this study has identified a number of issues people with MND and their carers face in the final stages of the illness, indicating some ways in which health, social and palliative care services could be improved or co-operate more effectively in order to better meet their needs.

There is need for a range of support services to be made available from which carers can select those most appropriate for them. Some support services are not always available for carers of this client group. There is a need for carers to access greater manual handling and training for physical care. Without sufficient support, carer burden can be overwhelming which may impact on the place of care of the patient and ultimately has implications for health and social care services.

Clinicians face nonadherence as the norm in everyday medical practice. The literature suggests a number of techniques that are likely to increase adherence when incorporated into regular clinical practices and routines. Central to these guidelines appears to be the doctor-patient relationship. For instance, the physician who uses understandable language, encourages open doctor-patient exchange, fosters participation by patients in their own medical care, and creates a friendly and efficient environment should increase the likelihood of adherence. Clinicians can also check adherence to medication regimens by requesting patients to bring in their pill bottles (or other prescription containers) for a discussion on how the medication appears to be working for them. This should elicit information from the patient about problems related to medication adherence. Since patient variables and social support affect adherence behaviors, eliciting information from patients about their understanding and beliefs regarding their particular illness and treatment, as well as enlisting the support of family and friends, may encourage adherence. Identifying what individual patients perceive as obstacles in following treatment regimens decreases their likelihood of nonadherence; these are difficulties that can be negotiated during the medical interview. Individualizing the treatment and minimizing its complexity may provide the solution that encourages adherent behavior. Frequent reeducation, reinforcement, and encouragement, as well as training in self-management and self-monitoring, will at the very least maximize the patient's comprehension of the illness and his or her motivation for adherence--an especially important requisite for living with a chronic condition. Some patients may even wish to openly solicit family and friends for help in the management and monitoring of their illness and treatment, and to structure their environment to support adherence. Education programs for the patient featuring handouts and pamphlets that provide information about the illness in written and illustrated form have been used successfully. Education programs such as patient-oriented package inserts to accompany the medications and brief written summaries of complex treatment plans may also be useful. The purpose of such patient education adjuncts to illness and treatment lie in the hope that they will enhance the likelihood of following treatment recommendations. Through their use, the reason for the treatment and its potential effectiveness will, it is hoped, be better understood (Ley 1988). Overall, significant advances have been made in adherence research. Measurement systems have become more finely tuned, and the definitions and criteria for adherent behaviors are more clear and precise.(ABSTRACT TRUNCATED AT 400 WORDS)

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Our objectives were to explore the personal perspectives of the diagnostic experience for people with ALS/MND and their family carers identifying issues that could impact positively or negatively on these experiences. We conducted a qualitative study with face-to-face interviews to capture experiences from 24 people with ALS/MND and 18 current family carers. Ten former family carers were also interviewed. The diagnostic experience was fraught with difficulties. There was failure to recognize the significance of some symptoms by patients, carers and primary and secondary care health professionals, which ultimately delayed diagnosis. Delivery of the diagnosis was frequently unsatisfactory despite international guidelines on the subject. Immediate post-diagnosis support often compared negatively to that provided for people with cancer. In conclusion, this study has identified a need for a more streamlined and empathetic diagnostic pathway for people with ALS/MND. Improvements to medical curricula are required to increase awareness of the condition and reduce the likelihood of diagnostic delays resulting from a failure to recognize the need for a neurological referral. Greater public awareness of the illness is also needed. Furthermore, delivery of the diagnosis should more closely adhere to established guidelines.

This paper examines diagnostic timelines for people suspected of having ALS/MND over a 20-year period, evaluates the impact of a 'fast track' diagnostic process and discusses typical causes of diagnostic delay. Key diagnostic timelines (dates of first symptom, diagnosis and death) were reviewed for people diagnosed between 1989 and 2008. Patients evaluated through a fast-track diagnostic process and those investigated through traditional neurology clinics were compared. Typical causes of diagnostic delay were investigated. Results showed that diagnostic timelines have been surprisingly consistent over this 20-year period. Time from first symptom to diagnosis hovered around 12 months, with the diagnosis typically being made around the midpoint (50% of total disease duration elapsed) of the disease pathway. The introduction of a fast-track process has not to date affected overall performance but has shortened times from referral to diagnosis. Diagnostic delays appear to be associated with clinical complexity and delays in referral, both within primary and secondary care services. In conclusion, more widespread implementation of fast-track processes could potentially reduce diagnostic delays. Educational interventions among health care professionals both in primary and secondary care may also help shorten diagnostic pathways.

For patients dying of cancer, there is an emphasis on giving choice regarding preferred location for care, with the option of dying at home, which is integral to UK government health initiatives such as the End of Life Care Programme. However, patients continue to be admitted to hospital in the terminal phase of their illness when they have expressed a desire to die at home. A qualitative study, using two audio tape-recorded focus group interviews, with a purposive sample of district nurses and community specialist palliative care nurses (19) was undertaken across two primary care trusts in the north west of England. Data were analysed using a thematic analysis approach. From a service provision perspective, the results reveal that poor discharge planning and co-ordination, difficulty in establishing additional equipment and services together with inadequate out of hours medical provision were all factors contributing to hospital admissions for patients with cancer in the last hours and days of life, and thus were barriers to dying at home.

Aims and objectives. To explore bereaved family carers' perceptions and experiences of a hospice at home service. Background. The increasing demand for the development of home-based end-of-life services is not confined to the western world; such services are also emerging in resource-poor countries where palliative care services are developing with limited inpatient facilities. Despite this growing trend, studies show a variety of interrelated factors, with an emphasis on the availability of informal carers and their ability to cope, which can influence whether terminally ill patients actually remain at home. A hospice at home service was developed to meet patients' and families' needs by providing individually tailored resources. Design. A qualitative study. Methods. Data were collected by semi-structured, digitally recorded interviews from 20 family carers who had experienced the service. Interviews were transcribed verbatim and a thematic approach adopted for analysis. Results. All participants reported a personal positive impact of the service. Family carers commented the service provided a valued presence, they felt in good hands and importantly it helped in supporting normal life. Conclusions. The impact of an individualised, targeted, hospice at home service using dedicated, palliative care trained, staff, is perceived positively by family carers and importantly, supportive of those with additional caring or employment commitments. Relevance to clinical practice. The emergence of hospice at home services has resulted in more options for patients and their families, when the increased amount of care a family member has to provide in these circumstances needs to be adequately supported, with the provision of a flexible service tailored to individual needs and delivered by appropriately trained staff. Key words: carers, home-care services, interviews, palliative careWhat does this paper contribute to the wider clinical community?• Family carers require individually tailored support.• Respite for family carers is vital.• Ongoing regular assessment of family carers needs is recommended. This is an open access article under the terms of the Creative Commons Attribution-NonCommercial-NoDerivs License, which permits use and distribution in any medium, provided the original work is properly cited, the use is non-commercial and no modifications or adaptations are made.