Note: New research ongoing JULY 2017 (ie policy analysis) is being undertaken by us (in conjunction with a university professor) looking at the ‘policy on testing and the views of patients groups and charities’.
The aim is to ;
Compare the views of patients and groups with that of statutory agencies – and the nature of the debates between them.
This will allow a summary picture of the range of issues raised by patients groups about testing, and how they have developed as result of policy and practice.
These issues have not been highlighted in such detail from this kind of analysis before. We hope this work will be published academically.
RESEARCH DATA
Guidelines for using the data – guide-survey-data
Survey of patients with Lyme disease – results click here PDF – prof-diag-final-WPress
ARTICLES BASED ON 2011 SURVEY DATA
Authors: Kate Bloor and Vahsti Hale
ARTICLE ONE: LYME PATIENT’S EXPERIENCE OF ACCESS TO CARE
Keywords: Lyme disease; patients’ experience; health services; tick-borne; patients; diagnosis
ABSTRACT
Aims: The aim of this study was to begin to explore patients lived experience of access to care of patients who had a Lyme disease diagnosis.
Methods: A descriptive, retrospective internet based survey of 152 people who had been diagnosed professionally as having Lyme disease (LD) in the UK and Ireland was undertaken in 2011.
Results: Amongst this (self-selected) group of patients, there was a problematic experience of the NHS overall – the majority felt that they had been misdiagnosed and this was a cause of diagnostic delays. Over one third of patients (irrespective of NHS test results) felt that diagnostic delays were due to misdiagnosis. Time intervals between getting ill and being diagnosed with LD were often long. The data suggest there is room for improvement within the NHS, for a specific group of patients, at least.
Discussion: More work needs to establish the biological, human and social/psychological factors (and dynamics) leading to this situation, and to understand how these sit within the policy and health services context. We also need to know if these types of problems are more widespread, and recognition of the potential causes in a patient-centred review, would be useful for policy-makers and other stakeholders.
ARTICLE TWO: LYME PATIENTS EXPERIENCES OF HEALTH CARE
Keywords: Lyme disease; Borrelia; patients’ experience; internet; survey; health services; patients; satisfaction
ABSTRACT
Background; Lyme disease is an illness caused by a tick-borne infection that is becoming more common and may cause chronic illness.
Aims: To explore patients experiences of care, including their satisfaction with services and care provided by different types of medical care provision (private and NHS).
Design: A descriptive, retrospective study using internet based survey software. Both quantitative and qualitative data were collected.
Participants: 152 people were recruited via patients networks and social media, who indicated they had been diagnosed professionally as having Lyme disease (LD).
Main variables studied: ‘Patient centred’ indicators of satisfaction were collected in the study, supplemented by information from other sources, from the public domain.
Main measures: General indicators of satisfaction and perceptions about care received were examined for both those with and without positive NHS test results.
Results: Amongst this (self-selected) group of patients, there was a problematic experience of the NHS overall. Most felt care had been inadequate. They may not be representative of the broader group patients who have had Lyme disease. Problems appeared in both those with positive and negative NHS test results, but this was more pronounced for the latter group.
Discussion and conclusions: Whilst there is a diversity of experience of healthcare within this group, there is room for improvement within the NHS. The results may be an indicator of problems with the healthcare systems that some patients encounter. It would be useful to know how widespread any problems are.