Today, Genetic Alliance UK launched its ‘Hidden Costs’ report revealing that patients and families affected by rare diseases face substantial financial and psychosocial costs as a result of poorly coordinated care in the UK.
The study collected data from patients, family members, healthcare professionals and commissioners to better understand how services are currently organised for patients with rare conditions and to identify the costs and benefits associated with this.
We looked at the types of evidence that currently exist, and assessed the ways that different types of data could be collected and measured in the future. Coordinating care for patients with rare conditions is particularly important as they are often life-long and serious, affecting multiple systems of the body. However, we found that there is huge variation and inequity in the way that health services are organised and many patients face a number of challenges related to the way that their care is managed.
Patients and families face significant financial and psychosocial costs when their care is not coordinated including costs associated with travelling to frequent appointments and the time it takes to ‘project manage’ the various aspects of their care and treatment.
‘The appointments come through, everything’s just put into a diary, we also have lots of appointments with social services . . . school nurses . . . there’s nobody else to do it, there isn't anybody else who coordinates it . . . the impact of it is that I've had to give up work.’ [Parent of child with an undiagnosed genetic condition]
‘ . . . usually we’ll get like a barrage of appointments come through from Great Ormond Street all at the same time . . . and unfortunately a lot of those clinic appointments are on different days . . . So we may be going up and down to Great Ormond Street for three days over the period of one week or two weeks . . .’ [Parent of child with MPS II]
These kinds of costs are not currently routinely collected or acknowledged by NHS commissioners and so decisions about services for rare disease patients are often made on limited evidence. Further research in this area would be valuable for decision makers and commissioners as they plan service developments and support best practice. Genetic Alliance UK’s feasibility study will inform the development of a larger research project, to evaluate the full costs associated with different models of care for rare disease patients.
You can find out more about the study and future research in this area by contacting our Director of Research, Dr Amy Hunter.