Grown-up congenital heart (GUCH) disease: current needs and provision of service for adolescents and adults with congenital heart disease in the UK

This report addresses the needs and problems of grown-up congenital heart (GUCH) patients and makes recommendations on organisation of national medical care, training of specialists, and education of the profession. The size of the national population of patients with grown-up congenital heart disease (GUCH) is uncertain, but since 80-85% of patients born with congenital heart disease now survive to adulthood (age 16 years), an annual increase of 2500 can be anticipated according to birth rate. Organisation of medical care is haphazard with only three of 18 cardiac surgical centres operating on over 30 cases per annum and only two established specialised units fully equipped and staffed. Not all grown-ups with congenital heart disease require the same level of expertise; 20-25% are complex, rare, etc, and require life long expert supervision and/or intervention; a further 35-40% require access to expert consultation. The rest, about 40%, have simple or cured diseases and need little or no specialist expertise. The size of the population needing expertise is small in comparison to coronary and hypertensive disease, aging, and increasing in complexity. It requires expert cardiac surgery and specialised medical cardiology, intensive care, electrophysiology, imaging and interventions, "at risk" pregnancy services, connection to transplant services familiar with their basic problem, clinical nurse specialist advisors, and trained nurses. An integrated national service is described with 4-6 specialist units established within adult cardiology, ideally in relation or proximity to university hospital/departments in appropriate geographic location, based in association with established paediatric cardiac surgical centres with designated inpatient and outpatient facilities for grown-up patients with congenital heart disease. Specialist units should accept responsibility for educating the profession, training the specialists, cooperative research, receiving patients "out of region", sharing particular skills between each other, and they must liaise with other services and trusts in the health service, particularly specified outpatient clinics in district and regional centres. Not every regional cardiac centre requires a full GUCH specialised service since there are too few patients. Complex patients need to be concentrated for expertise, experience, and optimal management. Transition of care from paediatric to adult supervision should be routine, around age 16 years, flexibly managed, smooth, and explained to patient and family. Each patient should be entered into a local database and a national registry needs to be established. The Department of Health should accept responsibility of dissemination of information on special needs of such patients. The GUCH Patients' Association is active in helping with lifestyle and social problems. Easy access to specialised care for those with complex heart disease is crucial if the nation accepts, as it should, continued medical responsibility to provide optimal medical care for GUCH patients.     

Needs assessment and review of services for people with inherited metabolic disease in the United Kingdom

Summary Patients with inherited metabolic diseases need to be viewed as a specialist care group because of the range of expertise required for their diagnosis and management. In the UK, professional concerns have been expressed that existing services would struggle to meet needs resulting from new diagnostic and screening techniques, new treatments and increased survival. This needs assessment and service review was therefore undertaken at the request of the Joint Committee on Medical Genetics, guided by a national multidisciplinary stakeholder group. All 24 specialist centres identified in the UK provided evidence for the review. Approximately 10 000 patients are known to services and their annual number of referrals is increasing. Possible shortfalls in the number of patients attending specialist services were estimated for the UK as a whole by extrapolating the results from the region with the most comprehensive service and comparing this with known patient numbers. This analysis suggests that a further 5600 children and 3300 adults are not looked after by specialist services or have been lost to follow-up. The comprehensiveness of services was assessed using a new scoring system for clinical and organizational criteria. There are major regional disparities in the comprehensiveness of service provision across the country, with some regions having little or no specialist service. Unmet need will increase as a result of new diagnostic technologies, more effective treatments and new neonatal screening programmes; specialist services need to be developed and expanded to provide a comprehensive and more equitable service to the UK population. Communicating editor: Bridget Wilcken Competing interests: None declared     

A Process Approach to Women's Use of Alcohol Services

The use of specialist alcohol services by women and the reasons given in the literature for women's apparent reluctance to use these services are reviewed. It is argued that, to provide an appropriate response to the rise in the harmful use of alcohol by women, we need to know more about women with drinking problems and about the events which result in some women contacting specialist alcohol services for help while others do not. It is suggested that future research might usefully adopt a process approach to the study of the use of services, taking contact with a specialist alcohol service as one stage in a help-seeking career.     

Transportation vulnerability as a barrier to service utilization for HIV-positive individuals

Research suggests that transportation vulnerability can negatively impact adherence to HIV-related medical treatment. Moreover, transportation can be a barrier to accessing ancillary services which can increase positive health outcomes for HIV-positive individuals. This study examines transportation vulnerability and its impact on HIV-related health and ancillary service utilization in the Mid-South Region. Focus groups and interviews were conducted with service providers and HIV-positive individuals, and survey data were collected from HIV-positive individuals (N=309) using the five A's of access to frame transportation vulnerability: availability, accessibility, accommodation, affordability, and acceptability. Study results indicate that transportation vulnerability can present significant barriers to service utilization for HIV-positive individuals, including insufficient transportation infrastructure, incompatible fit between transportation and health systems, and insensitivity to privacy issues. One consequence of transportation vulnerability is reliance upon weaving together multiple modes of transport to access care and ancillary services, creating additional barriers to service utilization and medical adherence. The research team recommends more investment in public transit systems, expanded services, and innovative approaches to solving procedural problems.     

Diabetes specialist nurses and role evolvement: a survey by Diabetes UK and ABCD of specialist diabetes services 2007

Aims To review the working practices of UK diabetes specialist nurses (DSNs), specific clinical roles, and to examine changes since 2000. Methods Postal questionnaires were sent to lead DSNs from all identifiable UK diabetes centres (n = 361). Quantitative and qualitative data were collected on the specific clinical roles, employment, and continual professional development of hospital and community DSNs, Nurse Consultants and Diabetes Healthcare Assistants. Results 159 centres (44%) returned questionnaires. 78% and 76% of DSNs plan and deliver education sessions compared with 13% in 2000 with a wider range of topics and with less input from medical staff. 22% of DSNs have a formal role in diabetes research compared with 48% in 2000. 49% of Hospital DSNs, 56% of Community DSNs and 66% of Nurse Consultants are involved in prescribing. 55% of DSNs carry out pump training, 72% participate in ante‐natal and 27% renal clinics. 90% of services have independent diabetes nurse‐led clinics. 93% of services have a dedicated Paediatric DSN. The mean number of children under the care of each PDSN is 109 (mode 120), which exceeds Royal College of Nursing recommendations. 48% of DSNs have protected time for continuing professional development of staff and 15% have a protected budget. One third of DSNs are on short‐term contracts funded by external sources. Conclusions The DSN role has evolved since 2000 to include complex service provision and responsibilities including specialist clinics, education of healthcare professionals and patients. The lack of substantive contracts and protected study leave may compromise these roles in the future.     

Variability in the organisation and management of hospital care for COPD exacerbations in the UK

Previous smaller UK audits have demonstrated wide variation in organisation, resources, and process of care for acute chronic obstructive pulmonary disease (COPD) admissions. Smallest units appeared to do less well. UK acute hospitals supplied information on (1) resources and organisation of care, (2) clinical data on process of care and outcomes for up to 40 consecutive COPD admissions. Comparisons were made against national recommendations. Eight thousand and thirteen admissions involved 7529 patients from 233 units (93% of UK acute Trusts). Twenty-six percent of units had at most one whole-time equivalent respiratory consultant while 12% had at least four. Thirty percent patients were admitted under a respiratory specialist and 48% discharged under their care whilst 28% had no specialist input at all. Variation in care provision was wide across all hospitals but patients in smaller hospitals had less access to specialist respiratory or admission wards, pulmonary rehabilitation programs, specialty triage or an early discharge scheme. Six percent of units did not have access to NIV and 18% to invasive ventilatory support. There remains wide variation in all aspects of acute hospital COPD care in the UK, with smaller hospitals offering fewest services. Those receiving specialist input are more likely to be offered interventions of proven effect. Management guidelines alone are insufficient to address inequalities of care and a clear statement of minimum national standards for resource provision and organisation of COPD care are required. This study provides a unique insight into the current state of care for patients admitted with COPD exacerbations in the UK.     

Association of British Clinical Diabetologists (ABCD) and Diabetes‐UK survey of specialist diabetes services in the UK, 2006. 1. The consultant physician perspective

Aims To identify the views and working practices of consultant diabetologists in the UK in 2006–2007, the current provision of specialist services, and to examine changes since 2000. Methods All 592 UK consultant diabetologists were invited to participate in an on‐line survey. Quantitative and qualitative analyses of responses were undertaken. A composite ‘well‐resourced service score’ was calculated. In addition to an analysis of all respondents, a sub‐analysis was undertaken, comparing localities represented both in 2006/2007 and in 2000. Results In 2006/2007, a 49% response rate was achieved, representing 50% of acute National Health Service Trusts. Staffing levels had improved, but remained below recommendations made in 2000. Ten percent of specialist services were still provided by single‐handed consultants, especially in Northern Ireland (in 50% of responses, P = 0.001 vs. other nations). Antenatal, joint adult–paediatric and ophthalmology sub‐specialist diabetes services and availability of biochemical tests had improved since 2000, but access to psychology services had declined. Almost 90% of consultants had no clinical engagement in providing community diabetes services. The ‘well‐resourced service score’ had not improved since 2000. There was continued evidence of disparity in resources between the nations (lowest in Wales and Northern Ireland, P = 0.007), between regions in England (lowest in the East Midlands and the Eastern regions, P = 0.028), and in centres with a single‐handed consultant service (P = 0.001). Job satisfaction correlated with well‐resourced service score (P = 0.001). The main concerns and threats to specialist services were deficiencies in psychology access, inadequate staffing, lack of progress in commissioning, and the detrimental impact of central policy on specialist services. Conclusions There are continued disparities in specialist service provision. Without effective commissioning and adequate specialist team staffing, integrated diabetes care will remain unattainable in many regions, regardless of reconfigurations and alternative service models.     

Setting up a clinical psychology service for commercial sex workers

The objective of this study was to provide what we believe to be the first report of the establishment of a clinical psychology service to provide accessible psychological assessment, intervention and crisis support, integrated within an existing East London sexual health clinical and outreach service for commercial sex workers (CSWs). Data are presented on referral patterns, demographics, presenting issues to clinical psychology, interventions and outcomes for the first year of the service. Women presented with a range of psychosocial needs. Psychological interventions included direct therapy, signposting to other services and consultation with staff. We concluded that this flexible model of service provision improves access to mental health services within the context of a specialist sexual health and outreach service for CSWs. The provision of a named, female clinical psychologist who provides both the clinical sessions and attends outreach has been an important factor in developing trust and familiarity, leading to better uptake of the clinical psychology service.     

British Association of Stroke Physicians: benchmarking survey of stroke services

BACKGROUND: the National Service Framework for Older People requires every general hospital which cares for stroke patients to introduce a specialist stroke service by 2004. OBJECTIVE: to describe the organisation and staffing of specialist hospital-based stroke services in the UK. DESIGN: a national postal survey of consultant members of the British Association of Stroke Physicians (BASP) seeking details of the provision of neurovascular clinics, acute stroke units (ASUs), stroke rehabilitation units (SRUs), and the organisation and staffing of these services. RESULTS: the response rate was 91/126 (72%). Fifty-four neurovascular clinics, 40 ASUs and 68 SRUs were identified. Neurovascular clinics used a number of strategies to maintain rapid access and 30 (56%) were run by a single consultant. Only 50% ASUs usually admitted patients within 24 h of stroke. As the number of beds available on ASUs and SRUs did not reflect the total number of stroke in-patients, 21 (53%) ASUs and 45 (79%) SRUs had admission criteria. Training opportunities were limited: 37% ASUs and 82% SRUs had no specialist registrar. The therapy sessions (1 session=half a day) available per bed per week on a SRU were: physiotherapy 0.8; occupational therapy 0.6; speech and language therapy 0.25. CONCLUSIONS: significant development is needed to achieve the NSF target for hospital-based stroke services as few Trusts currently have all components in place and even when available not all stroke patients have access to specialist care. Stroke specialists will be required to run these services but training opportunities are currently limited. Stroke unit therapy staffing levels were lower than was available in randomised controlled trials.     

Rural HIV/AIDS Services

Abstract

An exploratory study to investigate the needs of those living with HIV disease to determine related service challenges was conducted in 1997 and replicated in 1999. This study utilized qualitative and quantitative measures, surveyed both individuals who are living with HIV disease and HIV/AIDS service providers in predominately rural counties of a midwest -ern state with a low incidence of HIV infection. Respondents' perceptions were solicited regarding existing services in the areas of: (1) awareness; (2) satisfaction; and (3) gaps and barriers. Findings indicate: (1) the critical role AIDS service organizations have in rural service delivery; (2) service awareness is much stronger among those living with HIV disease than HIV/AIDS service providers; (3) satisfaction with available services is growing; and (4) there is a widening gap between important needs and available services.     

Integrating health information: a case study of a health information service for thalidomide survivors

Thalidomide damage comprises a range of rare and complex disorders rarely encountered in normal clinical practice. Specific problems associated with the condition include chronic pain and medical procedures including taking blood. The benefit of international networking and the findings of recent research are mentioned. This leads to the establishment of four key requirements for a specialist database, and four priority issues to be included in the planning of a health information service for this group, of which the creation of a database is first. The other three priority issues are the creation of a web-based delivery system, the need to consolidate the specialist information available, and the need to create a system for evaluating and approving the information to be delivered. System design and implementation are discussed and key tasks identified, showing how the four key components of the service will be developed. Difficulties encountered have included decisions about standards to be adopted and identifying commercial organizations capable of completing different aspects of the work. This study illustrates the relevance and possibility of specialist reference centres for other rare disease groups.     

Community-based health services for people with HIV/AIDS: a review from a health service perspective.

Health services for people with HIV/AIDS have been mainly hospital based, but it is now recognized that much care can be provided outside hospitals. There are well documented problems in delivering care in the community to other client groups such as the elderly and the mentally ill, but there are particular difficulties with HIV/AIDS care. These stem in part from the clinical demands of AIDS-related illnesses, but also from the stigma associated with the disease. This review looks at three key areas of relevance to those planning community-based health services for people with HIV/AIDS. These are: the need for collaboration between the statutory and voluntary sectors; the need for co-ordination between providers at the point of service delivery; and whether care should be provided by generic or specialist providers. While certain universal principles apply, and are necessary to ensure a good standard of care, patterns of service delivery will inevitably vary according both to the local prevalence rates and the existing service infrastructure. There is more than one good model of care; all models must be flexible enough to deal with needs on an individual basis.     

Integrating hepatitis C services into existing HIV services: the experiences of a sample of U.S. drug treatment units

Hepatitis C virus (HCV) is the most prevalent blood-borne infectious disease in the United States, especially among drug users, and coinfection with HIV is common. Because drug users are often medically underserved, drug treatment units are important sites of opportunity for providing services for these infectious diseases. Given the commonalities in the routes of transmission of HIV and HCV, and the fact that many drug treatment units have established an infrastructure to provide HIV services, some have suggested integrating HCV services into those already established for HIV. Using data collected in a telephone survey with 89 drug treatment units throughout the United States, this paper examines the extent to which drug treatment units have expanded their HIV services to include those for HCV, and the extent to which this expansion was facilitated by having HIV services in place. Overall, a greater proportion of methadone maintenance than drug-free treatment units provided services for HIV and HCV. The majority of units in both modalities that provided HIV- and HCV-related services expanded their HIV service delivery to include similar HCV services, and one third expanded all of their HIV services. A large number of these units, however, indicated that having an HIV service infrastructure did not facilitate this expansion, often because the units wanted to emphasize differences in the two viral infections. Policy makers and individual treatment units need to develop strategies that capitalize on existing infrastructures while maintaining the distinction between HIV and HCV primary and secondary prevention efforts.     

Public health aspects of breast cancer gene testing in Canada. Part 3: A model of potential need and demand.

Centres offering expert counselling and genetic testing are already experiencing high levels of demand, and yet the potential demand is much greater. There have been few attempts to estimate the potential demand created by particular guidelines for referral or testing. A model of need and demand for genetic services is presented, and research questions are identified that should assist in better prediction of future requirements for genetic counselling and testing. The value of integrated routine data on referral criteria, demand and clinical service load is considerable. Attention needs to be paid to referral at primary care and general specialist levels as well as to expert centres.     

Pleural effusions in the intensive care unit

The incidence of pleural effusions in the intensive care unit varies depending on the screening methods, from approximately 8% for physical examination to more than 60% for routine ultrasonography. Several factors contribute to the occurrence of pleural effusions in intensive care unit patients: large amounts of intravenous fluid are often administered, pneumonia is common, and heart failure, atelectasis, extravascular catheter migration, hypoalbuminemia, or liver disease are present in many intensive care unit patients. In surgical intensive care units, cardiac or abdominal surgery is often followed by pleural effusions, and in trauma patients, hemothorax is a dreaded event. Because no clinical parameter excludes pleural infection, and because of the impact of thoracentesis on diagnosis and treatment, this procedure should be performed unless contraindicated. Thoracentesis is safe in mechanically ventilated patients. The author discusses the following points regarding pleural effusions in the intensive care unit: screening intensive care unit patients for pleural effusion, safety of thoracentesis in patients receiving invasive mechanical ventilation, distinguishing exudates from transudates, and diagnosing and managing infected pleural effusions in critically ill patients. Lastly, the author suggests a research agenda for pleural effusions in intensive care unit patients.     

A case of late-onset dependence on cocaine and crack

AIMS: To raise awareness among the professional clinical and research community of the risk of cocaine misuse among elderly patients. METHODS: Case report of a male patient, aged 72 years, who presented to a community substance misuse service with cocaine use disorder (hydrochloride and base form). RESULTS: The development of the disorder was marked by high levels of cocaine (and later crack cocaine use), repeated periods of abstinence followed by relapse in the past 4 years, with severe consequences to the patient and his family. Treatment involved a close collaboration between several specialist addictions and old-age psychiatry teams in National Health Service. IMPLICATIONS: Although dependence on cocaine among the elderly is considered very rare, clinical management can be challenging and is likely to require the involvement of several specialist and general health services.     

Service Barriers Faced by Chinese American Families With a Dementia Relative: Perspectives from Family Caregivers and Service Professionals

The exponential increase in the Chinese American elder population will result in a dramatic increase in Chinese family caregivers. In spite of the projected increase, Chinese American older patients with Alzheimer's disease and related disorders and their family caregivers have received insufficient attention in research. This study explored service barriers perceived by family caregivers and by service professionals in a U.S. Southwest metropolitan area where there are no organized Chinese communities. Focus groups were used to obtain perceptions regarding service barriers and strategies to overcome these barriers. Content analysis was used to identify themes that were transcribed from the focus group information session. Similar to previous research, this study identified shortages of culturally-competent services, stigma, caregivers’ limited knowledge of the health care system, and lack of initiative to seek professional help as service barriers. In contrast to prior work, lack of communication concordance was identified as a major barrier in client-professional interactions, including professionals’ insufficient understanding of the Chinese language and culture, patient and family tendencies to minimize issues in the treatment of Alzheimer's disease and related disorders, and incongruent expectations that health professionals and Chinese patients have for one another. Educating Chinese family members, the young generation in particular, and developing community resources for Chinese American families coping with Alzheimer's disease and related disorders are recommended as methods to remove service barriers. Findings were further discussed within a practice-oriented framework to provide implications for gerontological practice.     

Melioidosis in the Americas

Melioidosis is a potentially severe bacterial infection caused by Burkholderia pseudomallei. There has been growing awareness of the disease in the Americas, particularly since the Vietnam conflict when it was diagnosed in returning service personnel. Accidental laboratory exposure indicates the difficulty making a culture-based diagnosis when melioidosis has not been considered in the differential diagnosis. Melioidosis is most likely underdiagnosed in tropical Central and South America where conditions are more suited to persistence of B. pseudomallei in the environment. Recent melioidosis case clusters in northeastern Brazil highlight the threat posed to rural populations located far from specialist services. Increased clinical awareness of the disease and improvements in laboratory diagnostic methods are likely to bring wider recognition of melioidosis in the Americas.     

Translational advances in pleural malignancies

Pleural malignancies, including primary malignant pleural mesothelioma and secondary pleural metastasis of various tumours resulting in malignant pleural effusion, are frequent and lethal diseases that deserve devoted translational research efforts for improvements to be introduced to the clinic. This paper highlights select clinical advances that have been accomplished recently and that are based on preclinical research on pleural malignancies. Examples are the establishment of folate antimetabolites in mesothelioma treatment, the use of PET in mesothelioma management and the discovery of mesothelin as a marker of mesothelioma. In addition to established translational advances, this text focuses on recent research findings that are anticipated to impact clinical pleural oncology in the near future. Such progress has been substantial, including the development of a genetic mouse model of mesothelioma and of transplantable models of pleural malignancies in immunocompetent hosts, the deployment of stereological and imaging methods for integral assessment of pleural tumour burden, as well as the discovery of the therapeutic potential of aminobiphosphonates, histone deacetylase inhibitors and ribonucleases against malignant pleural disease. Finally, key obstacles to overcome towards a more rapid advancement of translational research in pleural malignancies are outlined. These include the dissection of cell-autonomous and paracrine pathways of pleural tumour progression, the study of mesothelioma and malignant pleural effusion separately from other tumours at both the clinical and preclinical levels, and the expansion of tissue banks and consortia of clinical research of pleural malignancies.     

A comparison of women seeking drug and alcohol treatment in a specialist women's and two traditional mixed-sex treatment services

The paucity of research on the treatment needs of women with substance abuse problems has been a serious impediment to the development of empirically validated treatment programmes. Women continue to be seriously under-represented as research subjects and clients of treatment services. This study compares the characteristics of 80 women attending a specialist women's treatment service with those of eighty women attending two traditional mixed-sex treatment agencies. Women attending a gender-sensitive service were significantly more likely to have dependent children, to be lesbian, to have a maternal history for drug or alcohol problems and to have suffered sexual abuse in childhood. These results suggest that gender-sensitive treatment services may be recruiting women who might not otherwise have sought treatment for their substance dependence problems.