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The purpose of this paper is to outline the development of a training package for service users and carers with an interest in NHS health and social care research. It demonstrates how the developers used their unique experience and expertise as service users and carers to inform their work.

Service users and carers, NHS Research and Development Forum working group members, supported by health professionals, identified a need for research training that was tailored to other service user and carer needs. After reviewing existing provision and drawing on their training and support experience, they developed a training package. Sessions from the training package were piloted, which evaluated positively. In trying to achieve programme accreditation and training roll-out beyond the pilots, the group encountered several challenges.

The training package development group formed good working relationships and a co-production model that proved sustainable. However, challenges were difficult to overcome owing to external factors and financial constraints.

Lessons learnt by the team are useful for other service users and carer groups working with health service professionals. Training for service users and carers should be designed to meet their needs; quality and consistency are also important. The relationships between service user and carer groups, and professionals are important to understanding joint working. Recognising and addressing challenges at the outset can help develop strategies to overcome challenges and ensure project success.

The training package was developed by service users and carers for other service users and carers. Their unique health research experience underpinned the group’s values and training development.

The Department of Health and the National Health Service (NHS) Future Focused Finance (FFF) programme promotes effective engagement between clinical and finance staff. Surveys undertaken by the Department of Health between 2013 and 2015 found few NHS Trusts reported high levels of engagement. The purpose of this paper is to gain a better understanding of current working relationships between NHS clinical and finance professionals and how they might be supported to become more effective.

Ipsos MORI were commissioned by the NHS FFF programme to undertake an online survey of NHS clinical and finance staff between June and August 2015.

The majority of clinicians had a member of a finance team linked to their speciality or directorate. Clinical and finance professionals have a positive view of joint working preferring face-to-face contact. Clinician’s confidence in their understanding of finance was generally good and finance staff felt they had a good understanding of clinical issues. Effective working relationships were facilitated by face-to-face contact, a professional relationship, and the availability of clear, well presented finance and activity data.

Data protection issues limited the accessibility of the survey team to NHS staff resulting in a relatively low-response rate. Other forms of communication, including social media, were utilised to increase access to the survey.

The FFF programme is a unique programme aimed at making the NHS finance profession fit for the future. The close partnering work stream brings together the finance and clinical perspective to share knowledge, evidence, training, and to develop good practice and engagement.

Research suggests that 85 per cent of health research is avoidably wasted. The research and development management community has an important role in the research process and can contribute to improving the quality and value of research. Al-Shahi Salman et al. (2014) identified ways in which the community can contribute towards the reduction of research waste by increasing the efficiency of recruitment and retention of research participants, data management and data sharing in studies, and promoting the integration of research into practice. The paper aims to discuss these issues.

A project undertaken between May 2016 and May 2017 explored the perspective, and contribution, towards reducing research waste amongst the research and development management community. The study identified those categories of research waste the community felt were the most important and of the most value to address. It also examined spheres of influence and barriers to addressing research waste.

The most important and highest value categories of research waste to address were: implementation of research in practice, prioritisation of research, and design, conduct and analysis of research. The research and development management community’s level of influence in those areas was low. The categories where the community felt they had most influence, with the exception of design, conduct and analysis of research, were generally those they thought were less important and valuable, i.e. research taking place to time and target, public and patient involvement, and administration.

Waste in research is a significant area of waste in health care expenditure. This study has provided a better understanding of research waste for the research management community. The research and development management community can take a leadership role in formulating an action plan and identifying measures of success in reducing waste in research.

Service user and carer involvement in all aspects of the health and care research process, from co-applicant on funding applications to active engagement in a research study, is now a requirement for most research funders. However, as co-production increases and service users and carers take on more responsibilities, this involvement has legal, governance and ethical implications. The purpose of this paper is to raise awareness of the issues and consider potential solutions.

Experiences of engagement as co-applicants in research funding applications, of involvement as research study team members, and as co-researchers were gathered from a range of service user and carer experts. Consultation and a workshop gathered further evidence from a range of stakeholders across the research management community.

Service users and carers, who contribute to the research protocol and process, feel a strong sense of responsibility to ensure the high quality of a research study. However, they may be new to their roles, status and key responsibilities when acting as project team members, co-researchers or co-applicants engaging in funding applications. The responsibility of sponsors, grant holding organisations, funders and other members of the research community is to communicate with and support service users and carers in those roles. More needs to be done to understand the contractual, a legal and governance issues and responsibilities that are specific to service user and carer co-applicants, project team members and co-researchers, from both an organisational and individual service user and carer perspective.

The implications of the findings are to raise awareness of the practical, legal and ethical issues arising from this type of involvement and the potential risks arising from lack of cohesion or understanding. The review also highlights the concerns and barriers service users and carers may find in becoming involved.

The findings highlight a range of issues for research regulators, sponsors and investigators to consider to ensure service users and carers can fulfil their responsibilities and be supported in doing so.

The purpose of this paper is to examine the role of service user and carer involvement in NHS research and describe the nature of this involvement in three specialist mental health Trusts. It also aims to discuss the value of service user and carer involvement and present the perspective of the service user and research manager.

The paper reviews patient and public involvement policy and practice in the NHS and NHS research. It examines the effectiveness of involvement activity and utilises a case example to demonstrate the impact of patient/service user involvement on the NHS and the individuals who take part.

The paper concludes that service user involvement is essential if research is to support the development of health services that clearly reflect the needs of the service user and impact positively on service quality.

Service user involvement is an established element of NHS research and development at both national and local level. The Department of Health strategy for research, Best Research for Best Health, reiterates both the importance of research that benefits the patient and the involvement of the service user in the research process. Despite this, the changes in Department of Health support funding for research, introduced by the strategy, may inadvertently lead to some NHS Trusts experiencing difficulty in resourcing this important activity.

The paper illustrates the effectiveness of successful patient and public involvement in research. It also identifies how involvement has developed in a fragmented and uncoordinated way and how it is threatened by a failure to embed it more consistently in research infrastructure.

Reducing waste in health care can result in savings that could be used to meet the projected shortfall in NHS funding or to meet the care needs of vulnerable groups. Patients and their families can contribute to the identification and reduction of waste. To do so their understanding of the costs of health care and treatment needs to be increased. The paper aims to discuss these issues.

The approach formed part of the Close Partnering work stream of the NHS Future Focused Finance (FFF) programme. Included in this was a review of the literature relating to waste reduction, patient engagement and reference to experts in the field of public and patient engagement. Engagement of the patient voice in the NHS FFF programme to provide the patient perspective and engage in discussions with patients. Discussions with experts in patient and public involvement and clinicians were also undertaken.

The public and patients have little awareness of NHS finances and generally perceive efforts to reduce costs and achieve efficiencies as impacting on the quality of care. Engaging the public and patients in discussions about the costs of health care is challenging and existing methodologies for patient and public engagement may not be appropriate for what could be termed difficult conversations.

Increasing patient awareness of the costs of health care and treatment may result in patients and the public demanding greater involvement in decisions about health care expenditure and use of resources.

Difficult conversations with patients and the public about the costs of health and their role in reducing waste are rarely invited. This paper brings to the fore the issues and challenges that such discussions engender.

“Let me back into the world” was the heart rending response by an older relative to a question about his wellbeing following a difficult period of illness and hospitalisation. As his main carer, the author of the paper was struck, when visiting the hospital, by a small poster, on a notice board near to the entrance to the hospital ward, outlining the staff’s commitment to Compassion in Practice. Compassion in Practice was enshrined in the Compassion in Practice vision and strategy (Department of Health, NHS Commissioning Board, 2012) for building a culture of compassionate care across health and social care. A key element of the strategy was to make the values of care, compassion, courage, communication, competence and commitment, real and visible to patients and the public. The purpose of this paper is to seek to compare the values being stated with the care experience.

This paper records a personal perspective from a patient and their family carers of compassionate care in practice. This experience is one case study and does not seek to represent the experience of other patients and their families.

This highlights the importance of communication and demonstrates that care and compassion are human emotions and values that have to be lived in practice and are part of the interaction between patient, clinician and family. Simply believing in those core nursing values does not make them real for the patient in practice.

Both patient and the family carers had extensive experience of working in health and social care including the NHS. This account demonstrates the challenges of turning strategy into actions that can ultimately improve the patient experience of care.

There are many examples of consumer involvement in NHS research but few studies have examined the impact of this on service development or the research process. This study, involving service user and carer researchers working alongside professional researchers, aimed to examine the development of one service user and carer research group in a mental health Trust.

The research involved a review of existing literature on consumer involvement in research, a review of user involvement in research in South West Yorkshire Mental Health NHS Trust, a survey of consumers and NHS staff in the Trust, and a skills audit and training needs analysis of consumers.

The study identified the range and extent of consumer involvement and the impact of this on consumers and the Trust. Service users and carers were involved in a range of projects, mainly on the level of consultation or collaboration. The benefits for consumers were principally on a personal level and included gaining knowledge and experience, improved sense of well‐being, self esteem, and confidence. The benefit for the Trust was in having a service user perspective and focus. However, there is a tendency to omit service users from planning and setting priorities.

The study pointed to the need to build the evidence base on consumer involvement in research, particularly in terms of how consumers can impact on setting research priorities and selecting appropriate methods. It identifies the need for more training for consumers and for NHS staff and for a more coherent strategy.

This article will be of value to anyone who is at the start or in the early stages of their journey of consumer involvement. It identifies some of the practical issues faced by consumers and staff in working collaboratively, but also points to the benefits for all the stakeholders.

The purpose of this paper is to describe the development of an eating disorder care pathway for adults with eating disorders, in a northern borough town. It arose out of a need to reduce and address inconsistent access to services and treatment pathways.

The development involved a mapping exercise of current service delivery, a review of the literature on eating disorder care pathways, consultation workshops, the engagement of service users and carers, and the development of draft pathways for patients and carers.

Significant emphasis was on raising awareness, prevention, identification and assessment, treatment and recovery. Two pathways were proposed, one for service users focusing on awareness raising/prevention, identification and assessment, treatment, stabilisation and relapse prevention and one for carers/families focusing on carers being identifiable in their own right to receive support for caring for someone with an eating disorder.

A limitation of the care pathway under development was the difficulty obtaining an accurate figure of the true number of cases of eating disorders in the local area. This, together with the lack of any form of systematic review or meta-analysis of care pathways made identifying the number of people suffering from eating disorders and developing an effective model difficult.

The proposed pathway places significant emphasis on increasing knowledge, incorporating the patient perspective, and enhancing the recognition and understanding of eating disorders in the community. A model was created that could be implemented successfully and identify patients suffering from eating disorders, when the true incidence of eating disorders remains hidden.