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Parliamentary Activity and Lobbying

Achalasia Action

In January 2023 Achalasia Action published a briefing note setting out the importance of early diagnosis, the need for better and more consistent standards of care, and the necessity for more research in relation to achalasia.

We believe that it is important for the medical profession, especially in primary care, to have more awareness of achalasia, notwithstanding that it is a rare disease. It is a chronic condition where people are liable to be attending clinics for many years throughout their lives, so it is important for people to receive the optimum treatment as early as possible. Chronic conditions are often not dealt with by the NHS to the desired level of treatment.

Although there are many medical papers that compare surgical techniques for reducing the symptoms of achalasia, there is very little recent research on achalasia itself. One of the areas that showed some promise was supported by the charity Guts UK who awarded a Derek Butler Fellowship to Conor McCann to study stem cell therapy in the digestive system, but this project has now concluded. We believe that it is important for equivalent research to continue to address a potential cure for achalasia. This seems likely to involve therapy aimed at restoring damaged nerve endings in the oesophagus that drive peristaltic muscle activity.

We also believe that guidelines need to be developed for the diagnosis, treatment and care of patients by the medical profession.

Included in the list of those who have been sent our briefing note are:

  • Steve Barclay MP, Secretary of State for Health and Social Care
  • Sir Chris Whitty, Chief Medical Officer, England
  • Humza Yousaf, Cabinet Secretary for Health and Social Care, Scotland
  • Professor Sir Gregor Smith, Chief Medical Officer, Scotland
  • Eluned Morgan MS, Minister of Health for Wales
  • Sir Frank Atherton, Chief Medical Officer for Wales
  • Sir Michael McBride, Chief Medical Officer for Northern Ireland
  • Steve Brine MP, Chair of Select Committee for Health and Social Care in Westminster
  • Lisa Cameron MP, Chair of the All Party Parliamentary Group on Health, Westminster
  • Wes Streeting MP, Shadow Secretary of State for Health and Social Care

Download the Briefing Note Here

Lorien smiling and holding a black puppy

Lorien Schipperus’s Achalasia Story

On Rare Disease Day, Lorien tells us of how her achalasia was misdiagnosed and of how important it has been for her to receive support from her family, friends and the wider achalasia community