Real People, Real Lives: a small scale pilot project exploring case studies of the transition experiences of young people with long term conditions and disabilities who have recently moved from children's to adult serrvices in Cheshire and Merseyside

Aims The aim of this pilot project was to carry out Case Studies which will explore the different transition pathways and experiences of young people representing the following groups: • Young people who have common long – term conditions such as Diabetes and Epilepsy which are predominantly self-managed at home, with oversight from centres with specialist expertise. • Young People who have long term conditions which require intermittent or regular hospital-based intensive support such as those who are technology dependant or require frequent admissions for acute or specialist care. • Young people who have disabilities and complex needs. • Young people who are receiving support from Child and Adolescent Mental Health Services. The intended outcomes were to provide the local Strategic Clinical Network Special Interest Group with insight into how strategies to improve the experience of transition could be informed by the lived experiences of: • Young Service Users who had recently undergone transition from children’s to adult services • The viewpoints of their parents and carers • The perspectives of lead professionals involved in planning, coordinating and supporting the transition process. Methods Six Case Studies were constructed following face-to-face semi-structured interviews with young people, parents and carers representing the above groups. The young people involved had experienced the transition from children’s to adult services during the previous six months to three years. Where it was possible to identify and access a lead professional who was involved in planning and co-ordinating the transition their perspective was also sought through separate face to face and telephone interviews before inclusion within the appropriate case study. Results The Case Studies demonstrate that parents have a good understanding of what Transition means, and have endeavoured to explain this to their children. Some parents and carers were aware of policy guidance and expectations, for example the recommendation that planning should start during the early teenage years. This is not necessarily what they have experienced themselves. There were some examples of good practice and transitions support where knowledgeable and experienced practitioners were able to plan holistically to work across boundaries and overcome barriers to assure the best possible outcomes for young people. Other young people and their parents were not able to identify someone who had taken lead responsibility for co-ordinating their transition to adult services. Emerging themes included : • Variable Transition Plans and experiences • Young people still “getting lost” in transition • Variable involvement of young people and families in decision-making • The influence of different traditions, levels of practitioner confidence and models of service provision • Training needs and developing expertise and best practice in transition support • Fearful young people and “battle-weary” parents • The positive and negative impact of transition experiences • Loss of services • Key messages from families • Communication, planning and process • Improving services and support Conclusions 1. Transition services across the region include some areas of good or developing practice as well as some examples of inadequate transition planning and services to meet the needs of young people who have long term conditions, special educational needs or disabilities. 2. It is not currently possible to conclude that all transition experiences in the region universally meet sector standards and best practice guidance. 3. Families would like those in charge of commissioning services and making financial decisions to hear their stories and understand the challenges they face. 4. The Strategic Clinical Network is in a privileged position to make some transformational changes to benefit young people, parents and carers – to achieve this they may need to be courageous in re-thinking delivery models and the relationship between services designed to meet the needs of children and adults. This is likely to involve working in partnership with other Strategic Clinical Networks and Clinical Commissioning Groups. 5. There are some good examples of effective practice, but transition planning often starts late and may be vague and fragmented, have gaps or fail to adequately involve young people parents and carers in decisions. 6. Transition outcomes for young people and families can be positive, however the researchers found several examples of diminished service provision to the detriment of service users. 7. Where transition planning has worked well this has been because there has been a dedicated Key Worker, named lead professional or Transition Team who have developed expertise; are able to coordinate regular meetings and bring together multi-disciplinary/ multi-agency teams; effectively involve service providers and users and develop creative solutions to overcome barriers in order to meet the individual needs of young people and their families. 8. The planning process needs an approach which bridges divisions between children’s and adult services; health, social care and education; hospital and community settings; geographical boundaries - service provision needs to develop to match this approach. 9. Training, resources, and pathways need to be developed for both practitioners and families involved in developing and implementing Transition Plans. 10. New models of care provision and new ways of working will be essential to success; new technologies could contribute to solutions

Ab initio molecular dynamics study of manganese porphine hydration and interaction with nitric oxide

The authors use ab initio molecular dynamics and the density functional theory+U (DFT+U) method to compute the hydration environment of the manganese ion in manganese (II) and manganese (III) porphines (MnP) dispersed in liquid water. These are intended as simple models for more complex water soluble porphyrins, which have important physiological and electrochemical applications. The manganese ion in Mn(II)P exhibits significant out-of-porphine plane displacement and binds strongly to a single H2O molecule in liquid water. The Mn in Mn(III)P is on average coplanar with the porphine plane and forms a stable complex with two H2O molecules. The residence times of these water molecules exceed 15 ps. The DFT+U method correctly predicts that water displaces NO from Mn(III)P-NO, but yields an ambiguous spin state for the MnP(II)-NO complex.Comment: 10 pages, 6 figure

"Our Unified Voice to Implement Change and Advance the View of Young Carers and Young Adult Carers." An Appreciative Evaluation of the Impact of a National Young Carer Health Champions Programme

A growing evidence base highlights the challenges and support needs of young carers and young adult carers, however research and policy frequently neglect the voice and experience of young people themselves. A team at NHS England developed the Young Carer Health Champions programme to bring together young carers and young adult carers from across England, establishing a network of peer support, sharing of experiences and improving confidence, health literacy and wellbeing. This commissioned independent evaluation aimed to explore the impact of the programme and inform future delivery. Taking a qualitative case study approach, young participants have a central voice, illuminated through the observations of the researcher during residential activities, and data generated during a focus group and telephone and on-line interviews. Findings demonstrate positive impact on the personal development and lifestyles of the Young Carer Health Champions, and their journey from beneficiary to pro-active shaper of services and policy

Challenges, Complexity, and Developments in Transition Services for Young People with Disabilities, Mental Health, and Long-Term Conditions: An Integrative Review

Transition to adulthood for young people is complex and multi-faceted, with additional hurdles for young people who have disabilities, long-term, or life-limiting conditions or mental health problems. The challenges in providing effective transition support are not new; researchers, policymakers, commissioners, and service providers have been grappling with the problem for several decades, with varying degrees of success. The aims of this integrative review were firstly to build on previous research to synthesize and evaluate recently published evidence. Secondly to provide an overview of the effectiveness of interventions (in one or a combination of health, social care, and education transitions) designed to support transition to adulthood in these groups of young people. A search of a range of databases retrieved published literature from January 2015 to January 2021 demonstrating global interest in the topic. Fifty-one articles were included following an appraisal of quality and eligibility. Qualitative, quantitative, mixed methods studies, and evidence synthesis were included. Some studies were clinically orientated whilst others examined the impact of the transition process, or utilized participatory approaches which give young service-users and families a voice. Transition between children's and adult health or care services as well as other life-course trajectories, such as life-skills development, education transitions, social inclusion and employability were evaluated. Thematic analysis and synthesis of articles retrieved in this review highlighted themes identified in previous reviews: timing of, and preparation for transition; perceptions and experience of transition; barriers and facilitators; transition outcomes. Additional themes included special considerations; dealing with complexity; advocacy, participation, autonomy, aspirations, and young people's rights; future work, research, and evaluation. Novel perspectives and diverse data sources contributed to holistic understanding of an ongoing priority for international policy, service development, and research: the complexity of providing effective transition support and achieving positive outcomes for young people with long-term and life-limiting health conditions, disabilities, and mental health difficulties

Enabling Young Service Users to Provide Feedback on their Experience: An Evaluation of the Pilot Implementation of Children and Young People Accessible Friends and Family Test in General and Dental Practices in NHS England South (South Central)

Involvement of service users in the delivery and development of services by providing unique feedback on their own experiences is a well-established feature of continuing improvement and quality enhancement. The Friends and Family Test (FFT) is a tool that supports the fundamental principle that people who use NHS services should have the opportunity to provide feedback on their experience, however children and young people are a group of key stakeholders whose voice has not been routinely sought. This article summarises the evaluation of a pilot project which aimed to implement and test the utility of a children and young people friendly version of the FFT in general and dental practices with a view to making it more widely available in the future. One exemplar Case Study is provided and findings lead to recommendations on how to ensure the FFT is continually made accessible to children and young people

Monkey’s Guide to Healthy Living and NHS Services An evaluation of the implementation of resources designed to support the learning of primary school aged children in England

A team of researchers from the Faculty of Education, Health and Community recently carried out a national evaluation project on behalf of the NHS Institute for Innovation and Improvement. Colleagues from across the faculty were involved in evaluating the impact of resources provided to every primary school in England. The resources were designed to enable teachers and health professionals to work together to help children learn about the NHS and the range of services they could access if they required acute of emergency care

Hearty Lives (Liverpool): a case study-based evaluation of a project designed to promote healthy eating and lifestyles in looked after young people

This article discusses the growing body of evidence on the importance of health for looked after children and young people and evaluates a project, Hearty Lives (Liverpool), designed to produce positive results. Unhealthy weight and lifestyles are significant issues for young people in care, whether living at home with parents under the supervision of social services, with foster carers or in residential homes, as there is a close relationship between food, nutrition and family connectedness. Following the principles of Appreciative Inquiry, the evaluation uses a case study approach to explore the learning and experiences of those involved in the intervention. The learning gained provides useful insights for practitioners and organisations who are interested in developing similar projects elsewhere

Blinding and sham control methods in trials of physical, psychological, and self-management interventions for pain (article II): a meta-analysis relating methods to trial results

Sham interventions in randomised clinical trials (RCTs) of physical, psychological, and self-management (PPS) therapies for pain are highly variable in design and thought to contribute to poor internal validity. It has, however, not been formally tested whether the extent to which sham controls resemble the treatment under investigation consistently affects trial outcomes, such as effect sizes, differential attrition, participant expectancy, and blinding effectiveness. Placebo or sham-controlled RCTs of PPS interventions of clinical pain populations were searched in twelve databases. The similarity of control interventions to the experimental treatment was rated across 25 features. Meta-regression analyses assessed putative links between employed control interventions, observed effect sizes in pain-related outcomes, attrition, and blinding success. The sample included 198 unique control interventions, dominated by manual therapy and chronic musculoskeletal pain research. Meta-analyses indicated small to moderate benefit of active treatments over control interventions, across subgroups of manual therapies, exercise, and rehabilitation, and psychological intervention trials. Multiple meta-regression modelling demonstrated that similarity between sham control and tested interventions predicted variability in pain-related outcomes, attrition, and blinding effectiveness. Influential were differences relating to the extent of intervention exposure, participant experience, and treatment environments. The results support the supposed link between blinding methods and effect sizes, based on a large and systematically sourced overview of methods. Challenges to effective blinding are, however, complex, and often difficult to discern from trial reports. Nonetheless, these insights have the potential to change trial design, conduct, and reporting and will inform guideline development

Very long-range isotope shifts in the proton NMR spectra of deuteriated haemins

Very long-range isotope shifts have been observed in the 500 MHz proton NMR spectra of several deuteriated haemins; these shifts are consistent with a redistribution of delocalised π spin density upon fractional resolution, owing to deuteriation, of the ground state orbital degeneracy of the low-spin iron(III) ion