Correspondence: Thomas Tang. Email: T.M.H.Tang@leeds.ac.uk
The UK Thalassaemia Society website has a well laid out, easy to navigate design with a professional appeal to users.
The Society is a national medical charity involved in: promoting health inefficiencies, patient welfare, counselling sufferers and raising funds, and has been in existence for more than 30 years with extensive international networks.
The Society's work with the Government has led to thalassaemia being included in the UK National Screening Programme.
The website has in-depth and extensive information regarding the various haemoglobinopathies that exist, describing these succinctly. The ‘About Thalassaemia’ section is a comprehensive learning tool which would aid medical students and MRCOG candidates alike to enhance understanding of this complicated condition.
There is a useful leaflet under the ‘Living with Thalassaemia’ section regarding fertility and pregnancy, stressing the importance of pre-conception care and challenges that the pregnant patient with thalassaemia may encounter. In the leaflet, there is also a scientifically based explanation of the fertility issues male sufferers can encounter as a consequence of the disease due to interference with the hypothalamic-pituitary-testicular axis.
The website has a catchy slogan under its donations section: ‘we don't need the iron, but we need your silver’.
The Sickle Cell Society is a registered charity set up to help educate and support people with the condition, health carers and other professionals about sickle cell disease.
The charity relies upon volunteers, donations and fundraising events to advance research, educational projects and improve the general welfare of those with sickle cell disease.
The website itself is slightly wordy at times, but is colourful and easy to navigate with good visual effects offering informative videos with the added bonus of an interactive children's section with games and personalised stories.
The website offers a wealth of support for sufferers with advice on how to get tested for the disease, how to locate the nearest support group, how to avoid trigger factors precipitating crises and help with claiming benefits.
A section is dedicated to information for healthcare professionals which gives accurate comprehensive facts about the disease and its inheritance. This is also a useful site for any junior doctors attempting membership exams, aiding understanding of the various haemoglobinopathies that exist and the effects the disease can precipitate.
It is a useful adjunct to the formal RCOG Greentop Guideline Number 61. A slight drawback is that there is unfortunately very limited information available regarding sickle cell disease in pregnancy, which if included, would make the site more appealing.
The Miscarriage Association is a registered charity that provides an invaluable service to those who have suffered miscarriage in their lives or in the lives of loved ones via an informative and easy to navigate website allowing interaction between the user and the site.
The website is a scientifically reliable source of information regarding miscarriage, recurrent miscarriage, ectopic pregnancy and molar pregnancy as well as being a useful tool for healthcare professionals to utilise and offer to patients.
There are a variety of information leaflets available within the site regarding the different aspects of miscarriage, subsequent management options and how miscarriage can affect a couple.
The support section allows users to share their personal experiences if desired, and to mark their loss by leaving a personalised message on ‘forget-me-not meadow’ or on the ‘lights of love tree’.
The website also provides a staffed phone helpline and an online forum for members to converse with each other, allowing personal experiences to be shared in the hope that it will help others.
A vast array of online support is provided via web links for advice on counselling, the location of various support groups and on how to locate your nearest early pregnancy assessment unit.
There is a certification of miscarriage section highlighting the need for formal recognition that a patient has suffered a miscarriage. Such documentation is not legally necessary to formalise a miscarriage and can, in some cases, increase the sense of loss an individual experiences. The miscarriage association provides guidance on how such a document could, in theory, be drafted and utilised in the medical profession in such circumstances.
The charity offers training in the form of a full-day course, half-day course and 90-minute sessions aimed at increasing understanding, knowledge and skills to support the care provided to patients who have had a miscarriage, including breaking bad news and other skills essential to any junior doctor and consultant alike in our profession.