How we created a better service for people living with Behçet’s syndrome

Behçet’s syndrome is an auto inflammatory disease. The numbers of patients in the UK currently diagnosed with the condition are, according to NHS Choices, estimated at 1,000 although there may be significant under-diagnosis.

In the UK, as a rare syndrome, it is often diagnosed many years after the patient experiences symptoms and can be difficult to treat.

In 2008, The Behçet’s Syndrome Society undertook a quality of life survey of its membership. It revealed that the impact of Behçet’s Syndrome is similar to that of multiple sclerosis, which has an approved NHS patient pathway.

Sharing and dissemination of good practice is key to improving the patient experience

This, taken with the knowledge that on average it was taking 12 years for Behçet’s patients to receive a diagnosis, prompted the Behçet’s Syndrome Society to make an application to the National Specialised Commissioning Group for Centres of Excellence to be established in the NHS to treat patients.

This bid was successful and the centres were established in April 2012. The Behçet’s Patients Centres charitable company was established in conjunction with the Behçet’s Syndrome Society to work collaboratively with the NHS to deliver the contract.

The aim of the centres is to ensure that patients of all ages can access timely diagnosis and receive optimal treatment equitably across England.

As there is no definitive blood test for Behçet’s Syndrome, and symptoms vary from person to person, patients have often been misdiagnosed/not diagnosed at all, or, experienced a long delay in receiving an accurate diagnosis. Complex care was often required from many consultants, frequently located in different hospitals without any coordination of that care.

Once diagnosed, patients sometimes had to battle with their local care provider for treatment or referral to one of the three Behçet’s Centres of Excellence.

In the UK, as a rare syndrome, it is often diagnosed many years after the patient experiences symptoms and can be difficult to treat

The centres, in teaching hospitals in London, Birmingham and Liverpool, enable patients to see clinicians with specific expertise in the management of Behçet’s Syndrome.

Consultants specialising in rheumatology, ophthalmology, oral medicine, psychology, dermatology, gynaecology and neurology see patients in one location in the Behçet’s Centre.

At these one stop clinics a treatment pathway can be established between the Centre of Excellence and the patient’s local medical care providers. This approach builds a network of knowledge about the condition, helps non specialists recognise the signs and symptoms for earlier diagnosis and improves the overall quality of life for persons living with the syndrome.

The Behçet’s Support Co-ordinator role

While the current three Behçet’s Support Co-ordinators are qualified at graduate/ postgraduate levels in specialist nursing, psychotherapy, and therapeutic use of leisure, the role is strictly non-medical. 

The Behçet’s Support Co-ordinators are funded through an NHS England grant and managed by the Behçet’s Patients Support Operations Manager.

This graduate level, non-medical support role is unusual in the NHS (and not to be confused with the similarly named but very different established NHS role of Support Worker) but better established within the third sector where it has been used for years to provide mental health, advocacy and support to vulnerable individuals. 

Survey revealed that the impact of Behçet’s Syndrome is similar to that of Multiple Sclerosis which has an approved NHS patient pathway.

Although working on NHS premises with the Behçet’s teams, the Behçet’s Support Co-ordinators are not employed by the NHS. They have NHS honorary contracts and work in a flexible way which meets patient needs.

While in clinic, they work under the auspices of the NHS Behçet’s Team. Outside clinic, where most of their work takes place, they have considerable autonomy. This arrangement demonstrates a good example of NHS and third sector collaboration.

The Behçet’s Support Co-ordinator role includes

• Attending weekly NHS Behçet’s clinics and paediatric Behçet’s clinics (less frequently) and following up patients met in the clinics
• Contributing to Multi-Disciplinary Team meetings
• Providing emotional and practical support
• Liaising with the NHS, local authorities and BSS (Behçet’s Syndrome Society)
• Liaising with employers, educational establishments and organisations (e.g. Department of Work and Pensions), to improve understanding of Behçet’s Syndrome
• Patient linking
• Signposting to specialist agencies e.g. money/benefits advice services
• Home visits where appropriate
• Supporting patients to stay in employment, consider work opportunities, or volunteering

The multidisciplinary team

Multi-Disciplinary Team (MDT) working is common practice the NHS. The model used by the Behçet’s Centres of Excellence in Liverpool, Birmingham and London is one where clinicians from several specialties work in the same physical space and make decisions regarding treatment for individual patients.

As there is no definitive blood test for Behçet’s Syndrome, and symptoms vary from person to person, patients have often been misdiagnosed/not diagnosed at all, or, experienced a long delay in receiving an accurate diagnosis

MDTs comprise consultants from the specialties listed earlier, specialist nurses and Behçet’s Support Co-ordinators. The patient can be reviewed within the one clinic by each team member including the Behçet’s Support Co-ordinator who can bring a valuable non-medical perspective to patient care.

This umbrella approach reduces the number of hospital appointments for the patient, and importantly, gives scope for each team member to communicate with the others to plan and deliver a consensual plan of care.

Patients with long term conditions have many issues beyond disease pathology. In the medical model of care, these may be overlooked:

• Taking an external support model into the NHS is relatively rare. This offers patients access to holistic care, both clinical and non-clinical
• This model could be replicated in other chronic diseases where non-medical aspects of the condition may have a detrimental effect on the patient and family
• The Behçet’s Support Co-ordinator’s interventions may lead to better treatment concordance, although this is unproven

Sharing and dissemination of good practice is key to improving the patient experience. It would be helpful to evaluate further the added value this role brings to patient care so that other charities supporting chronic disease may benefit from replicating this model.

John Mather is Behçet’s Patients Support Operations Manager and Jacqueline Pooler, Jean Christians, Rebecca Hyder are Behçet’s support co-ordinators at the Liverpool Behçet’s Syndrome Centre of Excellence, The London Behçet’s Syndrome Centre of Excellence, The Birmingham Behçet’s Syndrome Centre of Excellence respectively