There are over 6,000 rare diseases classified in the UK. 80% of these have a genetic basis. Another key fact is that 1 in 17 of us will be affected by a rare disease in our lives. It is recognised nationally that at present, the specialist care for patients with rare diseases needs to improve. These patients can require the input of a large number of specialists from various medical, nursing and therapy services.
Our vision is to develop a Rare Disease Centre which will bring together multi-speciality and multi-disciplinary teams to deliver care of patients with rare diseases, based within our new Institute of Translational Medicine (ITM).
We intend to provide highly organised one-stop clinics where patients (with their carers) can undergo pre-planned diagnostic tests and see all specialists and the multi-disciplinary team relevant to their care at one visit. The Queen Elizabeth Hospital Birmingham (QEHB) already provides some rare disease clinics in this way, and we are now seeking to expand best practice across a wider range of rare diseases in purposefully-designed facilities in the ITM.
There will also be areas for patients to interact with each other as well as clinicans and researchers seeking to understand more about rare diseases in order to improve treatments.
The new purposefully-designed facilities will provide patients with opportunity to share experiences and be exposed to a research active environment. All of these requirements were recently identified as being important aspects of a centre of excellence by a survey conducted by Rare Disease UK.
The care pathway that we will design and deliver for each rare disease will be based around a hub and spoke model. This will facilitate interim care in the patient’s local “spoke” centre(s) and/or GP practice where geography requires. Care and communication between the QEHB hub and spoke providers will be be supported by an effective information technology strategy. We intend to put in place mechanisms via IT systems to minimise duplication of investigations and organisation/management of the one-stop clinics.
The Rare Disease Centre in the ITM will have multiple benefits for our patients that include
- Reducing the burden of travel for patients and carer’s by provision of one-stop multi-disciplinary clinics, where clinical expertise is brought together for patient benefit
- Provision of dedicated patient care co-ordinators to ensure all interactions between the patients, carers and clinical service providers is seamlessly organised
- Provision of a clinical environment which is focussed on the specific needs of this patient group
- Provision of dedicated space to rest and eat between appointments on the days on which patients are on site for multi-disciplinary review
- Provision of dedicated social space for patients and their carers to meet whilst attending UHB
- Provision of dedicated space with social/IT media infrastructure for patient representative groups to meet
- Clinical information platform enabling collection of detailed information on patients, their disease, and their responses to treatment. This information will be used to inform the delivery of care to these patient groups, to help identify patients who may be able to participate in clinical trials, and through analysis of this information – identify new areas of research to investigate
- Co-locating these patients, their information and the clinicians who provide care may also increase opportunity for earlier diagnosis of disease or earlier identification of requirements to change the clinical management of these patients
For queries regarding the centre, please email the Rare Disease Centre Team
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