Guy's and St Thomas' NHS Foundation Trust

2. Mr A complains about the care provided to his wife, Mrs B, by Guy’s and St Thomas’ NHS Foundation Trust (the Trust) from November 2022 until 27 October 2023. Specifically:

• Mr A says that him and his wife were never made aware by the Trust to look out for symptoms of dry mouth or the risk of mucus build-up when using a Non-Invasive Ventilator (NIV) continuously like Mrs B had to • Mr A says that him and his wife were never made aware by the Trust of a humidifier that could be added to the NIV to prevent mucus drying and building up at the back of Mrs B’s throat.

3. Mrs B had a diagnosis of Motor Neurone Disease (MND). Mr A says that his wife also suffered from a dry mouth and mucus build-up during this episode of care. On 22 October 2023, Mrs B was admitted to hospital to see if her mucus build-up could be removed. Unfortunately, this would have involved a major operation which Mrs B would have been unlikely to survive. Therefore, she decided to go home under palliative care. The Trust then provided Mrs B with a humidifier for her NIV as it was felt this would soften the hardened mucus and prevent further build-up. Tragically, Mr A says this was not the case. On 27 October 2023, the humidifier had softened all Mrs B’s mucus, it slipped down her throat, blocking her airway and choking her to death. Therefore, Mr A believes that his wife’s death could have been avoided at this time if the Trust had given him the right equipment at an earlier juncture. Mr A feels robbed of precious time with his wife, while witnessing the horrible and distressing death she endured has caused his own mental distress that is ongoing, even after having bereavement counselling.

4. As a set of outcomes, Mr A wants an apology from the Trust and acknowledgement that the lack of a humidifier with the NIV caused the hardened mucus build-up leading to his wife’s early and distressing death. Mr A also wants a financial remedy of £500 to pay for a headstone for his wife’s grave.

5. Please note that we have not included all the background to the complaint in this report as all parties already know this information. We have included the information outlined in this section to put the complaint into context.

6. Mrs B was 77 years old. She had been diagnosed with Motor Neurone Disease (MND) in 2020 which is a terminal condition. Mrs B was provided with a Non-Invasive Ventilator (NIV) by the Trust in March 2022 which she used increasingly to help her breath as her disease progressed.

7. A nurse from the Trust would visit Mrs B at home every 3 months to check on her and provide any necessary equipment. Mrs B also had occasional telephone consultations with her consultant.

8. By October 2023, Mr A says that Mrs B was finding it increasingly difficult to breath and swallow due to a large build-up of mucus which was stuck in the back of her throat, partially blocking her airway. Therefore, the Trust gave Mrs B a humidifier for her NIV as it was felt this would soften the hardened mucus and prevent further build-up.

9. Although the humidifier did soften Mrs B’s mucus, Mr A says the mucus slipped down Mrs B’s throat blocking her airway. Mr A says this resulted in Mrs B’s sad death on 27 October 2023.

Awareness of symptoms

14. Mr A says that him and his wife were never made aware by the Trust to look out for symptoms of dry mouth or the risk of mucus build-up when using a Non-Invasive Ventilator (NIV) continuously like Mrs B had to.

15. After Mrs B was given a NIV by the Trust in March 2022 to help her breath, we have asked our adviser if Mrs B and her husband should have been given any information by the Trust about potential symptoms from using a NIV such as dry mouth or mucus build-up.

16. Our adviser says while it was advisable and good practice for the Trust to make Mr A and Mrs B aware of relevant symptoms to look out for, it is not mandatory for the Trust to do so. This is in accordance with the relevant parts of the BTS/ICS, NICE and GMC guidance, as well as the article: Humidifiers during non-invasive ventilation.

17. Having considered Mrs B’s records with support from our adviser, there is nothing documented that indicates Mr A and Mrs B were made aware of potential symptoms such as dry mouth or mucus build-up. There is some evidence that the risks and benefits of Mrs B using a mask were discussed with them on 16 March 2022, but this is a separate matter. Mr A sent us a copy of an NIV patient information leaflet which details the potential side effects and risks of NIV that originates from another Trust, but there is no indication this leaflet was provided to him or his wife by the Trust at the time. Among other things, one of the potential side effects documented is a dry mouth.

18. Ideally, Mr A and Mrs B would have been made aware of potential symptoms at the outset, either in writing or verbally. It is unfortunate this did not happen, but we cannot say it is a failing by the Trust as it is not mandatory for the Trust to make patients and their relatives aware of potential symptoms.

Awareness of humidifier

19. Mr A says that him and his wife were never made aware by the Trust of a humidifier that could be added to the NIV to prevent mucus drying and building up at the back of Mrs B’s throat.

20. On 31 August 2023, Mr A says he told a nurse from the Trust who was visiting Mrs B that she was suffering from dryness of the nose, mouth, and throat. Therefore, Mr A feels these symptoms should have warranted a humidifier being provided by the Trust at this point, but the possibility of Mrs B using a humidifier was not raised by the nurse at this time.

21. Having considered the records from the nurse’s visit, our adviser says there is no evidence that these symptoms and the possibility of Mrs B using a humidifier were discussed during the nurse’s visit which was approximately two months before she sadly died. Mrs B did not get access to a humidifier until October 2023 shortly before she died.

22. On the balance of probabilities, our adviser says it would have been reasonable for the Trust to make Mr A and Mrs B aware of the possibility of using a humidifier and provide it at an earlier juncture, if she was complaining about dryness of the nose, mouth and throat. This may have made a temporary difference to Mrs B’s secretion load and dry mouth on the balance of probabilities. It would also have been reasonable to consider mucolytic therapy (carbocisteine) which is medication that thins and loosens mucus at the same time as humidification, but again this would have only provided temporary relief of her secretion issues. This is in accordance with section 1.8.15 of the NICE guidance on MND assessment and management which states: ‘if a person with MND has thick, tenacious saliva: consider treatment with humidification, nebulisers and carbocisteine.

23. We cannot fully verify if Mr A or Mrs B told the nurse on 31 August 2023 about Mrs B’s symptoms. There is nothing documented in the records which Mr A has acknowledged. However, having considered the Trust’s complaint response, minutes from the meeting on 24 April 2024 state: ‘the team should have been more proactive with humidification, and it should have been tried earlier’. This was acknowledged by a Clinical Lead at the Trust.

24. The BTS/ICS guidance on humidification with NIV (point 6) good practice note states: ‘heated humidification should be considered if the patient reports mucosal dryness or if respiratory secretions are thick and tenacious’.

25. On the balance of probabilities, we consider this is a failing by the Trust contrary to the BTS/ICS good practice note as Mrs B should have been given a humidifier at an earlier juncture to try and alleviate her symptoms. Nevertheless, the Trust has already acknowledged this and apologised. It has provided assurances in the complaint response that in future, all patients receiving mechanical ventilation for more than 16 hours will be offered humidified circuits as part of their routine care. Therefore, we consider this is appropriate remedial action in the circumstances and there is no further action for us to take.

26. Even if Mrs B had been given a humidifier sooner than she was, while it may have temporarily alleviated some of her symptoms, our adviser says it would not have prevented what happened to her in October 2023. Given the progressive nature of her MND and increasing throat/mouth muscle weakness, Mrs B was increasingly susceptible to mucus plugging (when thick, retained mucus blocks airways in the lungs) and secretion burden (difficulty managing excess saliva/mucus in the airways) despite the NIV with or without humidification. In other words, it is possible that the extent of the horrific circumstances around Mrs B’s death which Mr A had to witness could have been different if she had been using a humidifier for a longer period, but we cannot say this would have prevented her death.

Cause of death

27. We note that Mrs B’s Death Certificate states that she died due to her MND. Mr A says Mrs B died due to choking and this is supported by the report from the paramedic who attended to her, but he was told this cause of death could not be included on the Death Certificate unless an inquest took place which the family did not want.

28. Having considered the records, our adviser says they have not identified any concerns about the circumstances around Mrs B’s sad death. As above, Mrs B suffered from mucus plugging and overburden or respiratory secretions in the context of progressed MND, which is what Mr A has reported. This is an unfortunately common clinical scenario for patients with progressed MND and therefore, the circumstances described were not unexpected. We have not seen any evidence in the records that Mrs B’s death was avoidable.

29. This concludes our investigation of the complaint. Please note there are legal restrictions on disclosing information that we give you. This means that you cannot share or make public any information or documents we gave you during our investigation. The legal restrictions do not apply to this final report.

1. We have seen a failing by the Trust in that Mrs B should have been given a humidifier sooner than she was. However, the Trust has apologised for this and taken appropriate remedial action. It has provided assurances that future patients with similar conditions to Mrs B will be provided with a humidifier more promptly. Therefore, we will not uphold Mr A’s complaint about the Trust.