Around 100 000 people in the UK live with multiple sclerosis (MS) (MS Society, 2017). MS is a neurodegenerative condition wherein the immune system attacks and breaks down the protective myelin sheath surrounding the nerve fibres (Goldenberg, 2012). This can result in varying degrees of disability. Nerve signals can become distorted, or neurotransmission may not occur at all. With increased survivorship for long-term conditions, people can live with MS symptoms for many years, and, in some cases, this results in a decreased quality of life (Kesselring, 2005; George and Martin, 2016).
Conventional treatments for MS usually include steroids and disease-modifying therapies (Chong et al, 2006; Minagar, 2013), to decrease the number and/or severity of relapses (Fox and Rhoades, 2012). The use of complementary and alternative therapies for MS is on the rise within the UK and other countries worldwide (Skovgaard et al, 2012). In a survey conducted by the MS Society, it was reported that one in five people who have MS use cannabis as a complementary therapy and as a means of self-management (MS Society, 2017). However, Sativex, a cannabis-based medication for the management of symptoms related to MS, was discontinued in the UK in 2014. The National Institute for Health and Care Excellence (NICE) recommended that doctors not offer this medication, because it is deemed not to be cost-effective. However, research does show it is effective in treating MS symptoms, such as spasticity (Serpell et al, 2013) and neuropathic pain (Russo et al, 2016).
Community nurses are caregivers with a commitment to promote wellbeing among vulnerable persons and to support and empower people, including lay caregivers, to participate in decision-making around their care (Nursing and Midwifery Council (NMC), 2001; Queen's Nursing Institute Scotland (QNIS), 2015). Sadly, there is little evidence to support and inform the practice of nurses working in the community with people living with MS (PwMS) who use cannabis for symptom control.
The present article describes a critical review of the literature related to some issues relevant to the practice of community nurses working with PwMS using cannabis, with the aim of encouraging person-centred care in this group of professionals. Person-centred practice is central to nursing and is underpinned by shared decision-making, being sympathetically present and acknowledgement of personal values (McCormack and McCance, 2017). Care that is safe, effective and person-centred is central to UK government policy and strategy, for example, the Care Quality strategy (2016) (Scottish Government, 2016). Person-centredness is both a way of working and being, whereby nurses help people to maintain or enhance their identity and wellbeing (McCormack and McCance, 2017). Such a practice requires the space for risk-taking and innovation (McCormack and McCance, 2017), and this is more challenging where there is an unclear evidence base to inform decisions.
Cannabis
Cannabis (Cannabis sativa) is a flowering plant that contains around 400 chemicals, over 70 of which are cannabinoids (Atakan, 2012). Two of these cannabinoids have been of interest within the field of medicine: tetrahydrocannabinol (THC) and cannabinol (CBD). THC is a psychoactive substance, which produces the feeling of a ‘high’, while CBD has no psychoactive properties. Cannabis can be consumed in four main ways; smoking, eating, vaping using oils distilled from the plant's compounds and topical creams and lotions (Barrus et al, 2016). Individuals using cannabis for symptom control may choose one or more of these methods of use, and the potency of THC and/or CBD varies depending on the product and person (i.e. their personal preference for the product, ingestion and tolerance). Confusion can arise when discussing cannabis for medical use. ‘Cannabis for medical use’ could mean both legal cannabis-based products and illegal cannabis used to manage symptoms related to a particular condition/illness. The use of medicinal cannabis has been at the centre of public and political debate over recent years, gaining the attention and interest of many researchers, but not without raising controversy, mainly around whether legalisation for medical use should be permitted (Bonn-Miller et al, 2014; Troutt and DiDonato, 2015; Sexton et al, 2016). There is an abundance of published literature exploring the effectiveness of cannabis as a medicine in helping to alleviate some symptoms associated with MS. However, from a scoping search conducted by one author (LD), it appeared that most research undertaken in the UK is quantitative in nature and is thus related to the application of certain methodologies, methods and processes in the conduct of the research (Zajicek et al, 2005; Sexton et al, 2016; Kindred et al, 2017). Undoubtedly, this is useful for providing numeric and evaluative data regarding the effectiveness of cannabinoids, but it does not seem to value to the ‘patient voice’ (Austin and Sutton, 2014). To explore the gap further, a systematic literature search was conducted, through which it became clear that, internationally, qualitative research, such as that investigating the experiences of persons with MS who use cannabis as a means of coping and leading an active life, was minimal (Page and Verhoef, 2006; Bottorff et al, 2013; Banwell et al, 2016). Further, this kind of research was completely absent from UK nursing literature. The rest of this article focuses on the findings from the systematic review.
Literature review
A literature search was conducted in 2018 to identify what is currently known about the experiences of PwMS in the UK who use cannabis to manage their symptoms.
The databases Medline, PsycInfo and CINAHL were searched. Nine publications from four countries were included in the final review and included cross-sectional surveys and qualitative interview methods (see Table 1 appendix). The search terms used were ‘cannabis' OR ‘medical marijuana’ AND ‘experience’ OR ‘perspective’.
The PRISMA model was used to record the key aspects of the search and retrieval (see the adapted PRISMA table in Figure 1).
The significant finding was the absence of UK-based qualitative research that discussed the experiences of PwMS who use cannabis for symptom control. Due to a growing momentum for drug policy reform, cannabis for medical purposes has recently been permitted by the UK Government (2018) for use within certain conditions, and this policy change may influence further research on the topic. However, patients cannot easily gain access to cannabis-based medications through GPs and other health professionals yet, and they may turn to or continue to access cannabis through other sources, making research more challenging. The UK Government (2019) has stated that further research will be undertaken to distinguish what constitutes a medical product, dosing and long term-effects. From the literature included in this review, three themes were identified: (i) perception of efficacy of cannabis among PwMS, (ii) their experience of the associated stigma and (iii) legal concerns among PwMS using cannabis for their condition.
Perception of efficacy of cannabis among PwMS
A range of empirical research (Zajicek et al, 2012; American Academy of Neurology, 2014), anecdotal reports (Hornby and Sharma, 2010) and case studies (G, 2018) regarding the use of cannabis among PwMS has indicated that patients find this drug to be effective in alleviating their MS symptoms, such as sleep and mood disturbances and continence deterioration. The Cannabinoids in Multiple Sclerosis (CAMS) study (Zajicek et al, 2003) was the first randomised placebo-controlled trial in the UK that aimed to evaluate the effectiveness of cannabinoids for treatment of spasticity and other symptoms related to MS. Of 630 participants recruited, the 611 who were followed up to the primary endpoint did not have any treatment effects on the primary outcome (change in overall spasticity score on the Ashworth scale). Although this study did not show statistically significant results, subjective improvements were reported among 61% (n=121) of the cannabis extract group, 60% (n=108) of the group receiving THC and 46% (n=91) of the placebo group. The reasons for these subjective improvements are unclear, and it is interesting that almost half of those in the placebo group perceived a benefit, perhaps illustrating the advantages of participating in a research study (the placebo effect) (Rajagopal, 2006). However, the CAMS findings correspond with the results of other studies examining the usefulness of cannabis as a medication. Troutt and DiDonato (2015) created an online survey and used purposive sampling at government-registered cannabis dispensaries in Arizona, US. The aims of their study were to describe participant characteristics, perceptions and impressions of medical cannabis use and legalisation. Although the sample comprised a population with diverse medical conditions, five people with reported MS and 130 people with reported muscle spasms were included. The findings showed that 100% of the participants with MS reported general relief associated with using cannabis, and 75% stated that they experienced more relief with cannabis than with other medications. In addition, 85.4% of the entire participant population (n=367) reported that they felt ‘somewhat more confident or much more confident’ in knowing that they had purchased a safe and uncontaminated product, indicating that medication safety is a key concern.
The CAMS and Arizona studies (Zajicek et al, 2003; Troutt and DiDonato, 2015) both indicated a high percentage of PwMS who felt they benefitted from cannabis use, although the overall validity of the latter study can be questioned for a number of reasons. For example, inclusion and exclusion criteria were not discussed, which means that anyone who used dispensaries in Arizona and had access to the internet could have been included in the study. This influences the reliability of the results in relation to PwMS. However, another study (Kindred et al, 2017) also produced similar findings. A strength of Kindred et al's (2017) large-scale study is that it explicitly mentioned the websites on which the survey hyperlink was uploaded (MS Society and Michael J Fox Foundation websites), thus ensuring that the researchers knew where recruitment took place, which increased rigour. The survey remained online for 8 months and was viewed 801 times, with 595 participants included in the final dataset. The majority of participants (76%) reported living with Parkinson's disease (PD) and 24%, with MS. Arguably, participants with PD were overrepresented in the study, and its findings may not reflect the experiences of PwMS. Cannabis use was reported in 44% of the participants, with 74% of this group declaring that it was for medical purposes only. Cannabis users had lower scores on the Guy's Neurological Status Scale, specifically in the memory (p=0.30), mood (p=0.002) and fatigue sections (p=0.009). An interesting finding was that PwMS found cannabis more effective in symptom management than people with PD did (p=0.002).
In summary, only one study demonstrated statistically significant findings regarding the influence of cannabis (Kindred et al, 2017), in relation to its effects on memory, mood and fatigue. However, many participants perceived that they were benefitting from the use of this drug, and this was likely to influence their use of it. The studies mentioned above all indicated a need for further research on the efficacy of cannabis as a medicine. While most research has been undertaken in the US and Canada where, in some areas, cannabis is now legalised for medical use, there is a need for more research within the UK to better understand how PwMS experience the effects of this drug, their patterns of use and the challenges they face.
Experience of associated stigma
As there is a blurring of what constitutes a medical cannabis product in the UK (MS Trust 2018), PwMS using cannabis for relief of their symptoms could be subject to potential stigma. Stigma and the associated judgement can have a powerful impact on the way people interact with others and, therefore, may influence whether cannabis use is disclosed to the caregivers (community nurses) (Satterlund et al, 2015). Illicit drug users, for example, reported experiencing a level of discrimination due to the labelling of this as a lifestyle choice (Sleeper and Bochain, 2013). As a result, these individuals have been found to receive poorer quality healthcare (Luoma et al, 2014). Bottorff et al (2013) reported that persons using cannabis for medical purposes experienced stigma. They attributed this to three reasons: cannabis is considered a recreational drug, criminal penalties are associated with its use and cannabis is associated with vulnerability (illness and level of disability). With regard to social stigma, one participant stated:
‘Nobody turns around and says you're a junkie if you have terminal cancer and are on heroin. But it doesn't matter why you're on marijuana, if you're on marijuana ‘you're a pothead and get the hell away from me’. (Bottorff et al, 2013, p. 4)
This quote highlights that people can face judgement from the use of this drug despite its potential benefits. Moreover, Bottorff et al (2013) identified that those who used cannabis would attempt to keep this private from others. One participant said:
‘Keep your mouth shut, grow it, use it, don't tell anybody, don't even tell your family, don't tell your friends, keep it to yourself and save your own life’. (Bottorff et al, 2013, p. 6)
Research conducted by Page and Verhoef (2006) found that participants talked of ‘testing the waters' to gauge how health professionals would react. One participant said:
‘It took me a while just because I wasn't sure of what their reaction would be. So, you just sort of slide little things in here and there’. (Page and Verhoef, 2006, p. 69)
If a negative attitude was anticipated, information regarding use was not divulged. Bottorff et al (2013) provided rich and detailed accounts of conversations from the interviews and included direct quotes from their participants, which increased the trustworthiness and authenticity of their research. Participants were recruited through four British Columbia community-based cannabis dispensaries and an online forum for medicinal cannabis. The study included participants living with conditions other than MS, such as cancer, which means that the findings may not necessarily reflect the experiences of PwMS. Further, two participants with neurological disorders were included without the researchers explicitly stating what their conditions were. Data were collected through semi-structured face-to-face or telephone interviews, as the researchers wished to gain an in-depth account of personal experiences. This may have been beneficial, as it may have a?orded the participants anonymity, whereby they could discuss cannabis use openly. However, telephone interviews can also result in the absence of visual cues and loss of non-verbal data and may compromise rapport between interviewer and interviewee, thereby affecting data interpretation and the dependability of findings (Novick, 2008).
Page and Verhoef (2006) interviewed PwMS in order to describe medical cannabis use from their perspective. Participants (six men and eight women) responded to a survey, which was mailed to a sample of 780 persons who attended an MS clinic in Calgary, Canada. This study reported that data saturation was reached, that is, participants were interviewed until no new information was revealed, and this improves the trustworthiness of the findings (Saunders et al, 2017). The perceived effects were associated with a sense of relaxation and relief of specific symptoms, although some participants described negative side effects, such as fatigue and balance problems. Participants reported keeping their use of cannabis private due to fear of judgement from others, and this resonates with the conclusions of Bottorff et al (2013).
These findings also correspond with those of Banwell et al (2016), who noted that 14.1% of participants stated that their feeling towards a friend would change if they discovered they were using cannabis. Further, 28.6% stated they would feel uncomfortable if people around them were using cannabis. These findings are particularly interesting, as the participants involved in this study all had a clinical diagnosis of MS, despite which their feelings towards a person using cannabis would change. While these studies were conducted in the US and Canada, their findings are likely to be applicable to the UK context, where cannabis for medical purposes has recently been permitted (UK Government, 2019). In summary, it could be suggested that PwMS who use cannabis can potentially experience judgement from others. Bottorff et al (2013) did present strong findings in relation to this, but failed to state explicitly if PwMS were involved in their study and, therefore, the findings may not be applicable to this population. Due to the recent change in law in the UK (UK Government, 2019), further research should be conducted in order to learn more about the possible social stigma that has been shown to surround cannabis use and how people experience and cope with this.
Legal concerns related to cannabis use among PwMS
An MS Society report (2017) highlighted that a large proportion of PwMS use cannabis for symptom control, and that many more are familiar with the potential benefits of cannabis for their condition. However, due to a level of confusion regarding the recent change in legislation in the UK (Torjesen, 2018), alongside the illegality in other countries, some people choose not to use this drug due to fear of prosecution or other legal or social sanctions. Chong et al (2006) explored the extent and patterns of cannabis use in southeast London using a cross-sectional survey method, and they found that 71% of people with MS who had never tried cannabis would be willing to if it was available to them on prescription. These findings agree with those of Page et al (2003), who found that 96% of participants were aware of the potential benefits of cannabis for their symptoms. Of participants who were aware of these benefits but had not tried the drug (n=222), the most significant reason given for not doing so was legal concerns (64%). The study also found that 35% (n=67) of participants had tried cannabis at some point in their life in an attempt to manage their symptoms, and eight people discontinued as a result of legal fears. A questionnaire was used to gather data, with the inclusion of a comments section, which enabled participants to elaborate further on their perceptions. Such triangulation is advantageous to data collection, in that it draws on more than one method to display a more accurate representation of findings (Carter et al, 2014). In both studies (Page et al, 2003; Chong et al, 2006), many participants expressed eagerness for the legalisation of medicinal cannabis so that they could safely control their symptoms and self-manage their condition.
A retrospective study (Martinez-Rodriguez et al, 2008), conducted prior to legislation permitting the medically supervised use of cannabis in Spain, found that 52.6% of participants who did not use cannabis were aware it could help with the management of symptoms. In addition, 14.5% of this group stated that it was because of the drug's illegality that they decided not to use it. This reinforces the fact that, while people are aware of the possible benefits, some are hindered from using due to fear of legal action. Further, 83.4% of those who had never used cannabis stated they would support a future of legalisation. Martinez-Rodriguez et al (2008) also reinforced the potential dangers associated with using cannabis illegally. In the period when cannabis was illegal for medicinal use, participants reported that their source was usually people growing their own supply or a friend or relative. It was found that when people were unable to grow their own controlled supply, for example, due to a worsening in clinical symptoms or when they did not have someone to do this for them, there was a risk that the individual would obtain and consume a non-reliable, uncontrolled product. In summary, legal concerns are a strong deterrent for many PwMS to use cannabis for symptom control worldwide.
Discussion
The literature review presented here found that people who choose to use cannabis for MS as a form of ‘self-help’ face or fear the associated social stigma (Page and Verhoef, 2006; Bottorff et al, 2013), which is similar to the findings of the classic work of Goffman (1963). Goffman (1963) contended that people can experience both internal and external stigma associated with a belief or behaviour, which lies outside the realms of normality, as defined by the majority. This causes an individual to be regarded as a rejected stereotype or undesired within the normal functioning of society (Goffman, 1963). A significant consequence for community nursing here is that people sometimes feel they cannot discuss or disclose cannabis use because of anticipated negative reactions and consequences on the relationship, even though cannabis has clear benefits for some (Zajicek et al, 2003; Troutt and DiDonato, 2015; Kindred et al, 2017). This was also found to be the case in research carried out by a UK All-Party Parliamentary Group (Parliament UK, 2019), but these data were not retrieved in the search conducted for this review, as this was not an academic paper. The findings showed that 37% of people using cannabis for medical reasons did not discuss this with a health professional. Worryingly, 63% who had discussed cannabis use with their GP experienced a reciprocated negative attitude (28%), which, to some extent, is supported by the findings from this review.
Person-centred care requires community nurses to work in partnership with people, engaging in healthful relationships and providing encouragement for active involvement and shared decision-making (QNIS, 2015). Therefore, community nurses require both a sympathetic presence (McCormack and McCance, 2017) and a professional understanding of the risks faced by PwMS who use cannabis for symptom control. In addition, they need to be aware that persons using cannabis illicitly may not immediately disclose that they are doing so when the nurse is undertaking assessments. This review has demonstrated that the community nurse could potentially face clinical dilemmas when working with people who use or are willing to use cannabis as a means of self-management (Farrell et al, 2014), and, therefore, problems may arise when they attempt to offer person-centred care. It has also shown that people strongly believe in the benefits that cannabis provides to alleviate symptoms associated with MS. However, many remain fearful because of the drug's previous legal status, and the debate on what is regarded as a medical product is ongoing (UK Government, 2019). It is vital that community nurses hear these experiences in order to positively influence conversations when working with someone who uses cannabis for symptom relief in MS. This should promote a feeling of openness and honesty, allowing for meaningful conversation about cannabis use.
Community nurses should also be aware of any safety concerns for patients using cannabis, for example, the risks associated with obtaining illegal cannabis from a dealer who would potentially enter the home of the PwMS. Where there is serious risk or actual harm, the need for safeguarding clearly challenges the boundaries to risk taking and confidentiality (NMC, 2015). Where community nurses are aware of cannabis use alongside other medications, this should be, with consent, appropriately recorded in the care record, alongside a risk assessment and any advice on health promotion, consistent with NMC standard 18.3 (NMC, 2015).
The MS Society (2018) has been vocal about decriminalising cannabis for PwMS, and the Royal College of Nursing (RCN) (2018) has also begun to back future legalisation. This is highly relevant to community nurses, since the recent drug policy reform may impact their close working relationship with PwMS.
Community nursing teams need to have discussions about their values and beliefs on this issue and on their responses when encountering the issue in practice, keeping in mind that providing person-centred care encompasses working with the patient's values and beliefs and knowing what matters most to the person receiving care (McCormack and McCance, 2017). Drawing on research to provide evidence about the experiences of PwMS and their use of cannabis can help community nurses to enter into more trusting and open relationships, an essential component of person-centred care.
Conclusion
This literature review identified a clear need for nurses to hear and understand the perceptions and experiences of PwMS using cannabis. It is apparent that people may be unwilling to disclose cannabis use to friends, family and, importantly, to health professionals, including community nurses, due to social and, potentially, legal repercussions and fear of disrupting these relationships. Nurses aspire to provide holistic and compassionate care that is ethically and legally sound. Cannabis use among PwMS may present a challenge to the community nurse's way of working. Pre-understandings, values and beliefs should be brought to the forefront in order for nurses to critically reflect on and challenge non-person-centred care. It is clear there is an untapped potential for further research, but also, importantly, for nurses to work openly with PwMS and value what is important to them.