Sheffield Teaching Hospitals NHS Foundation Trust

4.Mrs G complains on behalf of her husband Mr G about the care and treatment he received at Sheffield Teaching Hospitals NHS Foundation Trust. She specifically complains the Trust:

• Failed to take appropriate steps between March to August 2023 to diagnose the spread of his thoracic cancer to his brain.

• Failed to record Mr and Mrs G’s concerns about the deterioration of his vision.

5.Mrs G considers her husband’s life expectancy and quality of life could have been much improved if the Trust had made the diagnosis earlier. Not having this has had a profound and upsetting impact on Mrs G and her daughter as they saw him suffer from the intense treatment and they missed out on spending valuable time with Mr G before he died.

6.She is upset the Trust said there was no record of Mr G’s eyesight concerns. She told us she regularly told the nurses and ward staff he was unable to read the fluid input/ output charts like other patients and would need assistance. She said she regularly completed the chart herself because of this.

7.Mrs G would like the Trust to change its practices so symptoms of brain cancer are taken seriously and investigated.

8.Mr G experienced severe left shoulder pain in November 2022. In February 2023 the Trust diagnosed locally advanced SMARCA4 deficient tumour of the mediastinum. This is a particularly rare form of thoracic cancer (any cancer located in the chest cavity which includes the lungs, oesophagus etc). As part of the diagnosis process he underwent a Positron Emission Tomography (PET) scan on 23 December 2022. This is an advanced imaging test where a dye is injected into the body and the scan shows how various organs are working by displaying how the dye moves around. It is commonly used in the detection and diagnosis of cancer. At that time, no other cancers were found.

9.The Trust told Mr G his condition was terminal. This meant he received palliative chemotherapy and radiotherapy treatment from February 2023. He was also diagnosed with Horner’s Syndrome during a consultation in February 2023 after he and his wife noticed a difference in his left eye pupil. Horner’s Syndrome is a neurological condition which is caused by damage to the nerves to the eye. Mrs G told us that during his chemotherapy and radiotherapy treatments, her husband required hospital admission for five days at a time due to the nature of the treatments being used. . In addition to this, she told us her husband required readmission to help manage his severe nausea and vomiting symptoms. She says during these admissions she would remind the wards’ staff about the Horner’s syndrome and the visual disturbance in her husband’s left eye.

10.On 14 August 2023 the Trust completed an MRI scan because Mr G had been experiencing worsening vomiting and visual symptoms along with a severe headache. This scan showed Mr G had three cerebral metastases, and it meant the thoracic cancer had spread to his brain. Mr G died 16 days following this additional diagnosis on 31 August 2023.

15.The condition Horner’s syndrome is central to this complaint so it is important to explain it first. Horner’s syndrome consists of a constricted (small) pupil, ptosis (lowering of the eyelid), reduced sweating on half the face, and enopthalmus (a sunken eyeball). An examination would consist of looking at the eye and the eyelid and shining a light into both pupils to see their reactivity. Part of the symptoms of Horner’s syndrome are visual disturbances in the affected eye. We have found no national guidance on how Horner’s syndrome should be diagnosed. We have taken account of the opinions of our clinical advisors to establish what good practice would look like for diagnosing the condition.

16.We have considered issue two first. This has allowed us to explore the evidence available in the records and review Mrs G’s account of events to take a balanced view of what happened. Once we have established what happened, we have then looked at issue one to understand whether the care and treatment received was appropriate.

Issue two – the Trust failed to record Mr and Mrs G’s concerns about the deterioration of his vision

17.Mrs G says she raised concerns about her husband’s visual disturbances with the Trust at various points. She says she first raised it during a consultation in February 2023 when the Horner’s syndrome was diagnosed. She explains her husband suffered from extensive nausea and weight loss when undergoing chemotherapy between February and August 2023. She says each round would require hospital admission for several days to help manage her husband’s symptoms. She says during this time she would tell staff about the Horner’s syndrome and the visual disturbances associated with it in his left eye. She says in particular, she would help her husband complete his fluid monitoring charts as he could not see or complete the form clearly. She believes not acting on her and her husband’s reports of visual disturbances during these admissions were missed opportunities to conduct further investigation – she thinks these would have led to earlier identification of her husband’s brain tumours.

18.Both doctors and nurses are required by their codes of conduct to make accurate records; Part 19 of Good Medical Practice and part ten of the Nursing and Midwifery Council Code.

19.From our review of the records, we have seen some recording of the presence of the Horner’s syndrome and visual disturbance. The consultant oncologist’s clinical letter in February 2023, following the consultation, diagnosed Horner’s syndrome and said it was likely caused by the thoracic cancer. There are more detailed observations in the inpatient elective admission form also completed on 16 February 2023. This says there is a new problem of Horner’s syndrome noted in the left eye, particularly a pin point pupil. It also says the eye was not bloodshot, did not have a drooping eye lid and there was no affected vision i.e. no visual disturbance.

20. We have seen Mr G had significant problems during his chemotherapy with nausea and constipation. He received treatment for these during his multiple admissions between February and August 2023. There is a particularly detailed record on 17 April 2023 by palliative medicine which discusses his symptoms in depth. Visual concerns are not recorded in these notes. Mr G’s clinical records also noted nerve problems he was experiencing, but not specifically the Horner’s syndrome. We have not seen visual disturbances noted as a concern in the records of these admissions. Mrs G says they did not report the visual concerns to palliative medicine because there would be no therapeutic treatment for this which could be offered. We have seen in the complaint correspondence how Mrs G voiced her concerns about the Horner’s syndrome not being taken seriously immediately when her husband’s brain tumours were found.

21.We have examined the fluid output charts carefully as Mrs G believes this supports her account that her husband was suffering from visual disturbances (as he couldn’t see well enough to complete these charts himself) and her account that she reported visual disturbances to staff at the time. She told us this happened from April onwards. Unfortunately,not all of the entries are signed, so we cannot establish who wrote the information onto the sheets - whether it was nursing staff, Mrs G or her husband. We also appreciate, in the observation records, there is not a prompt to ask about concerns around vision/visual disturbances and can understand how there was no obvious place for it to be recorded. There is no recording of any visual symptoms in the nursing notes.

22.We have already stated at paragraph 16 that visual disturbances are a known symptom of Horner’s syndrome. We accept either Mr or Mrs G would have reported the visual disturbances as part of the wider symptom reporting during admissions. We can see evidence that Mrs G raised her concerns about the Horner’s syndrome not being taken seriously instantly after her husband’s brain tumour was discovered. We also have found through our review of the records that the Trust recorded in detail all other symptoms Mr G reported prior to his brain tumour being diagnosed. We have also considered if there is evidence the Trust omitted to record symptoms of visual disturbances. However, some detailed aspects of the medical records do not allude to visual disturbances. In particular, we are conscious of the palliative care note which is several pages long and goes in depth into Mr G’s symptoms and treatment for these – it does not mention visual disturbances as a symptom. This means we are faced with two pieces of evidence which are at odds with each other, Mrs G’s account and the medical records. In the absence of further evidence to help us establish what occurred, we are unable to say one is more likely than the other and so unfortunately cannot reach a finding on this part of the complaint. We appreciate this will be distressing for Mrs G and that she understands how we have reached this view.

Issue one – The Trust failed to take appropriate steps between March to August 2023 to diagnose the spread of the cancer to the brain

23.Mrs G considers the Trust did not act quickly enough to diagnose her husband’s brain tumours. In particular, she feels the diagnosis of Horner’s syndrome was not conducted thoroughly and should have been a flag for the Trust to further investigate and monitor her husband much more closely. Mrs G appreciates her husband’s primary thoracic cancer was particularly rare. However, she considers this meant there was more uncertainty and no standard response for her husband’s treatment. Therefore, she believes the Trust should have proceeded with more caution. Mrs G says her husband suffered with severe nausea and vomiting between February and August 2023 She said they were later told this could be because of where Mr G’s brain tumours were positioned.

24.We have also considered part 15 of Good Medical Practice by the General Medical Council (GMC) which says a doctor should adequately assess a patient’s condition and provide or arrange suitable treatment, advice or investigations as necessary. We have considered the medical records along with journal articles and advice from our clinical advisor to form our views.

Scan results 25.In consultation with our neuro-oncologist adviser, we have looked at the PET scan results from 23 December 2022, two months before Mr G was diagnosed with Horner’s Syndrome. Mr G’s scan results did not show any indication of a brain tumour at that time. These results would have been known to the treating consultant oncologist as he was consistently involved in Mr G’s care at this time (when Mr G was diagnosed with Horner’s in February 2023). It would have been reasonable to rely on these scan results when assuming the cause of the Horner’s syndrome was from the thoracic cancer as opposed to an undiagnosed brain tumour. For these reasons, we do not consider a further scan was required as a result of this diagnosis.

Rarity of thoracic cancers spreading to cerebral cancers 26.We want to address Mrs G’s concerns that the rarity of her husband’s cancer meant there was no standard approach and more should have been done to investigate all symptoms; vision concerns and nausea/ vomiting. The Trust has also pointed to the rarity of the thoracic cancer developing into a brain tumour as a reason why further investigation or monitoring was not carried out at the time. It is important we reach an independent view on this point. Our neuro-oncologist shared with us the research paper Journal for Investigative Medicine: ‘SMARCA4-Deficient Undifferentiated Tumor or Thoracic Mass – A Rare Tumor With the Rarer Occurrence of Brain Metastasis: A Case Report and Review of the Literature’. This paper summarises a further 26 reports on the presentation of the cancer Mr G had and says none showed the development of brain tumours. We also note the presentation of the patient in this paper is different to the symptoms Mr G experienced. This reported patient had reported weakness in their upper limbs and seizures. We understand Mr G had headaches, visual disturbance and increasing nausea. It is therefore fair to say not only was Mr G’s thoracic cancer particularly rare, but the development of brain tumours associated with it is largely considered rarer again.

Position of the brain tumour 27.We have considered whether the position of the brain tumour was the cause of Mr G’s Horner’s syndrome and if, in hindsight, it could have been an early indicator of a brain tumour. Mrs G says it was explained to her the position of the tumours made her husband’s vomiting much worse. We reviewed the MRI scan on 14 August 2023 which discovered the brain tumour. It showed Mr G’s intracranial tumours were in the Frontal (two on the left) and Occipital (right) lobes. Our neuro-oncologist advisor told us the positions of these tumours could not be the cause of Mr G’s Horner’s syndrome in his left eye. They told us the symptoms of a brain tumour in the locations would be worsening headaches, difficulty speaking or getting the right words out, or a loss of vision that got progressively worse. This is in accordance with the Cancer Research UK website for brain tumour symptoms in differing parts of the brain.

28.We looked at Mr G’s admission in August 2023 which led to the MRI scan and subsequent brain tumour diagnosis. Our neuro-oncologist advisor told us indications for a tumour in Mr G’s location or signs that would require investigation would be worsening headaches, difficulty speaking or getting the right words out, or a loss of vision that got progressively worse. The National Institute for Health and Care Excellence (NICE) guidance NG99: ‘Brain tumours (primary) and brain metastases in over 16s’, says and MRI scan is the initial diagnostic test for brain tumours. His previous admissions showed the nausea, vomiting and constipation symptoms he was experiencing which were largely explained as side effects of the chemotherapy he was receiving. The difference in Mr G’s symptoms during the August 2023 admission was the worsening of these symptoms with the addition of a debilitating headache.

29.Based on our review of the records and the advice we have received, we find that the actions taken by the Trust were responsive to the symptoms Mr G described. The Horner’s syndrome was not the precursor to the brain tumours as Mrs G previously thought. We understand this was already a distressing time for Mr and Mrs G due to previous terminal diagnosis of the thoracic cancer. The discovery of a secondary cancer in the brain compounded this. We hope Mrs G can see we have taken her views seriously and looked at every angle to establish whether anything more could have been done to diagnose her husband’s brain tumour earlier.

1. We offer our sincere condolences to Mrs G and her family. From our own review of the records we have seen the extent her husband suffered through the treatment of his primary cancer and severe symptoms caused by the secondary cancer. We understand this was a distressing time for all involved and their grief is ongoing

2.We found no maladministration in Mrs G’s complaint. We have carefully considered both her account and the medical records as to whether Mr G’s visual disturbances were raised with the Trust staff during his treatment. Unfortunately, the evidence is factually inconsistent with each other. We are not able to reach a view where we find one version of events more likely than the other. In addition, sadly, we cannot say even where visual disturbances from Horner’s syndrome were raised or recorded earlier, Mr G’s brain tumour would have been found any earlier. From our review of the records and in-put from our clinical advisor, we have seen the Horner’s syndrome was caused by his existing thoracic cancer. It was not a sign of a brain tumour developing.

3.We recognise the worry and anguish Mrs G has experienced through this complaint. She believes an important part of her husband’s deterioration had been missed which could have led to earlier diagnosis and improved treatments for the end of his life. Through her complaint we have found the Horner’s syndrome was unrelated to the development of the brain tumour. While we cannot say the awful circumstances of her husband’s treatment and final days could have been eased, we hope this investigation can bring answers to her questions and help provide closure.