Improving annual health checks based on the health consultation experiences of people with learning disabilities
Intended for healthcare professionals
Evidence and practice    

Improving annual health checks based on the health consultation experiences of people with learning disabilities

Hazel Margaret Chapman Postgraduate tutor, Faculty of Health, Medicine and Society, University of Chester, Chester, England

Why you should read this article:
  • To recognise the importance of annual health checks in identifying health conditions and reducing health disparities

  • To learn about the experiences of health consultations involving people with learning disabilities, including potential barriers to care

  • To consider how to promote engagement with annual health checks

Annual health checks in primary care improve the detection of health issues in people with learning disabilities. The NHS has set a target for at least 75% of people with learning disabilities aged 14 years or over to receive a health check every year by 2023-2024. However, not all primary care professionals are trained adequately in communicating with people with learning disabilities and the number of learning disability nurses in the NHS continues to decline. This article draws on the findings of a constructivist grounded theory study and other relevant literature to discuss the experiences of people with learning disabilities of interacting with healthcare professionals and what can be learned from these experiences to improve annual health checks.

Learning Disability Practice. doi: 10.7748/ldp.2023.e2224

Peer review

This article has been subject to external double-blind peer review and checked for plagiarism using automated software

@hchapman2

Correspondence

h.chapman@chester.ac.uk

Conflict of interest

None declared

Chapman HM (2023) Improving annual health checks based on the health consultation experiences of people with learning disabilities. Learning Disability Practice. doi: 10.7748/ldp.2023.e2224

Published online: 14 September 2023

A high level of engagement and high-quality person-centred care are essential to ensure people with learning disabilities can access health promotion interventions and screening programmes. For example, their participation in cancer screening programmes may require specific interventions (Duffy et al 2017). In the case of people with learning disabilities who have diabetes mellitus, improving patient outcomes requires health promotion interventions specifically aimed at this population as well as a person-centred approach to screening (Oyetoro et al 2023).

Annual health checks in primary care for people with learning disabilities provide opportunities to deliver health promotion interventions and screen patients for a range of health issues, thereby increasing the chance of early detection and reducing the risk of suboptimal health outcomes (Chapman et al 2018). The NHS (2019) Long Term Plan set a target of at least 75% of people with learning disabilities aged 14 years or over having a health check in primary care every year by 2023-2024.

In a constructivist grounded theory study, the author of this article identified important aspects of the health consultation experiences of adults with learning disabilities (Chapman 2014). This article uses findings from that study and other relevant literature to discuss how healthcare professionals who carry out annual health checks can enhance the quality of these checks and the engagement of people with learning disabilities with healthcare services.

Key points

  • People with learning disabilities have poorer health outcomes overall and a lower life expectancy than the general population

  • Barriers that can prevent people with learning disabilities from accessing annual health checks include difficulty in understanding appointment letters, anxiety about being in a waiting room and fear of doctors and nurses

  • Simple changes – such as using easy-read materials, making follow-up phone calls, being flexible with appointment times and having a separate waiting room – can help overcome some of the barriers to care

  • Learning disability nurses can support non-specialist staff to elicit informed consent from patients, understand their experiences, address their specific health needs, work with their families and provide positive behaviour support

Health outcomes among people with learning disabilities

People with learning disabilities have poorer health outcomes overall than the general population. For example, the incidence of epilepsy, severe mental illness, hypothyroidism, obesity, type 1 and type 2 diabetes, gastroesophageal reflux disease and cardiovascular disease is higher among people with learning disabilities than in the general population (Perera et al 2020).

People with learning disabilities also have a lower life expectancy than the general population. In 2019, 85% of deaths in the UK occurred among people who were aged 65 years or over. However, in 2018-2019, only 38% of people with learning disabilities who died were aged 65 years or over (Learning Disabilities Mortality Review Programme 2021). This means that the likelihood of people with learning disabilities reaching the age of 65 years was less than half that of the general population.

Reasons for these poorer health outcomes and lower life expectancy include issues with diagnosis, treatment, needs assessments and adaptation to changing care needs (Hatton et al 2016) as well as issues with access to screening programmes. In the final report of the Confidential Inquiry into Premature Deaths of People with Learning Disabilities, Heslop et al (2013) noted that, in their cohort of 247 people with learning disabilities who had died in 2010-2012, there had been issues with accessing cancer screening programmes, particularly for bowel cancer. Perera et al (2020) noted that levels of cervical screening are significantly lower among people with learning disabilities.

Annual health checks

Annual health checks for people with learning disabilities aged 18 years and over were introduced in England in 2008 (NHS Employers 2008) with the aim of improving the detection of health conditions and reducing health disparities between people with learning disabilities and the general population (Michael and Richardson 2008). In 2014, annual health checks were introduced for young people with learning disabilities from the age of 14 years onwards, with the aim of establishing a relationship between patients and their GP practice, and aiding the transition to adult services (Giraud-Saunders et al 2015).

Annual health checks, which are sometimes undertaken by practice nurses (MacDonald et al 2018), have been shown to be particularly effective at identifying and meeting new health needs (Cooper et al 2014). They are associated with fewer emergency admissions and longer life expectancy, particularly in people with Down’s syndrome (Kennedy et al 2022). However, Marriott et al (2017) noted that approximately one in seven people with learning disabilities in England were registered with a GP surgery which did not appear to offer annual health checks. They also reported that in 2014-2015 only 52% of people with learning disabilities who were entitled to an annual health check had one.

In 2021-2022, 72% of people with learning disabilities in England had a health check – an increase from 59% in 2017-2018 but a decrease from 75% in 2020-2021 (NHS Digital 2022). It is challenging to establish the overall picture for the UK because of variability in reporting. Furthermore, statistics only include people who are registered with a GP and are on their GP’s learning disability register.

Important aspects of engagement during health consultations

In a constructivist grounded theory study, the author of this article gained insight into the interactions of 25 adults with learning disabilities with healthcare professionals during health consultations, identifying implications for patients’ health, psychological well-being and engagement with healthcare services (Chapman 2014).

Participants in Chapman’s (2014) study were purposively recruited through a GP practice, self-advocacy groups and a health facilitator. The participants were interviewed about their experiences of health consultations. The data were subjected to constant comparative analysis, using the symbolic interactionist perspective of constructivist grounded theory (Charon 2006). Health research ethics approval was obtained for the study. The consent process involved: easy-read participant information sheets; presentations to self-advocacy groups; and support from trusted facilitators, social workers, healthcare professionals or carers followed in the next few days by a witnessed and recorded process of taking informed consent. All data were anonymised, pseudonyms were used and quotations edited to ensure no identifying information would be revealed.

Chapman (2014) identified important aspects relating to the engagement of people with learning disabilities in health consultations, which can be summarised as follows:

  • Accessibility of services and healthcare professionals – the ability of healthcare professionals to communicate respectfully and clearly with people with learning disabilities and their families and carers is essential for their successful engagement with healthcare services. This includes ensuring that the person’s voice is heard and that they understand the role of the different healthcare professionals involved in their care.

  • Barriers to engagement – these barriers include anxiety relating to healthcare professionals and procedures, mistrust of healthcare professionals, and factors experienced as devaluing or stigmatising, such as having epilepsy or a mental health condition.

  • Support from learning disability nurses – learning disability nurses, particularly when acting as health facilitators, can bridge gaps in other healthcare professionals’ knowledge and experience of the care of people with learning disabilities. They can aid communication during health consultations, provide context, promote healthy living and the uptake of health checks and screening, and advise on ethical issues and rights-based care.

The next sections of this article discuss the experiences of people with learning disabilities of interacting with healthcare professionals and what can be learned from these experiences to improve annual health checks, based on research findings from Chapman (2014) and other authors. All findings without citations are from Chapman (2014). Direct participant quotes from Chapman (2014), using the pseudonyms from that study, are used to illustrate some of the points made.

Accessibility and communication barriers

There are several barriers that can prevent people with learning disabilities from accessing annual health checks, including difficulty in understanding appointment letters, anxiety about being in a waiting room, and fear of doctors and nurses (Chapman et al 2018). One participant in Chapman’s (2014) study expressed their fear of doctors as follows:

‘If I speak out at the doctor’s, he won’t be pleased… if I say anything to them… the doctors won’t just want to see me… ever again.’ (Lindsey)

Simple changes – such as using easy-read materials, making follow-up phone calls, being flexible with appointment times and having a separate waiting room – can help overcome some of these barriers. Implementing these changes requires awareness, respect and flexibility on the part of practice administrators and healthcare professionals. It is important to explain the aim of the consultation clearly and the role of the healthcare professional involved, as is establishing trust, discussing any fears and giving the person time to adjust before the start of the consultation.

A step-by-step guide for GPs on health checks for people with learning disabilities (Royal College of General Practitioners 2017), which is being updated, focuses on the detection of significant health issues, on screening and on immunisation. The checks recommended are likely to identify health issues but it may not be possible to address them all during one appointment, partly because it can take time for people with learning disabilities to process information (Mee 2012). Conducting a thorough initial assessment, working with the person and their family and carers to gain a complete picture of their health needs, is likely to require additional time. Separate follow-up appointments may be necessary and can be arranged over the year.

Another potential barrier is the language used. Healthcare professionals tend to base their language on a biomedical model of care and often use medical terms. However, patients tend to explain how their life is affected by health issues using everyday language (Mishler 1984). The resulting miscommunication can be exacerbated by other communication issues, such as cognitive processing difficulties and sensory and/or perceptual impairments (Murphy 2006). This quote from a participant in Chapman’s (2014) study illustrates how challenging it can be for a person with a learning disability to understand healthcare professionals:

‘I couldn’t understand anything [he was] saying, so I went to the nurse after that – at least I can understand what she’s saying to me… Sometimes it’s too quick, isn’t it, what they’re telling you.’ (Grace)

The complexity of communication during consultations arises partly because these usually involve three people: the healthcare professional, the person with a learning disability and a formal or informal carer. Some healthcare professionals only want to speak to the carer, making the patient feel ignored, while others only want to speak to the patient, which can lead them to feel overexposed and cause distrust:

‘The doctor wants to speak to me, but not [my] mum. So, he speaks to me, [my] mum likely said something to him, and he said “Stop there”.’ (Lindsey)

Some healthcare professionals focus on completing all the questions in the assessment tool they are using, to the detriment of developing rapport:

‘Questions, questions, questions… He’d keep going back to them… Lots of questions, backwards and forwards.’ (Daniel)

There is no single communication strategy that can be used to systematically avoid such situations, but it is clear that patients and their families and carers need to feel respected and listened to (Doherty et al 2020).

Another barrier is the complexity of healthcare services and people’s health needs, both of which increase the number of appointments and healthcare professionals involved. People with learning disabilities are likely to be significantly affected by undergoing multiple health encounters. One participant in Chapman’s (2014) study expressed how complicated it can get:

‘The more people, as well, that get involved in things like this, the more complicated it gets. I could have a word with [someone’s name], but once you do that then the people all start knowing, and then what they might do is start wondering whether I live, where I live is right for me. I know it’s right for me, but they wouldn’t. You see, if I told them, oh, I’ve got a bad leg, they’d say, “Well, we need to reassess you then”.’ (Matt)

Healthcare professionals often feel unprepared to provide optimal care for people with learning disabilities (McCormick et al 2021). Stigmatising attitudes towards people with learning disabilities have been identified among healthcare professionals (Pelleboer-Gunnink et al 2017). Understanding the specific health needs of people with learning disabilities is crucial to provide appropriate care and make appropriate referrals. Getting to know each person and understanding how they may react and interact with others is crucial to avoid diagnostic overshadowing. For the person with a learning disability, having a trusting relationship with a particular healthcare professional – such as a doctor, learning disability nurse or practice nurse – is essential. For example, one participant in Chapman’s (2014) study said of his practice nurse:

‘She’s quite okay with me because she’s known me a long time.’ (Jonathan)

Anxieties about procedures, stigma and mistrust

People with learning disabilities may be fearful of certain procedures, for example venepuncture or cervical screening, particularly if they have had negative experiences of them in the past. Strategies that can be used to overcome these fears include carefully explaining procedures, giving the person the opportunity to familiarise themselves with the equipment and environment, and graduated exposure (Kupzyk and Allen 2019). Implementing these strategies may require support from a learning disability nurse or a psychologist.

Another possible fear is that of not being listened to. Some carers are wary of discussing all the person’s health issues for fear of appearing less credible and not being taken seriously. This, in turn, can make the person feel that they are not listened to and that their undiscussed health issues are unimportant, as demonstrated by one participant in Chapman’s (2014) study:

Researcher: ‘Does your mum tell the nurse about the headaches?’

Mark: ‘No… No.’ [pause]

Researcher: ‘Do you want her to?’

Mark: [pause] ‘Yeah.’

Researcher: ‘Yeah? Would you like to tell the nurse?’

Mark: ‘Yeah.’

Some patients may conceal aspects of their life that can affect their health, for example sexual relationships, for fear of disapproval and/or of procedures such as cervical screening. Providing continuity of care, developing a trusting relationship, using active listening, demonstrating empathy and respect and being non-judgemental are all central to optimal communication during consultations. It is important to start by taking the lead from the person themselves, because even if they appear not to be engaging they may be gauging whether or not they will want to do so in the future.

Barriers to engagement in health consultations include factors that patients may perceive as devaluing or stigmatising, for example having epilepsy or a mental health condition. Many people with epilepsy find their diagnosis highly stigmatising and fear being discredited and treated differently if they reveal it (Scambler 2018). Participants in Chapman’s (2014) study often referred to seizures as ‘falls’ because this is less stigmatising and less likely to raise concerns from other people.

People with learning disabilities may sometimes ascribe behavioural changes or health issues to their learning disability (Golding and Rose 2015), leading to ineffective health checks. This can be compounded by carers not sharing health information about the person – for example about seizures, blood glucose levels or pain – which makes assessment and diagnosis more challenging. It is essential that healthcare professionals include carers in the conversation, gain their trust and elicit information from them to avoid missed or delayed diagnoses and consequent lack of treatment, for example for epilepsy or diabetes.

In general, people with learning disabilities have less autonomy in relation to expressing their sexuality and becoming a parent (Rushbrooke et al 2014) and there is often little discussion of sexuality and parenthood. Among healthcare professionals, barriers to effective sexual health care for people with learning disabilities include: a perception of the person as being child-like; concerns about the person’s vulnerability to sexual abuse and exploitation; and fear that discussing sexuality may increase rather than decrease the person’s risk of sexually transmitted infection and/or unwanted pregnancy (Gil-Llario et al 2019).

The way that healthcare professionals approach sex and sexuality during consultations is important. Inadequate knowledge, embarrassment and preconceived views on the expression of sexuality can inhibit supportive communication (Ollivier et al 2019). Talking people through written advice is essential to promote understanding, but Chapman (2014) found that this was lacking in relation to sexual and contraceptive health. One female participant, Lindsey, explained that she could not talk to her father or carers about ‘personal stuff’ and could not tell the doctor either without support (Chapman 2014). People with learning disabilities are often accompanied by a family member or carer so they may lack privacy to disclose certain issues or concerns. They may also need to be seen by a healthcare professional of the same gender as them (Williams et al 2014).

Concerns about people’s vulnerability to sexual abuse and exploitation and a reluctance to discuss sexuality can lead to a lack of understanding and choice for patients, which some consider to be a hidden form of eugenics (Ledger et al 2016). For example, there is a higher percentage of women being fitted with a contraceptive implant among women with learning disabilities than among women in the general population (Ledger et al 2016). Furthermore, women with learning disabilities may not be aware they have a choice about contraception (McCarthy 2009). Another issue is that previous negative experiences of disclosing information about their sexuality to healthcare professionals may inhibit people with learning disabilities from talking openly. Therefore, developing a trusting relationship with the person over time is essential.

Role of learning disability nurses

As early as 2001, the pivotal role of learning disability nurses as health facilitators was emphasised by the Valuing People white paper (Department of Health 2001). In Chapman’s (2014) study, one participant praised the learning disability nurse in facilitating communication between them and their healthcare professionals:

‘It’s really helped. They’ve been around me when I’ve needed it which has been brilliant really. […] The sad thing is I can’t speak to my family about things like that. […] Sometimes there’s a thing the doctor says I don’t quite understand and he could […] mention to the doctor maybe to explain it in a different way to me. […] He mainly just comes with me just to make sure I understand everything really […] the more he’s gone with me and the way the doctor’s explained things to me, it’s helping me learn a bit really and to understand what they’re saying.’ (Edmund)

Learning disability nurses have expert knowledge of the health issues commonly experienced by people with learning disabilities (Roll 2018) and can help to ensure that reasonable adjustments are made to people’s care (MacArthur et al 2015). They can support their non-specialist colleagues to know how to elicit informed consent from patients, understand their experiences, address their specific health needs, work with their families and provide positive behaviour support. They also have an essential role in promoting the rights of people with learning disabilities (Mafuba et al 2023) and therefore safeguard them against inequality and exclusion.

The Royal College of Nursing (2021) noted that the number of learning disability nurses in the NHS continues to decrease, with a 40% decrease between May 2010 and July 2020 in England and a 25% decrease between March 2015 and December 2019 in Scotland. According to the Royal College of Nursing (2021), since healthcare services have a duty to make reasonable adjustments to the care of people with learning disabilities, ignoring the role of learning disability nurses equates to ‘discrimination by proxy’.

A House of Commons (2023) research briefing acknowledged the need for further training, among health and social care staff, in the field of learning disability. With a diminishing number of learning disability nurses, it is crucial to train primary care professionals to care for that patient population and conduct effective annual health checks. However, to improve annual health checks and promote meaningful engagement with these, the author of this article believes that the most important factor is the availability of learning disability nurses who can educate, advise and support healthcare professionals, patients and carers.

Conclusion

There are many barriers to effective annual health checks in primary care for people with learning disabilities. These barriers include healthcare professionals not understanding, listening to or valuing the patient and their carers, as well as patients’ and carers’ access and communication issues, anxieties, mistrust and perceived stigma. Understanding the health and communication needs of people with learning disabilities, working with their carers and making reasonable adjustments to their care are crucial elements of effective annual health checks, as is developing a trusting relationship with patients over time. Further training for primary care professionals and more learning disability nurses are necessary to promote engagement in annual health checks.

References

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