Strategic and policy development in haemoglobinopathies

The project ‘Strategic Development for Haemoglobinopathy Community Service Provision in Camden and Islington’ was undertaken as a research and development activity in community nursing practice. The aim of the project was to develop strategies that can contribute to improving professional practice and community care on haemoglobin disorders in Camden and Islington. In order to achieve the project aim at local level, the impact of influential factors such as government priorities, local resources, public expectation, working practices, demographical and organisational change were taken into account. This is because these are key factors that created the need for this development. The primary care trusts in Camden and Islington, form part of a collective of service providers in the NHS that share a legacy of historical issues, work in a culture of constant change, whilst trying to satisfy public expectations and national priorities within available resources. Therefore the potential impact of the strategic development has to be considered within the context of these influencing factors. The possible benefits of the project outcomes on professional practice in and outside Camden and Islington and the likely long-term impact were also considered. These are important considerations because of the possible wider and long term impact on patient care and professional practice.
There are three written outcomes of the strategic development. These are haemoglobinopathy practice guidelines to support nursing practice in the community, a report for Camden and Islington Primary Care Trusts (the trust report) and this report referred to as the academic report.
The academic report pulls together the rationale behind each project outcome and explains their relationship and importance to each other in one document. A brief description of each project outcome with their perceived value and word count is provided (Section 4). A methodological commentary (Section 5) on the research work relating to the project is included in this report, as this is not of relevance in any great detail in the trust report or in the practice guidelines. The justification for the research methods, the research process, the challenges encountered and the analysis and presentation of data forms part of the methodological commentary. Issues relating to implementation of the haemoglobinopathy practice guidelines into community nursing practice and the potential contribution of the guidelines to evidence based practice is analysed in some detail. The feasibility of ‘nursing contact’ outcome measures to determine impact on users and professionals is discussed, as well as the potential contribution of the guidelines to service delivery in the NHS (Section 6). The potential impact of the project outcomes on users and professionals in Camden and Islington and on a wider audience is explored (Section 7). A personal reflection of impact on the author is included (Section 8).
The academic report is structured under the headings of project development, project outcomes, methodological commentary, evidence based practice and project impact. The report therefore gives an account of the overall final project work, but with some emphasis on the research activity and potential impact.
The report is intended for an academic audience as it identifies the project’s contribution to research and development. It is also aimed at key stakeholders locally and at a wider audience such as haemoglobinopathy practitioners, working groups such as the UK Forum that are involved in policy development on haemoglobin disorders, service providers and others that are engaged in service or professional development throughout the NHS.