Dr Phil Darbyshire-Chairman UK Forum on Blood Disorders

The history of comprehensive data collection in the UK for Haemoglobin disorders goes back many years. However despite the best efforts of many enthusiastic and committed individuals we still in the beginning of 2008 do not have reliable information on the most basic aspects of these disorders. We do not know how many people in the UK have Haemoglobin disorders, neither where they live nor what type of disease they have got. This information is vital for the improvement of treatment services nationally.

This last couple of years have seen red cell disorders assume a higher profile amongst those who commission health services and set health spending priorities .This increased profile has come about in part because of the screening programme and in part because of the great efforts of organisations such as the UK Thalassaemia Society (UKTS) and Sickle Cell Society in representing their members views .There is also a simple recognition by health service planners that the present services available to patients and families with red cell disorders are not equitable and represent a poor investment in the long term health of these groups.
At present no-one has the information which will allow the planning required for the improvement of services in future years and this is now proving to be a major barrier to our efforts. I am pleased to say the Department of Health has identified money to collect basic data on the numbers of patients affected, where they are and what they have got. This will be undertaken by a very experienced group from Manchester who run the UK Haemophilia database. www.ukhcdo.org is worth visiting. It is a very professional and well run set up.

This initiative will move forward this year. A patient information leaflet is being produced. All those affected will be free to opt out but we would strongly urge you to participate. The group involved in Manchester are sensitive to all the issues of confidentiality that such data involves and have discussed this in detail with the Forum as well as UKTS and the Sickle Cell Society. The first stage is to define what data is needed, produce patient information and establish a steering group to oversee the process. Patient representatives are included on the steering group and this stage is almost complete.
The next stage will be to collect pilot data before beginning to collect data nationally. It is hoped that the Department of Health’s funding for this process will continue long enough to get it firmly established. There are several directions in which the initiative could move after its first year, including developing audit and patient management systems .We are keen to draw on the interests and skills of others previously involved in this area in making both the initial data collection process and any future developments a success .I would urge you all to support this initiative. I do believe it is a real step in the right direction and will help us to improve the quality of service over the years.