Planning for the end of children's lives--the lifetime framework.

AIM: This paper describes the development of 'a best practice framework', following review of a sample of notes of children known to the Lifetime Service, where the child has a non-malignant life limiting condition, to improve child and family engagement in the planning process at the end of life. BACKGROUND: There is very little literature about how to engage with families to decide end of life plans for children with life limiting conditions. METHOD: An audit of clinical case notes was followed by the development of 'a best practice framework' through a Delphi process involving clinical practitioners. RESULTS: The 3 x 3 framework is presented to aid communication with parents and children at this difficult time of decision-making. CONCLUSION: This new framework has been well received by both parents and practitioners, and its use will be audited in the future.

Dynamic footprint of sequestration in the molecular fluctuations of osteopontin.

The sequestration of calcium phosphate by unfolded proteins is fundamental to the stabilization of biofluids supersaturated with respect to hydroxyapatite, such as milk, blood or urine. The unfolded state of osteopontin (OPN) is thought to be a prerequisite for this activity, which leads to the formation of core-shell calcium phosphate nanoclusters. We report on the structures and dynamics of a native OPN peptide from bovine milk, studied by neutron spectroscopy and small-angle X-ray and neutron scattering. The effects of sequestration are quantified on the nanosecond- ångström resolution by elastic incoherent neutron scattering. The molecular fluctuations of the free phosphopeptide are in agreement with a highly flexible protein. An increased resilience to diffusive motions of OPN is corroborated by molecular fluctuations similar to those observed for globular proteins, yet retaining conformational flexibilities. The results bring insight into the modulation of the activity of OPN and phosphopeptides with a role in the control of biomineralization. The quantification of such effects provides an important handle for the future design of new peptides based on the dynamics-activity relationship.

Raves, drugs and experience: drug use by a sample of people who attend raves in Western Australia.

AIMS: To investigate the patterns of drug use among a sample of people in the rave scene in Perth, Western Australia and test the hypothesis that those who were less experienced in their drug use had less drug-related knowledge. DESIGN: Respondents were recruited through flyers in cafes, clothing and music stores and through snowballing. They were paid $20 for a 1 1/2 hour interview which comprised both qualitative and quantitative components. SETTING: Respondents were interviewed in cafes or restaurants, private dwellings, agencies or other public spaces. PARTICIPANTS: Eighty-three people who had been to a rave in the prior 6 months. Their mean age was 18.9 years (range 13-48) and 53% were male. MEASUREMENTS: Brief history of drug use, HIV risk behaviour, knowledge of drug-related harm and side effects experienced from drugs. FINDINGS: The group was unremarkable apart from their drug use. Ninety per cent of respondents had ever used LSD, 76% had used ecstasy and 69% had used amphetamines. Before, during or after the last rave attended 52% used cannabis and 35% had used each of amphetamines and LSD. Those who were less experienced in their drug use had less knowledge about drugs. Many respondents began using 'dance drugs' while they were still at school. CONCLUSIONS: Those with less drug-using experience may have less drug-related knowledge and may be at greater risk of harm. Strategies should be implemented which involve people in the scene, promoters, health workers and the authorities to reduce drug-related harm associated with raves and other dance events.

Audit of neonatal screening programme for phenylketonuria and congenital hypothyroidism.

The performance of the neonatal screening programme was audited against clinical standards in the Bath clinical area from 1 April 1994 to 31 March 1996. The standards and policy were agreed by local service provider representatives of the screening and were audited, using laboratory and child health computer systems and medical records. Two annual reports were produced with recommendations for improvement communicated to representatives of the service. Thus the first audit loop has been completed. The audit shows that the coverage of the service is excellent, with all eligible babies being offered screening; those with congenital hypothyroidism or phenylketonuria receive appropriate treatment by the 28 day standard. The process works extremely well, although areas for improvement have been identified, to increase the efficiency of the service. It is concluded that an effective and efficient audit cycle can be established, to monitor and improve the performance of the neonatal screening service.

The contribution of music vs instructions in the Musical Mood Induction Procedure.

The relative contribution of the instructions and the music to the effects of the Musical Mood Induction Procedure (MMIP) were investigated. Using an experimental procedure which minimised covert experimenter bias, subjects performed under both elation and depression mood inductions in one of four conditions: music present or absent by mood change instructions present or absent, using a crossover design. Results indicated that instructions were both necessary and sufficient to produce change on mood sensitive measures. Mood change effects were reduced by controlling for the effect of subjects who responded so as not to 'louse-up' the experiment. The MMIP seems to be much less musical than the name implies. Further research is needed to determine which aspects of the instructions contribute most to the changes on mood sensitive measures.

Harm reduction in Australia: has it worked? A review.

The literature is reviewed with a view to determining what evidence exists for the success of Australia's policy of harm minimization in relation to drug use. While there are relatively few examples of strategies which can unequivocally be said to have succeeded, there are many more for which the evidence is suggestive. While there has been a considerable mushrooming of research since the advent of the National Campaign on Drug Abuse, it would appear that little of this has measured the extent to which harm has been reduced. The National Drug Strategy would benefit from more policy-orientated research which measures drug-related harm if it is to be, as claimed, research driven.

Dope busts in the West: minor cannabis offences in the Western Australian criminal justice system.

Proponents of cannabis law reform argue that many people who are convicted for minor cannabis offences have no prior criminal conviction and are otherwise law-abiding citizens. This study of criminal justice system data in a strict prohibition jurisdiction (Western Australia) found that over 10% of all charges and 85% of all drug charges were for cannabis. Approximately 90% of these were for minor offences. Over 40% of those charged with cannabis possession/use as their most serious offence had never been arrested for any prior offence. Almost half of those first arrested for cannabis possession/use had not been arrested up to 10 years later. Younger first-time arrested cannabis users were more likely to be re-arrested than older offenders. Almost all adult cannabis offenders who went to court were convicted and fined. Nearly 95% of those imprisoned for possession/use of cannabis were gaoled for fine default. The findings accord with earlier research showing that the vast majority of these offenders are, in all respects apart from their cannabis use, a non-criminal section of the community.

Polydrug use at raves by a Western Australian sample.

This study aimed to quantify the patterns of drug use among a group of participants in the rave scene in Perth, Western Australia. Interviews were conducted with 83 people who had recently been to a 'rave'. The study incorporated a semi-structured qualitative interview and a structured quantitative questionnaire. This paper reports on the quantitative data collected concerning patterns of drug use in association with the last rave attended. Use of 'dance drugs' (ecstasy, amphetamines or LSD) was reported by 86.8% of the 76 respondents who had used at least one drug in association with their last rave. Nearly 80% of these had also used at least one other drug on this occasion (mean number used = 2.4). Cannabis and inhalants were the drugs most commonly combined with the 'dance drugs', several respondents used more than one 'dance drug' concurrently and 16.7% had used alcohol. It seems that a significant proportion of those using 'dance drugs' in association with raves and dance parties are mixing these drugs with other substances despite harm reduction advice to the contrary. The need for more research in this area is discussed.

The relationship between age and risky injecting behaviours among a sample of Australian people who inject drugs.

BACKGROUND: Limited evidence suggests that younger people who inject drugs (PWID) engage in high-risk injecting behaviours. This study aims to better understand the relationships between age and risky injecting behaviours. METHODS: Data were taken from 11 years of a repeat cross-sectional study of sentinel samples of regular PWID (The Australian Illicit Drug Reporting System, 2001-2011). Multivariable Poisson regression was used to explore the relationship between age and four outcomes of interest: last drug injection occurred in public, receptive needle sharing (past month), experiencing injecting-related problems (e.g. abscess, dirty hit; past month), and non-fatal heroin overdose (past six months). RESULTS: Data from 6795 first-time study participants were analysed (median age: 33 years, interquartile range [IQR]: 27-40; median duration of injecting: 13 years [IQR: 7-20]). After adjusting for factors including duration of injecting, each five year increase in age was associated with significant reductions in public injecting (adjusted incidence rate ratio [AIRR]: 0.90, 95% confidence interval [CI]: 0.88-0.92), needle sharing (AIRR: 0.84, 95% CI: 0.79-0.89) and injecting-related problems (AIRR: 0.96, 95% CI: 0.95-0.97). Among those who had injected heroin in the six months preceding interview, each five year increase in age was associated with an average 10% reduction in the risk of heroin overdose (AIRR: 0.90, 95% CI: 0.85-0.96). CONCLUSIONS: Older PWID report significantly lower levels of high-risk injecting practices than younger PWID. Although they make up a small proportion of the current PWID population, younger PWID remain an important group for prevention and harm reduction.

How satisfied are parents of pre-school children who have special needs with the services they have received? A consumer survey.

The parents of 41 pre-school children with special needs volunteered to participate in a consumer survey to ascertain their satisfaction with the services they had received and how these could be improved. The survey produced an overall high level of satisfaction, although parents felt they had not received as much information as they wanted on their child's condition (29%), available help for their family (44%), financial benefits (61%), or information about their child's future (61%). Families also felt that they had not received enough family support (43%), and that professionals regularly did not understand their concerns (32%). Ways in which these issues could be addressed are discussed, along with more general issues of such consumer satisfaction surveys.

Parental experience of services when their child requires long-term ventilation. Implications for commissioning and providing services.

AIMS: The aims of the study were to: (1) describe the families experience of the services they receive; (2) describe the care packages associated with long-term ventilation; and (3) identify both problems and good practice. SETTING: South West Region of England, 2001. METHODS: A cross-sectional survey of parents whose children had been ventilated for longer than 3 months. Fifteen families were interviewed. RESULTS: The following issues were identified: significant delays in hospital discharge [mean duration 513 days (range 14-1460 days)]; organizational fragmentation in commissioning services (12/15); problems with supply and maintenance of equipment (10/15); significant social morbidity-reduced family incomes, housing and social isolation (9/15); difficulties with respite care (5/15); loss of employment (9/15 mothers); and problems with access to education (12/15). CONCLUSIONS: There were significant delays in discharge from hospital largely caused by an inability to organize and fund provision in community settings. A wide variation in provision, not related to needs, was observed between families. Effective early discharge from hospital was more likely to be achieved where community children's nursing teams were already in existence. Adequate respite care was rarely available for these families.

Should we conduct a trial of distributing naloxone to heroin users for peer administration to prevent fatal overdose?

Heroin overdose is a major cause of death among heroin users, and often occurs in the company of other users. However, sudden death after injection is rare, giving ample opportunity for intervention. Naloxone hydrochloride, an injectable opioid antagonist which reverses the respiratory depression, sedation and hypotension associated with opioids, has long been used to treat opioid overdose. Experts have suggested that, as part of a comprehensive overdose prevention strategy, naloxone should be provided to heroin users for peer administration after an overdose. A trial could be conducted to determine whether this intervention improves the management of overdose or results in a net increase in harm (by undermining existing prevention strategies, precipitating naloxone-related complications, or resulting in riskier heroin use).