The Neurological Alliance Patient Experience Survey →

February 19, 2019 Daragh Bogan, RLS-UK Chair

The Neurological Alliance have launched their 2019 patient experience for patients living in England.

The purpose of the survey is to provide information which can help the Neurological Alliance monitor and improve the future quality of health services and social care for people with neurological conditions.

If you live with RLS and are a resident of England, you can complete the survey via the link below.

myonlinesurvey.co.uk/NA19RLS

Presentations from the RLS-UK 2018 Annual General Meeting

August 12, 2018 Daragh Bogan, RLS-UK Chair

Our 2018 Annual General Meeting took place on Saturday, 1st September at the National Council for Voluntary Organisations (NCVO).

We have brought together some of the presentations from our guest speakers on the day:

* Joke Jaarsma, past-president of the European Alliance for RLS (EARLS). Joke is now President of the European Federation of Neurological Associations (EFNA) and also Treasurer of the Board of the European Brain Council. You can download and view Joke Jaarsma’s Presentation here

* Dr. Dhaval Trivedi, Research Coordinator as well as fellow working on several projects in non-motor issues at King’s College Hospital. You can download and view Dr. Trivedi’s Presentation here

* Dr Kirstie Anderson, a consultant neurologist who runs the Regional Neurology Sleep Service at the Royal Victoria Infirmary in Newcastle. You can download and view Dr. Anderson’s Presentation here

* Dr Julian Spinks, GP, Writer and Vice Chairman of Kent Local Medical Committee and medical advisor to RLS-UK. You can download and view Dr. Spinks’ Presentation here

* Dr Yi Min Wan, Research Student at King’s College Hospital. You can download and view Dr. Yi Min Wan’s Presentation here

Restless Legs Syndrome (RLS) is a major burden on healthcare budgets in Europe

September 23, 2017 Daragh Bogan, RLS-UK Chair

A new report from the European Brain Council reveals poor diagnosis and treatment of Restless Legs Syndrome which makes it one of the most costly neurological disorders in Europe.

Restless Legs Syndrome (RLS) is a serious neurological disorder which has a high prevalence but is very often not recognized or even diagnosed as a disease, leading to delayed diagnosis and/or wrong treatment. This, in turn, brings unnecessary suffering to patients, a significant cost to healthcare budgets in Europe and costs to wider society. Frequently, RLS is not diagnosed due to lack of knowledge among healthcare professionals, and patients are left with no option but to suffer. Equally concerning is the frequency of misdiagnosis, where patients are prescribed incorrect and inappropriate therapies.

The Value of Treatment for Brain Disorders in Europe study, conducted by the European Brain Council (EBC), the European Academy of Neurology (EAN), the European RLS Patients Alliance (EARLS) and the European RLS Study Group (EURLSSG), in consultation with a team of researchers and experts from the London School of Economics, discovered that the treatment gap for RLS is very high. The total cost of poor diagnosis and treatment of RLS in the countries analysed (Germany, Italy and France) is significantly higher than the combined cost of Parkinson’s disease, Multiple Sclerosis and Epilepsy in these countries, partially due to the high prevalence of RLS.

The report highlights the importance of early detection and intervention, and the urgent need for proper education of healthcare professionals about RLS. The report also highlights the need for research into the cause(s) of RLS and for new treatment pathways to be identified to reduce patient suffering.

The European Union spends just over three euro per year, per patient, on brain research, and access to treatment in many member states is getting worse, not better. According to an analysis carried on in 2010, neurological and mental disorders affect 165 million Europeans, with an overall cost of about €800 billion per ar. The Value of Treatment for Brain disorders in Europe study covered a range of mental and neurological disorders among which Schizophrenia, Alzheimer’s disease, Headache, Multiple Sclerosis, Normal Pressure Hydrocephalus, Stroke, Parkinson’s disease, Epilepsy and Restless Legs Syndrome, and highlighted the full cost of unmet healthcare needs, recommending new investment in research, earlier detections and interventions and better treatment for neurological disorders.

Visit the European Brain Council website for more information

CREDITS: EARLS, EURLSSG & EAN

What Is Augmentation?

April 21, 2017 Daragh Bogan, RLS-UK Chair

Restless legs syndrome (RLS) augmentation is a formidable foe. It describes a not-uncommon phenomenon in which—after weeks, months, or years of a patient’s RLS (also known by the newer name of Willis-Ekbom disease) being well controlled by a dopamine drug—the symptoms become more intense, take less time to occur when at rest, manifest earlier in the day, return more quickly after taking therapeutic medication, and may spread to other parts of the body.

This article, written by Dr. Mark Buchfuhrer, is one of the best we have read!

http://www.sleepreviewmag.com/2015/02/allaying-augmentation/

RLS during Pregnancy: an online survey

April 4, 2017 Daragh Bogan, RLS-UK Chair

The purpose of this online survey is to gather information from women suffering from Restless Legs Syndrome (RLS) during pregnancy (current or past pregnancy) that will help us shape an intervention to help them reduce their symptoms and improve their quality of life during and after pregnancy.

RLS affects approximately one in three pregnant women in western countries, with a negative impact on sleep and quality of life. It is also linked to postpartum depression which can have harmful consequences for both mother and child.

This project aims to support the development of a new research application and to lead to the acquisition of data that could help us improve the management of RLS in a population for which the use of pharmacological agents should be avoided.

Your participation in this online survey is voluntary and anonymous. In order to participate, you need to read and click the consent button.

Findings from the study will be reported, disseminated and made available to the participants via the RLS-UK website and social media platforms linked to the project. It is intended that this work will be published in a peer-reviewed journal, however key findings will be made available to participants regardless of publication through the RLS-UK charity's website and Facebook page.

To participate in this anonymous survey please click on the link below:

https://docs.google.com/forms/d/e/1FAIpQLSf0RcgdKmDcN79NTFY1BBXbrERWn6WmgwX5phWCAziOQ3FKSg/viewform?usp=sf_link#responses