Wheals of Despair

Chronic spontaneous urticaria: breaking free from the cycle of despair

Chronic spontaneous urticaria (CSU) is a common and extremely distressing skin condition that causes red, swollen, itchy and sometimes painful hives or wheals on the skin. These wheals reoccur daily for at least six weeks and often for considerably longer, even for many years.

We receive many calls to the Allergy UK helpline from patients with CSU who are at their wits’ end as a result of their symptoms, which affect their sleep, work and self-esteem. The triggers for CSU are unknown and it could strike anyone from a child to a grandparent.

The aim of this report is to establish the significant impact CSU has on the lives of patients and to outline what must be done to ensure they have access to the optimal care they deserve. Therefore it is vital that healthcare professionals and commissioners understand the role they can play in improving the quality of life of those with CSU and in ending the ‘wheal’ of despair in which patients are trapped.

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This report seeks to raise awareness of the real quality of life impact of CSU, in addition to highlighting the latest key issues associated with the diagnosis and management of the condition.

Often people living with CSU do not receive a diagnosis for 18 months or more from the point of first consultation. Once diagnosed, people with CSU are usually prescribed antihistamine treatments which are effective for some but leave up to half without symptom relief. Medical guidelines recommend that doctors increase antihistamines up to four times the licensed dose; however, despite this, a proportion of patients will still experience the symptoms of CSU.

Many patients do not experience appropriate escalation of treatment when they fail on first-line therapy. The result is that those living with the condition are trapped in a cycle – or wheal – of despair, characterised by the need for symptoms to be present at a medical consultation to trigger a referral, the possible temporary abatement of symptoms and the subsequent physical and psychological distress when they return. This is compounded by a lack of fast access to appropriate treatments once a diagnosis has been made.

The contributors of this report are issuing a call to action for more to be done to help resolve these issues and outline a set of recommendations on how the care of those living with CSU can be improved.

To support the development of this report, an audit of 103 people who have been diagnosed with CSU was undertaken to reveal the impact of CSU on the day-to-day lives of people living with the condition in the UK.

This Wheals of Despair report has been developed from contributions of opinion made by a multidisciplinary taskforce including hospital specialist consultants, primary care professionals and Allergy UK, and is supported by Novartis Pharmaceuticals UK Limited.