Pictured back row standing from left to right: Dr Zoe Betteridge, Post Doctoral Research Fellow, Dr John Pauling, Specialist Registrar in Rheumatology, Sister Sue Brown, Clinical Nurse Specialist in Connective Tissue Diseases and Professor Neil McHugh, Consultant Rheumatologist. Front row seated from left to right: Dr Harsha Gunawardena, Honorary Consultant Rheumatologist, Dr Jay Sunrathalingham, Consultant Pulmonary Physician RUH and Dr Chris Lovell, Consultant Dermatologist RUH.The Royal National Hospital for Rheumatic Diseases in Bath (RNHRD) has been supporting patients with Raynaud's and scleroderma in the Connective Tissue Disease (CTD) service for many years. Led by Professor Neil McHugh, Dr Ellie Korendowych and Sister Sue Brown, we provide not only a clinical and educational service, but also a comprehensive research programme that includes acting as a European centre for autoantibody testing, undertaking collaborative genetic studies in scleroderma and participating in multicentre trials of new forms of treatment. Sister Sue Brown has been a leading figure in support for patients, and works closely with national colleagues and the RSA. Sue has been very generously financially supported by the RSA over the last 9 years.
Our clinical service
We receive local and national referrals from GPs and other consultants, and also provide a shared care service with other rheumatologists in areas of the country where there is not a specialist CTD service. Patients are seen in a twice weekly dedicated CTD clinic which is led by Professor Neil McHugh, Dr Ellie Korendowych, Sister Sue Brown and supported by two registrars. Nurse led clinics provide all CTD patients with education, advice, information and counselling. This is particularly useful for newly diagnosed patients and Sue provides support according to individual need. Those embarking on complex treatment plans or struggling to come to terms with their diagnosis and symptoms, also benefit from Sue's specialist input. A nurse led rheumatology telephone advice line is also available to support patients between clinic appointments as needed (01225 428 823).
As conditions like scleroderma can affect many different parts of the body, we have developed combined clinics with other physicians. This reduces the amount of clinics you may have to attend and also allows the clinicians to discuss your case together, enabling full discussion and assessment of your condition. This joint working also leads to further collaborations, not only clinically but also in the research field. Our combined clinics presently are:
1. Monthly pulmonary/rheumatology clinic with Dr Noeleen Foley, Respiratory Physician
2. Monthly dermatology/rheumatology clinic with Dr Chris Lovell, Dermatologist
3. Two monthly pulmonary hypertension clinics with Dr Gerry Coghlan,
Cardiologist, Dr Jay Sunrathalingham, Respiratory Physician
4. Two monthly renal clinics with Dr Chris Dudley, Renal Physician
Research service
One of the main areas we concentrate on is the measurement of autoantibodies, how they can be used in the diagnosis of scleroderma, and their relevance to the underlying cause of the disease. Currently the RSA supports the work of Dr Jean North, a postdoctoral scientist who is studying how autoantibodies may be formed in scleroderma and how they may have possible effects on cells. Over the past few years we have been able to discover new autoantibodies by using a rapidly advancing technology termed proteomics. Some of these new autoantibodies are associated with particular patterns of disease. We are also able to offer a central facility which is only one of very few world-wide that can undertake measurement of the full range of autoantibodies seen in scleroderma.
We have also established a large biobank of 30,000 blood samples over the last 10 years from patients with connective tissue disease including scleroderma, who have consented to participate in research studies. The biobank is interlinked with a clinical database that collects anonymised data related to patient outcome. This allows us to investigate the behaviour of certain diseases over time and the impact they have on the individual. The database is managed by Charlotte Caville. Importantly the biobank allows us to collaborate with other centres and provide the numbers of samples in uncommon conditions such as scleroderma that are necessary to undertake genetics studies.
One of our other main interests is measuring the blood flow in small vessels (microvasculature) in patients with Raynaud's and scleroderma. In our clinical measurement department led by Dr Nigel Harris, we have well established techniques such as thermography, nailfold capillaroscopy and laser Doppler imaging. For example, Dr Harris in collaboration with Dr Chris Lovell and Dr Lindsay Shaw is completing a project funded by the RSA investigating the way laser Doppler may be used to measure the activity of localised scleroderma in adults and children.
Finally, we have long recognised the importance of collaborating with other major scleroderma centres in the UK in clinical studies. As part of the UK Scleroderma Study Group, there have been several important studies either completed or near completion (e.g. QUINs, FAST, Observational study in diffuse scleroderma), in which our patients have participated. Such studies provide the knowledge base for providing the most effective and safe treatment for patients with scleroderma. We hope to continue to actively undertake clinical studies including those evaluating newer therapies for Raynaud's and scleroderma.
Education service
We provide an active education service for our patients, and local and national colleagues. Patient newsletters are available in the CTD clinic addressing issues of importance to patients, giving information about conditions such as scleroderma, our current CTD service and details of how to access help and advice. Patient meetings are regularly held at the RNHRD, with the local Bath/Bristol RSA group meeting here in Bath twice a year. During these meetings Sister Sue Brown is available to answer questions and offer advice and support.
Sue is chair of the United Kingdom and Ireland Scleroderma (UKIS) group for nurses and health professionals. This national group meets to discuss treatments, share good practice and formulate and consider health professional led research proposals. Sue is also convenor to the British Health Professionals in Rheumatology Special Interest Group and is running a session on scleroderma at the forthcoming national conference in Glasgow in April 2009.
We meet with other clinicians with an interest in scleroderma at the twice yearly combined Bath/Bristol CTD meetings. This is an opportunity to meet many different CTD specialists (such as pulmonary, cardiology, renal, dermatology and ophthalmology consultants) and enables us to set aside a full post graduate session for CTD presentations.
We also hold a monthly CTD interest meeting for clinicians at the RNHRD, where the full mutlidisciplinary team has the opportunity to engage in presentations and discuss important areas for practice. We have also collated a number of evidence based protocols to enable new clinicians to access our diagnosis, treatment and management plans.
Finally, our scleroderma patient education and self management programmes have been evaluated and re-designed and will be available for any patients at the RNHRD to attend.
Sister Sue Brown MSc RGN EN (G)
Clinical Nurse Specialist in Connective
Tissue Diseases , RNHRD, Bath
