P33
DEVELOPING AND COORDINATING HIGH QUALITY CARE FOR PATIENTS WITH RARE
RENAL METABOLIC DISEASES
Wise, S
University Hospitals Birmingham NHSFT
Problem:
There are thought to be more than 100 rare kidney diseases, of which renal metabolic diseases make up a significant proportion of this figure. The success of chronic and end-stage renal failure programme in childhood, and advances in treatmenthas resulted in severely affected patients surviving into adulthood, which has provided new clinical andpsychosocial implications. Renal teams are caring for young adults with certain rare metabolic diseases for the first time in history.
Purpose:
Patients with rare renal conditions can be subject to varying standards of care both nationally, and locally, depending on factors such as the which clinician they see on clinic day, the clinicians experience and interest in the patients condition. Quality patient information can be difficult to find, often leaving the patient to piece together various pieces of information from the internet. This contributes to feelings of isolation and lack of confidence in the healthcare system.
Design:
The renal metabolic disease service aims to improve the care and provide a high quality service to patients focusing on the following key areas:
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Empowering those affected by rare diseases o Established several specialised clinics for patients with renal metabolic diseases, including onestop annual review clinics for patients with cystinosis, and supported by senior clinical nurse specialist, allied healthcare professionals, and streamlined diagnostics.
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Identifying and preventing rare disease o Development of diagnostic screening pathways for renal metabolic diseases. o Operating joint metabolic and genetic clinic allowing for streamlined genetic and familial testing/counselling
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Diagnosis and early intervention o The development of clinical guidelines for diagnosis and management of renal metabolic diseases ensures patients are receiving standardised care based on the best available evidence, and have access to the right treatments as soon as is clinically appropriate
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Coordination of care o The development of one stop clinics for patients with cystinosis has allowed patients to undergo a full holistic assessment in the space of one morning. This dramatically cuts down the number of hospital visits required by the patient whilst still maintaining quality care. o The centre for rare diseases due to open late 2015 will allow for this model to be expanded to include other renal metabolic diseases. o Support from senior nurse specialist allows for a knowledgeable single point of contact for patients regarding clinical queries.
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The role of research o Incorporating patients into specialised clinics allows for a critical mass of patients therefore enabling patients to take part clinical research.
Conclusion:
This model has significantly improved the standard of care at for patients with renal metabolic diseases.
Results from patient surveys, currently being undertaken, have shown patients with rare metabolic diseases are prepared to travel significant distances to receive this model of care.