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

2. Introduction

2.1 Background

In 2017 a Petition was submitted "calling on the Scottish Parliament to urge the Scottish Government to take action to appropriately recognise and effectively support individuals affected and harmed by prescribed drug dependence and withdrawal".

In January 2018, the UK Public Health Minister, commissioned Public Health England (PHE) "to undertake a review of the scale and distribution of dependence, and the short term discontinuation or longer term withdrawal symptoms associated with prescribed medicines, and the optimal means of reducing it". The Scottish Government had regular engagement with PHE during the scoping phase, asking them to extend the specifics of the review to Scotland. However, in May 2018 PHE gave notice that whilst Scotland would be afforded observer status in the expert reference group, and have access to findings and learning, the scope of the review would not be extended to report separately on Scotland.

In September 2019, PHE presented its evidence review of "Dependence and withdrawal associated with some prescribed medicines". The review made five key recommendations. During this period, analysis of the Scottish data was undertaken to provide comparisons and to inform the recommendations. At the end of 2019, Scottish Government set up a Short Life Working Group (SLWG) to consider the PHE recommendations in a Scottish context (See Appendix 1). A Patient Group was established to sit alongside the SLWG with Patient Representatives sitting on the SLWG itself.

The SLWG work covered adults (aged 18 and over) and 5 classes of medicines:

• Benzodiazepines (mostly prescribed for anxiety and/or insomnia)
• Z-drugs (sleeping tablets with effects similar to benzodiazepines)
• Gabapentin and pregabalin (together called gabapentinoids and used to treat epilepsy, neuropathic pain and, in the case of pregabalin, anxiety disorders)
• Opioids for chronic non-cancer pain
• Antidepressants (for depression, anxiety disorders and neuropathic pain.

During 2020, the SLWG and Patient Group met six times, due to the COVID pandemic, most of these meetings took place virtually either by telephone or video conference.

Draft recommendations were provided to the then Cabinet Secretary for Health and Sport who approved their publication by way of public consultation. The consultation paper discussed each of the PHE recommendations in turn, described the current landscape in Scotland, work that had been undertaken during the life of the SLWG and recommendations for further work agreed by the group and patient representatives.

The recommendations from the SLWG to address prescription drug dependence and withdrawal in Scotland were set out in the consultation document with the aim to gather views from a much wider group of people. The analysis of the results of this consultation form the basis of this report.

2.2 Analysis

A quantitative analysis was conducted on two of the questions within the consultation. These questions asked:

1. Whether the individual agreed with the specific recommendation, and

2. The degree to which they agreed with the recommendation.

These were closed questions, with the first question having a limited number of possible responses, and question two utilising a Likert scale from 1-5 to indicate agreement.

Respondents were also provided with a free comment box within which they could express any particular comments they may have in regards to the recommendation or any other topic of interest or concern. A qualitative analysis of the responses to these open ended comments looked for themes, insights and opinions on the respondents views of the consultation recommendations. This method was chosen to gather feedback from individual respondents in regards to any comments they have on the individual recommendations put forward within the consultation document or the broader topic area and environment. Alongside the online consultation two online group discussions took place. Although the format of the questions were different between the online consultation and the group discussions, both revolved around the draft recommendations. The group discussions were distilled into three 'breakout' groups discussing: 1. 'Guidance for medical professionals'; 2. 'Advice and support for patients' and; 3. 'Data and research'. A summary of the responses to the two consultation events can be seen in Appendix 2. The responses from the discussion groups were generally similar to the themes and topics identified in the online consultation. These themes/topics have been incorporated into the analysis of the general themes.

It is important to note that:

• Some responses were from organisations or membership bodies and collated the views of a number of people or organisations (A full list can be seen in Appendix 3).
• The questionnaire asked for comment without specifying exactly what to comment on, as such there were a varying array of topics discussed.
• Since respondents were also asked about their level of agreement with the recommendation in the previous questions, this could influence whether they discussed those aspects within the comment section as they may consider the topic to have already been covered.
• Similarly because a topic wasn't discussed by an individual does not mean that it was not important to them, merely that they did not include it with that particular response. As such omission does not indicate disinterest or disagreement.
• Responses are not fact but reflect views and opinions.
• Responses are not necessarily representative of public opinion.

This report presents a qualitative summary of the analysis. It focuses on what people said regarding:

a) Topics relevant to individual recommendations.

b) Topics relating to the broader topic of prescription dependence and withdrawal. and

c) Topics relating to the consultation itself.

The analysis identified topics, themes and categories that were mentioned frequently. Within these broad groupings, different responses often focused on different aspects or areas of interest. Topics/themes that came up less frequently may also be included in this report if they raised important issues and/or provided valuable insights.

It is important to note that in many cases, the themes and topics presented in this report are interconnected and have a direct impact on each other, or form part of one another (e.g. development of new guidance and implementation of guidance/practice). They should not be regarded as individual or isolated topics.

The analysis in this report therefore represents a range of topics which stakeholders responding to the questionnaire felt were relevant to the recommendations within the consultation or the topic area more broadly.

2.2.1 How the responses were analysed

The topics, themes and categories that are identified in this report are those that arose naturally from analysis of the individual responses to the questionnaire. Identifying themes/categories are an attempt to reflect to the reader the broad features of the responses from the stakeholders as a group. The analysis of the questionnaire did not involve assessing the validity of the statements made in respondents' answers to the questions. Instead, this report seeks to reflect the stakeholder's views and opinions as they were presented within their responses.

2.2.2 How the analysis is presented in this report

For each recommendation we will present the proportion of agreement shared by the respondents, how respondents scored their level of agreement of the recommendation, and finally a thematic analysis of the main themes that emerged from the open ended request for comments relating to each question.

Responses to the first two questions were analysed and described quantitatively in order to provide an illustration of the views of the respondents with regards to the specific recommendations. These questions looked to ascertain whether individuals agreed with the particular recommendations, and the level of the agreement/disagreement. For simplicity, responses to the second question were grouped; with "extremely effective", "very effective" and "effective" being condensed into a single "effective" category, "somewhat effective", "not effective" and "not answered" remained ungrouped (for a more detailed breakdown of responses please see Appendix 4). These descriptive statistics should be interpreted cautiously, as the sample size was small, and the group may not be representative of the general population. As such the questions are best interpreted as a reflection of the responses of the individual respondents rather than an indication of a more generalised level of agreement/disagreement amongst the Scottish population.

Overall, responses to the open ended comment sections were varied and expansive. There was little clear consensus across the responses on the topics or themes. However, it is likely that this is due – at least in part – to the purposefully open-ended request for comment within the questionnaire. The opportunity to provide comments was intended to gather the breadth and depth of people's views and ideas. The questionnaire avoided providing people with pre-determined options to choose from, that could artificially 'restrict' or 'limit' the topics covered in the responses to this section..

Due to the range of themes covered in the responses - reporting by frequency was not deemed appropriate for the analysis of the free text comment sections. ('Reporting by frequency' would be to analyse each theme by the number of people/responses that mentioned it. For example, "45% of responses referenced further research into patient experience"). Instead, the report seeks to draw out general themes or categories within the individual responses where possible. It then seeks within those themes/categories to indicate the broad nature of the information provided across all of the responses.