Review access to NHS treatment for Retrograde Cricopharyngeal Dysfunction

We want the Government to review the adequacy of recognition of, and NHS treatment access for, people with Retrograde Cricopharyngeal Dysfunction (R-CPD).

We believe too many sufferers are dismissed or misdiagnosed before paying privately for treatment - patients deserve better awareness and NHS access to care.

We want the Government to work towards improving recognition and NHS treatment access for Retrograde Cricopharyngeal Dysfunction (R-CPD), a condition that prevents sufferers from being able to burp. R-CPD can cause severe bloating, pain and major impacts on daily life. We believe patients deserve better awareness, referral pathways and NHS access to treatment.

The Government recognises that living with retrograde cricopharyngeal dysfunction (R-CPD) can have a significant impact on quality of life. Sometimes referred to as “no burp syndrome”, the condition causes symptoms such as painful bloating, chest and abdominal discomfort, excessive gurgling noises and nausea, which can limit the ability to eat, drink or socialise comfortably. Many people also report frustration at delays in receiving a diagnosis or accessing appropriate treatment, particularly given the relatively low awareness of the condition.

The Government understands the importance of ensuring that people experiencing distressing symptoms receive timely assessment and access to appropriate care. R-CPD is a relatively recently recognised condition and awareness among healthcare professionals is continuing to develop.

The Government supports efforts to improve awareness of rare and less well-recognised conditions among healthcare professionals. Patients who experience persistent symptoms that affect their health and wellbeing should be assessed by appropriate healthcare professionals and, where necessary, referred to specialist services for further investigation and management.

Whilst the Government supports improvements in the diagnosis and management of all conditions through professional education and development, decisions on clinical training and service provision are primarily matters for the NHS, including service commissioners, and relevant professional bodies. Healthcare professionals are expected to keep their knowledge and skills up to date in line with developments in clinical practice.

The Government expects NHS services to provide timely access to appropriate care for all patients based on clinical need. Decisions about the diagnosis and treatment of individual patients are made by clinicians, taking account of the best available evidence and the specific circumstances of each patient.

The main treatment for R-CPD is, where clinically appropriate, a botulinum toxin (Botox) injection into the cricopharyngeal muscle, to relieve symptoms and restore the ability to burp. Botox is not currently authorised by the Medicines and Healthcare products Regulatory Agency for the treatment of R-CPD. However, clinicians may prescribe licensed medicines ‘off label’ where they judge this to be clinically appropriate, and in a patient's best interests, taking account of the available evidence and the individual's circumstances. As a result, while some specialist NHS services may offer Botox treatment for R-CPD, there is no national commissioning policy and access to treatment is determined locally by NHS commissioners and providers.

The National Institute for Health and Care Excellence (NICE) develops evidence-based guidance where there is sufficient evidence and a clear need to support decision-making in the NHS. While Botox is commonly used in the treatment of R-CPD, NICE has not developed guidance specifically on its use for the condition. As it operates independently of government, decisions on whether NICE develops new guidance are a matter for NICE, based on its assessment of the available evidence and clinical need. In the absence of NICE guidance, clinicians are expected to use their professional judgement, taking account of the available evidence and the individual circumstances of their patients.

Research into R-CPD is important because it can help to strengthen the evidence base, improve understanding of its causes and long-term impacts, and support the development of safe and effective treatments. As knowledge of R-CPD grows, research may help clinicians identify the condition more quickly, reduce delays in diagnosis, and inform decisions on the most appropriate care and support for patients. High-quality evidence is also important in supporting the consideration of new interventions by regulators, guideline developers, and the NHS, helping to improve outcomes and quality of life for people living with R-CPD.

The Department of Health and Social Care funds research through the National Institute for Health and Care Research (NIHR). While NIHR is not currently funding research specifically into R-CPD, it does support related research into swallowing and upper oesophageal disorders, persistent throat symptoms and the inability to belch after surgery. This includes clinical trials on treatments for reflux and oesophageal motility disorders, studies to improve diagnosis, and work to assess and manage patients’ symptoms. Findings from this wider research may help improve understanding and care of people with conditions that share features with R-CPD.

The NIHR welcomes funding applications for research into any aspect of human health and care, including R-CPD. Its approach to funding research is through open and fair competition and peer review to ensure that the highest-quality proposals, most likely to deliver real impact for patients, are funded without imposing financial targets or limits.

Department of Health and Social Care