The absent health professional
The educational needs of nurses, allied health professionals and associate practitioners working with people with osteoarthritis or rheumatoid arthritis
Sarah Ryan, Kate Lillie and Jo Adams 2013
This report arises from an education research grant funded by Arthritis Research UK, 2010–2011. The grant holders were Dr Sarah Ryan, Keele University, and Dr Jo Adams, University of Southampton. We’re very grateful to all those who took part in the research.
You can read the executive summary below or
download the full report (PDF 415 KB). Executive summary
The aim of the study was to identify the educational needs of nurses, allied health professionals (AHPs) and associate practitioners (APs) working with people with osteoarthritis (OA) or rheumatoid arthritis (RA). Four focus groups were conducted with people with OA or RA, nurses, AHPs and APs and the findings from the focus groups informed the development of a national electronic questionnaire that was used to identify educational needs when caring for people with OA or RA.
The main findings from the study were as follows:
(a) Pain was the dominant overriding symptom identified by people with OA or RA yet there was a lack of service provision to help people manage their pain
Pain was described by one participant with OA as “like having radios on at different volumes”. Participants perceived a lack of understanding from rheumatology nurses and AHPs regarding how debilitating the pain could be and the impact that the pain had on an individual, emotional and social level.
People with OA or RA wanted to know how to manage their pain and to have someone to talk to when the pain had a negative effect on their mood. This help and support is not currently being provided.
(b) People with OA or RA wanted access to information to maintain physical, psychological and social function
People with OA or RA wanted access to information tailored to their individual needs to engage in self-management and maximise independence. This requires nurses and AHPs having condition-specific knowledge and effective interpersonal skills.
Rheumatology nurses and AHPs advocated a biopsychosocial approach when planning care.
The importance of patient support groups was identified in the provision of information and the contribution to the health and wellbeing of people with OA or RA
(c) People with OA or RA wanted to access NHS services to maximise their independence but these were not available
People with OA or RA referred to the “absent health professional”. They had limited or no access to physiotherapists (PTs) or occupational therapists (OTs) and in the case of people with OA no access to a nurse. They wanted access to nurses and AHPs to maximise their independence.
People with OA felt there were no experts in OA and no service provision for people with OA. They wanted a specialist, an “osteo-ologist”, who would lead and develop OA services.
Although rheumatology nurses and AHPs were confident that they had the knowledge and skills to manage the impact of OA and provide advice on how to self-manage pain, people with OA were not being offered the opportunity to access this expertise.
Due to the lack of NHS OA services advice and care was sought from the private sector.
(d) Implementing NICE guidelines was a myth rather than a reality
Despite exercise being a core treatment in the NICE (2008) OA guidelines and recommended in the NICE (2009) RA guidelines, people with OA or RA reported a lack of access to nurses and AHPs with regard to obtaining information about what exercises to do and what exercise facilities to use in the community. All participants wanted to be able to access advice to make the process of maintaining their health easier.
Some rheumatology nurses and AHPs did not feel they had the knowledge and skills to advise people with OA or RA on pain medication or on how to exercise.
3. What needs to be done?
We need to campaign for services that are designed to help people with OA or RA manage their pain.
Due to the lack of designated services nurses and AHPs are only likely to encounter people with OA when they consult for another medical reason, e.g. hypertension. We therefore need to educate nurses, AHPs and APs to have the knowledge and skills to provide advice on pain management and exercise whenever they encounter a person with OA.
We need to provide innovative educational materials (e.g. case studies, interactive DVDs) and training on exercise and pain management that can be used within existing and new education programmes for nurses, AHPs and APs.
To increase awareness of the care needs of people with OA a publicity campaign needs to be undertaken, centred around the message of the three “e”s: providing basic advice on
Education, Exercise and Easing pain.
We need to have regional champions who are nurses or AHPs who are sponsored by Arthritis Research UK to increase awareness of OA and RA amongst nurses, AHPs and APs.
Further work needs to be undertaken to assess why people with OA or RA are not able to access rheumatology nurses and AHPs who have the knowledge and skills to care for their needs.