Short Life Working Group on Prescription Medicine Dependence and Withdrawal: consultation analysis

3. General overview of emergent themes within the report

There were certain themes that emerged across responses. These were topics or views that had a continuous thread throughout the various recommendation comments, even if within individual recommendation sections there were too few references to identify an emergent theme. The analysis of the individual recommendations from which these general themes were drawn can be found in Appendix 5.

3.1 Data/research:

Many respondents throughout the consultation discussed or referenced data collection and usage of prescribing data, as well as drug dependence and withdrawal. The general trend amongst the comments was an agreement in regards to the need for greater data collection and research in the topic, with many respondents suggesting particular benefits of the proposed recommendations, as well as suggesting further topics of investigation (these are listed in the 'specific recommendations' section of each recommendation subheading in Appendix 5).

Broadly, respondents discussed:

• The need for greater data collection and utilisation, with a few respondents suggesting a more expansive monitoring scheme to evaluate levels of data and research utilisation across the system.
• That data should be regularly collected, easily accessible, meaningful, timely, robust, linked across the system, and influencing guidance and practice.
• That there are particular areas of interest that some respondents felt were particularly under researched, such as the patient experience, non-pharmaceutical alternatives to certain prescription medications, particular populations of interest such as those from disadvantaged backgrounds, or those with chronic pain etc.
• That resources within the system could be better utilised for data collection or monitoring of specialist services such as substance abuse services, chronic pain services, mental health services, as well as community pharmacies. This could also be seen as another means of improving data linkage, and multi-disciplinary working.

3.2 Knowledge mobilisation:

Throughout the consultation many respondents made reference to the need to ensure that both new and existing data and research were incorporated into current practice and guidance.

Several respondents noted that although further research as put forward by the recommendations is laudable and desirable, that new research in of itself would not necessarily lead to improvements, as existing work that could already be beneficially utilised was not being applied currently. A few respondents went further and even suggested that the new research wasn't necessary, as "enough" was already known to enact the positive changes they wished to see, however this information was not translating into changes in practice and/or guidance.

Several respondents made recommendations on how to change this dynamic in order to improve knowledge utilisation and mobilisation, focused on practitioner education and work culture as the bottle neck within the process and the potential mechanism of change. Comments typically referenced a perceived unwillingness to adopt new practices due to resistance to change within practitioners/disciplines, or an inability to adopt to new practices due to external constraints e.g. time/resourcing issues, workload, issues with access to data, perceived value of the data (e.g. regularly updated, relevant, responsive) etc.

3.3 Need for change in work culture/Doctor-Patient relationship

Several respondents referenced a need for a change in work culture. These comments often referred to the need for greater knowledge mobilisation to tackle issues with a perceived lack of implementation of existing data/guidance (as discussed above), as well as a need for a change in the nature of the relationship between prescriber and patient, and a general improvement in communication across the healthcare sector.

A few respondents described the need for greater communication and collaboration between parties involved, this included both prescriber to patient, as well as multi-disciplinary and multi-agency communication. A few respondents also commented on a perceived need for prescribers to "accept" the potential for dependency of certain medications, in order to adequately inform patients of the consequences of their prescribed medications, as well as better support them to tackle the symptoms and process of withdrawal.

Other responses focused on what were perceived as limitations of the current consultation model. A few respondents commented on their scepticism of seeing changes in practice, given the limited time they are allocated to interact with practitioners, and discuss their issues and overall health journey. Respondents pointed to the need for time to discuss information in order for practitioners to accurately assess the patients situation, as well as the time necessary for patients to be given sufficient opportunity to ask questions and make informed choices. These two features were said to require more time than is currently allowed for in the appointment system (less than 10 minute time limits were specifically referenced). Similarly, when discussing telehealth support services, a few respondents expressed concerns that these measures were seen as a means of compensating or potentially replacing these practitioner/patient interactions. These respondents reiterated their belief that interpersonal communication should be the paramount means of accessing information, with telehealth services providing ancillary support.

3.4 Community pharmacy

A few respondents expressed their belief that community pharmacies and community pharmacists should be more actively involved in the health care journey of those experiencing prescription medicine dependence and withdrawal.

These respondents commented on the need for greater data linkage with community pharmacies in order for a greater degree of support to be made available. For instance, one respondent noted that community pharmacies do not have access to a patient's medicine indication or treatment plan, which limited their ability to support patients with "relevant medicine discussions". Similarly another suggestion was to notify community pharmacists when a patient begins deprescribing in order to enable them to support the patient, this was noted to be potentially helpful during times when their prescriber may not be available.

The "new medication service" (NMS) in England was referenced as a potential model to emulate, the respondent described the system as allowing community pharmacies to provide information and support around that new medication provided such as antidepressants.

3.5 Patient experience and patient empowerment

The topic of patient experience was referenced by several respondents. These comments focused on the need to centre the patient experience in both data collection and research focus. In addition, the need to consult and include patients alongside medical experts in working groups and decision making bodies was also mentioned.

The topic of patient empowerment was also touched upon throughout the consultation comments, with several respondents discussing the need for patients to be able to make informed decisions through a greater access to relevant information (particularly around the issue of withdrawal), as well as a more collaborative approach to the planning and decision making process of their individual health journey.

The topic of patient empowerment also arose in the two online discussion groups that took place alongside the online consultation. Although many of the comments were similar to those referenced above, a few respondents discussed the benefit and need for greater patient advocacy within standard practice. This topic did not have the same emphasis within the online consultation as in the group discussion.

3.6 Suitable language for information

Many respondents commented on the need to consider the accessibility of the guidance/data/information that the recommendations would make available. Accessibility in this context often referred to the ability of patients to have the means (either the physical IT resources, or the technical capacity to use said resources) to navigate to the required digital information and to ensure that alternatives were available in order to compensate for any potential disadvantages people may have in accessing this information. The two main groups that were highlighted as requiring particular focus in this regard, were the elderly and those from deprived areas. Respondents highlighted the respective challenges these groups may face, and suggested potential means of compensation for the difficulties e.g. paper based information, interpersonal support etc.

A few respondents made a different, more nuanced comment in regards to the accessibility of the information, which discussed the potential blind spots in regards to messaging around prescription dependence and withdrawal. For instance one respondent commented that many individuals who were dependent on prescription medication, may not look for the information within the "drugs" section of the guidance as they would not consider themselves to be taking "drugs" but rather "medicine". Similarly there was another comment that highlighted that individuals may not seek help from "addiction" services, as they may not consider themselves 'addicts', due to a lack of use of "street drugs". This raises not only a discussion in regards to the correct messaging to patients in order to facilitate their ability to find and utilise this information (perceived 'health' issue vs 'addiction' issue), but also how discussion around street and prescription drugs are conducted within medical and governance settings more broadly, and how those decisions may influence the way in which information is conveyed to potential consumers of that information due to a difference in how the respective groups interpret what is being discussed e.g. 'drugs' vs 'medicine'.

Within the online discussion groups, the topic of public health messaging was mentioned by some respondents. Respondents discussed the benefits of public health messaging with regards to medication and their effects. A few respondents indicated that they believed that public health messaging was helping to better inform patients with regards to potential risks, and facilitating conversations around treatment.

3.7 Suitable resourcing

Many respondents commented on the issue of resourcing through the consultation. This typically revolved around discussion of the need for greater resources to be made available in order for the recommendations to be successfully implemented. This additional resourcing included suggestions of additional staffing, additional opening hours for current services, the incorporation of additional services (e.g. community pharmacies), additional funding for research, additional support services for patients (e.g. mental health services), additional resourcing in order to increase data linkage, and additional training for clinicians and staff.

3.8 Positives in regards to the recommendations or the consultation

Several respondents commented on the recommendations positively throughout the consultation. Although the specific praise levied towards each recommendation differed depending on the focus of the recommendation (i.e. data, guidance, research etc.), in each recommendation there were several respondents expressing a belief that the actions of the recommendations would lead to desired benefits. A few respondents did however add caveats in regards to perceived potential obstacles that would need to be overcome for the benefits to materialise, most of which have been discussed throughout this analysis (need for additional resources, additional time to parse data etc.).

The points of improvement that could be borne out of the recommendations included (but were not limited to):

• Improved data quality in regards to patient safety and prescribing
• Improved integration across the health care sector
• Support for involvement of patients with lived experience in the development of resources and use of digital solutions.
• Support for facilitating greater shared decision making between patients and practitioners.
• Support for investigation into under researched or underutilised areas of research.
• Support for greater access to information for patients in order to facilitate informed choice.

3.9 Concerns regarding the individual recommendations or the consultation

Some respondents throughout their comments to the various recommendations expressed dissatisfaction with the recommendations or indeed with the consultation as a whole.

The points of contention varied amongst the respondents. The most common critique amongst those who expressed scepticism in regards to the recommendations, focused on a perceived lack of efficacy and/or effectiveness of the recommendations, most often attributed to an issue with implementation born out of an inability and/or unwillingness of medical practitioners to adopt what the respondents felt were 'correct' practices, as well as a general lack of shared decision making. In effect, a concern that the recommendations would not be adopted by those needed to make the changes and respondents expressed a belief that the recommendations would not translate to material change unless these issues were rectified.

A few respondents expressed displeasure with the focus of the consultation as a whole, commenting that the consultation and the work of the SLWG had diverged from its intended remit and the focus set out by the original petition. The respondents that referenced this topic commented on a perceived lack of focus on adequate support and non-pharmaceutical alternatives to treatment.

A few respondents expressed issues with the consultation as an evidence gathering instrument. Respondents who commented on this topic, criticised a lack of clarity within certain recommendations, and a need for clearer definitions in order to adequately describe the actions that the recommendations would entail. Despite an open text option being available throughout the questionnaire, these respondents commented that they were unable to provide their opinion or evaluation on particular aspects of the recommendations as they lacked specificity, and so did not allow them to give an informed opinion in regards to what was being discussed and the consequences of the varying interpretations of the recommendations.