Postural care and people with profound and multiple learning disabilities (PMLD)

This article on postural care is a sample from our In Focus special issue on Profound and Multiple Learning Disabilities (PMLD). You can access the issue here.

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People with profound and multiple learning disabilities (PMLD) “often sit and lie in limited positions, leading to a high risk of body shape distortion”, says Public Health England (PHE) guidance on postural care and people with learning disabilities.¹ “This is not inevitable. The right equipment and positioning techniques can help to protect body shape in people with movement difficulties,” says the PHE guidance.¹

According to the PHE guidance, postural care refers to “an approach that aims to preserve and restore body shape and muscle tone for people with movement difficulties”.¹

Postural care addresses all body positions that an individual adopts over the day and it usually involves a personalised 24-hour programme that includes provision of adaptive seating, positioning equipment to support the person in lying, including at night time, moving and handling techniques, and advice and training for family carers and professionals across all settings, says the PHE guidance.¹

Sarah Clayton is a clinical educator at Simple Stuff Works, an equipment manufacturer and education provider specialising in the supported lying field, working with both NHS and private healthcare providers.

She says postural care is “the protection of a person’s body shape, function and quality of life, and it is provided through the use of supported sitting, standing and lying”.

“If a person is unable to change position effectively independently, then they are dependent on other people to support them to change and adopt different positions,” she says. Postural care is “a fundamental care need for people who are unable to adopt a variety of different positions”.

Postural care is around the clock care

Rachel Wright is director and founder of Born at the Right Time, which is about bridging the gap between families of people with complex disabilities and the many practitioners who support them, enabling effective communication and collaborative working with the whole team that surrounds somebody with disabilities, whether unpaid, paid, family, friends or specialists.

“As somebody who went from being a registered nurse on one side of the bed who worked in healthcare – where I was the person or part of the team giving the life-changing news to people and then supporting people within their new reality – when I became a parent of somebody with complex disabilities, I realised the single most important thing clinicians and specialists can do for us is to listen, communicate and work with us,” she says.

Postural care is “the ‘round the clock’ in everything – the proactive physical support that’s needed when supporting somebody with profound disabilities to ensure their body is protected and comfortable”, says Ms Wright.

Why is postural care an important issue

There are “physical, psychological and emotional effects of body shape distortion, and poor postural care can have severe and life-threatening consequences”, says the PHE guidance.¹

“In someone with movement difficulties, failure to provide postural care will lead to the person regularly adopting their preferred sitting and sleeping positions. Over time, due to a lack of movement and the effects of gravity, highly predictable body shape changes develop, which eventually mean they cannot move out of their preferred position. Their body shape will continue to deteriorate, resulting in health problems, pain, increased equipment needs and greater dependence,” says the PHE guidance.¹

Ms Clayton says postural care is important because “gravity causes highly predictable changes in a person’s body shape over time”. “Those changes in themselves become a barrier to a full and active life because they impact everything – your mobility, communication, pain levels – there isn’t an aspect of a person’s life that isn’t touched by this element of their care.

“The way you lie is the way you sit, and the way you sit impacts what you can do, how you feel, and the extent to which you can participate in everything – in family life, socialising, sport and activity, leisure, education.”

For those whose body is a place of pain and discomfort, “that puts a cloud over everything”, she says.

Postural care is “one of the essential parts of care which runs through everything else like the words in the middle of a stick of rock. It’s integrated into everything,” says Ms Wright. “Postural care is the ‘essential ordinary’ that the layers of joy and fun are placed on top of,” she says.

The benefits of postural care

“If we can minimise the impact of gravity on children, young people and adults with PMLD, then every element of the person’s life benefits,” says Ms Clayton. For example, it is easier to participate in a friendship group if you can sit comfortably in a wheelchair for an extended period.

“The better the alignment of the individual, the better for that person’s bodily function – from their digestion to their ability to go and watch a football match – everything is simpler,” she says.

Getting postural care right also has potentially “huge benefits to the system”, including cost benefits for health, social care, education and residential providers, she says.

With good postural care, individuals have “the chance of living longer, more comfortable, fun lives”, says Ms Wright. “Longer because a twisted spine reduces the bowels’ and lungs’ ability to work, more comfortable because scoliosis and dislocated hips come with severe pain, and more quality of life because people are not being restricted to only one position or one chair or one place in bed, but can sit in their chair for prolonged periods and enjoy the things that make life fun and good.”

The barriers to good postural care

A lack of awareness, resources, and research is just some of the barriers to good postural care identified by the PHE guidance.¹

“The complexity of the system, the lack of accountability, and the lack of support in increasing the capacity of the team around the person with the profound disability”, are also barriers, says Ms Wright.

Another barrier is “the reactivity of the system rather than the proactive nature of it”, she says. “We wait for problems to arise, but then they become more complicated, rather than measured, incremental and predictable.”

Ms Clayton says the “biggest barrier is the sense of inevitability that a person with PMLD will live within a body that will become asymmetric and damaged over time”.

There is also “a lack of accountability, because so many different services are involved”, she says.

She stresses that “the clinicians I work with on a daily basis – both within statutory services and independent provision – are amongst the most highly skilled, passionate and devoted practitioners that you could hope to come across”.  However, these practitioners themselves face barriers, including a lack of understanding from the multidisciplinary team about their role, and their ability to prescribe the equipment they feel most suits a person’s needs, says Ms Clayton.

From a funding perspective, there can be a lack of clarity surrounding who is responsible for providing postural care for people with PMLD. And it is a “postcode lottery” in terms of the different criteria involved with funding in different parts of the country, which limits access to postural care support, she says.

People who are at very high risk cannot physically move themselves out of their equipment or out of position and may also face “phenomenal challenges” in terms of their communication skills, as well as being unable to advocate for themselves, she says.

Waiting – sometimes at least 12 months – for a wheelchair, for example, could have “a profound impact” on a child with PMLD and their postural care, says Ms Clayton.

While medical advances mean that children with PMLD are now living to ages never seen 25 years ago, often, community-based systems have not had the investment or infrastructure to keep up with those children and young people who are becoming adults, she says.

The fact that postural care may sound like something simple could be a barrier in itself, she says. “When we talk about providing supported sitting, standing and lying it sounds straightforward, but you only have to look underneath the surface of that to start to recognise it’s a really complex area to get right. But we can get it right,” she says.

What we know about what works

While there is limited evidence about what works regarding good postural care, this is due to a lack of research, says Ms Clayton.

This “lack of curiosity from the research community has real-world consequences both for people who are working in, or accessing 24-hour postural care provision”, she says.

However, a lot of guidance and information on postural care for people with PMLD is available, for example, from Public Health England.¹ (See resources box)

Ms Clayton also highlights the referral tool from Changing Our Lives. The tool helps people with concerns about postural care to identify who they need to talk to. (See resources box.)

With good postural care, for health and care professionals and carers, “the best place to start” is with the person requiring that care, examining where you spend your time over a 24-hour period, says Ms Clayton. This can be recorded in a pie chart divided into 24 segments – one for each hour.

“You need to be thinking specifically: does this individual have appropriate, comfortable, fully functioning equipment?” she says.

 

The three key pieces of equipment that cover most 24-hour periods are the person’s wheelchair, their alternative seating, and their supported lying (which used to be called the ‘Sleep System’), she says. If the wheelchair is not very comfortable, or there is no alternative seating, for example, “you can quickly spot where to begin” with postural care.

Good postural care is resourced – it’s about the right equipment, the capacity to use that equipment, and the training to use it, to understand what it is for, and how and why it is used, says Ms Wright.

To have good postural care, it needs to be realistic for those supporting people with PMLD, she says. And what works is also “when there is shared decision making and it’s personalised”.

Ms Wright would like to see a singularly funded, clear pathway for postural care for people who, at birth, are identified as having limited movement, with a shared language and standards that services are accountable to.

Ms Clayton would like to see “standards around competency of clinicians who are supporting these very complex individuals”, and “mandatory training on postural care for prescribing clinicians, particularly for those who are prescribing sitting, standing and lying for these complex individuals”.

“We see mandatory training in moving and handling,” but there is no mandatory training in postural care for those supporting people with PMLD.

Preventing problems for people with PMLD

She would also like to see more work invested in the preventive element of postural care for people with PMLD. This would include healthcare professionals and carers picking up on changes to body shape or their consequences, such as multiple chest infections, pain or difficulty in sitting. “The earlier the intervention the better,” she says. And she would like that work to be trauma-informed “to recognise the demands being placed on parents and carers from the beginning”.

Ultimately, the consequences of not getting postural care right for people with PMLD is premature death, says Ms Clayton. Attitudes need to change, so that there is no longer the sense of inevitability about changes to body shape – that it is “just something that happens”, she believes.

Instead, changes to body shape should be seen as a “secondary complication associated with PMLD”. “That gives us a sense that there is something we can do to avoid that secondary complication,” she says.

To all those supporting people with PMLD, she says: “If you have concerns about a person’s sitting, standing or lying, then you should contact your local disability team and find out who you need to talk to about those concerns, such as a physiotherapist or occupational therapist.

“At a glance, postural care looks like a really simple thing to do. But when you look into it, there are lots of different aspects we need to be mindful of in order to work with people and not ‘do to’ people. And it needs to be a truly person-centred approach, and this only works if you are person centred.” she says.

“It’s never too late” to provide good postural care, says Ms Clayton. “We can always consider whether our actions can make a person more comfortable.

“We might be working with an individual whose body shape is already very complex, but that doesn’t mean that there’s nothing we can do. So long as there is gravity and 24 hours in the day there are opportunities to think about a person’s comfort,” she says.

“Use your energy wisely,” says Ms Wright. “Choose to put the time and energy into making people as comfortable and supported as possible.”

Resources

• Public Health England (2018) Postural care and people with learning disabilities: guidance. 
• Born at the Right Time
• Simple Stuff Works
• Sarah Bruce and David Standley (2020) Standards of Practice for Physiotherapists. Working with adults with a learning disability. Association Of Chartered Physiotherapists For People With Learning Disabilities (ACPPLD). (This document has guidance for the provision of postural care.)
• The Association of Paediatric Chartered Physiotherapists (APCP) (2024) APCP Information – Postural Management. Information for Parents and Carers.
• CanChild: ICF resources.
• Changing Our Lives: Postural Care overview tool for learning disability nurses.
• Mencap: Postural care.

References

1. Public Health England (2018) Postural care and people with learning disabilities: guidance. https://www.gov.uk/government/publications/postural-care-services-making-reasonable-adjustments/postural-care-and-people-with-learning-disabilities