Investigations
25. Mrs T complains the Practice failed to investigate her concerns about the constant movement of her tongue and jaw. She says she had to go privately and was eventually diagnosed with a buckle and oral dystonia (a neurological movement disorder characterised by continuous or intermittent muscle contractions which cause abnormal, painful and repetitive movements in the mouth, tongue, and/or jaw).
26. After seeing a neurologist consultant privately, Mrs T required Botox treatment of the tongue, and ongoing neurology support to address her symptoms.
27. The Practice responded to Mrs T’s complaint on 11 July 2025. It says she attended the surgery with her symptoms on 9 December 2024, and the records refer to her tongue involuntarily flipping to the side while resting.
28. The Practice says the management plan included blood tests, an ultrasound scan of her neck, and an advice letter to the ear, nose and throat (ENT) department at the hospital. It outlines the results which came back normal.
29. The Practice also explains the advice and guidance letter was written on 13 December and uploaded on their system on 20 December. It says no response was received from the hospital.
30. The Practice explains in this letter, the GP mentioned if the problem related to behavioural issues and apologised if it caused offence. It says it did not mean to diminish the impact or impact of Mrs T’s symptoms.
31. The response also refers to the next contact with Mrs T which was on 10 June via a telephone consultation. It says by then Mrs T had seen a neurologist privately and stopped elvanse (medication used to treat attention deficit hyperactivity disorder).
32. At the time, Mrs T explained her symptoms had 80 percent improvement.
33. A trial of a diazepam was offered to Mrs T. The GP also submitted an advice and guidance letter to a consultant at the hospital in North Yorkshire area explaining Mrs T’s symptoms had not fully resolved and asked for advice on what to do next if the symptoms had not settled.
34. The Practice says this letter was uploaded on to the system on 20 June 2025. The Practice says it does not feel Mrs T’s symptoms have been dismissed, and appropriate investigations were made from the first consultation to discuss her tongue symptoms.
35. The Practice says it is regrettable it did not receive a timely response from the advice and guidance letter to ENT, as this may have precluded her decision to book a private appointment. The Practice offers its apologies for the phrasing of the letter to the ENT, and says this been raised to the clinician involved.
36. The evidence shows Mrs T first presented to the Practice on 9 December 2024, with multiple issues which she thought were all linked. The consultation notes outline ‘… also reports that her tongue can flip to one side on its own while at rest and also can have a dry mouth and lips.’
37. The evidence also notes the GP completed a physical examination and observed ‘tongue noted to flip/twist to the right in mouth, patient was able to stick tongue out of mouth normally’.
38. From the consultation, the GP’s plan was for advice and guidance from ENT about ‘strange tongue movement’.
39. General Medical Council (GMC) guidance in Good Medical Practice stresses the importance of providing ‘good standard of practice and care’. It states, if you assess, diagnose, or treat patients, you must work in partnership with them to assess their needs and priorities. The investigation or treatment you propose, provide or arrange must be based on this assessment, and on your clinical judgement about the likely effectiveness of the treatment options’.
40. Our adviser adds there is no evidence to suggest Mrs T was not appropriately listened to, and a thorough history and examination with further investigation such as blood tests, an ultrasound scan, and an advice and guidance request to ENT. Our adviser says there was a clear plan to investigate Mrs T’s symptoms in line with the GMC’s Good Medical Practice guidelines.
41. We also considered whether any further actions were required from the GP to prevent Mrs T reaching out to private consultations.
42. The evidence shows Mrs T did not contact the Practice after these tests. The next contact after her initial consultation was on 10 June 2025 about her tongue and jaw symptoms. By this time, Mrs T had consultations privately, and the GP noted ‘stopped elvanse and helped by 80%... Diazepam 2mg tablets – 8 tablet – take one as needed for oral dyskinesia [involuntary movements of the oral muscles] …’.
43. In between the time from Mrs T’s initial consultation on 9 December 2024 and 10 June 2025, there is a six-month gap, and there was no contact between this time from Mrs T to the Practice.
44. Our adviser explains the Practice would rely on Mrs T getting back in touch if the symptoms were not settling. As Mrs T did not contact the Practice, the Practice did not have a chance to take any further action before she arranged for private consultations. As such, we cannot see anything went wrong here.
45. We appreciate how worrying and frustrating it was for Mrs T especially when she felt unwell, and approached her GP for reassurance, and answers. We want to acknowledge Mrs T’s concerns, and the importance of feeling listened to during a consultation. We have reviewed the available information. We are reassured the GP did assess and investigate Mrs T’s symptoms appropriately at the time in line with GMC’s guidance on Good Medical Practice.
46. We can also see the Practice was not contacted prior to Mrs T arranging private consultations. As such, we cannot find any indications of failings in this complaint aspect.
Dismissal of symptoms
47. Mrs T complains the Practice dismissed her symptoms relating to the constant movement of her tongue and jaw and placed it on her behaviour and attention deficit hyperactivity disorder (ADHD – neurodevelopmental disorder characterised by persistent patterns of inattention, hyperactivity, and impulsivity) diagnosis.
48. Our adviser explains as Mrs T’s symptoms are quite rare, the evidence shows the GP tried to cover all bases. While the GP noted in the consultation, ‘initially I thought this was behavioural’, on the advice and guidance letter, our adviser says Mrs T’s symptoms have not been dismissed, and the GP is entitled to give their differential diagnosis.
49. As referenced in Clinical Method: A General Practice Approach by Robin C. Fraser, a GP’s differential diagnosis consists of two lists:
50. The most likely diagnoses – based on probability 51. The important diagnoses – less likely but based on seriousness or treatability
52. In Royal College of General Practitioner’s (RCGP) The Curriculum Topic Guides, ‘diagnostic features and differential diagnosis’ is listed as an important part of the clinical knowledge and skills GPs are expected to apply as part of assessing and interpreting patient’s presentations.
53. We can also see the complaint response apologised to Mrs T for any offence caused by the wording in the advice and guidance request.
54. This is in line with the NHS complaint standards of giving fair and accountable responses which say, ‘Wherever possible, staff explain why things went wrong and identify suitable ways to put things right for people. Staff give meaningful and sincere apologies and explanations that openly reflect the impact on the people concerned.’ As such, we can see this has taken place, and we will not consider this issue further.
55. We recognise Mrs T feels her symptoms were dismissed and perceived as behavioural. We understand how upsetting and invalidating this experience can feel. It is important to acknowledge the impact this may have had on her confidence in the consultation.
56. Having reviewed the clinical records, and advice from our adviser, there is no evidence to suggest her symptoms were dismissed or the GP failed to take them seriously. As we can see the GP acted within its professional capacity to consider Mrs T’s symptoms and apologised for any offence caused. We cannot see anything went wrong in this aspect of Mrs T’s complaint.
Referrals
57. On the complaint form, Mr T notes his wife needs Botox of the tongue and ongoing neurologist support to address this issue. He says they have had an urgent referral recommended by the private consultant. Since then, Mr and Mrs T have been informed by the team at the hospital the urgent referral is likely to be 12 months. He says this is completely unacceptable as something which is having such a significant impact on Mrs T’s life to be told to wait 12 months.
58. While the Practice has not had a chance to respond to these concerns, we have looked at the records to consider whether the actions of the Practice have been appropriate and in line with national guidance.
59. The evidence shows Mrs T had a consultation with one of the Practice’s GP on 23 June 2025 due to her ongoing issues with her tongue. The outcome of the consultation was the GP submitted an advice and guidance request to the neurology department and informed her a response would be required before considering any other alternatives. The GP also advised Mrs T it can take weeks for a reply. Mrs T informed the GP she would seek a private appointment.
60. The GP received a response on 3 July 2025 from the neurology team, which advised the Practice to refer Mrs T to the movement disorder clinic.
61. The consultation notes also shows the GP contacted Mrs T on 14 July informing her a referral to the movement disorder clinic was completed with a view to give her the tongue injections. Mrs T was also informed the Practice were in the process to setting up a referral to avoid any further delays.
62. We can see the Practice submitted a referral to the hospital on 15 July 2025. The Practice also emphasised the impact of her condition and requested to be seen as soon as possible. It was quickly acknowledged the referral was submitted as routine and not urgent.
63. Considering the above, we can see the GP acted in line with GMC guidance on Good Medical Practice which states under paragraph 7c, the practitioner should ‘promptly provide (or arrange) suitable advice, investigation or treatment where necessary’.
64. As such, the GP used clinical judgement to assess Mrs T during her consultation on 23 June and determined urgent specialist input was required.
65. This was also communicated with Mr and Mrs T on 17 July. During this conversation, it was explained to Mr and Mrs T the triage and appointment dates are beyond the Practice’s control, and there is no separate Botox clinic they could refer Mrs T directly to, and this would need to come from the neurology department.
66. The records show the new referral was marked as urgent and submitted on 23 July. From this information, we can say the Practice did what they said they would do and sent the referral in a timely manner.
67. NHS Digital in Supporting Clinical Referral Pathways – NHS e-Referral Service (e-RS) states once a GP has submitted a referral into the NHS e-referral service and selected the appropriate service, the timing of appointment booking and triage lies with the receiving provider.
68. The above shows the triage and the timing of appointment allocation in NHS waiting lists are beyond a Practice’s control, and we cannot see anything went wrong here.
69. Understandably, this is another incident which left Mr and Mrs T frustrated. It is clear from the complaint form, the delays in receiving an appointment have impacted Mrs T significantly. We appreciate Mr and Mrs T’s concerns, and we would like to reassure them that we have carefully reviewed their account of what happened along with the evidence.
70. Overall, we have not seen any indication of failings in the Practice’s actions. We do understand the significant amount of distress and worry Mr and Mrs T experienced during these events and appreciate why they were concerned about the investigations and waiting for appointments. We hope our explanations above clearly set out the reasons for our decision.