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Biomedical subjects

Hilary Burton

Publications and source records attributed to Hilary Burton.

8 recordsLinked to original sources
PubMed2006

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

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.

Adult↗
PubMed2003

Genetics. Gene genies.

A new white paper on genetics shows how it is starting to affect mainstream services, at both acute and primary care trust level. It is vital that managers begin to consider service redesign now. Many managers lack knowledge and do not know where to gain it.

Administrative Personnel↗
PubMed2003

From Mendel to the Human Genome Project: the implications for nurse education.

The Human Genome Project has heralded a whole new era in our understanding of the molecular basis of disease. New opportunities now arise to predict disease by genetic testing, and in some cases to prevent disease through surveillance or other specific interventions. Increasingly it will be possible to test for predisposition to disease, to develop new treatments or to tailor available treatments more specifically to an individual's genetic make-up. Midwives and paediatric nurses are at the forefront of these developments with new national antenatal and neonatal genetic screening programmes due to be implemented by 2004. However, in the near future it is likely that nurses in most clinical areas will encounter genetic aspects of their practice. If they are to capitalise on opportunities offered by the new genetics, health professionals will need to become knowledgeable and skilled in genetics. They will need to understand something of the basic science and also develop an awareness of many ethical, legal and social aspects. In the light of a recent review of education in genetics for health professionals, the Department of Health and The Wellcome Trust have commissioned a process to develop a programme of education for the United Kingdom.

Education, Nursing↗
PubMed2003

Postregistration genetics education provision for nurses, midwives and health visitors in the UK.

BACKGROUND: Rapid advances in genetics following the sequencing of the human genome will progressively reach all aspects of health care. Developments in genetics will increasingly having a significant influence on the work of nurses, midwives and health visitors. Therefore, these practitioners need to understand the impact that genetics will have for their patients and should be able to incorporate this new knowledge into their clinical practice to ensure that they continue to offer holistic care and influence the strategic development of health care. An earlier survey of higher education institutions in the United Kingdom (UK) offering preregistration courses for nurses, midwives and health visitors showed that the teaching of genetics was very limited in most curricula. AIM: To assess the provision of education on genetics for postregistration and postgraduate nurses, midwives and health visitors in the UK, as these practitioners are mostly likely to influence current health care provision and initiate changes in clinical practice. METHOD: A total of 38 higher education institutions from 11 regions were surveyed via telephone or e-mail, using a semi-structured interview schedule. RESULTS: The findings showed that the inclusion of genetics in the curriculum was highly variable. A small number of institutions (n = 3) offered courses with whole modules on genetics, whereas 19 of the 38 responding did not include any genetics in their curriculum at a postregistration level. CONCLUSION: The findings suggest that there is lack of recognition of the impact genetics is likely to have on health care. It is, therefore, recommended that the profile and relevance of genetics to nurses, midwives and health visitors should be promoted by the major organizations responsible for developing, commissioning and providing health care education.

Community Health Nursing↗
PubMed2003

Genetics education for midwives.

Advances in genetic science have increased the number of health interventions undertaken with regard to genetic disorders. Genetics is therefore expanding into the domains of national screening programmes, disease prediction and pharmacogenetics. This expansion means that a growing range of health professionals, including midwives, need skills and knowledge in genetics in order to take on new roles. The government is increasingly recognising the importance of genetic science for health and an expansion of genetic services is now underway. It is acknowledged that education of a wide range of health professionals will be required, although current educational provision does not reflect this. A growing range of genetic disorders can now be detected by prenatal tests, including chromosome disorders and single gene disorders. Pregnant women may choose to discuss their concerns with midwives, who therefore need to understand genetic testing, and know what disorders can be detected and when to refer women to specialist genetic services. Their clients would also benefit from midwives having sufficient skills to understand the processes of genetic counselling, which would enable them to discuss the decision to undertake a test, help women to cope with the result and minimise its effects on the family. Educational provision on genetics for midwives is insufficient and has not been coherently planned. A strategy is being developed to provide a framework for genetics education for front-line healthcare professionals. This aims to meet the needs of practising professionals who are already being asked to take on genetic roles, and also ensure future practitioners receive pre-registration education in genetics. Practising midwives and their teachers are invited to take part in this process.

Female↗
PubMed2003

Genetics education for nurses, midwives and health visitors.

Advances in genetic science are leading to new roles for nurses, midwives and other front-line health professionals. But current educational provision on genetics is insufficient to enable practitioners to develop the knowledge and skills they need. The Department of Health and The Wellcome Trust are jointly funding the development of a strategy to address the problem.

Breast Neoplasms↗