A significant increase in life expectancy in successive birth cohorts of people with cystic fibrosis (CF) is a result of more effective treatment for the disease. It is also now widely recognized that outcomes for patients cared for in specialist CF Centres are better than for those who are not. Key to the effectiveness of the specialist CF Centre is the multidisciplinary team (MDT), which should include consultants, clinical nurse specialist, microbiologist, physiotherapist, dietitian, pharmacist, clinical psychologist, social worker, clinical geneticist and allied healthcare professionals, all of whom should be experienced in CF care. Members of the MDT are also expected to keep up to date with developments in CF through continued professional development, attendance at conferences, auditing and involvement in research. Specialists CF Centres should also network with other Centres both nationally and internationally, and feed Centre data to registries in order to further the understanding of the disease. This paper provides a framework for the specialist CF Centre, including the organisation of the Centre and the individual roles of MDT members, as well as highlighting the value of CF organisations and disease registries.
Diet and lifestyle advice for individuals with diabetes has changed dramatically. The changes in nutritional recommendations have largely been in response to advances in the knowledge of the biochemical and physiological mechanisms of impaired glucose metabolism and the microand macrovascular complications of diabetes. The most recent guidelines for the nutritional management of diabetes were set out by Diabetes UK in 2003. This consensus-based advice paper builds on the previous evidence-based review papers of the European Association for the Study of Diabetes in 2000 and the American Diabetes Association in 2002. The changes from previous recommendations include a more liberal use of sucrose, in line with healthy eating recommendations for the general population, and allow for greater flexibility in energy derived from carbohydrate and monounsaturated fat. In addition, monounsaturated fats are promoted as the fat of choice and active promotion of carbohydrate foods with a low glycaemic index is encouraged. These guidelines emphasise the practical application of nutritional management of diabetes and the need to provide education and support in a structured way that will facilitate change in diet and lifestyle behaviour. Structured educational programmes have been shown to be effective in reducing the progression to diabetes and also in slowing the onset and progression of the complications of diabetes. These programmes require ongoing intensive input to maintain behavioural change in diet and lifestyle. Considerable energy and resources are required to set up and maintain these educational programmes, but the cost per individual is small compared with the costs of treating the complications of diabetes.
Widespread, and sometimes inappropriate use of psychotropics in adults with intellectual disability has been an international concern. These medicines have been used to treat mental health conditions, but also, controversially, some types of behaviours not necessarily associated with the diagnosis or in the absence of a relevant diagnosis. Results from the Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing (IDS-TILDA) study of older adults with intellectual disability in Ireland revealed that 60% were taking psychotropics in 2010. In the intervening decade changes in regulations, policy, and increased decongregation of people with intellectual disability have taken place likely influencing the use of psychotropics. The HSE National Clinical Programme for People with Disability (NCPDD) established in the 2020 has medicines optimisation as a key priority. Existing multi-wave data from the IDS-TILDA study and the HSE national prescribing database offers an opportunity to better understand psychotropic use and prescribing patterns. This is a novel collaboration on lived experience, research, practice and policy. The aim of this research is to examine the quality and trends of psychotropic use of older adults with intellectual disability over a ten-year period in Ireland to evaluate the effects of and to inform both practice and policy to optimise medicines use and health outcomes. Health and medication data from ten years (four waves) of the IDS-TILDA study and corresponding medicines data from the HSE-PCRS prescribing database are available. Descriptive and longitudinal analysis will examine association between long-term psychotropic use, changes in trends of use, and the impact of decongregation on medicines use. This research will inform the development of national guidance on medicines optimisation for older people with intellectual disability and has the potential to change prescribing practices and improve health and wellbeing for older people with intellectual disability.
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