Top PDF Education, Health and Care plans: A qualitative investigation into service user experiences of the planning process

34 Figure 3.2 Case study: Taking responsibility for liaising with specialists 3.3. A need for greater transparency about reasons for delays Although only one in five parents and young people (20%) interviewed in the national survey reported that the process of getting the plan took more than 10 months, many of the parents interviewed in below average-rated local authorities during the qualitative phase reported that the process took this long. A few parents recognised that the length of time taken was partly because they had requested amendments or gone to tribunal over certain elements, and therefore felt that the time taken had had a positive impact on the quality of plan. However, for many parents it was unclear if the local authority was progressing their EHC plan at all during this period. These parents felt that a wait of more than 10 months was unsatisfactory because, during this time, they were acutely aware that their child was without the provision that they needed for their current and future development, and interpreted the delays as a lack of interest or concern for the child’s wellbeing. Most had been made aware of the 20-week timescale by their local authority or school and therefore expected the process to take some time, but they were surprised to find that provision had not been put in place during the same academic year.

34 Figure 3.2 Case study: Taking responsibility for liaising with specialists 3.3. A need for greater transparency about reasons for delays Although only one in five parents and young people (20%) interviewed in the national survey reported that the process of getting the plan took more than 10 months, many of the parents interviewed in below average-rated local authorities during the qualitative phase reported that the process took this long. A few parents recognised that the length of time taken was partly because they had requested amendments or gone to tribunal over certain elements, and therefore felt that the time taken had had a positive impact on the quality of plan. However, for many parents it was unclear if the local authority was progressing their EHC plan at all during this period. These parents felt that a wait of more than 10 months was unsatisfactory because, during this time, they were acutely aware that their child was without the provision that they needed for their current and future development, and interpreted the delays as a lack of interest or concern for the child’s wellbeing. Most had been made aware of the 20-week timescale by their local authority or school and therefore expected the process to take some time, but they were surprised to find that provision had not been put in place during the same academic year.

EHC plans and the accompanying needs assessment process were introduced as part of the Children and Families Act 2014. The Act, along with an accompanying SEND Code of Practice, sets out how local authorities must ensure the delivery of EHC plans. In 2016, a national survey commissioned by the Department for Education (DfE) found variations in how EHC plan recipients experienced the EHC planning process across different local authorities. 1 Based on these results, DfE commissioned two further research projects: a qualitative investigation of user experiences of the EHC planning process, and this multivariate analysis of factors affecting satisfaction with the EHC planning process.

The national survey results show that the EHC assessment and planning process and the resultant plans were working for the majority who received plans in 2015. The positive overall satisfaction rating based on the whole sample was broadly consistent in important subgroups including those in the most deprived areas, ethnic minorities and for those with different types of SEN. There were less positive results for some questions which tended to reflect higher levels of neutral or ‘don’t know’ responses rather than high proportions of negative answers. The views of these ‘neutral or dissatisfied’ families indicate where further progress can be made. For example, when answering an open question about what could have gone better, the most commonly raised points related to duration of process, meeting the child/young person’s needs and staff knowledge and advice.

• unless input from young people can be captured in a meaningful way then it runs the risk of being tokenistic and consideration must be given to the ethics of involving young people in research 14 . 92. We asked parents how they wanted to be consulted. Several told us they wanted to have a conversation to talk through their experiences, and put their opinions in the context of their family’s circumstances. Others expressed a preference for a survey approach, which was quick and easy to fit into their lives. The majority of those who responded to the online survey said they preferred to be contacted by the service via email. Some parents suggested that feedback on family experience should be captured during the EHC process itself, and that they would value their opinions being sought as the process progressed (to improve recall and address any issues in real time). However, a number of parents wanted to speak to someone who was independent and not involved in making decisions about their family.

Conclusions We identified six prerequisites for effective user-led in- volvement in physical health care discussions within mental health care planning and organised them into a conceptual framework of confirmatory and novel themes. Our data revealed that user-led involvement in physical health care discussions is an interpersonal process that if facilitated correctly, should empower service users and professionals to work together effectively. Improvements in physical health discussions within the care planning process, and the delivery of integrated care, demand action at individual, team and organisational levels. A conceptual framework is presented which provides an evidence-based foundation for service level improvement. In our future work, service user and carer centred items will be developed for a new PROM to quantify and move towards implementing ser- vice user and carer led involvement in practice.

Specifically, the cognitive testing explored with parents and young people: 4 This focus on whether parents and young people had experienced specific elements set out in the Code of Practice was in part informed by the findings of Skipp and Hopwood (2016). Their qualitative study, Mapping user experiences of the Education, Health and Care process, established that parents tended to score individual components of the process (referral, assessment etc.) differently to how they scored their satisfaction with the process overall. It also found that parents’ overall satisfaction varied according to their degree of understanding of what the process should be like – meaning that parents could express high levels of satisfaction with an experience of the process that did not appear to be in line with the Code.

Eye health is seen as a specialist area of healthcare, as many visually impairing conditions, such as cataract or glaucoma, cannot be easily diagnosed and treated in primary care facilities, particularly in resource poor set- tings. Therefore, the opinions on the added value of primary eye care and the benefits of task shifting in low in- come countries are often divided. The proponents of the primary eye care approach identify two main pathways through which primary care can contribute to the elimin- ation of avoidable blindness. [9] First, primary health facil- ities are located closer to and have better interactions with the communities. Therefore, primary health workers (PHWs), if trained and equipped, are in good position to raise awareness about eye diseases and identify and refer patients with latent eye conditions early on to prevent complications. Secondly, PHWs can treat common simple eye conditions, such as conjunctivitis or minor trauma at primary level, and prevent large numbers of patients travel- ling to distant and often overstretched secondary hospitals saving both patient and provider time and costs. These two propositions however are often thought to be hypothetical, as there is barely any high quality evidence demonstrating positive impact of task shifting on either service delivery or population eye health in low income settings. In addition, there is limited evidence on the process of task shifting or on the opportunities and challenges of integration of eye care tasks within wider primary health systems.

Lindsey Cree 1 , Helen L. Brooks 1* , Kathryn Berzins 2 , Claire Fraser 1 , Karina Lovell 1,3 and Penny Bee 1 Abstract Background: Formal recognition and involvement of carers in mental health services has been the focus of recent policy and practice initiatives as well as being supported by carers themselves. However, carers still report feeling marginalised and distanced from services. A prominent theme is that that they are not listened to and their concerns are not taken seriously. Compared to service user views, the reasons underpinning carers ’ dissatisfaction with care-planning procedures have been relatively neglected in the research literature, despite the substantial and significant contribution that they make to mental health services. The aim of the study was to explore carers ’ experiences of the care planning process for people with severe mental illness.

Engaging with the public is really different because it’s quite difficult for them to engage on a positive front. So if we hold a listening event it doesn’t mobilise the peo- ple largely who had a good or an okay experience of the trust. It will very often mobilise those people who have [negative experiences] (CQC staff, acute, area B). Obviously at these meetings, you know, people have a range of issues, but my experience is that, whilst you get an odd patient who has a very personal axe to grind, generally people put very sensible points and you have a worthwhile exchange. But, how that translates into the inspection process, remains rather mysterious as far as I’m concerned. (Voluntary organization 2, area A)

The successful implementation of any new health ini- tiative necessitates that all stakeholders share and can reach consensus on a common set of ideas regarding its role, scope, purpose and meaning (Pitt et al. 2007). Con- cepts of user involvement at the systems level have become synonymous with concepts of shared decision- making and patient empowerment, but user-led definitions of care planning involvement remain sparse. Where users’ views have been explored these have tended to be via small scale, qualitative studies focused on a single facet of the decision-making process (Goss et al. 2008, Rogers & Dunne 2013). There thus persists an important knowledge gap between the more nebulous ‘top-down’ concepts advocated by mental health policy and the power and influence of individual stakeholders in determining exactly what user-involved care planning should entail. The work presented herein seeks to address this gap.

Consumerism infused the health policy of many countries in the 1980s as part of a market ideology that promoted individual patient choice and acknowledged the importance of healthcare satisfaction ( Tait and Lester, 2005 ). In the United Kingdom, such concepts were gradually developed and expanded to include an acknowl- edgement of patients as experts in their own illness and thus an element of reciprocal responsibility in care planning and treatment decisions ( Hickey and Kipping, 2002 ). Today, user and carer involvement is an established policy mandate, most recently consolidated by a new personalisation agenda for adult social care across England and Wales ( Department of Health, 2008; Healthcare Commission, 2008b; HM Government, 2011; Secretary of State for Health, 2012 ). Similar developments have occurred overseas, with international research and policy imperatives upholding the importance of participatory mental healthcare and its perceived role in improving the culture and responsiveness of services and the quality of care that users receive ( Commonwealth of Australia, 2009; Daremo and Haglund, 2008; Goodwin and Happell, 2008 ). The central and unfailing premise of modern health policy is that users and carers are major stakeholders in service delivery and, as such, must be regarded as participants rather than simply recipients of mental health care. Small scale studies suggest that involving service users and carers in the planning and delivery of care can have positive effects on service and individual outcomes ( Simpson and House, 2002; Thornicroft and Tansella, 2005 ); reducing rates of enforced admission and treatment for people with severe mental illness ( Henderson et al.,

Conversely, there were others who suggested it should start as soon as possible, therefore avoiding conversation during crisis situations. Examples of parallel planning as part of the standard care and ACP process, which worked well for pregnant mothers, have been reported, supporting the guidance for perinatal pathway for babies with palliative care needs [29]. The study also reported on suggestions to help the process of the ACP. The value of conducting the planning process in stages and considering the environment where the conversation is held being important. These factors were identified as helping the process both for the health care professional but also for families. Clearly timely ACP, with involve- ment of the appropriate team from specialist palliative care or a children’s hospice for parallel planning, suggest that this will avoid families having difficult conversations at a crisis time. Good ACP is essential for professionals to support the wishes of the child and family, whilst fa- cilitating coordinated care, which will ultimately lead to the best person-centred care for the child and experi- ence for the family.

I then applied for and was appointed to a secondment opportunity, two days a week as the Schools Service User and Carer Involvement lead from 2007 – 2010. This was linked to the Assessment in Learning in Practice Setting (ALPS) Centre for Excellence in Teaching and Learning (CETL) that aimed to ensure that students graduating from courses in health and social care are fully equipped to perform confidently and competently at the start of their professional careers so improving standards of care ( http://www/alps-cetl.ac.uk ). The ALPS programme had a specific service user and carer involvement stream. This included work with a range of partners from 16 professions at 5 local Universities, alongside service users and carers. The secondment enabled significant progress with service users and carer involvement within the school. Additionally, I professionally represented the school, taking a prominent role regionally and nationally, presenting at a number of conferences. As a result of this I am an active participant in on-going collaborative research projects with Leeds Institute of Medical Education and the Patient and Carer Voice Collaborative Network. Our collaborative work in this area resulted in us being shortlisted for the Times Higher Education Awards 2011 in the outstanding contribution to the local community category.

professional pathway that has rejected the paternalistic, bureaucratic systems of working in acute health care settings to adopt a more personalised, client centred approach to care in the community. Appendix 3 details my career narrative. My own agency has been shaped and influenced by these personal and professional experiences. Significantly, being brought up in a single parent household, with two older sisters and a younger brother with a complex learning disability, reliant on state benefits and all the negatives connotations that this attracted influenced my dimensions of iterations and subsequent actions. This experience influenced my decision to pursue a career in nursing. After working in acute and community settings for a number of years I came to realise that as an individual or member of a small team the circle of influence and ability to make a difference was limited. Whilst this was significant, important and rewarding, it became frustrating due to the negative encounters that the service users and I experienced on a regular basis, when in contact with health and social care practitioners and led to a desire to influence a wider circle.

The final themes related to service availability and inter-agency working. For adults, long waiting times for psychological therapy, funding cuts to voluntary sector services, and decisions around which service should take responsibility, presented challenges for mental health professionals. This was exacerbated by the social and legal instability experienced by trafficked patients, includ- ing dealing with immigration issues and being rehoused in a different borough. For children, issues were more gener- ally concerned with disagreements between professionals regarding safety, as well as some difficulties deciding which service was responsible for care where children had moved between boroughs or where their age had been disputed. Age assessments can be experienced as very

In addition, local residents may benefit from having a common understanding of current service activity and capacity, burden of disease, geographical environment, health data, budgets, health system regulations, human resources and proposed solutions. HHSs should communicate in a transparent manner quantitative and qualitative information that informs service changes. Other health services such as general practice, Queensland Ambulance Service, Medicare Locals, local government, private providers and non-government services may also share information. If data is not available the specific reasons for this should be made clear. An example of this may be data that could identify individual patients. Community members may wish to engage individuals or organisations to support them in understanding information provided to them.

4. Rezaei AM. Health and treatmens network actions in health education in Ilam. Journal of Ilam University of Medical Sciences 2001; 9(31): 24-9. [In Persian]. 5. Mohammad Pour A, Dehgan Naieri N. The survey of the patient educational need on discharge phase in Gonabad health and treatment centers. Horizon of Medical Sciences 2007; 12(4): 34-9. [In Persian].

Implications Specific training for individual care providers might focus on exploring patients’ expectations, difficulties, needs and worries, as well as being sensitive to the ways in which patients from other cultures and health care systems may experience a new health care system. Care providers could put more effort into learning patients’ beliefs about their illness and its management, because patients may not always spontaneously share this information. They should be aware of the effects when patient beliefs are not well explored, resulting in patients who do not feel taken seriously, who feel low trust in care providers or believe they received low quality care. Furthermore, to increase the adequate exchange of information care pro- viders need to be trained to work with professional inter- preters, and instructed in other culturally competent behaviors [28-30]. That this is still important shows a study by Diamond et al. that revealed that medical resi- dents found it easier to “get by” without a professional interpreter even though they were aware of negative implications for the quality of care [31]. In addition, training future doctors need to diminish the effects of racism or unconscious bias related to clinical decision- making [32]. Moreover, patients could be better informed about what they can expect from care and treatment: for example, hospitals should have signage and informative

ACKNOWLEDGEMENTS We would like to thank the participants who took the time to complete the questionnaire, and the PHOs and general practices for their time and support. We would also like to acknowledge the input of our wider Multimorbidity project team. We would like to thank Statistics New Zealand and the Ministry of Health for access to the NZHS data. Access to the NZHS data used in this study was provided by Statistics New Zealand under conditions designed to give effect to the security and confidentiality provisions of the Statistics Act 1975. The opinions presented are those of the authors and do not necessarily represent an official view of Statistics New Zealand or the Ministry of Health. This project was funded by the New Zealand Health Research Council (HRC 14/173). The project design was initiated by the authors, and the funding body has had no involvement into the conduct or reporting of the study.