Glasgow Labour MSP Anne McTaggart has called on the Scottish Government and health care providers across Scotland to do more to meet the needs of the increasing number of people in Scotland living with Sickle Cell Disease (SCD).
Ms McTaggart made her calls after she tabled a motion at the Scottish Parliament on the issue, which received cross-party support. The motion called for a universal antenatal and new born screening programme to be implemented across Scotland in order to identify new cases of SCD, for NHS staff to be provided with comprehensive training on the specific needs of people with the condition, and for health and social care providers to be appropriately resourced to treat SCD as a lifelong condition.
The motion follows the publication of the Report of The Sickle Cell Disorder Awareness Campaign by the Afro Caribbean Women’s Association (ACWA). The ACWA have been campaigning to raise awareness of SCD in Scotland since the late 90’s. Despite hosting two conferences, the report states that there has continued to be a lack of awareness of the condition and apathy towards to it within the health and social care community.
Ms McTaggart has had meetings and discussions with representatives of the ACWA and medical experts in the field over the past few months, and also spoke at the ACWA Glasgow seminar in September 2013.
Ms McTaggart said “I’m pleased to have secured cross-party support for this motion, which I believe highlights a really important issue. SCD is a condition that is affecting a growing number of people in Glasgow and across Scotland. What this report shows is that more education and training should be provided to health and social care professionals, as those affected by SCD are not getting access to the services they need. It also displays the discrepancies in the level of services available to those with the condition in England in comparison with those in Scotland.
It cannot be right that people have to travel down south to get the necessary treatment. I will be writing to the Minister for Public Health Michael Matheson about this issue and I look forward to hearing his response. I have also questioned the Scottish Government asking them to outline the funding that it has provided for the treatment of, and research into, SCD. It has been a real pleasure working alongside the ACWA and I hope that as a result of their continued hard work people with SCD in Scotland will have access to a better standard of care.”
Motion S4M-09591: Anne McTaggart, Glasgow, Scottish Labour, Date Lodged: 02/04/2014
That the Parliament recognises the work of the African and Caribbean Women’s Association on raising awareness of sickle cell disorder (SCD) in communities in Glasgow and across Scotland; recognises that SCD is an inherited condition that affects one in every 2,500 children born in the UK; understands that sickle cell traits have been identified in as many as one in 10 people of African and Caribbean descent and that over 6,000 adults in the UK have SCD; notes the calls for a universal antenatal and newborn screening programme to be implemented across Scotland in order to identify new cases at the earliest stage, for NHS staff to be provided with comprehensive training on the specific needs of people with the condition and for health and social care providers to be appropriately resourced to treat SCD as a lifelong condition; notes the findings of the report by the African and Caribbean Women’s Association, which calls for greater awareness of the condition among GPs, the Scottish Ambulance Service and accident and emergency staff, and further notes the view that support for people with SCD should be delivered in partnership between the Scottish Government, local authorities and the NHS.
Over 6,000 adults in the UK have SCD. It is an inherited condition that affects one in every 2,500 children born in the UK and its traits have been identified in as many as one in 10 people of African and Caribbean descent. As well as causing extreme pain, known as a crisis, it leads to organ damage in the parts of the body deprived of oxygen. The focus of care and management for the sickle cell patient is to alleviate the painful crisis when it occurs and to prevent organ damage. As SCD is a genetic condition, there is no cure but with careful planning, self-management and prompt treatment when crisis do occur, patients with sickle cell disease can live a long and productive life.
You can read the ACWA Report of The Sickle Cell Disorder Awareness Campaign here.