Group Objectives

The Haemochromatosis West Midlands Support Group has been set up by sufferers of the illness and their carers with the intention of filling what they see as a gap in the provision of care to those with the illness within the West Midlands area. In the first place the group wishes to help fill this gap whereby there has been no local group until now.

Previously the Hertfordshire based national Haemochromatosis Society has been the only source of support for those in the West Midlands.  While the national society can do much for those with the illness it cannot address the day-to-day issues that need a local face. It is hoped that over time the West Midlands group can fill this cap while working alongside the national society to link up knowledge and experience on a national level and deliver support to those locally in a more focused way.

Many of those suffering with Haemochromatosis feel that the awareness of the illness is lacking both among members of the general public and crucially among many medical professionals. Therefore, it is felt that there is much to do to improve the current situation.

There is a collective feeling among sufferers of Haemochromatosis in the West Midlands that the provision of care from the NHS is often patchy. Whilst, some elements of care are delivered with great care and attention by medical professionals trying to do their best with a difficult illness, other elements of care are felt to be very lacking and often delivered as an, add on, to areas of medicine that, while being related to Haemochromatosis, are not specialised enough to take full account of the true complexity of this illness in its own right.

In an effort to start addressing some of the issues outlined above the West Midlands group hopes to:

• act as a focus of support for sufferers of Haemochromatosis and their carers. Hopefully this local focus will allow for the removal of the isolation that many sufferers have had to live with and build a community of people of mutual interest;
• promote awareness generally among the population of the West Midlands and importantly among medical professionals such as GPs, consultants and nursing staff that deliver care to those with the illness.
• act as a focus which will allow for the development of better understanding between the medical establishment and those suffering with this complex illness;
• apply pressure to the relevant local authorities that will ultimately lead to the establishment of a specialist unit where care can be delivered by those people who understand the full complexity of the illness and can be accessed by all those in the West Midlands that are in need of such care;
• act in conjunction with other groups locally, nationally and internationally to further the group objectives as outlined above.