Even as recently as 50 years ago, people with limited intellectual functioning were diagnosed and referred to as the mentally retarded. Unless relatives were willing to care for them, they were consigned to an institution to live out their years away from the rest of society. However, in the UK (and the rest of the developed world) disability/equality campaigners have challenged society, changed legislation and demanded that PWLD (amongst many others) be empowered and not marginalised by society. Of note, the term ‘mental retard’ is now obsolete in both health and social care and has been replaced with learning disabilities (UK) or intellectual disability (USA/international).
The British Psychological Society (2000) note that there are three core criteria for making a diagnosis of learning disabilities:
- Significant impairment of intellectual functioning (generally recognised as IQ<70)
- Significant impairment of adaptive/social functioning
- Age of onset before adulthood
They also note that PWLD are not a homogenous group and that the severity of LD may vary widely. Not all PWLD are known to social care services and many people with mild learning disabilities live ‘normal’ lives in their own homes.
In 1990 the NHS and Community Care Act was passed by the UK Government in order to integrate previously marginalised groups (such as PWLD) into community settings (as opposed to institutions). Supported living with a focus on enablement and capability was advocated and many (though not all) institutions have closed and/or reduced their capacity. Hospitals and institutions should now only be considered for PWLD whose situation was particularly severe/challenging/complex.
Whilst many positive changes have occurred in the UK health and social care system(s) as a result of this Act, the recent Winterbourne Scandal (NHS England, 2015) and Mencap’s report, “Death by Indifference” (Mencap, 2007) highlight that there is still much to be done and improved. In Scotland, the Government issued their vision for Learning Disability (LD) services entitled, “The Keys to Life” (Scottish Government, 2013) and charged all health and social care professionals to improve the quality of life for PWLD.
It is difficult to accurately determine the prevalence of LD because of the diversity of the population to which it refers and the accuracy of the data source. The 2011 Scottish census recorded that 26,300 (0.5%) people in Scotland reported that they had a learning disability: 15,100 males and 11,200 females (National Records for Scotland, 2015). In England, it is estimated that there are 900,000
(1.6%) adults with LD (Emerson et al, 2011). The Royal College of Nursing (2013) state that LD affects ~1.5 million (2.3%) people in the UK. From these data sources we would estimate 0.5-2.3% of the population has learning disabilities.
With the move from institutional to community-based settings, care has also moved from specialist to community based professionals – namely the GP and community/primary care pharmacist. However due to the low prevalence of PWLD in the general population, it is hard for most primary care clinicians to build up levels of expertise in dealing with PWLD. This is compounded by the fact that PWLD are often not easily identifiable to healthcare professionals:
- The diversity of types and severity of learning disabilities means that not all PWLD are immediately visibly identifiable.
- Not all PWLD are able to visit the GP surgery/ community pharmacy.
- Unlike care homes and sheltered housing complexes, the addresses of residential LD units are unremarkable. Care homes are easily identifiable on a patient file/prescription due to their address (e.g. Springfield CARE HOME); sheltered housing complexes are often well known locally (e.g. Springfield Court) but LD units are often just a few flats and use a standard address (e.g. 16 Springfield Road).
- PWLD are not on a particular medication that would identify them as having LD (in contrast to someone with hypothyroidism) so community/primary care pharmacists cannot identify them through prescribed medication.
All these issues mean that community/primary care pharmacists can be unaware that an individual person has LD and not adapt their interaction and service to take into account the particular needs of that person and/or their carer.
After having spoken with many of the team leaders of Aberdeen’s LD residential units through my job, I have also discovered that many residential units had at their inception chosen to continue to organise medication for their residents in a similar way to a care home. This meant that the residents (regardless of capability) had their medication ordered for them and administered to them and so had little involvement with their medication and minimal contact with their dispensing community pharmacist. This assumed responsibility has also stopped PWLD from visiting their community pharmacy and instead they have often relied on their carers to provide their medicines.
PWLD are a group of patients who are known to have increased medical needs. Garvey (2006) highlights that PWLD are 58 times more likely to die before 50 years of age than non-disabled people and are 2.5 times more likely to have a condition requiring medical attention. Many of the causes of LD result in reduced physical and mental health which is often treated with medication. Pharmacists should therefore identify PWLD as a key group to whom extra time attention should be give and, as highlighted in the Pharmaceutical Journal (Jubraj et al, 2016), much has been done to engage professionals (including pharmacists) in improving healthcare for PWLD.
Within the literature, there has been much focus on the role of medication (in particular antipsychotics) for treating mental health/behavioural problems of PWLD, for example: (Saldana et al, 2014; Paton et al, 2011; Pringsheim et al, 2011; Crossley and Withers, 2008; Fretwell and Felce, 2007; Lott et al,2004). There have been some studies in other areas, for example: medication compliance (Epitropakis and Dipietro, 2015); the effect of living arrangements on anti-epileptic drug adherence (Hom et al, 2015); the knowledge PWLD have of their medicines (Arscott, Stenfert Kroese and Dagnan, 2000); quantification of prescriptions for PWLD (Branford, 1994).
However, whilst there is change within many front line services, there was little evidence within the literature on the relationship between PWLD and their medicines and also interventions made by pharmacists to support PWLD. One of the key papers that has influenced my proposed research was a narrative literature review entitled, “Pharmacists’ medicines-related interventions for people with intellectual disability” (O’Dwyer, Mestrovic and Henman, 2015). The authors had been unable to undertake a systematic review because of a lack of literature and noted that, “little is known about their [PWLD] attitudes to medicines, their interaction with pharmacists and their ability to engage in the health care process in primary care.” Their review confirmed my own conclusion that there was little evidence available documenting the challenges that PWLD face, how they overcome these challenges and importantly from my perspective, how can community/primary care pharmacists better support this group of people in relation to their medication. Furthermore, the editor of the journal commented that, “There is an urgent need for the pharmacy profession to develop a research agenda to promote the quality use of medications in vulnerable patient groups” (Bell, 2015). This echoes the sentiment of Hollins (2013) who noted that PWLD, “…need special focus, knowledge and skill to ensure that their healthcare needs are met.”
The many ethical dilemmas of undertaking research with PWLD may be a barrier to researchers. Dalton (2014) and Nind (2008) outline how to ensure research is both ethical and legal and also appropriate for PWLD.
It is my intention to use the conceptual model of patients’ lived experience with medicine as outlined by Mohammed, Moles and Chen (2016) to frame the research questions and analysis.
I believe that my research would benefit the pharmacy profession as we could learn how to better engage and support PWLD living in the community from the perspective of PWLD. This research would begin that process and explore the lived experience with medicines from the perspective of the PWLD living in a residential unit and their carers (formal and unpaid). It would demonstrate the pharmacy profession’s commitment to improving care for a previously (and potentially currently) marginalised group of patients and potentially lead the way for other health care professions to undertake quality research to further improve care for this group of people. In addition, I hope it will provide PWLD with a positive experience of research and give them some confidence in participating in further research for the benefit of their community.
Overall there will be a minimum of 6 and a maximum of 12 ‘cases’
- A minimum of 3 and a maximum of 6 ‘cases’ will focus on PWLD who have the capacity and capability to participate in an interview
- A minimum of 3 and a maximum of 6 ‘cases’ will focus on PWLD who do not have the capacity and capability to participate in an interview but whose family and informal carers are willing to participate with the consent of any legal welfare Guardian.
- All the participants will be resident in a council or charity run community residential unit within the Grampian Health Board area.
Data will be collected by:
- Analysis of documentation
In order to allow for emerging explanatory theory, it is necessary to have multiple (and not just one) cast study. Participants will be selected purposively to provide maximum variation in terms of age and complexity of medication.
All residents of participating Aberdeen Council and charity run units who are on regular medication will initially be considered for inclusion. Residents will then be split into two groups: those with capacity to consent and participate in the study and those without capacity to consent and participate in the study.
- Residents WITH CAPACITY and on regular medication
- Unit team leaders will exclude any resident who they know would not be able to cope with an interview and/or the presence of the researcher in their life for a few weeks
- Unit team leaders will highlight the remaining residents who have family who would be likely to participate (this is not essential but would be desirable)
- Unit team leaders will then highlight the residents most likely to enjoy and derive benefit from the research experience
- These residents will be approached by the researcher and one of their carers to ask if they would like to participate.
- Residents WITHOUT CAPACITY and on regular medication
- Unit team leaders will exclude any residents where participation in research would be inappropriate (e.g. palliative patient, acutely unwell, family issues)
- Unit team leaders will highlight the remaining residents who have family nearby who would be likely to participate (this is not essential but would be desirable)
- The family and/or welfare Guardian will be asked to provide consent and assent.
Overall a minimum of 6 and a maximum of 12 residents will participate. Regardless of capacity, a maximum of 2 residents from any one unit will be asked to participate. To ensure breadth and to maximise diversity, as many care providers as possible will be asked to participate.
A Standard Operating Procedure (SOP) for recruitment will be developed and adhered to and all exclusions (the numbers of, and the reasons for) will be recorded.
Full study information will be provided to the participants, their carers, family and any welfare Guardian in an appropriate written and verbal format. Written consent will be obtained from all carers, family and welfare Guardians. Where possible, written consent will be obtained from any participant with capacity and witnessed by a carer. If literacy is an issue for the participant with capacity, verbal consent will be obtained and recorded digitally and witnessed by a carer. Without all the required consent, fieldwork will not commence.
Formal carers are required to keep records of medication administration and support provided/ issues encountered. These records are kept in their units and can be valuable sources of information. The researcher would look through these records to ascertain if any medication issues were encountered. This data will be extracted (by copying the text) and used as another source of information within the case study.
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