SWAN Clinic Secures Recurrent Funding to Support Undiagnosed Rare Disease Patients in Wales
Cardiff and Vale University Health Board is pleased to announce that the SWAN (Syndromes Without A Name) Clinic, based at University Hospital of Wales, has secured recurrent funding following a successful three-year pilot.
The SWAN Clinic provides care for patients with a suspected rare disease who have not yet received a confirmed diagnosis. It is the only known clinic of its kind in the UK, offering a multidisciplinary approach that has already shown significant benefits for both patients and colleagues.
Patients with rare diseases often face a long journey to diagnosis, with average wait times exceeding five years. The SWAN Clinic was established to improve the experiences and outcomes of these patients in Wales, with its key priorities being to reduce the uncertainty of the diagnostic journey, increase diagnostic rates and improve care co-ordination for patients.
Following a comprehensive review by the Centre for Healthcare Evaluation, Device Assessment, and Research (CEDAR), which was funded by the Value Transformation directorate of NHS Wales Performance and Improvement, the clinic will now receive ongoing support via the NHS Wales Joint Commissioning Committee (NWJCC). This decision will ensure the continued delivery of vital care to patients as they pursue a diagnosis beyond the initial three-year Welsh Government-funded pilot.
The CEDAR review identified clear benefits for patients, including changes to treatment and management, even in the absence of a definitive diagnosis. The clinic’s multidisciplinary model was cited as being instrumental to its success, allowing for more holistic and open-minded analysis of patient conditions and a more efficient care pathway. Patients reported feeling listened to, taken seriously, and reassured that their cases were being actively investigated, with some expressing a sense of comfort and relief as a result of the clinic’s thorough and engaging appointments.
One patient described their experience at the SWAN clinic:
“A really thorough appointment, led by a team who were all very welcoming, understanding and genuinely interested in ensuring the best in my future care ... I felt listened to, reassured, and also well informed of the next steps and of the thoughts [and] ideas that the team were exploring there and then... I genuinely do think continuing SWAN clinics will help so many patients and their families in so many ways.”
Another patient said:
“My family and I feel like answers and solutions are around the corner with this clinic. Although my diagnosis is yet to [be] confirmed, I feel that the clinic gives me hope that one day we will know more. The staff were brilliant and made me feel at ease.”
Colleagues have also welcomed the decision, highlighting the opportunity it provides for enhanced training and development across adult and paediatric medicine and genetics. They also commented on the benefits of a more coordinated, holistic approach to care and how they felt this improved patient experience.
One colleague shared:
“The gift of having the time to look at these patients in the depth that such complex undiagnosed problems require is... a luxury we've been given and that's almost the most important thing ...it’s having the time to take the holistic approach and really going to a depth that patients have the forum and the time to voice their concerns and to have those concerns met as well as we can within the service.”
Graham Shortland, Clinical Lead of the SWAN Clinic said:
“This initiative is delivering a comprehensive and unique service for patients in Wales that is not available elsewhere in the UK. Through collaboration with the patient group Genetic Alliance and Wales Rare Disease Implementation Network the SWAN Clinic is significantly raising Wales’ international profile in the field of rare disease care. The clinic has already attracted interest from across the UK and internationally, and with ongoing funding, can now continue as an example of how Wales is successfully leading the way in this area of healthcare for patients with a suspected rare disease“
More information about the SWAN Clinic can be found here.