Physiotherapy is just one of the many forms of support that have been disrupted for people with learning disabilities over the past 18 months.
Services, which are, predictably, under-resourced, have had to change the way they deliver care, and in many cases cut down on care altogether. And the implications may be considerable, the professionals believe.
The Association of Chartered Physiotherapists for Adults with Learning Disabilities (ACPPLD)1 says there is widespread evidence and opinion that specialist learning disability physiotherapy has a positive impact on the health outcomes of adults with a learning disability as well as reducing the cost for health and social care.
Deepak Agnihotri, social media officer of the 350-member network and the first learning disability physiotherapist to achieve Advanced Clinical Practitioner status, goes into more detail about how physiotherapy can make a major contribution to reducing the disproportionately high death rates in this population.
For some people, this may be because physiotherapy can alleviate the specific conditions to which people with learning disabilities are prone. “The best way to deal with respiratory issues, for example, is through specialist physiotherapy. Without it people become less mobile, their posture is affected, their swallowing becomes problematic, and the internal organs are compromised.”
But in addition, he points out, people with learning disabilities “spend more time in bed or chairs, and don’t have so much time upright”. Even people who do not have other physical conditions or disabilities are comparably much less active than average,2 with knock-on effects for their muscle tone, strength and posture as result. “People with learning disabilities are also predisposed to the factors that will make them frail, from childhood on,” Agnihotri says.
Overall, there’s a combination of factors (some of them interacting) which, as he points out, all contribute to the higher death rate. “And it starts in childhood, with a cumulate effect so that without intervention it’s become more difficult to correct by the time someone reaches adulthood. But physiotherapists can put plans in place to slow the impact of all these things. People should have meaningful physical activities added to their life.”
Putting those plans in place, though, is a task in its own right. Mainstream physiotherapists can go through a set of exercises, give the patient a sheet of instructions and send them away, perhaps making a follow-up appointment (and in the knowledge that patients can probably find some online demonstration videos if necessary too). Learning disability physiotherapists, like learning disability rehabilitation workers, need to approach things slightly differently.
“It’s not always easy to explain,” Agnihotri agrees. “You have to make it something that isn’t a chore, and that has rewards (like a star chart or a cup of tea), working with things that people like and enjoy. For instance you can modify a breathing exercise so that someone’s blowing a tissue. You can ask them to kick a balloon, or make a brew, do a high five. I’m trying to get them to use their core muscles and reach, but I don’t have to make it regimented. We provide guidelines in a picture format too.”
Getting carers – paid and unpaid – on side is obviously key too, given that these are the people who often have day-to-day responsibility for making sure the exercises get done. “Whenever we are providing something, I emphasise that this is as important as medication. Carers are our ‘eyes and ears’ because they know if something’s changed. We make it clear, though, that we’re not asking them to be physios: we are doing the assessments and the professional work. And I have to say mostly people are happy to do it.”
Agnihotri adds that in his opinion not everyone with a learning disability needs a specialist learning disability physiotherapist. “Someone with a mild learning disability who has back pain doesn’t necessarily need a specialist service, though they may need a reasonable adjustment. Then there’s a cohort who will never touch the mainstream services at all. Importantly, though, learning disability physiotherapists are also in a position to work across the hospital and also work with other statutory as well as third sector services: linking people into other services they may need or benefit from, which may not just be health.
The past 18 months has obviously hugely impacted on all of this. Day centres and other services have shut; hospital appointments have been hard to impossible; and at the same time many people (across the whole population) have been far less active in any way, while carers have been under acute stress too. Learning disability physiotherapists have seen a major shift away from ‘proactive’ management, taking that holistic long-term approach, to a situation where they are mainly reacting to urgent referrals.
This has certainly been Agnihotri’s experience too. “People who used to move around more are now not able to walk five metres. People who used to use a walker now can’t stand up, and we’re seeing a distinct increase in the people who are brought to us,” he says. Yet importantly, not all of this is necessarily permanent; in fact the vast majority of the survey respondents reported that ‘they had partially achieved successful outcomes from rehabilitation’ – and, interestingly, most of them were using remote technology to do this (with predictably mixed results).
As early as last November the ACPPLD surveyed its members to see how lockdown had already affected specialist learning disability physiotherapy services.3 The results from the 88 respondents were not encouraging, pointing out that many services will struggle to adjust back – especially since there will be a surge in new referrals.
The report, compiled by David Stanley from Guys and St Thomas NHS Foundation Trust, flags up a huge concern that people who have not had the physiotherapy they need will have lost out considerably.
The report says: “The results highlight that adults with a learning disability have experienced a range of changes in their physical presentation [and] that individuals who are able to mobilise, walk and transfer, as well as those with complex physical disability have been significantly affected by the pandemic.”
One characteristic respondent reported: ‘We’ve had so many falls and mobility referrals for people with deteriorating mobility because they’re not able to be as functionally active in the community.”
Service users with more mobility had lost muscle strength, put on weight, and just been unable to do the daily activities which made up their ‘normal’ day; people with complex physical disabilities had experienced sometimes serious and painful problems with their posture (which could include pressure sores and stiffness).
The big fear (as in many other specialities) is that physiotherapy services won’t get the support, capacity and resources they need to ‘build back’, and build back the bodies of the people they support. “Getting out of bed, standing upright and getting to the commode; these are some people’s life goals,” Agnihotri concludes.
“I don’t think people understand the impact of those kind of things. We can see the difference we are making in someone’s life: we’ve prevented their decline and added five years of good-quality life. It’s our specialist knowledge and skills doing that.”
Radhika Holmström is a health and social care journalist
