Gabriel Theophanous               

President, UK Thalassaemia Society

Dear Friends



One of our most important projects for 2016 is the production of the 3rd edition of the Standards for the Clinical Care of Children and Adults with Thalassaemia in the UK. We have a writing group of doctors who are updating the book and in some cases writing new chapters. Part of the process which informs the Standards is the views of the people directly affected by them – you and me, the people who spend a significant portion of our lives dealing with thalassaemia and its many aspects.


We are therefore circulating the enclosed survey, to be answered by all people who have thalassaemia who have reached the age of 15 or over by the 1st January 2016. The survey covers different aspects of thalassaemia treatment and includes space for your own comments and observations. UKTS will be including quotations from the surveys in the new Standards; and the data produced will give us a clear and up to date picture of how people with thalassaemia view the quality of their treatment. The survey is anonymous so you can feel free to be absolutely honest in your responses. A reply paid envelope is enclosed so that the survey can be returned with the minimum of inconvenience to you. The survey will also be available as a pdf document by email and on our website


Are there things you want to change? It is essential that we in the thalassaemia community take every opportunity to make our voices heard. For example, when UKTS asks about “out of hours” transfusion facilities to make life easier for working people, we are used to being told by NHS managers “There’s no demand for it”. If we are to counter this kind of argument, we need evidence from our members on this and all the other issues which affect people who have thalassaemia.


Nobody likes to fill in forms (I certainly don’t!) and it is easy to think “I don’t have time”, “other people will do it” or “I can’t be bothered” – but if we – the thal community - can’t be bothered why should we expect other people to care about the quality of our services? So – please - don’t throw the survey in the bin or put it aside where it will be forgotten. We are planning to send out close to a thousand surveys. If only a few are returned it implies that the vast majority of us are satisfied with our care and want nothing better. I think we deserve a lot better – don’t you? If so, complete the survey and return it to UKTS before 1st March 2016 and give us the evidence we need to lobby effectively for better and more accessible services. Thank you very much for your help.


Need help? Know a person with thal who hasn’t received their survey or need another copy?

Contact Elaine at the UKTS office on

or 07958 084 892

With sincere regards

                                    Download the Survey

 Gabriel Theophanous