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Perkins, Paul
Biography
I am a consultant in Palliative Medicine based at Sue Ryder Leckhampton Court, and Chief Medical Director for Sue Ryder.
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Publication Open Access Carer administration of as-needed subcutaneous medication for breakthrough symptoms in people dying at home: the CARiAD feasibility RCT(NIHR Journals Library, 2020-05-24) Poolman, Marlise; Roberts, Jessica; Wright, Stella; Hendry, Annie; Goulden, Nia; Holmes, Emily; Byrne, Anthony; Perkins, Paul; Hoare, Zoe; Nelson, Annmarie; Hiscock, Julia; Parkinson, Anne; Perkins, Paul; Parkinson, Anne; Medical and Dental; Nursing and Midwifery RegisteredBackground: Most people who are dying want to be cared for at home, but only half of them achieve this. The likelihood of a home death often depends on the availability of able and willing lay carers. When people who are dying are unable to take oral medication, injectable medication is used. When top-up medication is required, a health-care professional travels to the dying person's home, which may delay symptom relief. The administration of subcutaneous medication by lay carers, although not widespread UK practice, has proven to be key in achieving better symptom control for those dying at home in other countries. Objectives: To determine if carer administration of as-needed subcutaneous medication for common breakthrough symptoms in people dying at home is feasible and acceptable in the UK, and if it would be feasible to test this intervention in a future definitive randomised controlled trial. Design: We conducted a two-arm, parallel-group, individually randomised, open pilot trial of the intervention versus usual care, with a 1 : 1 allocation ratio, using convergent mixed methods. Setting: Home-based care without 24/7 paid care provision, in three UK sites. Participants: Participants were dyads of adult patients and carers: patients in the last weeks of their life who wished to die at home and lay carers who were willing to be trained to give subcutaneous medication. Strict risk assessment criteria needed to be met before approach, including known history of substance abuse or carer ability to be trained to competency. Intervention: Intervention-group carers received training by local nurses using a manualised training package. Main outcome measures: Quantitative data were collected at baseline and 6-8 weeks post bereavement and via carer diaries. Interviews with carers and health-care professionals explored attitudes to, experiences of and preferences for giving subcutaneous medication and experience of trial processes. The main outcomes of interest were feasibility, acceptability, recruitment rates, attrition and selection of the most appropriate outcome measures. Results: In total, 40 out of 101 eligible dyads were recruited (39.6%), which met the feasibility criterion of recruiting > 30% of eligible dyads. The expected recruitment target (≈50 dyads) was not reached, as fewer than expected participants were identified. Although the overall retention rate was 55% (22/40), this was substantially unbalanced [30% (6/20) usual care and 80% (16/20) intervention]. The feasibility criterion of > 40% retention was, therefore, considered not met. A total of 12 carers (intervention, n = 10; usual care, n = 2) and 20 health-care professionals were interviewed. The intervention was considered acceptable, feasible and safe in the small study population. The context of the feasibility study was not ideal, as district nurses were seriously overstretched and unfamiliar with research methods. A disparity in readiness to consider the intervention was demonstrated between carers and health-care professionals. Findings showed that there were methodological and ethics issues pertaining to researching last days of life care. Conclusion: The success of a future definitive trial is uncertain because of equivocal results in the progression criteria, particularly poor recruitment overall and a low retention rate in the usual-care group. Future work regarding the intervention should include understanding the context of UK areas where this has been adopted, ascertaining wider public views and exploring health-care professional views on burden and risk in the NHS context. There should be consideration of the need for national policy and of the most appropriate quantitative outcome measures to use. This will help to ascertain if there are unanswered questions to be studied in a trial.Publication Open Access Exploring the Impact of a Remote Monitoring System for Palliative and End-of-Life Care (CARE-PAC): Mixed Methods Feasibility Study(JMIR Publications, 2025-09-23) Maguire, Roma; McCann, Lisa; Singleton, Claire; Perkins, Paul; Minton, Ollie; McCann, Nicola; Longford, Emma; McKeown, Alistair; Kavanagh, Kimberley; Miller, Morven; Perkins, Paul; Medical and DentalBackground: In the United Kingdom, access to and the quality of palliative and end-of-life care (PEOLC) vary widely. In the final months of life, many patients face avoidable accident and emergency (A&E) visits and hospital admissions, driven by gaps in out-of-hours support and poorly coordinated care. This not only increases stress for patients and carers but also places avoidable strain and cost on the National Health Service (NHS). There is an urgent need for more compassionate, person-centered models that support people to remain at home, improve their quality of life (QoL), and reduce unnecessary use of acute services. Objective: This study aimed to explore the usability, user experiences, and impact of the digital dyadic remote monitoring Care and Support System for Patients and Carers (CARE-PAC) for patients in the last year of life, their informal carers, and health professionals involved in their care. Methods: Patients and informal carers were recruited to use CARE-PAC for up to 12 weeks. A mixed methods approach was used. Quantitative methods included the use of validated QoL scales and the System Usability Scale (SUS). Paired QoL and usability data were analyzed using the Wilcoxon (Pratt) signed-rank test, while unpaired usability data were analyzed using the Wilcoxon rank-sum test. Qualitative methods involved short catch-up calls, in-depth interviews, and focus groups conducted using topic guides informed by the domains of the Non-adoption, Abandonment, Scale-up, Spread, and Sustainability (NASSS) framework. Data were analyzed thematically. Results: CARE-PAC was implemented across 5 UK clinical sites with 26 participants (13 patient-carer dyads). No significant changes were observed in patients’ total QoL scores; however, significant improvements were seen in the “overall QoL” and “social” domains, alongside a significant decline in the “physical” domain. Carers showed no significant changes across total or domain-specific QoL scores. Usability was rated highly by patients (mean 87.9, SD 12.4) and carers (mean 94.7, SD 3.8), indicating an excellent user experience. Health care professionals (HCPs) reported lower usability scores (mean 63.6, SD 15.6), falling below average but above the threshold for poor usability. Thematic analysis of qualitative data gathered via catch-up calls (all patient-carer dyads), in-depth interviews (2 patients-2 carers), and 4 focus groups/1 interview (12 HCPs) identified 4 key themes: impact on care experiences, reflections and satisfaction, implementation challenges, and future directions. Conclusions: CARE-PAC is a usable, feasible, and acceptable remote monitoring and support system for patients in the last year of life, their carers, and HCPs. It enables real-time identification of needs and has shown positive impacts on the QoL of both patients and carers. These findings support the need for further research to evaluate its effectiveness at scale and explore pathways for wider implementation in PEOLC.Publication Open Access Carer administration of as-needed subcutaneous medication for breakthrough symptoms in people dying at home: the CARiAD feasibility RCT(BMJ Publishing Group, 2025-06-12) Poolman, Marlise; Wright, Stella; Hendry, Annie; Goulden, Nia; Holmes, Emily; Byrne, Anthony; Perkins, Paul; Hoare, Zoe; Nelson, Annmarie; Hiscock, Julia; Hughes, Dyfrig; O'Connor, Julie; Foster, Betty; Reymond, Liz; Lewis, Penney; Wee, Bee; Roberts, Rossella; Parkinson, Anne; Roberts, Sian; Wilkinson, Clare; Perkins, Paul; Parkinson, Anne; Medical and Dental; Nursing and Midwifery RegisteredObjectives: To determine if carer administration of as-needed subcutaneous medication for common breakthrough symptoms in people dying at home is feasible and acceptable in the UK, and if it would be feasible to test this intervention in a future definitive randomised controlled trial. Design: We conducted a two-arm, parallel-group, individually randomised, open pilot trial of the intervention versus usual care, with a 1:1 allocation ratio, using convergent mixed methods. Setting: Home-based care without 24/7 paid care provision, in three UK sites. Participants: Participants were dyads of adult patients and carers: patients in the last weeks of their life who wished to die at home and lay carers who were willing to be trained to give subcutaneous medication. Strict risk assessment criteria needed to be met before the approach, including a known history of substance abuse or carer ability to be trained to competency. Intervention: Intervention-group carers received training by local nurses using a manualised training package. Primary outcome measures: Quantitative data were collected at baseline and 6-8 weeks post-bereavement and via carer diaries. Interviews with carers and healthcare professionals explored attitudes to, experiences of and preferences for giving subcutaneous medication and experience of trial processes. The main outcomes of interest were feasibility, acceptability, recruitment rates, attrition and selection of the most appropriate outcome measures. Secondary outcome measures: The secondary outcome measure was time to symptom relief, calculated using data items from the carer diary, after the patient had died. Results: In total, 40 out of 101 eligible dyads were recruited (39.6%), which met the feasibility criterion of recruiting >30% of eligible dyads. The expected recruitment target (≈50 dyads) was not reached, as fewer than expected participants were identified. Although the overall retention rate was 55% (22/40), this was substantially unbalanced (30% (6/20) usual care and 80% (16/20) intervention). The feasibility criterion of >40% retention was, therefore, considered not met. A total of 12 carers (intervention, n=10; usual care, n=2) and 20 healthcare professionals were interviewed. The intervention was considered acceptable, feasible and safe in the small study population. The intervention group had a considerably shorter time to medication administration than the usual-care group (median time to administer medication in intervention=5 min, usual-care=105 min). Intervention group carers felt confident in administering medication. Healthcare professional support was sought by intervention group carers in 24 out of 147 (16.3%) medication administration entries. The context of the feasibility study was not ideal, as district nurses were overstretched, unfamiliar with research methods and possibly not in equipoise. A disparity in readiness to consider the intervention was demonstrated between carers, who were uniformly enthusiastic, and healthcare professionals who were not. Findings confirmed methodological and ethics issues pertaining to researching the last days of life care. Conclusion: The success of a future definitive trial is uncertain because of equivocal results in the progression criteria, particularly poor recruitment overall and a low retention rate in the usual-care group. Future work regarding the intervention should include understanding the context of UK areas where this has been adopted, ascertaining wider public views and exploring healthcare professional views on burden and risk in the NHS context. There should be consideration of the need for national policy and the most appropriate quantitative outcome measures to use. This will help to ascertain if there are unanswered questions to be studied in a trial.Publication Metadata only Nasal fentanyl and buccal midazolam carer administration 'as needed' for breakthrough symptom control in a specialist palliative care unit: a nested qualitative study(BMJ Publishing Group, 2021-03-25) Perkins, Paul; Parkinson, Anne; Taylor, Vanessa; Husbands, Emma; Perkins, Paul; Parkinson, Anne; Husbands, Emma; Medical and DentalIntroduction: When people are dying and unable to take oral medication, injectable medication is commonly used, usually administered by healthcare professionals. There may be delays to symptom relief due to travel to the person's home. In a randomised controlled trial (RCT) previously reported, nasal fentanyl (NF) or buccal midazolam (BM) were administered by lay carers in a hospice. Objective: (1) To report experiences of lay carers who administered NF and BM for symptom control and (2) To use feedback to develop guidance informing a future definitive RCT to determine whether NF and BM administered by lay carers can lead to timely, improved symptom control for people dying at home and fewer 'emergency' community nursing visits than standard breakthrough medication administered by healthcare professionals. Material and methods: Semistructured interviews with lay carers who gave trial medication were conducted. Interview data were analysed using a stage by stage method to code and categorise transcripts. Findings: The six themes were: (1) Participation-lay carers welcomed the opportunity to administer medication; (2) Ease of use-lay carers found preparations easy to use; (3) How things could have been done differently-lay carers would have liked access to trial drugs at home; (4) Training-lay carers were happy with the training they received; (5) Timing-lay carers liked the immediacy of trial drugs and (6) Evaluation-assessing symptom intensity and drug efficacy. Conclusions: Participation was acceptable to patients and lay carers, and beneficial for symptom relief. The findings will inform planning for a future community-based study.Publication Metadata only Nasal fentanyl alone plus buccal midazolam: an open-label, randomised, controlled feasibility study in the dying(BMJ Publishing Group, 2020-05-06) Perkins, Paul; Parkinson, Anne; Kwame Akyea, Ralph; Husbands, Emma; Perkins, Paul; Parkinson, Anne; Husbands, Emma; Medical and Dental; Nursing and Midwifery RegisteredIntroduction: Many patients want to stay at home to die. They invariably become unable to take oral medication during their terminal phase. Symptoms are usually controlled by subcutaneous medications. There have been no studies on nasal fentanyl (NF) or buccal midazolam (BM) to control symptoms in the dying. Objective: To establish how best to conduct a definitive, randomised controlled trial (RCT) to determine whether NF and BM administered by families, for patients dying at home, lead to faster and better symptom control and fewer community nursing visits than standard breakthrough medication by healthcare professionals. Methods: This open-label mixed-method feasibility RCT compared the efficacy of NF and BM by family members to standard breakthrough medication by nurses for the terminally ill in a specialist palliative care unit. Partway through the study, a third observational arm was introduced where BM alone was used. The primary outcomes were whether recruitment and randomisation were possible, assessment of withdrawal and drop-out, and whether the methods were acceptable and appropriate. Results: Administration of NF and BM was acceptable to patients and families. Both were well tolerated. We were unable to obtain quality of life data consistently but did get time period data for dose-controlled symptoms. Conclusions: Study participation in a hospice population of the dying was acceptable. The results will help guide future community study planning.Publication Metadata only What Is Current Venting Gastrostomy Practice in Patients with Malignant Bowel Obstruction in the UK?(SAGE Publications, 2024-03) Oussena, Sarah; Clark, Yvonne; Mullan, Damian; Laasch, Hans-Ulrich; Perkins, Paul; Oussena, Sarah; Clark, Yvonne; Perkins, Paul; Medical and DentalBackground/aims: Malignant Bowel Obstruction (MBO) is a serious complication of advanced cancer, occurring in 3-15% of cases. If inoperable, mean survival is 4-5 weeks, and management includes symptom relieving medication and stomach decompression via nasogastric tube (NGT) or venting gastrostomy (VG). While VG appears effective in reducing symptoms, it is associated with complications compared with medical management. There is debate about the role of VG in the management of MBO, however consensus guidelines from EAPC in 2001 suggest that VG is preferable to NGT in the long-term and should be considered in all patients whose symptoms have not responded to pharmacological therapy. Aims: To determine the current practice of VG in the treatment of MBO in the UK, with a focus on two themes: 1. The number of VGs placed, and technical details related to their placement. 2. Current pathways including referral criteria, patient information and training. Methods: An electronic survey was distributed to HCPs who place VG for MBO in the UK. The analyses for the study will be descriptive. Where multiple responses are received from a centre, the mean/average as well as range will be reported. Results: Our study is currently in the data collection phase, but early results suggest a significant variation in VG practice across the UK, without a clear consensus. Conclusions: We will present our data at the conference. Preliminary results show great variation in VG practice. This is an opportunity for the production of consensus guidelines on the role of VG in MBO, so that patients who could be helped by this intervention can receive it.Publication Metadata only Does acupressure help reduce nausea and vomiting in palliative care patients? A double blind randomised controlled trial(BMJ Publishing Group, 2022-04-11) Perkins, Paul; Parkinson, Anne; Parker, Rebecca; Blaken, Alison; Akyea, Ralph; Perkins, Paul; Parkinson, Anne; Parker, Rebecca; Medical and Dental; Nursing and Midwifery RegisteredIntroduction: Nausea and vomiting are common symptoms for patients with advanced cancer. While there is evidence for acupuncture point stimulation for treatment of these symptoms for patients having anticancer treatment, there is little for when they are not related to such treatment. Objective: To determine whether acupressure at the pericardium 6 site can help in the treatment of nausea and vomiting suffered by palliative care patients with advanced cancer. Materials and methods: Double blind randomised controlled trial-active versus placebo acupressure wristbands. In-patients with advanced cancer in two specialist palliative care units who fitted either or both of the following criteria were approached: Nausea that was at least moderate; Vomiting daily on average for the prior 3 days. Results: 57 patients were randomised to have either active or placebo acupressure wristbands. There was no difference in any of the outcome measures between the two groups: change from baseline number of vomits; Visual Analogue Scale for 'did acupressure wristbands help you to feel better?'; total number of as needed doses of antiemetic medication; need for escalation of antiemetics. Conclusions: In contrast to a previously published feasibility study, active acupressure wristbands were no better than placebo for specialist palliative care in-patients with advanced cancer and nausea and vomiting.Publication Metadata only What do hospice websites communicate about the meaning of palliative care?(SAGE Publications, 2025-05-21) Browne, Charlotte; Williams, Lucy; Perkins, Paul; Taylor, Vanessa; Perkins, Paul; Medical and DentalBackground: The public has a limited understanding of the term palliative care and the role of hospices, creating misunderstanding and influencing access to these services. Globally, the public will access hospice websites to source information, reinforcing the importance of clear and concise messaging. Few studies have focused on how hospice websites communicate with service users and the public about what they do. Aim/Research question or hypothesis: To explore how adult hospices communicate to the public via their websites about the meaning of palliative care, what palliative care involves and who it can help. Methods: We identified key terms in the International Association for Hospice & Palliative Care (IAHPC) and World Health Organisation (WHO) published definitions of palliative care to develop a framework for analysis. An artificial intelligence assisted algorithm was used to scan through n=130 United Kingdom hospice websites and identify how frequently these key terms were included. In addition, a manual in-depth review of n=24 hospice websites was undertaken to obtain detailed information about palliative care definitions, description of service and service users. These data were analysed using the developed framework. Results: There was wide variability in information on hospice websites. Some key terms were used frequently - ‘family’, ‘support’ and ‘end of life’ were included on >90% of sites. Whereas, other terms were rarely used - ‘relieves’, ‘natural process’ and ‘throughout illness’ were included on <20% of sites. The in-depth review identified that only 8 out of 24 hospice websites included a definition of palliative care, and these were generally poorly aligned with the published WHO and IAHPC definitions. Discussion: Hospice websites provide limited and inadequate information regarding what palliative care is or the services provided. Hospice websites should be updated to include a clear and consistent definition of palliative care to help address misunderstandings and to improve engagement with the public.Publication Metadata only The carbon footprint of a hospice(BMJ Publishing Group, 2022-10-07) Dokal, Kitt; Morris, Mungo; Spooner, Rosie; Perkins, Paul; Morris, Mungo; Spooner, Rosie; Perkins, Paul; Medical and DentalObjectives Environmental sustainability is an important concern within the National Health Service. Compared with other specialties, there has been little research within palliative care. This study aims to calculate the carbon footprint of a specialist palliative care unit. Methods Resources grouped into medical, nonmedical, travel, energy and waste were collected for the year 2021 in a hospice in the South West of England. Following a top-down approach, the activity used for each resource was multiplied by an emissions factor to calculate the carbon footprint. Staff attitudes were also surveyed. Results The hospice carbon footprint was calculated as 420 tonnes kgCO2 e. Travel (35%) was the highest contributor to emissions followed by gas (33%) and non-medical supplies (17%). There were 95 responses to the staff survey (59% response rate) with strong enthusiasm towards sustainable practices. Conclusion This is the first study to estimate the carbon footprint of a specialist palliative care unit. Compared with other specialties, palliative care has relatively low greenhouse gas emissions. Identifying sources of carbon equivalent production can be a first step into developing interventions to reduce this use. Our carbon footprint study will be used by the Hospice Sustainability Group to reduce our unit’s carbon footprintPublication Metadata only 59 Experiences of CARE-PAC: a novel, dyadic digital remote monitoring system for patient and carer wellbeing(BMJ Publishing Group, 2024-02-02) Miller, Morven; Maguire, Roma; McCann, Lisa; Minton, Ollie; Seal, Matthew; Perkins, Paul; Parkinson, Anne; Sizer, Elaine; McKeown, Alistair; McCann, Nicola; Johnston, Helen; Tierney, Adele; Sheen, Linzi; Longford, Emma; Perkins, Paul; Parkinson, Anne; Sizer, Elaine; Medical and Dental; Nursing and Midwifery Registered; Additional Clinical ServicesNo abstract available