Naomi Smith, a mother from Stroud, Gloucestershire, has lived with relentless jaw pain for three decades, enduring a condition that now limits her mouth opening to just 14mm-a distance too small even for a 5p coin. Despite numerous hospital visits and consultations, she fears the NHS is failing to provide the support she urgently needs, leaving her feeling abandoned and desperate.
Naomi’s symptoms began when she was 18 years old, initially manifesting as jaw discomfort that escalated over time. By 2014, the pain became unbearable, severely affecting her ability to eat or drink. The condition’s severity caused widespread bodily pain and led to frequent vomiting-up to 30 times daily-as well as severe weight loss and other complications.
Her journey through the healthcare system has been fraught with challenges. Over the years, Naomi was referred to various specialists at Gloucestershire Royal Hospital and Cheltenham General Hospital. Diagnoses included fibromyalgia, functional bowel disease, and osteoarthritis. However, none fully explained her persistent and worsening symptoms.
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In 2019, a hospital admission highlighted the severity of her condition when she was treated for a bowel blockage and malnutrition, complications she attributes to her liquid diet and long-term use of painkillers. During this time, she reports experiencing dismissive attitudes from medical staff, including being told her symptoms were “all in her head.”
By 2024, the debilitating pain forced Naomi to leave her role as a children’s social, emotional, and mental health tutor, a decision that deeply impacted her sense of identity and contribution to society.
In 2025, she was finally diagnosed with severe temporomandibular joint disorder (TMJ) coupled with jaw arthritis. Despite the diagnosis, access to treatment has been slow, with anticipated waits of up to four years for necessary keyhole surgery (arthroscopy).
Naomi describes her daily life as dominated by constant facial pain, migraines, dizziness, nausea, and sensory losses including hearing and vision impairments. She relies on a liquid diet, takes approximately 50 tablets daily, and experiences significant physical limitations, such as loss of finger dexterity and inability to raise her arms overhead.
Efforts to engage with NHS services have been mixed. Following media attention, Naomi received some referrals and appointments; however, many were subsequently cancelled. She recounts over 30 cancelled appointments in recent months and a lack of consistent follow-up after consultations, despite assurances from healthcare teams.
She has also pursued private treatments-Botox injections, chiropractic care, osteopathy, acupuncture, and healing sessions-with limited relief. Recently, she received nerve-blocking injections that eased pain temporarily but did not offer lasting respite.
Determined to improve her quality of life, Naomi has launched a fundraising campaign seeking £95,000 for a private bilateral jaw replacement surgery-a complex procedure that replaces the joints connecting the lower jaw to the skull. She emphasises that although the surgery will not eliminate all pain, it would enable her to eat and chew again, greatly enhancing her daily existence.
Naomi lives with her son, with her family expressing ongoing concern for her health. Despite the challenges, she continues to hold onto hope for change. “Sometimes I think if the universe wants me to live, someone will step in and something will change,” she says.
A spokesperson for Gloucestershire Hospitals NHS Foundation Trust acknowledged Naomi’s ongoing pain and the impact on her quality of life. The trust confirmed she remains under clinical care, with ongoing investigations into her complex condition. They also noted that her complaints are being addressed through formal processes and efforts continue to resolve her concerns.
Naomi’s story highlights the profound challenges faced by patients with complex chronic conditions and underscores the importance of timely diagnosis, effective treatment, and compassionate care within the NHS.