t think we did ourselves or people with a learning disability any great favours in that,’ she admits. ‘I think we created a culture where nobody else could see those people. Now, because the policy has changed and we are being directed to encourage people with learning disabilities to access mainstream services, we find that, understandably, there are a lot of barriers in place to achieving that.’

To combat that her association has produced a leaflet spelling out how mainstream physiotherapist services can accommodate learning disability needs and offering practical advice and guidance. The initiative was born from a sense of frustration that, despite the new policy, many mainstream services were saying they didn’t know what to do or how to manage people with learning disabilities. But she accepts the leaflet will not solve things by itself. The real key will be establishing closer links between hospital and specialist community services at a local level. 

Reasonable adjustments

Sue Over has been working closely with her colleagues in nearby acute hospitals for a couple of years and the results are now beginning to show. ‘We take referrals for people who are on the learning disability register,’ she explains. ‘If those referrals require a mainstream service we signpost the referral to the correct department and then support that mainstream service in whatever they need to treat the client. So if the client is struggling with a clinic or hospital environment then we’d try to adapt the therapy for the client.’

This collaboration is aided by the fact that a number of hospital physios have had short-term rotational placements with the community team. So when they return to the hospital they have the skills and confidence to work with people with learning disabilities. It means they keep the community team informed if they are treating one of their clients but won’t usually require direct support.

Much of this comes down to good communication and a willingness to make reasonable adjustments to accommodate clients, says Sue. ‘It’s mostly about giving the people we work with the time they need, avoiding frightening them and getting the right people around them.’

Recently the community team have been working with hospital X-ray and therapy staff to conduct video fluoroscopy diagnostic assessments of people with learning disabilities with swallowing problems or chest infections. It has involved a lot of preparation and careful management, including positioning clients correctly to ensure the X-ray is effective. This is real partnership working, using everybody’s skills to support somebody with learning disabilities, says Ms Over. 

And it seems to be working. ‘In the past if we sent someone for this procedure it would be unsuccessful 90 per cent of the time. But now we’re having a 100 per cent success rate.’

The overall impact has been positive. ‘We are having fewer crisis calls and we’re being used appropriately to go out and support where really needed.’ 

Raising awareness

One basic problem, Ms Tinkler suggests, is that many professionals remain nervous about people with learning disabilities. ‘A number of our students admit this was not the placement they chose and they were worried in advance.

‘Yet after five or six weeks they’ve had a great time. They can see the value and won’t be scared any more of treating someone with a learning disability. A lot of it is exposure and awareness and just understanding that, at the end of the day, these are people who have physiotherapy needs just like anybody else would. But if you’re not exposed then inevitably the barriers go up before you even start.’

Physiotherapist Terri MacGregor has seen this from both sides. Until a year ago she worked in intensive care and outpatients in an acute hospital in north east England. She now works with a community learning disability team covering the east of Durham.

Hospital services tend to follow more of a medical model, where clients are treated for their condition rather than holistically and this can be problematic. But the biggest obstacle, she says, is time. In outpatients, for example, there is a strict timetable to follow – ‘and our clients don’t fit those normal limits’. But it might be possible to accommodate them if time was allowed for an initial assessment and briefing in which the clients’ needs were discussed.

Right people: right time

Lindsay King, a physiotherapist in a small learning disability community team in Perth, central Scotland, works closely with hospital colleagues to ensure her clients get the most appropriate service. She believes that simple things, such as clear communication and slowing the pace of interventions can make a huge difference. ‘It’s just becoming very aware of what’s jargon and “physio talk’ and modifying your language so it’s simple. By slowing things down and allowing that extra time you often have a much better interaction.’

Ms Tinkler accepts that some people with very complex disabilities may be better suited to specialist services. But she would like to see greater recognition among hospital staff that learning disabilities cover a wide spectrum and that those with mild disabilities are perfectly capable of accessing mainstream services, often with only minor adjustments. 

‘Often staff are expecting something quite complex. But really it might just be giving someone a double appointment rather than a single one or meeting somebody at the hospital entrance so they know where to go. It’s a matter of getting people to think more laterally about this whole issue.’

She feels the profession is ‘still in the foothills’ of tackling the issue. ‘There are pockets of really good practice where therapists are embracing this but there will be other areas finding every reason not to. But I don’t know of any area in the country that’s cracked this across the board.’

Nevertheless this has to be resolved – for the sake of the individual with learning disabilities. ‘If somebody is referred to me for back pain that isn’t my expertise so I’m not going to be up-to-date with the current practice. So they’re going to get a very second rate service compared to being referred to someone within the musculoskeletal service. It’s a matter of receiving treatment from the right people at the right time in the right place.’

More information

To find out more about the ACPPLD, visit their website.  

The Department of Health's pledge for England:

The Department's service model for England says that people with learning disabilities should receive good care and support from mainstream NHS services. This should include annual health checks, hospital passports where appropriate – and support from specialist community services if needed.

The website states: ‘It is well recognised that people with learning disabilities have poorer physical and mental health compared to others, and a lower life expectancy. 

‘We are firmly committed to reducing the health inequalities experienced by people with learning disabilities, and significantly improving their health outcomes.’ It adds that it will work with the regulator to ensure all health services are used by people with learning disabilities and that this is monitored and inspected. 

The Scottish government’s learning disability strategy also supports the principles of access to good quality mainstream health care services.

Author