The scleroderma nursing team consists of Louise Parker and Tanaka Ngcozana at present.
Louise started work in the Scleroderma unit in April 2005. Prior to this she worked for several years at St Thomas’ Hospital, London. During this time she gained experience in various specialities but particularly enjoyed looking after Lupus patients. Louise liaised regularly between the specialist unit at St Thomas’ and the ward she worked on which had dedicated facilities for this group of patients. Louise quickly became interested in connective tissue disease and decided that this was the area she wanted to specialise in. She noticed a job as a clinical trials and education nurse at the Royal Free Hospital in early 2005 and the rest as they say, is history!
Louise runs the Raynaud’s clinic, which is very busy. Patients get referred to the clinic from near and far away for this specialist service. Although Raynaud’s is a common and benign condition within the population, it is important to clarify if it is related to a connective tissue disease. This clinic allows patients with Raynaud’s to be managed appropriately but also screens patients who are at risk of developing a connective tissue disease. Patients are fully assessed by Louise and then sent to Kevin for Capillaroscopy to look for abnormal capillaries (a potential sign of connective tissue disease) and Thermography to see how the hands rewarm which confirms the presence of Raynaud’s (See Clinical Scientist page for more information) Patients will also be required to have blood tests and most importantly this includes a auto anibody profile. On the basis of these tests a diagnosis can be given to the patient at a follow up appointment and all information regarding future management is communicated back to the patients GP. We also follow up patients regularly as necessary.
Louise and Tanaka maintain an education programme for all patients at the Royal Free. A major part of the nurse specialist’s role is education for patients with connective tissue disease in particular, Scleroderma. The Royal Free not only aims to medically treat this condition and research it within the academic unit of the department but to educate people about their disease and how to manage it effectively themselves.
Scleroderma is a rare and often unknown condition. When patients are newly diagnosed they will spend time with one of the specialist nurses to discuss information given during their consultation and be given education on any new therapies that have been recommended. There is always an opportunity to ask questions during your time with us, not only at your first clinic visit, but at any other future clinic appointments this is where the specialist nurses come in. You can also see us at other pre-arranged times during working hours if you wish. We understand that there will be unanswered questions through the lifetime of the disease and we hope that it helps patients to know we are available to help and support you.
Another part of our role is to maintain and update patient information we give you as part of your education time. We will give you specific leaflets, which you can take home with you so you can read through them as and when you want to. We hope this gives you another source of information to help you understand the disease. Scleroderma research is being continuously carried out and the information will change from time to time. We endeavour to give you the most up to date literature we have available.
Louise and Tanaka also run a dedicated, national telephone advice line during office hours. We hope that this gives our patients a quick way of accessing our knowledge and expertise when they have any queries or concerns. We find that patients often have little support locally and find the advice line invaluable. It is not a replacement for your medical consultations but we hope it is reassuring to know you have another way of accessing help if and when you need us. If we are not able to take your call immediately then we will ask you to leave your name and number and we will return your call as soon as our clinical commitments allow.
We also offer teaching sessions to the staff that care for patients who attend our designated wards, through formal teaching and bedside learning. We hope that this will enhance their understanding of the disease and will enable them to offer the best care if or when you are an inpatient at the Royal Free Hospital.
One of the specialist nurses also attends the Outreach Clinics that Professor Denton facilitates in various hospitals all over the country. We are available there to give information, advice and support to those patients seen in these clinics that do not or are unable to attend the Royal Free Hospital.
We hope the above information is useful and helps you understand our role better. We are here ultimately to offer you support through our clinical work and by providing education to patients & health care professionals. We provide patient advocacy and we are heavily involved with the liaison and coordination of your care. We also regularly participate in research and audit within the department.