Hansard

I am extremely pleased to have the opportunity to speak today, because I was on the Public Petitions Committee when the petition was lodged in 2012. Since then, an extraordinary amount of time and work have been contributed to consideration of the petition, which allowed the committee to reach its conclusions and to make recommendations.

Thanks must be given to the petitioners—Sandra Whyte, Marian Dyer and Lorraine Cleaver—to my colleague Elaine Smith MSP, to the committee clerks and to the witnesses who took time to give evidence to the committee. Only by listening to the voices of people whose lives have been affected can we begin to learn and understand the challenges that must be tackled.

Hypothyroidism is a lifelong and debilitating chronic health condition that can, if it is undiagnosed or misdiagnosed, cause much greater health problems including high cholesterol, carpal tunnel syndrome, hearing loss and cardiac issues. Therefore, timely diagnosis and provision of appropriate treatment are vital.

The evidence that was presented to the committee showed that many people—mostly women—have endured many years of suffering due to prescribing of the wrong medication or misdiagnosis. Around 4.5 million people in the UK have thyroid problems, and it is a condition that disproportionately affects women—20 in every 1,000 women, compared with one in every 1,000 men. The condition is most common in women who are aged between 40 and 50, which can contribute to tell-tale symptoms being missed or simply ignored because they are wrongly attributed to the menopause.

It is important to note that most cases are diagnosed and treated successfully. However, for those that are not, the consequences can be life changing; they can cause untold misery and detrimentally affect family life and personal relationships. It is now widely understood that it can be problematic for general practitioners and endocrinologists to diagnose accurately and treat hypothyroidism, due to the often vague and non-specific nature of the symptoms that are described by patients. GPs and endocrinologists are faced with making decisions on management of patients who display few or no clinical signs of thyroid dysfunction, but return abnormal tests.

An estimated 2 million people are believed to have undiagnosed thyroid problems. Therefore, the case for consistent and effective testing, diagnosis and treatment of thyroid disease and adrenal disorders is clear. The process must be reliable and must ensure that GPs and endocrinologists are given the best possible support to allow them to provide dependable treatment.

Some harrowing accounts have been brought to light as a direct result of the petition, and those personal stories have provided greater awareness and understanding of the issue. It has been shocking to learn that some patients have suffered symptoms for many years and that their condition has gone untreated, either due to the absence of a diagnosis, or because the patient belongs to the subset of hypothyroidism patients who do not respond to the standard treatment. It is crucial to have a better understanding of the issue and clear diagnostic guidelines in order to prevent the needless suffering of any more people.

The very personal stories illustrate the adverse effects that misdiagnosis or ineffective treatment can have. The condition being untreated has frequently plunged people into extreme despair, which has resulted in inability to participate in everyday life and has often acted as a barrier to employment. Such things serve only to intensify an already miserable situation and to compound it with financial uncertainty and additional stress. The importance of the increase in general awareness of the guidelines, and developments in professional guidance and public information since the petition was lodged in 2012 cannot be overstated.

I highlight the National Institute for Health and Clinical Excellence’s clinical knowledge summary on hypothyroidism, which is in line with both the British Thyroid Association position statement and guidelines of the Royal College of Physicians. I welcome its work to develop new guidelines on assessment and management of thyroid disease, which is due for completion by 2019. I also welcome the Scottish Government’s commitment to improve diagnosis and access to appropriate treatments for thyroid disorders.

Debates such as this are extremely important in helping to raise awareness and improve people’s understanding of such complex issues. I once again offer my heartfelt thanks to everyone who has contributed to the process since 2012, and allowed us to reach where we are today.

I welcome the continuation of discussions on development of future clinical guidance and public policy, and I look forward to further consideration being given to development of a single national protocol for testing. [Applause.]