I was lucky enough to attend Rare Disease UK’s AGM last week, where they released their new report ‘The Rare Reality: An insight into the patient and family experience of living with a rare disease’.
The morning was filled with inspirational speakers who discussed a number of different challenges faced by families affected by rare disease. As they each presented their thoughts, one particular theme really struck me - the challenges in providing co-ordinated care.
Co-ordinated care isn’t difficult on paper, and from experience I know that all healthcare professionals will agree with me that it’s the ideal situation for everyone. It places the patient at the centre of their care and everyone involved works around them. Communication is key. Without communication, co-ordinated care fails; and it fails quickly. Unfortunately, this is something that is commonplace when dealing with rare diseases.
Imagine trying to arrange an appointment at a hospital two hours away by train with one specialist, whilst a different specialist sends you a reminder for an appointment a week later. You then have to ring the hospital to get the appointments within the same day, because the two specialist teams didn’t communicate with each other that you were already coming in. By the time you’ve spoken to the right person, a third appointment for another day lands on your doorstep. This is a situation that will sound all too familiar to families affected by a rare disease.
While I know from experience that healthcare teams do the best they can to provide people with the best possible care, communication can often fail when working in such a high-pressure, busy environment. When I was a clinical nurse specialist, I’d often receive phone calls from a community nurse, asking if a certain patient was with us in hospital. Caught up in making sure everyone had been seen, I’d just forgotten to let them know. Not only do logistical issues arise, such as the example mentioned above, but medical issues arise too, if specialist teams aren’t aligned. Families can sometimes find themselves in the position where they are caught in the middle by two specialist teams, as I heard from one of the inspiring speakers, a mother of two children with undiagnosed rare diseases.
The findings of the Rare Reality report show that most of the people surveyed did not have coordinated care and were left to coordinate their own care. It also found that the average rare disease patient travelled 1-2 hours and attended at least three clinics at least quarterly, in order to attend appointments related to their condition. On average that’s 24 hours spent in travel time to attend an appointment a year, not taking in to account the appointment time itself and the cost of travel.
The impact of this was quite evident in the other key findings – information is not shared effectively between hospital trusts, specialist or local services, and many felt like they were left to coordinate their own care. 81% of participants said they did not have a care coordinator, with many indicating that whilst a care coordinator would be helpful, they would still want to be involved in their own care, working together with specialist teams.
Thankfully, one hospital in Birmingham is leading the way in coordinated care for families affected by a rare disease.
The Birmingham Children’s Hospital Charity is currently raising money through their STAR Appeal to build a first-of-its-kind centre for rare disease, that will focus on coordinated care. The project lead, Dr Larissa Kerecuk, explained how families would attend the centre for the day, where they would see each of the necessary specialists. The healthcare professionals would also have space to discuss each case both at the start and end of the day, to ensure information is shared effectively.
Hopefully, Dr Kerecuk’s simple vision will filter down to other hospitals and centres of rare disease within the UK and the rest of the world, ensuring the findings of the next patient experiences report from Rare Disease UK in 2020 tells a story of better coordinated care for families.
Elizabeth Schonfeld has a background in nursing, with an interest in rare disease. @liz_raremark