Care and treatment
15. Mrs E says when she attended the Trust in early March 2024, a neurosurgeon downplayed her concerns about the results of her MRI scan. She is concerned the MRI scan showed a slight growth to her previously diagnosed colloid cyst and also showed indications of hydrocephalus for the first time. She complains the neurosurgeon would not operate on her, discharged her home, and arranged a repeat scan in six-to-eight months.
16. The Trust told us it discharged Mrs E after a neurosurgical registrar carried out a clinical assessment of Mrs E and reviewed the MRI scan. It said staff, including a consultant neurosurgeon, decided Mrs E’s clinical situation was not urgent and that she should have a follow-up scan in six months. It also said her GP could contact the neurosurgical team should she have concerns in the meantime. The Trust explained to us that it considers the plan at the time was reasonable.
17. The records show that in late February Mrs E had an outpatient MRI brain scan at the Trust which her GP requested. On the MRI request from the GP it states:
‘known colloid cyst and chronic migraine and tension headache. Has been reviewed by [Trust clinician] in the past who advised not for interval screening unless change of symptoms. Headaches recently worse and associated with lightheadeness and visual blurring’
18. The following day, the radiology team reported the results of the scan and referred these to the Trust’s neurosurgery team. A doctor from the neurosurgery team reviewed the scan results and requested the ophthalmology team review Mrs E to rule out papilledema (the swelling of the optic nerves at the back of the eyes). The plan was that if there was no papilledema the neurology team would arrange a follow-up appointment for Mrs E as an outpatient.
19. Just over a week later in early March, Mrs E attended A&E eye casualty at the Trust. The neurology team (the same doctor who reviewed Mrs E’s scan results in late February) also assessed Mrs E including considering the results of her recent MRI scan. They noted her history of a colloid cyst and that her recent MRI scan showed no changes to the cyst. They also noted her worsening headaches and that ophthalmology had determined no papilledema. After discussing Mrs E’s situation with a consultant, the doctor booked a follow-up MRI scan in six months time and discharged Mrs E.
20. In a letter to Mrs E’s GP about the neurology review in early March, which was dictated one week later and typed a further week later, the doctor wrote: ‘The patient was seen in ST3 within two weeks from her ED admission. After the review, I got to know that her symptoms remained the same during this period and there has been no relief in her headache’.
21. Our adviser explained there are no current guidelines for the treatment of colloid cysts, but they outlined what established good practice looks like.
22. We understand from our adviser that colloid cysts need treatment if they are symptomatic and that common symptoms include headaches which are secondary to hydrocephalus. Hydrocephalus is a build up of cerebrospinal fluid (CSF) causing raised brain pressure.
23. Our adviser explained that the MRI scan in late February 2024 showed:
• indications of hydrocephalus because there was an increased T2 signal in the periependymal margin (an area of the brain adjacent to the ventricles) • larger ventricles compared to Mrs E’s previous MRI scan in late 2021 which could be a sign of increased fluid accumulation and therefore increased pressure.
24. They also said that given Mrs E had presented with increasing headaches with associated visual blurring (leading to her GP requesting another scan), these symptoms were different to her previous chronic migraine headaches.
25. Our adviser further explained that although Mrs E’s headaches had remained stable in the period between the doctor reviewing the scan in late February and the appointment in early March, there is no documentation about the character of her headaches and how they changed which resulted in her consulting her GP. They said because her GP had requested a scan based on a change in the character of her headaches, Trust clinicians should have offered surgery either to remove the colloid cyst or to insert an intracranial pressure monitor to measure brain pressure.
26. The Ombudsman’s Clinical Standard outlines how organisations must act in accordance with recognised quality standards, established good practice or both when delivering clinical care. In this situation, where there are no relevant clinical guidelines or standards, we have considered the professional judgement of our adviser which is based on established good practice.
27. We consider the Trust should have arranged treatment for Mrs E following her appointment in early March (in the form of surgery to either remove her colloid cyst or to insert an intracranial pressure monitor) because her colloid cyst was symptomatic at the time.
28. We consider not doing so falls so far short of the Ombudsman’s Clinical Standard that it is a failing.
29. Where we see evidence of a failure, we go on to consider the impact the patient tells us they experienced as a result.
30. Mrs E says she knew from research she did and asking questions on a private group chat with similar patients how serious her condition could be therefore she decided to see a private neurosurgeon a week later. She says they arranged for her to have surgery to remove her colloid cyst on the NHS at another trust a distance from her home which incurred further costs. Mrs E also says she suffered significant distress and worry as a result of what happened.
31. Mrs E paid £315 to see a private neurosurgeon in mid-March who offered to arrange for her to have surgery on the NHS. Our adviser confirmed the surgery offered was the same as one of the options the Trust should have arranged following her appointment in early March. Mrs E tells us this surgery happened on the NHS in mid June 2024.
32. We asked our adviser about how quickly the Trust should have arranged surgery for Mrs E following the appointment in early March. They said discharging her at that time was reasonable as there were no immediate concerns. They explained that although there is no specific guidance in situations such as this because each case is guided by the patient’s clinical presentation, it would be reasonable to offer such surgery within four to six weeks.
33. We think if the Trust had done what it should have when it saw Mrs E in early March, she would, on the balance of probabilities, have had surgery sooner than she did, and would likely not have felt it necessary to pay to see a private neurosurgeon.
34. We understand why she was so worried about her condition after her appointment in early March, and why she decided to seek a private appointment which took place a week later.
35. After her private appointment in mid-March, there is no evidence that Mrs E returned to the Trust with the new information she had received from the private consultant. Therefore, Mrs E did not give the Trust the opportunity to put right what happened and we do not know what the result would have been had she done so. Because of this, we cannot attribute any additional costs she incurred to the Trust.
36. On that basis, we consider the injustice to Mrs E is that she suffered distress and worry over the period of a week after the Trust saw her in early March, and paid to see a private neurosurgeon.
37. We recommend the Trust take action to put right this injustice and have detailed the recommendations at the end of this report.
Complaint handling
38. Mrs E says the Trust did not take her concerns seriously including not apologising for what happened.
39. The Trust received concerns from Mrs E in late August 2024 and responded in early November 2024. It did not accept it should have arranged surgery for Mrs E following the appointment in early March.
40. We have identified failings in the care and treatment the Trust provided to Mrs E. We think the Trust should have identified the same failings when it investigated her complaint in line with The NHS Complaint Standards which say organisations should openly identify instances when things have gone wrong and take responsibility.
41. We consider this has caused Mrs E additional unnecessary distress. We will ask the Trust to put this right by apologising in line with our Principles for Remedy.