Hi, my name’s Beth and I’m Policy and Communications Assistant at Genetic Alliance UK (the charity that runs SWAN UK).
In my role I communicate and contribute to the organisation's policy work. I manage Genetic Alliance UK’s social media accounts and am responsible for communication with members and other stakeholders. I also support the work of the policy team.
It’s not exactly ground breaking for me to write the words ‘managing an undiagnosed genetic condition is expensive’ – but in fact it does need to be written.
Actually, we all need to be shouting it. This is because almost no research has been done to truly capture just how costly (both financially and socially) it is to care for someone with a complex condition as a result of the way care is often structured in the UK.
It’s surprising that almost no research has been done into this when it seems like such common knowledge within rare and undiagnosed circles. How can it be that no one is monitoring how much money it costs you to travel up and down the country multiple times a month, or how much time you spend on the phone trying to get referred for that test or to see that consultant?
Families affected by rare and undiagnosed genetic conditions have told us about the myriad of different ways that their finances and their psychosocial wellbeing can be affected. These include financial costs including things like travel expenses, days off work (or stopping work entirely), prescriptions, specialist equipment and activities, childcare, respite care and time – that thing you lose when you spend the day ‘project managing’ your child’s care.
Because these ‘hidden costs’ aren’t currently collected or monitored, they also aren’t acknowledged by NHS commissioners and so decisions about services for rare and undiagnosed patients are often made based on limited evidence. I think it’s pretty straightforward; if decisions are made without all the evidence possible, they can’t possibly be in the best interest of patients.
It’s vital that these types of costs are recognised by those organising health and social care services so that they can be reduced for patients and families.
Better coordination might even save money for the NHS. We’re hoping that the Hidden Costs of Rare Disease feasibility study will act as a springboard for us, and others, to generate data on the cost of having a rare, genetic or undiagnosed disease to be used to improve the lives of rare disease patients, their families and carers.