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People with a learning disability and frailty have specific care needs and identifying them is crucial to ensure holistic, person-centred care
Identifying frailty in people with a learning disability is a subject fraught with sensitivities. History as recent as the start of the COVID-19 pandemic in 2020 demonstrates that, and might make some people reluctant to talk about the topic altogether. But people with a learning disability can also have frailty, and the issue should not be ignored, says James Ridley, nurse consultant at Greater Manchester Mental Health NHS Foundation Trust.
Nursing Older People. 36, 5, 6-7. doi: 10.7748/nop.36.5.6.s2
Published: 30 September 2024
He says that helping people with learning disabilities to age well is a growing issue as life expectancy increases.
‘If you look at public health models around ageing, it’s about moving into later life in a healthy way,’ says Mr Ridley, who is a learning disability nurse. ‘But people with a learning disability may move into later life with some level of health need that the general population may not, so we need to make sure we are able to adjust our vision around that in a way that enables us to think about what that person might need.’
At the start of the COVID-19 pandemic in 2020, guidance from the National Institute for Health and Care Excellence (NICE) suggesting that the Clinical Frailty Scale (CFS) could be used to help decide who should receive intensive care caused an outcry. The learning disability charity Mencap and others pointed out that the CFS, which has a strong focus on a person’s support needs, would automatically mean that many people with a learning disability would score highly and therefore be denied treatment.
Although NICE quickly revised its guidance to say the CFS should not be used in people aged under 65 and in some other groups, including people with a learning disability, Mencap warned that the damage was already done. Some GPs wrote to patients with a learning disability suggesting they consider whether they would want to go to hospital or be resuscitated if they contracted COVID-19.
There is a growing body of evidence that some learning disabilities are associated with physical and cognitive conditions, and that these may occur at an earlier age than in the general population. For example, people with Down’s syndrome are at a higher risk of developing dementia at an earlier age.
‘If you look at age-related health changes, people with a learning disability tend to have more experience of things like cardiac health needs, respiratory health needs and cancer. We know that people with learning disabilities potentially have a higher prevalence of dementia,’ says Mr Ridley.
He also points out that there is little understanding of the impact of ageing in some genetic disorders, such as Down’s syndrome, where life expectancy has been historically low. ‘Individuals may not have lived to their fifties or sixties previously, so how do we know what ageing looks like in these population groups related to their genetic predisposition and their genetic conditions? We’re probably finding out as we go.’
James Rushton, assistant director of nursing (urgent care) emergency assessment and access at Manchester Royal Infirmary, previously worked as a consultant nurse specialising in frailty. He says it is important not to have preconceptions about whether a person with a learning disability may or may not be living with frailty.
‘All assessments and treatments need to be personalised to the individual,’ he says. ‘Making assumptions without performing a holistic assessment can lead to a poor care experience and potential harm.’
‘It would do an individual a disservice to assume that everyone presenting with a learning disability should be assessed in the way you would an older adult with frailty’
James Rushton, assistant director of nursing (urgent care) emergency assessment and access, Manchester Royal Infirmary
There are some commonalities between frailty and learning disabilities, he says, but the two should not be conflated.
‘Frailty is an indicator that a person has a vulnerability, and it’s not unreasonable to say that a person who presents to hospital and has a learning disability also has a potential vulnerability,’ says Mr Rushton. ‘But at the same time, it would do an individual a disservice just to assume that everyone presenting with a learning disability should be assessed in the way you would an older adult with frailty because their needs might be quite different.’
Someone with a learning disability may have co-existing multimorbidities, so the traditional single-organ approach to healthcare is not going to work
Picture credit: iStock
Clinical teams caring for older people who might be living with frailty are particularly good at taking a holistic approach to assessment and decision-making, with the person at the centre, Mr Rushton says. ‘The holistic and multidisciplinary approach to care traditionally provided by a frailty service can be useful in some ways for a person living with a learning disability.
‘For example, someone living with a learning disability may have co-existing multimorbidities, so the traditional single-organ approach isn’t going to work, because there might also be multiple complicated physical issues, and possible social issues as well.’
There have been some attempts to improve assessment. For example, the learning disability team at Hertfordshire County Council and the University of Hertfordshire developed the Frailty + Learning Disability Risk Assessment tool for assessing frailty in people with a learning disability.
The tool was evaluated positively last year, suggesting it could be successfully used in practice, raising awareness and identifying people using services who may need more focused evaluation and support.
Mencap health policy specialist Sarah Coleman says more guidance is needed on assessment, and that the general Clinical Frailty Scale (CFS) should not be used for people with a learning disability because it is focused on how much help they need in their day-to-day life.
‘I’m sitting here as a “healthy” 41 year old, but I’m a wheelchair-user and I score very highly on that frailty scale because I need a lot of support with a lot of things in my daily life,’ she says. ‘Does this mean I shouldn’t have access to treatment?’
Outside the context of the pandemic there already were, and are, issues in the health system with people who have learning disabilities having unequal access to treatment, adds Ms Coleman.
‘Unfortunately, we’ve seen cases where people with a learning disability have missed out on treatment or almost missed out on treatment because health professionals are worried it will cause too much distress to treat them, without necessarily thinking about how to reduce that distress or how to adjust the care for that person first.
‘We want to feel confident that the lives of people with a learning disability are valued and that the time is spent assessing those extra needs.’
When making decisions about treatment, health professionals who are unsure about how to support someone to manage a treatment should seek advice from learning disability nurses about what reasonable adjustments can be made, says Ms Coleman. ‘Can we change the setting where it takes place? Or alter the equipment? It’s not always possible, but it should be considered.’
Assessing frailty is important as part of good person-centred, advance care planning, adds Ms Coleman. She would like to see people with learning disabilities assessed in a holistic way throughout their lives, looking at their support needs and how these might change as they age. She would also like to see better and more consistent use of annual health checks and health action plans, and more focus on advance care planning.
Decision-making should always be personal to the individual, she adds. ‘It should be informed by what good practice looks like, and must always include consideration of the support that might be available and the reasonable adjustments that might be made, for example, to help support someone to tolerate treatment.’
Exploring whether a diagnosis of severe frailty prompts advance care planning and end of life care conversations rcni.com/severe-frailty-planning
