We are constantly updating and producing new literature to help create awareness and to disseminate information about current treatments. This page contains short excerpts from each of the range of health professional booklets which are now available from the Association on receipt of two second class stamps per copy (UK only). We are sorry but due to the high cost of postage we are unable to send these books overseas. If you would like to download our publications order form please click here.
A Guide for Health Professionals
The Role of the Nurse
The Role of the Podiatrist (Chiropodist)
Oral and Dental Aspects of Scleroderma
The Role of the Physiotherapist
The Role of the Occupational Therapist
The Lung in Scleroderma
RAYNAUD'S & SCLERODERMA: A GUIDE FOR HEALTH PROFESSIONALS
The Raynaud’s & Scleroderma Association have published a new booklet, ‘Raynaud’s & Scleroderma: A Guide for Health Professionals.’ Written by Professor Chris Denton, Professor of Experimental Rheumatology at the Royal Free Hospital in London, the booklet gives details of diagnosis, subsets of the condition, management and treatment, emphasising the importance of early diagnosis. This informative booklet should be of particular interest to health professionals, especially general practitioners and junior doctors. One goal of the booklet is to enable health professionals encountering scleroderma for the first time to put cases into appropriate context within the spectrum of disease.
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THE ROLE OF THE NURSE IN RAYNAUD'S AND SCLERODERMA
The role of the nurse in Raynaud's and scleroderma is not just restricted to the physical care of patients but it is essential to be able to offer a holistic approach to care, dealing with psychosocial aspects. The important thing to remember when looking after a patient with scleroderma is that not every patient will have the same experiences. They are likely to all suffer different symptoms and to have disease of varying severity. For this reason each patient's needs will be very individual and the nurse has a responsibility to carry out a full assessment of each person's abilities and needs and create a personalised care plan, identifying areas where the patient may require assistance with activities of daily living. Reassessment should be carried out frequently as the disease can develop rapidly and the patient may require additional support. As is the case with all chronic illnesses an effective relationship with a supportive, understanding and well-informed nurse can help the patient maintain dignity, function and a normal life. Written by Helen Wilson and Rachel Vincent from the Royal Free. This booklet for nurses is also useful for patients to take into hospital when receiving treatment, to give to the nursing staff.
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THE ROLE OF THE PODIATRIST IN RAYNAUD'S AND SCLERODERMA
Changes in the shape of the digits due to reabsorption of the terminal phalanges and the tightening of the skin, causes tapering, contraction of the digits and changes in the shape of the toe nails. This change in the shape of the nail often makes them more prone to growing into the sulcus and may be further compounded by calcinosis and digital infarctions. The contracture of the digits also makes the toes particularly prone to corns and callus which may ultimately ulcerate. The podiatry booklet has been written by Frank Webb and updated by Anne Mainwaring, Department of Podiatry at Hope Hospital.
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ORAL AND DENTAL ASPECTS OF SCLERODERMA
Scleroderma can give rise to a number of denture problems: Poor retention of the upper denture due to a dry mouth - the upper denture can become easily dislodged causing rubbing and ulceration of the adjacent mouth lining (oral mucosa). This can be minimised by applying salivary substitutes to the fitting surface of the denture, and having the denture regularly checked and/or modified. The dental booklet has been written and updated by Professor Stephen Porter from the Eastman Dental Hospital and is of value to both patients and dentists.
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THE ROLE OF THE PHYSIOTHERAPIST
Following assessment, management will be discussed with the patient with priority areas highlighted. Maintenance of independent function will be a main priority. Exercises which can be performed independently by the patient should be taught. These should be directed to maintaining and increasing range of motion and muscle power. Stretches for all affected areas are vital and may need to involve a partner or friend to assist. Accurate and thorough teaching is essential. Persistence is vital, particularly when evidence of progress may not always be apparent. Our thanks to Jill Lloyd for her preparation of this booklet.
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THE ROLE OF THE OCCUPATIONAL THERAPIST
The aim of the Occupational Therapist is to work in partnership with the individual and his or her 'family', in order to achieve and maintain optimum independence in activities of daily living. Liaison with other team members is important. The patient has usually been seen by the rheumatologist and possibly a clinical nurse specialist, before reaching the occupational therapist. Through liaison, valuable background information can be gathered, assisting in rapport building not only with the patient but also with the team. Occupational therapists who work closely with physiotherapists will be able to offer the best therapy input for the patient. This booklet has been written by Anne Johnson who works with patients at the Royal National Hospital for Rheumatic Diseases in Bath.
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Scleroderma can affect many organs in the body, including the lungs, although not everyone will experience the symptoms of lung disease. Pulmonary involvement occurs in at least two thirds of systemic sclerosis patients and about 10-15% of them will develop severe lung disease during the course of their illness. Lung disease is now the leading cause of death in scleroderma patients. The earlier lung disease is detected, the more likely there is to be a good response to treatment. The World Health Organisation therefore recommends that all patients with scleroderma should be screened annually for lung complications, even if they possess no symptoms This booklet has been written by Lorraine Walters, Professor Athol Wells and Dr Gerry Coghlan.
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Iloprost is given as an intravenous infusion in hospital. The infusion is usually given for approximately six hours a day for five consecutive days. It is important that once the decision has been made to treat someone with iloprost that the nurse discusses the nature of the drug, its potential side-effects, the length of time they can expect to stay in hospital, or if attending on a daily basis, the importance of having someone to drive them home after treatment has finished for the day.
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