A study investigated uptake of health promotion initiatives among people with learning disabilities; results were varied, revealing that further work is needed to explore factors limiting access
Abstract
People with learning disabilities are at increased risk of experiencing health comorbidities and less likely to access initiatives designed to promote their health, compared with the general population. The first phase of Project 2020, conducted by a community learning disability nursing team, aimed to assess and enhance service users’ and care staff’s engagement in health screening and monitoring. It examined uptake of annual health checks and national screening programmes, utilisation of pre-health check questionnaires, and vaccination rates. Project 2020 is evolving to incorporate health promotion initiatives into routine nursing assessments. This first phase highlights the importance of improving access to health promotion initiatives for people with learning disabilities to reduce health disparities.
Citation: Fitzgerald S et al (2024) Adults with learning disabilities’ use of health promotion initiatives. Nursing Times [online]; 120: 6.
Authors: Susan Fitzgerald is adult safeguarding and nursing lead, Nana-Fatima T Ozeto is research assistant, Jameela Jinnah is service effectiveness adviser, Sunil Rodrigo is senior community learning disability nurse, Paul Shanahan is research lead; all at Your Healthcare Community Interest Company.
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Introduction
Adults with learning disabilities (LD) are at a disproportionately elevated risk of physical comorbidities and preventable deaths (White et al, 2022; Das-Munshi et al, 2021). The leading causes of premature death in people with LD are considered to be failure to detect conditions early, delays in referrals and poor management of conditions following diagnosis (White et al, 2022).
This article discusses a project in which a community LD nursing team provided information and support to improve service users’ and care staff’s engagement in health screening and monitoring.
Literature review
Health promotion initiatives are crucial for reducing common causes of death in people with LD by enabling them to improve and gain control over their health (Glover et al, 2017). In the UK, initiatives include national screening programmes that offer specific testing to those who have an elevated risk of developing conditions such as abdominal aortic aneurysm and bowel, breast and cervical cancers.
However, although screening is advantageous, people with LD are not only less likely to access these programmes, but also need specialist LD community nurses to facilitate implementation (Mafuba and Gates, 2015).
NHS England’s (nd) Core20PLUS5 approach to reducing health inequalities recommends LD-specific health promotion initiatives that:
Improve early identification and intervention;Provide reasonable adjustments to support access to healthcare among people with LD.
In 2008, annual health checks for adults with LD began in England; this involves a primary healthcare practitioner performing a comprehensive health assessment to detect conditions early. A questionnaire can be completed beforehand to help the patient and their carer prepare, thereby improving the appointment’s effectiveness (Marriott et al, 2017).
In the years since these annual health checks were introduced, access to them has improved and 69% of adults with LD attended one in the year up to 29 February 2024 (NHS Digital, 2024).
Kuwabara et al’s (2022) study identified that not attending these checks increased the risk of cancer diagnosis and, more specifically, advanced cancer diagnosis.
In terms of routine examinations, specific recommendations for people with LD only exist for limited checks and groups. Public Health England’s (2020; 2019) guidance was published to make sure that two-yearly eyesight tests and annual dental tests, respectively, were accessible to people with LD.
This aimed to facilitate the early detection of visual and dental problems, as individuals with LD have an elevated risk of such issues (Emerson et al, 2012). The Down’s Syndrome Association (2024) has also published guidance on annual audiology assessments and regular reviews of the feet and skin for adults with Down’s syndrome.
Care staff and health professionals have a shared responsibility to increase access to health promotion initiatives for people with LD. Health and social care professionals may feel a sense of ambiguity about their role in promoting the health of people with LD; this might hinder their ability to address health concerns quickly, affecting the health outcomes of people with LD.
Many LD-specific health promotion initiatives also exist, the uptake levels 0f which are unclear. These include:
Health passports, which support primary and secondary services to understand an individual’s health and communication needs;Urgent care plans, which digitally share service users’ wishes during a healthcare emergency.
Aims
Our specialist, community-based team provides secondary health and mental health care for people with LD. We created Project 2020 as a 10-year plan, running throughout the 2020s, to improve access to health promotion initiatives for service users with LD by overcoming health screening barriers. Providing health checks for people with LD without informing them, or the staff who care for them, of their importance limits their effectiveness (Doherty et al, 2020). Project 2020 aims to empower service users and their care staff to promote positive health outcomes for people with LD.
This article discusses the first phase of the project. This was conducted with residential services as care staff have a responsibility to support service users to access healthcare. The phase aimed to:
Review residents’ current access to national screening programmes and routine health checks (dental, audiology, podiatry, skin and eyesight checks);Make sure residents had access to a GP annual health check, facilitated by the pre-health check questionnaire;Facilitate the use of health passports and urgent care plans;Make sure that condition-specific medical reviews were scheduled.
Method
Between September 2021 and April 2022, 78 service users in residential or supported living facilities in two outer London boroughs were recruited. We chose to initially focus on care homes, rather than GP practices, to empower care staff to deliver health action plans for service users.
One primary LD community nurse coordinated a team of six nurses; this team used existing staffing resources, meaning the research was incorporated into usual day-to-day nursing practice and did not require additional funding to deliver. Each nurse was assigned one care home, in which they aimed to deliver Project 2020 within three months. On average, the programme was delivered within 2.5 months, with a range of 39 days to 110 days.
We developed a questionnaire that asked participants whether they had accessed 21 LD- and non-LD-specific health screening and monitoring programmes. They could answer ‘yes’, ‘no’ or ‘not relevant’ for each one. The 21 health screening and monitoring programmes are outlined in Table 1.
We also developed an information pack with details on the purpose, importance and inclusion criteria of each initiative. Service users and care staff could use the pack to access initiative summaries and embedded web links. One page of the information pack linked to materials the Project 2020 nurse discussed with service users and care staff, including the:
LD nursing referral form;Health passport template;Pre-health check questionnaire;Health action plan template;Poster produced by the Learning Disability Mortality Review (LeDeR) Programme (nd) listing the signs that a person is becoming unwell.
Each of the 29 residential service managers received a letter from the assigned Project 2020 nurse, inviting them to have their screening uptake examined and initiative access tracked. After receiving approval, the nurse visited the service and obtained service user consent. If the nurse deemed the service user to lack capacity, they made a decision in consultation with people in the service user’s care network to ascertain whether participating was in the service user’s best interest. All service managers contacted agreed to participate in Project 2020, and all of the service users who were asked consented.
After receiving consent, the nurse completed the questionnaire with each service user and their care staff. This revealed gaps and informed service users’ action plans. The nurse then talked to service users and care staff about LD-specific health initiatives, screening programmes and routine health checks. The aim was to do the following for each relevant programme:
Facilitate service users’ decision making;Assess their capacity;Follow a best-interest process;Consider reasonable adjustments.
To do this, the nurse used Easy Read materials (including resources produced by Books Beyond Words, Easy Health, Mencap and Public Health England) and individualised service user communication aids (for example, the Picture Exchange Communication System and the Proloquo2Go app).
After the review, each nurse conducted a follow-up meeting with the care home, during which they:
Provided them with a standard/individual action plan containing health scheme information;Signposted service users to specific services.
Results
There was wide variation in participants’ reported uptake of learning disability-specific initiatives (Fig 1). There were also mixed results for uptake of vaccination programmes. Of the eligible participants, 94% (n=73) reported having the influenza vaccine and 99% (n=77) the Covid-19 vaccine. However, only 19% of those eligible (n=6) had received the pneumococcal vaccine, and none of the four service users eligible for the shingles vaccine had had it.
Overall, the reported uptake of national screening programmes was low. The lowest uptake was among participants eligible to access screening for cervical cancer (17%), but screening rates for breast cancer (50%), bowel cancer (57%) and abdominal aortic aneurysm (58%) were also low.
More positively, of the 43 service users who needed condition-specific monitoring, 93% (n=40) reported that this had been completed or was scheduled. Likewise, uptake of routine health checks was generally high (Fig 2).
Discussion
This phase of Project 2020 identified uptake of 21 health promotion schemes in adults with LD. Many LD-specific schemes had high access rates, suggesting care provider awareness and implementation. Uptake of non-LD-specific schemes, such as some vaccination programmes and national screening programmes, was lower.
Annual health checks, health action plans and health passports were well recognised and accessed by service users. Nearly all participants accessed annual health checks; however, nearly a third of service users did not use a pre-health check questionnaire.
Use of these questionnaires can improve condition detection, quality of information provided to GPs and review time; it can also allow greater time for health action planning during annual health checks (Lennox et al, 2010).
Due to low pre-health check questionnaire utilisation, it was unclear whether all participants’ health needs were assessed through their annual health checks. One recommendation from this project is for GPs to routinely include pre-health check questionnaires with the invitations to the checks themselves.
Dental, eyesight, podiatry and skin checks were routinely accessed by those eligible; audiology checks were conducted for fewer service users. People with LD are generally at a higher risk of developing hearing loss than the general population and, without audiology checks, difficulties may be missed by care staff and/or health professionals (McShea, 2013).
Although there are recommendations for conducting routine audiology checks for people with Down’s syndrome (Down’s Syndrome Association, 2024), the lack of guidance for audiology checks for others with LD has been found to lead to several hearing problems being missed (McShea et al, 2022). Given that people with LD are prone to hearing loss that is often missed, there is a need for a specific recommendation for audiology assessments to be routinely conducted. Additionally, objective hearing assessments should be included in annual health checks, and collaborations with specialist audiology services should be facilitated (McShea et al, 2022).
Findings showed that vaccination uptake was varied. Influenza and Covid-19 vaccines had high utilisation, likely due to the priority given to the provision of these vaccines for people with LD during the Covid-19 pandemic (Williamson et al, 2021). Alarmingly, pneumococcal and shingles vaccines were accessed far less, despite respiratory diseases causing 31% of deaths in people with LD (LeDeR Programme, 2017).
This is an issue that has been highlighted by the NHS: its (2019) publication, The NHS Long Term Plan, addressed vaccine inequality for groups including people with LD, and NHS England’s (nd) Core20PLUS5 specifically focuses on “accelerated improvement” of uptake of respiratory vaccines among people with LD.
Our results showed generally low uptake of national screening programmes among people with LD and, of these, the lowest uptake rates we identified were for cervical screening. These findings echo those of Osborn et al’s (2012) study. Cervical screening is invasive and considered by some to be intolerable for women with LD (Byrnes et al, 2020), although we also identified a relatively low uptake of bowel screening, which is not invasive.
There is a need to establish links with local screening coordinators and GP practices to develop strategies that will support uptake of screening programmes among this population. Alternative cervical screening methods should also be considered, such as non-speculum, clinician-taken human papillomavirus testing, as advocated by Landy et al (2022); this may be more tolerable and give women with LD access to an important health screening.
Limitations
In this first phase of Project 2020, the sample size – at 78 – was relatively small; there are ~500 patients accessing the community LD service at any one time and considerably more people with LD living in the boroughs. The sample also only comprised people with LD living in care homes.
Given that family members have less awareness of screening programmes than paid care staff (Parish et al, 2012), our findings may not reflect the experience of people with LD living with family members.
We conducted this phase of the project during the Covid-19 pandemic, which may have influenced some findings – especially those related to vaccinations. After the pandemic, we wonder whether uptake of the influenza and Covid-19 vaccines will remain as high, and whether uptake of the less-accessed vaccines will increase. Research by Curtis et al (2022) suggested there are health disparities in access to vaccination programmes, including lower uptake among people with LD than the general population.
Project 2020 aims to improve health outcomes for people with LD and, in this phase, we set out to do this by increasing awareness and drafting an action plan to direct service users to established, evidence-based programmes. Anecdotally, we know a lot of service users went on to receive assessments, but tracking individual outcomes was beyond the scope of this phase.
Irrespective of these limitations, initiatives such as Project 2020 could play an instrumental role as part of nursing assessments. The project highlights strengths and weaknesses relating to access to health promotion initiatives among people with LD, and recommends appropriate action planning to address the gaps.
Conclusion and future plans
Health promotion helps people with LD improve and gain control of their health. Despite awareness of health promotion initiatives specific to people with LD, these programmes are currently not fully utilised. There is a need to explore which factors limit access to health promotion initiatives among people with LD, as well as a need for improvements in the provision of reasonable adjustments.
People who provide day-to-day support for people with LD need to be more involved in, and informed about, health promotion initiatives. The role of community nursing in empowering people to utilise these initiatives also needs to be further evaluated. Equal access to health promotion initiatives is critical to identify conditions early, improve quality of life, and reduce health inequalities among people with LD.
This first phase of Project 2020 captured data about a small cohort of people with LD living in a specific geographical location. We are now conducting the second phase of the project, in which nurses are incorporating the health promotion initiative into their routine assessments. We are co-developing easy-read materials with people with LD to facilitate their inclusion in these assessments.
In the next phase, we will collaborate with the GP local lead for neurodevelopment at the integrated care board; together, we will focus on system pathways to facilitate screening programmes, target non-responders to annual health checks, and increase utilisation of pre-health check questionnaires.
In addition to continuing to run Project 2020, we intend to revise the information pack into a product that can be shared with other LD services and could be incorporated into routine nursing assessments.
Key points
People with learning disabilities have an increased risk of some health conditionsHealth promotion initiatives are available for people with learning disabilities and the general populationA study measured the reported uptake of health promotion initiatives among people with learning disabilities; the results were varied, but uptake of some initiatives was lowThe provision of reasonable adjustments needs to be improved, and factors limiting access need to be exploredReferences
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