That people with learning disabilities experience health inequalities, reduced access to health screening and health promotion services is supported by a number of reports, such as Death by Indifference (2012) and subsequent government enquiries such as the Confidential Inquiry into the Premature Deaths of People with Learning Disabilities (2013)
Kay Mafuba and Bob Gates, both experienced academics in the field of learning disability nursing carried out a detailed three stage study exploring the role of community learning disability nurses in implementing public health policies for people with learning disabilities to improve health and life expectancy.
They refer to the context and policies that have set out the role of learning disability nurses in implementing public health policy (DoH 2001, 2009) and also highlighted the lack of clarity in how the role is carried out resulting in different practice across the four countries of the UK.
This article was number one of two papers reporting on the findings of the final stage of the three stage study. Stage One looked at how implementing public health policy was articulated within job descriptions and person specifications for Community Learning Disability Nurses. Stage Two sought to identify how community nurses interpreted these roles. Stage Three looked at how Community Nurses enacted their public health roles in post.
The data were collected through the use of an online survey using a broader group of community learning disability nurses than those involved in Stage Two. The sample for this third stage was selected using non-proportional quota sampling. This method ensures that there is a sufficient sample from each sub group, in this case across each of the four pay bands.
Taking a proportional sample, which is when the sample size is a particular proportion of the sub group, was rejected as it would not have provided sufficient representation across the bands. The need to get adequate representation across the four pay bands of community learning disability nurses from the 4 countries (England, Scotland, Wales and N.Ireland) was key as part of the study was to compare the roles across different bands.
The pay band was the common unit of data categorisation across all three stages of the study. However even using this method there were two bands that lacked representation from all four countries, there were no Band 5 nurses included from Scotland and Northern Ireland and no Band 8 nurses from Northern Ireland.
A total of 171 Community Learning Disability nurses took part in the online survey with representation from England, Wales, Scotland and Northern Ireland across Bands 5-8 as below;
- Band 5 (19 participants – representing England and Wales)
- Band 6 (67 participants – representing all four countries)
- Band 7 (59 participants – representing all four countries)
- Band 8 (26 participants – representing England, Scotland and Wales)
The online survey consisted of a 9-item questionnaire. Community Nurses had to indicate their involvement in various public health activities in order to gain information on the extent of their role in public health. The activities were identified as follows:
- Healthcare delivery
- Health education
- Health prevention and protection
- Facilitating access to health
- Health promotion
- Health surveillance
Of the activities identified facilitating access to health and health promotion scored highly across all bands, with 100% of band 6 nurses reporting these as activities they had been involved with as part of their role.
Indeed previous studies cited (Abbott 2007;Bollard 2002; Marshall & Moore 2003) along with this one, have shown that the most common public health role for Community Learning Disability Nurses is facilitating access to services.
However whilst the results support previous studies that indicate community learning disability nurses have taken up the role of facilitator’s in supporting people to access health services, it would also appear that there are far fewer nurses involved in health surveillance, promotion and prevention.
These two activities were least likely to be undertaken by community learning disability nurses with the Band 8 nurses least likely to be involved with 50% or less involved in these public health roles.
It would appear that government health policy over the last decade, such as Valuing People (2001), which emphasises health facilitation and health action planning for people with learning disabilities supported by further guidance such as Health Action Planning and Health Facilitation For People with Learning Disabilities Good Practice Guidance (DoH 2009) has contributed to these areas becoming the main public health roles of Community Learning Disability Nurses.
However there are far fewer nurses involved in health surveillance and protection, particularly within Band 8 nurses, who are those in a position of leadership.
Strengths and limitations
The research supports previous findings on the public health role of learning disability nurses and identifies areas in which there appears to be lower participation in activities addressing health surveillance and health prevention and protection.
The reasons for this are cited as complex, however Gates and Mafuba identify that one possible cause is the lack of role clarity on the part of Band 8 nurses, who are those in a position of leadership.
They call for an in-depth evaluation of the role of Band 8 Community Learning Disability Nurses in promoting public health and meeting the health needs of people with learning disabilities.
The study was published two years ago and the author’s acknowledge this is a snapshot undertaken in an ever changing and complex health system. A larger sample size would be needed for wider validity and as highlighted a couple of bands were unrepresented in one or more countries.
The role of Learning Disability Nurses has been continually evolving with increasing involvement in public health over the last 15 years or so and will continue to do so. Progress has been made in facilitating access to health services for people with learning disabilities.
However it would seem that further work needs to be done on improving health surveillance and prevention, alongside clarity around the role of Band 8 Learning Disability Nurses and their role in promoting public health of people with learning disabilities
There needs to be a clear leadership pathway for learning disabilities nurses, with involvement in commissioning and developing services. Since this research was carried out further reports have been published such as Strengthening the Commitment: One Year On: Progress Report on the UK Modernising Learning Disabilities Nursing Review (DoH 2014). This report contains 17 recommendations including the continuing need to ensure the health needs of people with learning disabilities are addressed through commissioning services that enable learning disability nurses to work collaboratively across services to address barriers including proactive health improvement, prevention, whole family and public health approaches.
Learning Disability Nurses need to be involved in this work along with addressing the variability in the uptake of annual health checks that would serve the purpose of better health surveillance.
The current survey on the uptake and quality of health checks may help in gathering some of this data, along with ideas such as commissioning Learning Disability Nurses to oversee the uptake of Health Checks and linking them to Health Action Plans
Mafuba,K. & Gates,B. (2013) An investigation into the public health roles of community learning disability nurses . British Journal of Learning Disabilities, 43, 1-7 [abstract]
Abbott S. (2007) Leadership across boundaries: a qualitative study of the nurse consultant role in English primary care. J Nurs Manag, 15: 703–10.
Bollard M. (2002) Health promotion and learning disabilities. Nurs Stand, 16: 47–55.
CIPOLD (2013) Confidential Inquiry into Premature Deaths of People with Learning Disabilities CIPOLD: Final Report available at http://www.bris.ac.uk/cipold/
Department of Health (2001) Valuing People: A New Strategy for Learning Disability for the 21st Century London: DH
Department of Health (2009) Health Action Planning and Health Facilitation for people with learning disabilities: good practice guidance London: DH
Department of Health (2014) Strengthening the Commitment: One Year on: Progress Report on the UK Modernising Learning Disabilities Nursing Review London: DH
Marshall D. & Moore G. (2003) Obesity in people with intellectual disabilities: the impact of nurse-led health screenings and health promotion activities. J Adv Nurs, 41: 147–53.
Mencap (2012) Death by Indifference: 74 Deaths and Counting. A progress report 5 Years On. London: Mencap