5.1 Patient Power – it actually works! – Professor Philip I. Murray

Patient Power – it actually works!

Professor Philip I. Murray
Professor of Ophthalmology
part of the Birmingham Behçet Centre of Excellence.

Behçet’s Syndrome (also known as Behçet’s Disease – BD) is a rare, chronic, multisystem disorder of unknown cause. It is typically characterised by recurrent mouth ulcers, genital ulcers, eye inflammation (uveitis), joint pain and skin lesions. The cause of BD is unknown, although most experts believe it is an auto-inflammatory condition, that is where the immune system – the body’s natural defence against infection and illness – mistakenly attacks healthy tissue. In cases of BD, it is thought the immune system mistakenly attacks the blood vessels. It is not clear what triggers this problem but BD tends to be much more common in certain ethnic groups where the gene HLA-B51 is linked to the condition, such as Turkey, the Middle East and the Far East. In the UK, it is estimated that there are about 1 in 100,000 – that is, about 1000 people with BD.

A relative lack in understanding of this disease, paucity of evidence and low prevalence in the UK has created some real challenges for accurate diagnosis, prognosis and disease management. Other problems around the delivery of care including inconsistent access to biologic treatment (Treatment to stimulate or restore the ability of the immune (defense) system to fight infection and disease – it uses the body’s natural abilities that constitute the immune system to fight infection and disease or to protect the body from some of the side effects of treatment) and the long interval from first symptom to diagnosis (typically more than a decade) and a pathway to diagnosis involving consecutive attendances with multiple specialists, often at different hospitals as part of the diagnostic journey, acted as a catalyst for change and a desire amongst patients (patient support group, Behçet’s Syndrome Society – http://www.behcets.org.uk) and experts interested in this disease to plan an optimal model for care provision.
Joint discussions have resulted in an innovative, holistic and patient-centred approach to care delivery including the routine collection of outcome data, supported by a system-wide approach to patient and practitioner education which has led to greater awareness and understanding of diagnosis and treatment options. The service is also accountable to commissioners through annual meetings.
Since 2012, three national centres (Birmingham, Liverpool, London) have been running a one-stop solution approach to delivering clinics each week in which experts from Rheumatology, Ophthalmology, Oral Medicine, Neurology, Dermatology, Gynaecology (or Genitourinary Medicine) are all working together to focus on patients. Each centre also has a manager (typically a highly-trained specialist nurse) who can pre-screen referrals, case-manage patients and co- ordinate care as needed to a custom process, matching individual care needs with the specialists available. While the service is commissioned for England, patients are also referred from other parts of the UK, Europe and internationally, with alternative methods of funding.
The service also provides clinical psychology support, to address bio-psychosocial factors and fatigue and pain management. A support worker is also made available to access support networks for non-medical problems and to signpost patients to appropriate help, that has previously not been possible.
The website of the centres (http://www.behcets.nhs.uk/) delineates the services and resources available for patients and healthcare professionals, along with a national drugs pathway (based on best available evidence) for guiding therapy. The support of the National Health Service commissioners was vital in providing a run-through budget that was allocated to centres and crucially enabled funding to promptly flow to local units (following a clinician- to-clinician discussion) for support of delivery of biologic therapy.
In conclusion, this intense, coherent and multi-disciplinary approach to rare or complex multisystem diseases is still evolving but represents an ideal platform on which to build. It was developed through strong collaboration between patient group and healthcare professionals to deliver a high-quality service, but also provides an important role in education and research. It seems to be cost-efficient for both patients and clinicians by facilitating rapid decision-making supported by funding for high-cost drugs at the specialist centres where the expertise is based. Enabling funding to flow locally, is a model with much relevance for other conditions and hospital design in general.