Title: Improving the quality and experience of care for patients prescribed medicines with a risk of dependence or withdrawal
Funder: Department of Health and Social Care

Abstract: Background A recent review by Public Health England found that 11.5 million people, equivalent to 26% of the adult population, were prescribed medications with a risk of dependence or withdrawal in 2017/2018. During the initial conceptualisation of this study, we established an advisory group of patients who have experienced medication dependence to identify and prioritise areas for research. Most had experienced unsatisfactory patient care during medically managed withdrawal and felt that patient experience of care should be a research priority. Public Health England acknowledges that patients prescribed these medications do not always receive appropriate care and has called for further research. Aims and objectives This 18 month study aims to improve the quality and experience of care for patients prescribed benzodiazepines, Z-drugs, antidepressants, opioids and gabapentinoids. The study will bring together patients and healthcare staff from Norwich Clinical Commissioning Group to i) develop understanding of current patient and staff experience, ii) identify strategies and priorities to improve the experience and quality of care, iii) design and implement change to improve the quality and experience of care. Methods The study will use Experienced Based Co-Design, a form of participatory action research that has been designed for and within the NHS to improve treatment and care. We will work with three GP practices to recruit and interview 20 patients and 15 health professionals. Patient interviews will focus on key phases of the patient journey and will be video-recorded. Staff interviews will explore what is and isn t working well from their perspective and will be audio-recorded. All interviews will be analysed for key themes. Patient interviews will be used to create a 30-minute trigger film which highlights the key emotional moments throughout the patient journey. Using the findings and the patient film we will hold feedback events for staff and patients to identify key areas for improvement. A co-design team of both staff and patients will then be established to design and implement solutions. Anticipated impact and dissemination We anticipate that this study will contribute to improved patient experience and a reduction in harm associated with medication dependence, withdrawal and the adverse effects of long-term use. The key audiences for this research are healthcare professionals, patients and policy makers. Outputs will include a list of 10 things that patients say would improve their experience , an edited film from patients interviews, quick guides for healthcare workers and patients, interactive webinars for professionals and patients, policy briefings, presentations at meetings, conferences and practitioner events and academic papers. The findings will be disseminated to GP practices and patients in Norfolk and Suffolk through research briefings distributed via email, Twitter and the public facing website. We will give presentations at GP forums. The findings will also be shared with more than 3,000 Substance Misuse Management in General Practice members comprising doctors, pharmacists, nurses, keyworkers and patient advocates via the organisation's newsletter and website.

Lay abstract: Most of us take a variety of medicines during our life and experience the benefits of relief from pain, or from depression or other health problems. When we are better, we normally reduce or stop taking the drugs. With some medicines, however, it is not so easy, and many people experience distressing withdrawal symptoms or long term dependence. These medicines include antidepressants, drugs to prevent pain or seizures (called opioids and gabapentinoids), tranquillisers (benzodiazepines), and drugs to treat sleep problems. This is a significant problem. Figures show that, in 2019, a quarter of the adult population of England &ndash; 11.5 million people -- were prescribed medicines known to cause withdrawal symptoms or dependence. The longer you take the medicines, the more difficult it is to stop, and the figures show that 1.9m people were taking these medicines for a year or more. Withdrawal is not easy &ndash; for example, more than half those coming off antidepressants experience withdrawal symptoms and almost half describe the symptoms as severe. Some people report being withdrawn from medication against their will, without consultation, or too quickly. Continuing to take these drugs causes further health problems. Health professionals understand the need to help people to stop taking these medicines, but there is little research to guide them. This lack of research was highlighted in a recent review of the evidence by Public Health England, with the Department of Health calling for more research into prescription medication use and dependence. In particular, we know very little about how patients experience the process of stopping these medicines. This proposal was developed in collaboration with ten patients with experience of medication dependence and our approach is to work alongside patients throughout the study. We will base the work in three GP practices; we will interview 20 patients who have experienced medication withdrawal and 15 health professionals. Using the findings, we will hold feedback events to identify what needs to be improved and then set up teams of patients and staff to put these improvements in place. After two months, we will meet the improvement teams again to explore what has worked well and what still needs to be done. At the end of the study, we aim to have &bull; improved staff knowledge and skills in providing good care for patients; &bull; found solutions to improve care; &bull; improved patient experience; and &bull; helped patients and staff to work out ways of collaborating to improve services for people withdrawing from medication. The overall impact of the study will be to improve understanding of patient experience in general practice and use this information to identify changes that can be made to ensure that patients have the best possible experience.

Research activity codes: 7.1 INDIVIDUAL CARE NEEDS;7.3 MANAGEMENT AND DECISION MAKING;8.1 ORGANISATION AND DELIVERY OF SERVICES
Health categories: GENERIC HEALTH RELEVANCE