The Centre for Rare Diseases has a spacious and adolescent-friendly waiting area and treatment rooms, plus fixtures and fittings which are sensitive to disability. There are also areas for patients to interact with each other, as well as for clinicians and researchers seeking to understand more about rare diseases in order to improve treatments.
All of these requirements were identified as being important aspects of a centre of excellence in a survey conducted by Rare Disease UK.
The patient care pathway that is designed and delivered for each rare disease is based around a hub and spoke model. This means that patients are treated in the best and most convenient place – whether that be in local clinics, GP surgeries or hospital.
Care and communication between the healthcare providers is coordinated through the Trust’s advanced IT systems. This in turn minimises duplication, helping to organise and manage one-stop clinics.
Benefits to patients include:
Dedicated patient care co-ordinators
A clinical environment focussed on the specific needs of the patient
Dedicated space to rest and eat between appointments on days on which patients are on site for multi-disciplinary review
Dedicated social space for patients and their carers to meet whilst attending the Trust
Space with social/IT media infrastructure for patient representative group to meet
Dedicated space for education and training (patients, carers, clinical staff)
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