An independent provider in the Leeds area

The Mid Yorkshire Trust

4. Miss T complains about aspects of the care and treatment radiologists and neurologists from the Mid Yorkshire Trust have provided to her since 2014. Specifically, she says doctors:

• misdiagnosed her as having a syrinx (a cyst or collection of fluid in the spinal cord) between vertebrae L2/L3 (bones in the lower back) when she understands she has a split in her spinal cord from birth

• failed to recognise she had a compressed lumbar nerve root between vertebrae L4/L5

• refused to carry out a scan with contrast in July and August 2023 despite specific medical instructions

• refused to refer her to a regional spinal unit.

5. Miss T also complains about how doctors from the Mid Yorkshire Trust have managed her gynaecological conditions since August 2021.

The Leeds Trust

6. Miss T complains that, in July 2022, a doctor dismissed her concerns about a scan of her lumbar spine.

An independent provider in the Sheffield area (the Provider)

7. Miss T complains that, in May 2021, a neurosurgeon dismissed her concerns about a compressed lumbar nerve root.

All organisations

8. Miss T says failings in care and treatment have left her in severe and prolonged pain. She also says her concerns have been unfairly dismissed by doctors which has been distressing for her and has affected her mental health.

9. Miss T wants the organisations to accept their failings and apologise for the impact they have had. She wants to ensure they improve their services. She also seeks a financial remedy.

10. Miss T has attended consultations at many different hospitals from 2014 onwards with a range of different medical problems. In this section of the report, we have referred only to those issues that are relevant to the organisations and issues we have agreed to investigate.

11. Miss T has spina bifida occulta (this is a condition where the bones in the spine do not develop properly before birth, but it does not usually cause any severe problems). On 6 January 2014 she attended Pontefract Hospital (part of the Mid Yorkshire Trust) for an MRI scan of her spine. The radiologist noted evidence of spina bifida at L5 and S1 (the lumbosacral joint in the lower back) and evidence of a tethered low-lying cord (meaning the cord was attached to the spinal canal) and diastematomyelia (where part of the spinal cord is split). The scan also showed a possible syrinx between L2/L3, although this could not be confirmed.

12. On 3 February 2014 Miss T attended an appointment at Pinderfields Hospital (also part of the Mid Yorkshire Trust) with a consultant in neurorehabilitation. Miss T said she was fatigued. The consultant noted Miss T had scoliosis (an irregular curve of the spine) and a trapped nerve. The consultant recommended an analysis of Miss T’s gait and prescribed pain relief for use when needed. Miss T attended a further appointment with the same consultant in May. The consultant considered the severe back pain Miss T described was linked to anxiety and bereavement. They prescribed medication for anxiety and gave advice about how Miss T could manage her problems.

13. On 26 June 2014 Miss T attended an appointment with Mr Y (Consultant Neurosurgeon) at Leeds General Infirmary (part of the Leeds Trust). Mr Y talked to her about the tethered spinal cord and how surgery might not address her problems and could possibly cause issues with her lower limbs, bladder, or bowels. Miss T said she did not want surgery at that stage. Mr Y planned to see her again in two years unless she changed her mind about surgery.

14. In October 2014 Miss T saw her GP with ongoing back pain despite taking medication. She also described constipation and numbness in one of her legs. The GP sought advice and then advised Miss T to attend the local emergency department. The GP asked doctors at Pinderfields Hospital to exclude cauda equina syndrome (CES).

15. The cauda equina is a collection of nerves at the bottom of the spinal cord. CES is a rare nerve problem affecting the legs and lower back and which can lead to serious complications. It develops suddenly and requires urgent decompression surgery. Doctors at Pinderfields arranged a second MRI scan. This showed no evidence of CES or spinal compression. There were no changes from the first scan.

16. On 21 June 2017 Miss T attended the emergency department at Pinderfields Hospital. This led to her having an MRI scan of her brain and whole spine. This did not show any concerns and there were no reported changes from the 2014 MRI scans. Around this time Miss T received copies of some of her clinical records and became worried about aspects of her care and treatment since 2014.

17. Over the following years Miss T attended consultations at various NHS and private hospitals and had further scans and investigations. She made separate complaints to many of the organisations involved in her care. She questioned whether she had a more serious underlying condition such as cancer, CES or multiple sclerosis. Doctors investigated her concerns and found no evidence she had any of those conditions.

18. In March 2018 Miss T attended a consultation at Dewsbury and District Hospital (part of the Mid Yorkshire Trust) with a consultant neurologist. Miss T was concerned she had multiple sclerosis or a spinal tumour. The computers were not functioning properly so the consultant could not carry out a full review. They said they would review recent scans as soon as possible.

19. A few days later the consultant was able to review the scans. They said the scans showed no evidence of a tumour and there was only a mild abnormality, which was a syrinx in the lumbar spine which looked like it had been present for a long time. The consultant said no further action was needed by neurologists. They said the syrinx did not explain Miss T’s complex pain problems.

20. In May 2021 Miss T attended an appointment at the Provider with Mr V (Consultant Neurosurgeon). Mr V reiterated to Miss T that she had had spina bifida, diastematomyelia and spinal cord tethering from birth. He also explained that the Provider did not offer surgery for spinal cord tethering and that it would in any case be unlikely to benefit her. He said she did not have a compressed lumbar nerve root.

21. In June 2021 Miss T attended Pinderfields Hospital because of lower back pain and urinary incontinence. Doctors arranged an MRI scan to check whether there was evidence of CES or spinal compression. The scan showed no evidence of these problems.

22. Miss T’s GP referred her to gynaecologists at Pontefract Hospital in August 2021 for suspected cancer. She had been experiencing vaginal bleeding. Before her appointment could take place, she attended Pinderfields Hospital on 15 August. A gynaecologist reviewed her and carried out an internal examination, which did not show any concerns. The doctor made arrangements for a hysteroscopy (a test to investigate the womb using a camera) and biopsy.

23. On 24 August 2021 Miss T saw a doctor in the gynaecology department at Pinderfields Hospital at her suspected cancer appointment. The doctor confirmed Miss T went through the menopause in 2016 and had not had any bleeding until the recent episode. The doctor noted there had been recent ultrasound scans showing two small cysts in her ovaries (measuring 12mm and 30mm). The doctor performed an internal examination and found the appearance normal.

24. On 2 September 2021 Miss T attended an appointment with Mr B (Consultant Gynaecologist). She had the planned hysteroscopy and a biopsy. The hysteroscopy and biopsy showed no issues of concern. At a follow-up appointment six months later an ultrasound scan showed one of the cysts had resolved and the other remained the same size. Mr B discharged Miss T from his care.

25. In July 2022 Miss T attended a meeting with representatives from the Mid Yorkshire Trust to discuss questions she had about her MRI scans. The Trust’s record of the meeting refers to detailed explanations the representatives gave to Miss T about her condition and the MRI images. Miss T enquired about whether it was possible for clinicians to refer her to the spinal injuries unit. The representatives said they could not make a referral, which a GP would need to make.

26. Miss T attended an appointment with Mr Y at Leeds General Infirmary (part of the Leeds Trust) in July 2022. Her GP had made a referral because of concerns about her continuing episodes of constipation and lower back pain. Mr Y and his colleagues could not find a cause for her continuing symptoms. Mr Y maintained his views and considered the recent scan images showed no significant changes from those he saw in 2014. Mr Y said there was a small volume syrinx which was not a cause for concern and had not changed in appearance since 2014.

27. On 3 September 2022 Miss T attended the emergency department at Pinderfields Hospital. She was experiencing lower back pain, incontinence, and constipation. She told doctors she thought she had CES. Doctors arranged various tests, including an MRI scan. The MRI scan showed no evidence of CES.

28. On 27 September 2022 Miss T attended a meeting with Mr B at Pinderfields Hospital to discuss her concerns about gynaecology. Mr B attempted to reassure her there was no indication she had any signs of fallopian tube cancer. He offered to arrange an MRI scan with the hope this would give Miss T further reassurance.

29. On 24 January 2023 Miss T attended Mr B’s clinic again to review the MRI scan. Miss T had not experienced any vaginal bleeding in recent months but said she had experienced pain around her pelvis. Mr B said the scan showed changes in the womb which could have been endometriosis (where deposits of the lining of the womb are found outside the uterine cavity, and which can cause pelvic pain). He confirmed there was no evidence of fallopian tube cancer.

30. Mr B said he did not consider the suspected endometriosis was the cause of Miss T’s extreme fatigue or pelvic pain. He said it was unusual for endometriosis to cause pelvic pain in women who have already been through the menopause. He arranged test results before recommending further treatment.

31. On 28 March 2023 Miss T saw Mr B again. Mr B explained the recent MRI scan suggested she had uterine adenomyosis (where deposits of the lining of the womb are found within the walls of the womb, which can lead to pelvic pain) as well as endometriosis. Miss T said she wanted surgery to confirm the diagnosis of endometriosis. She also wanted surgery to remove uterine adenomyosis. Mr B agreed to put Miss T on the waiting list for surgery to help diagnose, and possibly treat, endometriosis. He declined to offer surgery for adenomyosis but said he would be willing to refer her elsewhere for an opinion about that. Miss T did not want him to make that referral.

32. In June 2023 Miss T attended Mr B’s clinic. She said she wanted to see the MRI images before agreeing to any surgery. Mr B showed her this information and reports from radiology. Miss T said she wanted to wait for any gynaecological surgery until after her spinal problems had been resolved. Miss T agreed to contact the clinic when she wanted to return to the waiting list.

33. Miss T attended the emergency department at Pinderfields Hospital on 13 July 2023. She was concerned about spinal cord compression and refused to accept she did not have CES. Miss T said her back pain had suddenly stopped after being constant for many years. She was worried that she could not empty her bladder. A doctor examined her and noted Miss T leaned to one side when walking. They arranged further investigations, including an MRI scan. The scan showed no evidence of CES or any changes from previous scans. Miss T did not accept this because she said the scan was not performed properly and the radiologist should have used contrast. The radiologist declined to repeat the scan despite several contacts from Miss T over the following months.

34. Miss T attended Pontefract Hospital for a repeat MRI scan on 12 August 2023. The radiologist noted the request from the GP was for the scan to be carried out with contrast. Because this was unusual, they checked with their manager who said there was no need for contrast. Miss T did not accept this and refused to have another scan without contrast.

Mid Yorkshire Hospitals

Spinal diagnoses

37. Miss T says doctors have misdiagnosed her spinal problems from 2014 onwards. She says they told her she has a syrinx when she has diastematomyelia. She also says they failed to identify that she has a compressed lumbar nerve root. She believes, from her own review of scan images, that there is evidence of an abnormality sticking through the cauda equina.

38. Miss T says ‘I believe all radiologists at the Mid Yorkshire Trust have failed to accurately diagnose me with spinal cord injury red flag medical emergency partial cauda equina causing spinal compression lumbar nerve root from February 2014 onwards.’ She believes these problems arose after she experienced a violent assault on 14 February 2014.

39. The Neurosurgery Adviser told us there are no specific standards for the investigation of congenital disorders of the spine such as spina bifida. They said doctors should follow Good Medical Practice.

40. Good Medical Practice says doctors must provide a good standard of care. This includes carrying out adequate assessments, taking account of the patient’s history and examining them if necessary. Doctors should also arrange timely treatment and appropriate investigations or referrals if needed.

41. The Radiology Standards say a radiology report should allow clinicians to act on any findings to give appropriate care to a patient. It should answer the clinical question and include a tentative or differential diagnosis when an abnormality is seen. The wording of the report should be unambiguous.

42. The Radiology Adviser reviewed nine MRI scans and reports of Miss T’s spine dating from 2014 to 2023. They said the scan reports met the Radiology Standards. The radiologists answered the clinical questions requested by the referring clinicians and provided appropriate differential diagnoses of the abnormalities seen. The Radiology Adviser broadly agreed with the radiologists’ interpretation of the scans. They considered the radiology reports were descriptive and generally reached clear conclusions.

43. From the records we have seen at least six consultant radiologists from four different hospitals have reported on the MRI scans and interpreted them in broadly the same way. They did not identify any significant lumbar root compression and found no abnormality sticking through the cauda equina. At least one of the reports appears to have been made without any reference to previous scans or reports and so could not have been influenced by their content.

44. The Neurosurgery Adviser told us the clinical records show doctors listened to Miss T’s concerns. They arranged appropriate investigations for her and gave competent advice. Some of the doctors have considered whether surgery might resolve some of Miss T’s problems. The Neurosurgery Adviser said decisions about whether to offer surgery are a matter of clinical opinion. There can be differences of opinion and so there is no right or wrong answer. However, it would be rare for surgery to be recommended in these circumstances.

45. The Neurosurgery Adviser said there were no contradictions between the specialists who had reviewed Miss T over the years regarding her lower back problems. The clinical records show there has been no significant change in her neurosurgical condition. The records consistently refer to the same diagnoses relating to Miss T’s lower spine. Doctors have noted Miss T has spina bifida, diastematomyelia and a tethered cord.

46. Radiologists have also consistently reported that Miss T either has a prominent fifth ventricle (also known as ventriculus terminalis) or a small syrinx between vertebrae L2 and L3. Usually, they gave both provisional diagnoses in their reports. The Radiology Adviser told us a syrinx is the term for a small collection of fluid in the spinal cord. This is often a very longstanding finding. The fifth ventricle is a structure in the spine that is normally very difficult to see in adults and would also be longstanding. If the MRI images do show a fifth ventricle this is larger than would be expected. It is not possible for us to determine which of these diagnoses is correct, but neither of them would be responsible for the symptoms Miss Striling has experienced over the years.

47. We find doctors followed Good Medical Practice when Miss T attended consultations with them about her lower back pain. The radiologists also followed the Radiology Standards. We appreciate Miss T considers she has an underlying condition that doctors have missed. Clearly this has been causing her significant worry for many years. We have seen no evidence these specialists have misdiagnosed Miss T or that they have missed any significant underlying conditions. We hope she is reassured we have closely considered all the available evidence in reaching this view.

Scan without contrast

48. Miss T complains that on 13 July 2023 a radiologist did not use contrast when carrying out an MRI scan. She believes this prevented doctors from identifying an underlying spinal condition. The Trust then refused to provide a scan with contrast when she objected to the decision.

49. MRI scans can take place with or without contrast. When contrast is used a clinician injects contrast material (a dye) into a vein. The aim is that the contrast will highlight blood vessels, organs, or specific soft tissues for easier investigation. The CES Pathway clearly explains how CES is a medical emergency and immediate clinical assessment is needed when a clinician suspects it. There is no requirement for contrast because this is not necessary to identify CES on an MRI scan.

50. The Radiology Adviser said the consultant radiologist took appropriate action by offering an MRI scan without contrast. They followed the CES Pathway in this respect.

51. The Radiology Adviser noted Miss T had a spinal MRI scan in February 2021 with contrast and this did not show any abnormalities. Miss T’s symptoms were longstanding and there was no requirement to use contrast again in September and October 2023.

52. We find the radiologist followed the CES Pathway when carrying out an MRI scan for Miss T on 13 July 2023. There was no need for clinicians to arrange a scan with contrast in July and August 2023.

Referral to spinal unit

53. Miss T complains that clinicians discriminated against her in July 2022 when they decided not to refer her to the specialist spinal cord injury unit. She says they told her this was not possible because she had a congenital problem.

54. Good Medical Practice says doctors must provide drugs or treatment only when they are satisfied it meets the patient’s needs. They must refer people to another suitably qualified practitioner when this meets their needs.

55. Miss T appears to have first referred to the possibility of a referral to the spinal cord injury unit on 29 July 2022 at the meeting she attended with representatives from the Mid Yorkshire Trust to discuss some of her complaints. The representatives suggested a GP would need to make the referral, but Miss T was not then registered with a GP. We can see no reference in the clinical records to doctors discussing the possibility of a referral with Miss T at any of her clinical appointments.

56. On 26 October 2022 the Mid Yorkshire Trust sent a complaint response to Miss T. In this letter it said people with congenital long-term conditions could not be referred to its spinal unit. It suggested she contact a GP to make a referral to her local neurorehabilitation unit.

57. In July 2023 Miss T complained again about this issue and suggested she was being discriminated against. The Mid Yorkshire Trust replied in August to explain that it was saddened Miss T considered it was discriminating against her. It said diastematomyelia was a congenital condition and was not covered in the scope of the specialist spinal cord injury unit commissioned by NHS England.

58. The Neurosurgery Adviser told us there is no guideline to say doctors should refer patients with congenital spinal disorders, such as spina bifida, to specialist spinal cord injury units. We have seen no indication of any discrimination by clinicians at the Mid Yorkshire Trust relating to this issue. We have already commented earlier in this report on the care doctors provided to Miss T for her spinal conditions. There was no requirement for them to make a referral to the specialist spinal cord injury unit because this did not meet her needs.

59. We find doctors followed Good Medical Practice when considering Miss T’s request for a referral. We recognise Miss T believes she needs treatment for an underlying spinal condition. We hope she is reassured we have seen no evidence of any failings in this respect.

Gynaecology

60. Miss T complains that doctors at the Mid Yorkshire Trust did not take her vaginal bleeding seriously when her GP referred her to them in August 2021. She was anxious that she had ovarian cancer. She also wanted to know why doctors did not investigate whether she had endometriosis or adenomyosis in 2021. She believes these issues have contributed to her severe lower back pain.

61. We asked the Gynaecology Adviser to explain what endometriosis and adenomyosis are. They said endometriosis is a condition where deposits of uterine lining (endometrium) are found outside the endometrial (uterine) cavity. The condition is associated with a wide variety of symptoms, from few or no symptoms to very severe and debilitating pelvic pain. The pain is usually but not always cyclical – varying with the menstrual cycle.

62. Adenomyosis is a related condition where deposits of endometrium are found within the uterine walls, and although this can have no symptoms, the condition is typically associated with cyclical pelvic pain (dysmenorrhoea). Typically, the symptoms resolve with onset of the menopause.

63. The Gynaecology Adviser told us there was no specific national guidance about investigating postmenopausal bleeding in 2021. The accepted practice was for a doctor to conduct an internal examination. Doctors should also arrange scans, such as ultrasound, or carry out a hysteroscopy or biopsy. As we have said above, Good Medical Practice, says doctors must arrange timely investigations and treatment.

64. The Ovarian Cysts Guideline explains how doctors should diagnose and treat ovarian cysts. It says surgery is not needed for some ovarian cysts. Surgery is not needed for small cysts (under 5cm in diameter) that are not causing symptoms and where the woman has a normal Ca125 level (this is a type of protein that is used to help diagnose or monitor ovarian or fallopian tube cancer).

65. The Endometriosis Guideline explains how doctors should diagnose and treat endometriosis. It explains that the most common symptom of endometriosis is chronic pelvic pain (meaning it has been present for at least six months). The other symptoms of endometriosis are period-related pain, deep pain after sexual intercourse, painful bowel movements, blood in the urine and infertility. The Endometriosis Guideline explains how hormonal treatments or surgery can be used to treat endometriosis.

66. In August 2021 Miss T’s GP referred her to the gynaecologists at Pinderfields Hospital. The GP said Miss T had been experiencing postmenopausal bleeding for four days. The clinical records gynaecologists made at the appointments she attended in 2021 and 2022 made no reference to pelvic pain. It was only in January 2023 following the MRI scan that Miss T specifically mentioned pelvic pain. There was no reason for doctors to suspect she had endometriosis, or adenomyosis, at that stage. They followed the Endometriosis Guideline because Miss T did not have any of the common symptoms of the condition.

67. The clinical records show doctors arranged appropriate investigations when Miss T attended the gynaecology clinic in August 2021 with postmenopausal bleeding. The doctors carried out internal examinations, arranged further investigations and reviewed a pelvic ultrasound scan. Her Ca125 level was within normal limits. We find the doctors followed Good Medical Practice when investigating possible causes of bleeding.

68. The doctors also diagnosed two small ovarian cysts, which were benign. These were smaller than 5cm in diameter and did not appear to be causing symptoms. Miss T’s Ca125 level was also within normal limits so there was no need for surgery. The doctors followed the Ovarian Cysts Guideline by offering conservative treatment.

69. Miss T’s gynaecological symptoms had changed when she saw Mr B again in January 2023. She complained of pain and fatigue and had not experienced bleeding for some time. Mr B noted that a recent MRI scan suggested possible endometriosis. He arranged hormone tests to ensure Miss T was menopausal and these confirmed that she was.

70. Mr B offered Miss T a three-month treatment of gonadotrophin (hormone injections to relieve pelvic pain associated with endometriosis) or hysterectomy with removal of the ovaries at the same time. These are the treatments recommended in the Endometriosis Guideline. Miss T initially agreed to surgery to confirm the diagnosis and resolve adenomyosis, but later changed her mind.

71. The Gynaecology Adviser said Mr B was right to comment that endometriosis and adenomyosis are most unlikely to be found for the first time after the menopause. These conditions usually affect younger women with active menstrual cycles. The Gynaecology Adviser said there is no evidence that either diagnosis has been confirmed. Adenomyosis can only be confirmed by surgery.

72. Doctors appear to have taken Miss T’s concerns seriously and arranged appropriate investigations. We recognise Miss T believes she has had significant health problems that have not been treated. This has clearly been distressing for her. There is no evidence of any failings relating to the actions of gynaecologists at Pinderfields Hospital. The clinical records show Mr B and his colleagues followed the relevant standards and guidelines. They found no evidence of cancer and managed Miss T’s problems appropriately.

The Leeds Trust

73. Miss T complains that Mr Y dismissed her concerns about a scan of her lumbar spine at a consultation she attended on 28 July 2022. She says she was certain something was sticking through her lumbar spine and Mr Y refused to consider this. She considers Mr Y conspired to cover up a serious diagnosis.

74. As we have said earlier in this report, there are no specific standards for the investigation of congenital disorders of the spine. Mr Y should have followed Good Medical Practice.

75. Mr Y noted Miss T’s condition was unchanged from his previous consultations with her in 2014. He said he could not identify cause for her ongoing back pain. He maintained his view that she had a small volume syrinx and a congenital split in her spinal cord.

76. The Neurosurgery Adviser told us there is no evidence Mr Y dismissed Miss T’s concerns. His record of the consultation shows that he reviewed her concerns and found that her condition was unchanged. Mr Y’s views were consistent with those of the other neurosurgeons, neurologists and radiologists who have reviewed Miss T over the years.

77. The evidence suggests Mr Y carried out an adequate assessment of Miss T’s condition. We find that he followed Good Medical Practice.

The Provider

78. Miss T complains that Mr V dismissed her concerns about a compressed lumbar nerve root at a consultation on 10 May 2021. She says he made inaccurate statements and did nothing to help her with debilitating pain.

79. As we have said earlier in this report, there are no specific standards for the investigation of congenital disorders of the spine. Mr V should have followed Good Medical Practice.

80. Mr V noted that he reviewed several MRI scans and other clinical records before his appointment with Miss T. The consultation lasted more than one hour. Mr V recalled that he explained to her that any surgery would be to address the spinal cord tethering and improve bladder function. He said surgery would not benefit the pain in her lower back. Mr V explained that the surgery was not available at the Provider, and she would need to be referred to a larger NHS hospital if she wanted that treatment.

81. Mr V recalled that he went through the scans with Miss T and explained that the area where she believed a bony spur was compressing the nerve root had a normal appearance. He said Miss T did not accept his explanation. He said there was no further treatment he could offer, and he discharged her back to the care of her GP.

82. Mr V noted Miss T said ‘overall [she was] very pleased with the discussion we had in clinic and she believes this is the first time she has had such detailed discussions.’ However, she explained how she felt the only way to change her management was to make a complaint.

83. The Neurosurgery Adviser said the records show Mr V clearly took time to listen to Miss T’s concerns and explained the MRI findings. Mr V’s views were consistent with those of the other specialists who have reviewed Miss T from 2014 onwards.

84. The evidence suggests Mr V carried out an adequate assessment when he saw Miss T on 10 May 2021. We have seen no evidence to suggest he made inaccurate statements. We find that he followed Good Medical Practice.

85. We have seen no evidence of any failings by the doctors we have investigated. We appreciate Miss T has strong views that they should have done more for her. Clearly, she has experienced distressing symptoms for many years. We are satisfied that doctors managed her appropriately in line with the relevant standards. We do not uphold Miss T’s complaint.

1. Miss T complains about the actions of various doctors from three different organisations who have reviewed her for spinal and gynaecological concerns between 2014 and 2023. We were sorry to read about the pain, anxiety and distress Miss T has been experiencing over a significant period of time.

2. We have carefully considered all the information Miss T has sent to us about the issue we agreed to investigate. We find the doctors followed the relevant standards and guidelines when caring for and treating Miss T. We do not uphold her complaint.

3. We recognise this will be disappointing for Miss T. We hope she is reassured that we have seen no evidence of any significant failings by the clinicians we have investigated.