Do people with intellectual disabilities understand their prescription medication? A scoping review

© 2019 The Authors. Journal of Applied Research in Intellectual Disabilities Published by John Wiley & Sons Ltd.Background: People with intellectual disabilities are more likely to experience poor health than the general population and are frequently prescribed multiple medications. Therefore, it is important that people with intellectual disabilities understand their medication and potential adverse effects. Method: A scoping review explored people with intellectual disabilities' knowledge of prescription medications, their risks and how medication understanding can be improved. Results: Ten journal articles were included. People with intellectual disabilities often lacked understanding of their medication, including its name, purpose and when and how to take it. Participants were often confused or unaware of adverse effects associated with their medication. Information was sometimes explained to carers rather than people with intellectual disabilities. Some interventions and accessible information helped to improve knowledge in people with intellectual disabilities. Conclusion: There is a need for accessible and tailored information about medication to be discussed with people with intellectual disabilities in order to meet legal and best practice standards.Peer reviewe

Evaluating the implementation and delivery of a social prescribing intervention: a research protocol

Background: In response to the increasing numbers of people with (multiple) chronic conditions, the need for integrated care is increasing too. Social prescribing is a new approach that aims to integrate the social and healthcare sector to improve the quality of care and user experience. Understanding main stakeholders’ perceptions and experiences is key to the implementation of social prescription and for informing future initiatives.  Objectives: This paper presents the protocol of a qualitative research study to explore factors that (i) facilitate and hinder the implementation of a social prescribing pilot in the East of England, and (ii) affect the uptake, adherence, and completion rates by service users.  Methods: A qualitative study including semi-structured interviews with managers, health professionals, service providers, navigators, and service users. Iterative thematic analysis will be used to analyse the data.  Conclusion: This study will produce evidence on factors that hinder and facilitate the implementation of a social prescribing programme, as well as factors affecting the engagement, and non-engagement, of service users. Findings can contribute to the development of an evidence base for social prescription programmes in the UK, and inform practice, policy, and future research in the field

Clinical leadership in service redesign using Clinical Commissioning Groups: a mixed-methods study

Background: A core component of the Health and Social Care Act 2012 (Great Britain. Health and Social Care Act 2012. London: HMSO; 2012) was the idea of devolving to general practitioners (GPs) a health service leadership role for service redesign. For this purpose, new Clinical Commissioning Groups (CCGs) were formed in the English NHS.Objectives: This research examined the extent to which, and the methods by which, clinicians stepped forward to take up a leadership role in service redesign using CCGs as a platform.Design: The project proceeded in five phases: (1) a scoping study across 15 CCGs, (2) the design and administration of a national survey of all members of CCG governing bodies in 2014, (3) six main in-depth case studies, (4) a second national survey of governing body members in 2016, which allowed longitudinal comparisons, and (5) international comparisons.Participants: In addition to GPs serving in clinical lead roles for CCGs, the research included insights from accountable officers and other managers and perspectives from secondary care and other provider organisations (local authority councillors and staff, patients and the public, and other relevant bodies).Results: Instances of the exercise of clinical leadership utilising the mechanism of the CCGs were strikingly varied. Some CCG teams had made little of the opportunity. However, we found other examples of clinicians stepping forward to bring about meaningful improvements in services. The most notable cases involved the design of integrated care for frail elderly patients and others with long-term conditions. The leadership of these service redesigns required cross-boundary working with primary care, secondary care, community care and social work. The processes enabling such breakthroughs required interlocking processes of leadership across three arenas: (1) strategy-level work at CCG board level, (2) mid-range operational planning and negotiation at programme board level and (3) the arena of practical implementation leadership at the point of delivery. The arena of the CCG board provided the legitimacy for strategic change; the programme boards worked through the competing logics of markets, hierarchy and networks; and the practice arena allowed the exercise of clinical leadership in practical problemsolving, detailed learning and routinisation of new ways of working at a common-sense everyday level.Limitations: Although the research was conducted over a 3-year period, it could be argued that a much longer period is required for CCGs to mature and realise their potential.Conclusions: Despite the variation in practice, we found significant examples of clinical leaders forging new modes of service design and delivery. A great deal of the service redesign effort was directed at compensating for the fragmented nature of the NHS – part of which had been created by the 2012 reforms. This is the first study to reveal details of such work in a systematic way

'Join us on our journey': Exploring the experiences of children and young people with type 1 diabetes and their parents

This paper focuses on children and young people with type 1 diabetes and on their parents, and their experiences of diabetes care provision. Nine acute hospitals in the Yorkshire and the Humber region, UK, were recruited to participate in a qualitative research study. Children and young people with type 1 diabetes, aged 6–25, and their parents (approximately 250 participants), took part in talking groups to find out about their experiences of diabetes care provision. Findings show that there are key areas for improvement in the future diabetes care provision for children and young people, including communication and support, schools, structured education and transition. These have important implications for practice and service redesign. This study is thought to be the first of its kind to consult with children, young people and parents to find out about their experiences of type 1 diabetes care provision. The research findings add to the current evidence base by highlighting the disparities in care, the urgent need for change in the way services are delivered and the involvement of service users in this process

Personal continuity and access in UK general practice: a qualitative study of general practitioners' and patients' perceptions of when and how they matter

BACKGROUND: Personal continuity is a core value for family practice, but policy and performance targets emphasise other aspects of care, particularly waiting times for consultation. This study examined patient and general practitioner (GP) perceptions of the value of personal continuity and rapid access, and the relationship between them. METHODS: Qualitative analysis of semi-structured interviews with a purposive sample of 16 GPs and 32 patients in the Lothian region of Scotland, to identify whether, how, why and in which circumstances personal continuity and rapid access were valued. RESULTS: From the patients' perspective, what mattered was 'access to appropriate care' depending on the problem to be dealt with. For a few patients, rapid access was the only priority. For most, rapid access was balanced against greater involvement in the consultation when seeing 'their' trusted doctor, which was particularly valued for chronic, complex and emotional problems. GPs focused on the value of personal continuity in the consultation for improving the diagnosis and management of the same kinds of problem. GPs did not perceive enabling access to be a core part of their work. There was little evidence that GPs routinely discussed with patients when or how personal continuity and access should be balanced. CONCLUSION: 'Access to appropriate care' from the patients' perspective is not fully addressed by GPs' focus on personal continuity, nor by performance targets focused only on speed of access. GPs need to make enabling access as much a part of their core values as personal continuity, and access targets need to be based on less simplistic measures that account for the appropriateness of care as well as speed of access

Improving access for patients – a practice manager questionnaire

BACKGROUND: The administrative and professional consequences of access targets for general practices, as detailed in the new GMS contract, are unknown. This study researched the effect of implementing the access targets of the new GP contract on general practice appointment systems, and practice manager satisfaction in a UK primary health care setting. METHODS: A four-part postal questionnaire was administered. The questionnaire was modified from previously validated questionnaires and the findings compared with data obtained from the Western Health and Social Services Board (WHSSB) in N Ireland. Practice managers from the 59 general practices in the WHSSB responded to the questionnaire. RESULTS: There was a 94.9% response rate. Practice managers were generally satisfied with the introduction of access targets for patients. Some 57.1% of responding practices, most in deprived areas (Odds ratio 3.13 -95% CI 1.01 – 9.80, p = 0.0256) had modified their appointment systems. Less booking flexibility was reported among group practices (p = 0.006), urban practices (p < 0.001) and those with above average patient list sizes (p < 0.001). Receptionists had not received training in patient appointment management in a quarter of practices. Practices with smaller list sizes were more likely than larger ones to utilise nurses in seeing extra patients (p = 0.007) or to undertake triage procedures (p = 0.062). CONCLUSION: The findings demonstrated the ability of general practices within the WHSSB to adjust to a demanding component of the new GP contract. Issues relating to the flexibility of patient appointment booking systems, receptionists' training and the development of the primary care nursing role were highlighted by the study

Homeward bound or bound for a home? Assessing the capacity of dementia patients to make decisions about hospital discharge: Comparing practice with legal standards

Background This article stems from a larger project which considers ways of improving assessments of capacity and judgements about best interests in connection with people with dementia admitted to acute hospitals with respect to decisions about place of residence. Aims Our aim is to comment on how assessments of residence capacity are actually performed on general hospital wards compared with legal standards for the assessment of capacity set out in the Mental Capacity Act, 2005 (MCA). Method Our findings are grounded in ethnographic ward-based observations and in-depth interviews conducted in three hospital wards, in two hospitals (acute and rehabilitation), within two NHS healthcare trusts in the North of England over a period of nine months between 2008 and 2009. Twenty-nine patient cases were recruited to the study. We also draw from broader conceptions of capacity found in domestic and international legal, medical, ethical and social science literature. Results Our findings suggest that whilst professionals profess to be familiar with broad legal standards governing the assessment of capacity under the MCA, these standards are not routinely applied in practice in general hospital settings when assessing capacity to decide place of residence on discharge from hospital. We discuss whether the criteria set out in the MCA and the guidance in its Code of Practice are sufficient when assessing residence capacity, given the particular ambiguities and complexities of this capacity. Conclusions We conclude by suggesting that more specific legal standards are required when assessing capacity in this particular context

Dignity and Respect in Midwifery Education in the UK: a survey of Lead Midwives of Education

In the UK respect, dignity and compassion are the underpinning values which must determine service user care in the National Health Service (NHS). In midwifery education it is unclear how students are being taught these values. We created a study that aimed to explore how learning about dignity and respect is facilitated and assessed within pre-registration midwifery curricula. An online survey was devised and distributed to all Lead Midwives for Education in the UK. The findings are presented under the three main themes of understanding the meaning of dignity and respect, teaching and assessment and experiences. The study concludes that, though there are some good areas of education practice there is inconsistency in how Nursing and Midwifery Council (NMC) guidelines are transferred into curricula. This leads to students receiving differing emphasis of education on the values of dignity and respect

A cluster randomized controlled trial of the effectiveness and cost-effectiveness of Intermediate Care Clinics for Diabetes (ICCD) : study protocol for a randomized controlled trial

Background World-wide healthcare systems are faced with an epidemic of type 2 diabetes. In the United Kingdom, clinical care is primarily provided by general practitioners (GPs) rather than hospital specialists. Intermediate care clinics for diabetes (ICCD) potentially provide a model for supporting GPs in their care of people with poorly controlled type 2 diabetes and in their management of cardiovascular risk factors. This study aims to (1) compare patients with type 2 diabetes registered with practices that have access to an ICCD service with those that have access only to usual hospital care; (2) assess the cost-effectiveness of the intervention; and (3) explore the views and experiences of patients, health professionals and other stakeholders. Methods/Design This two-arm cluster randomized controlled trial (with integral economic evaluation and qualitative study) is set in general practices in three UK Primary Care Trusts. Practices are randomized to one of two groups with patients referred to either an ICCD (intervention) or to hospital care (control). Intervention group: GP practices in the intervention arm have the opportunity to refer patients to an ICCD - a multidisciplinary team led by a specialist nurse and a diabetologist. Patients are reviewed and managed in the ICCD for a short period with a goal of improving diabetes and cardiovascular risk factor control and are then referred back to practice. or Control group: Standard GP care, with referral to secondary care as required, but no access to ICCD. Participants are adults aged 18 years or older who have type 2 diabetes that is difficult for their GPs to control. The primary outcome is the proportion of participants reaching three risk factor targets: HbA1c (≤7.0%); blood pressure (<140/80); and cholesterol (<4 mmol/l), at the end of the 18-month intervention period. The main secondary outcomes are the proportion of participants reaching individual risk factor targets and the overall 10-year risks for coronary heart disease(CHD) and stroke assessed by the United Kingdom Prospective Diabetes Study (UKPDS) risk engine. Other secondary outcomes include body mass index and waist circumference, use of medication, reported smoking, emotional adjustment, patient satisfaction and views on continuity, costs and health related quality of life. We aimed to randomize 50 practices and recruit 2,555 patients

A Discrete Event Simulation model to evaluate the treatment pathways of patients with Cataract in the United Kingdom

Background The number of people affected by cataract in the United Kingdom (UK) is growing rapidly due to ageing population. As the only way to treat cataract is through surgery, there is a high demand for this type of surgery and figures indicate that it is the most performed type of surgery in the UK. The National Health Service (NHS), which provides free of charge care in the UK, is under huge financial pressure due to budget austerity in the last decade. As the number of people affected by the disease is expected to grow significantly in coming years, the aim of this study is to evaluate whether the introduction of new processes and medical technologies will enable cataract services to cope with the demand within the NHS funding constraints. Methods We developed a Discrete Event Simulation model representing the cataract services pathways at Leicester Royal Infirmary Hospital. The model was inputted with data from national and local sources as well as from a surgery demand forecasting model developed in the study. The model was verified and validated with the participation of the cataract services clinical and management teams. Results Four scenarios involving increased number of surgeries per half-day surgery theatre slot were simulated. Results indicate that the total number of surgeries per year could be increased by 40% at no extra cost. However, the rate of improvement decreases for increased number of surgeries per half-day surgery theatre slot due to a higher number of cancelled surgeries. Productivity is expected to improve as the total number of doctors and nurses hours will increase by 5 and 12% respectively. However, non-human resources such as pre-surgery rooms and post-surgery recovery chairs are under-utilized across all scenarios. Conclusions Using new processes and medical technologies for cataract surgery is a promising way to deal with the expected higher demand especially as this could be achieved with limited impact on costs. Non-human resources capacity need to be evenly levelled across the surgery pathway to improve their utilisation. The performance of cataract services could be improved by better communication with and proactive management of patients.Peer reviewedFinal Published versio