Royal Free London NHS Foundation Trust

4. Miss G complains that:

· the Trust discharged her mother, Mrs G, from its care on 22 May 2020 without providing enough information about her diagnoses in particular right-sided heart failure and sleep apnoea. She says the family were not informed that right-sided heart failure is a terminal non-curable condition, or that untreated sleep apnoea could trigger a heart attack.

· the Trust did not provide any equipment for home use, such as an oxygen machine, on discharge. It only prescribed diuretics which were not enough to keep her mother alive, prior to her being seen at an outpatient clinic.

· the Trust did not allow Miss G to visit her mother in person due to COVID-19 restrictions even though she had mental health problems and required support.

5. Miss G says that as a result the family were denied the opportunity to understand the severity of Mrs G’s condition. She says they were also unable to provide appropriate care at home and make decisions about what to do next. This has caused great distress and made coming to terms with her death harder than it would have been otherwise.

6. Miss G also says not having visitors was distressing for her mother and made it harder for the family to fully understand Mrs G’s condition as they could not see her in person. It also made it harder to discuss with medical staff. As a result of being alone in hospital, she says Mrs G came home extremely distressed and it took a few weeks to calm her down.

7. Miss G would like the Trust to make service improvements.

8. Mrs G was over 60 years old at the time of the issues complained about. She was a wheelchair user and had underlying health conditions including obesity, high blood pressure, diabetes, osteoarthritis, depression, and paranoid schizophrenia. She lived with her daughter, Miss G, and had been receiving care at home twice daily. However, this had stopped due to the pandemic.

9. Mrs G became unwell on the morning of 12 May 2020. NHS 111 thought she may be having a stroke, so she was taken to hospital by ambulance. She was admitted with an oxygen saturation of 80%.

10. Mrs G was discharged on 22 May. The discharge summary lists her principal diagnoses for the admission as being community acquired pneumonia, pulmonary oedema (a build-up of fluid in the lungs), secondary to right sided heart failure (a condition that occurs when the heart's right ventricle is too weak to pump enough blood to the lungs), and delirium (a state of mental confusion that starts suddenly).

11. The plan on discharge was for Mrs G to undertake outpatient sleep study for possible sleep apnoea (a condition where your breathing stops and starts while you sleep). The study would also look for obesity hypoventilation syndrome (OHS). This is a specific form of chronic lung failure. It affects the lungs, as opposed to sleep apnoea which affects the upper airways. It is seen in severe obesity and restricts the lungs’ ability to inhale and exhale normally. This results in low oxygen levels and high carbon dioxide levels.

12. If Mrs G was found to not have OHS, then this would be followed by referral to a pulmonary hypertension clinic.

13. On discharge, the only change to her medication was the addition of two diuretics a day (bumetanide 1mg).

14. Miss G says that the combination of the two conditions, right-sided heart failure and suspected sleep apnoea, was the cause of her mother’s death and more could have been done to help her.

15. Mrs G sadly died at home as the result of a cardiopulmonary arrest on 3 July 2020.

19. Before we decide if we should investigate a complaint, we look at whether there are signs the organisation has got something wrong. We do this by comparing what should have happened with what did happen.

Information provided at discharge

20. We understand that Mrs G’s sudden death at home, six weeks after she was discharged by the Trust, was a great shock to Miss G. She feels that if the Trust had provided more information about her mother’s condition, she could have supported her mother better at home, which may have prolonged her life.

21. The GMC guidance ‘Good Medical Practice’ sets out the information that should be provided to patients and their families in this situation. It says that doctors must:

· give patients the information they want or need to know in a way they can understand.

· be considerate to those close to the patient and be sensitive and responsive in giving them information and support.

· work in partnership with patients, sharing with them the information they will need to make decisions about their care, including their condition, its likely progression, and the options for treatment, including associated risks and uncertainties.

22. The clinical records show the Trust communicated with both Mrs G and her daughter, and these discussions were documented. This included discussions about resuscitation, the diagnosis and treatment plan, the reasons for stopping oxygen and a discussion with the physiotherapist about the discharge plan.

23. We asked our adviser about this part of the complaint. They said that the documented evidence of discussions was good and, particularly in terms of communication with the family, the Trust had exceeded the standards set out in Good Medical Practice.

24. Miss G is particularly concerned the Trust did not inform her that her mother had right-sided heart failure, and this is a terminal condition, or that untreated sleep apnoea could trigger a heart attack.

25. Right sided heart failure is treatable with diuretics and does not normally shorten life expectancy. Sleep apnoea, whether treated or untreated, is also not a life-threatening condition and does not cause a heart attack.

26. As such, our adviser explained there was no need for the Trust to inform Miss G that her mother’s condition was terminal. They said it would not have been possible for the Trust to predict that Mrs G would sadly die at home six weeks after the Trust discharged her.

27. We have seen that the Trust acted in line with Good Medical Practice regarding the information it shared with Mrs G and her family. There is no indication that something went wrong here, and we will not be taking any further action regarding this part of the complaint.

Prescriptions on discharge

28. Miss G says that, on discharge, the only change the Trust made to her mother’s medication was the prescription of two diuretics a day. As her mother died six weeks later, she thinks the Trust should have made additional prescriptions to prevent this.

29. NICE guideline CG187 recommends pharmacological management with diuretics for the treatment of heart failure.

30. During her admission, the Trust diagnosed and treated Mrs G for fluid overload, due to heart failure, most likely due to obesity hyperventilation syndrome (OHS). The records show that the Trust treated Mrs G with diuretics during her inpatient stay. It also prescribed them on discharge. The records show that Mrs G responded well to this medication. During her admission there was clinical improvement in terms of her breathing, oxygen levels, and weight (which is a good measure of fluid overload status).

31. Having reviewed the information available, we are satisfied that the Trust’s prescription of diuretics was in line with the NICE guidance. We have not seen that any indication that something went wrong here.

32. Miss G also thinks the Trust should have prescribed her mother home oxygen therapy, or a continuous positive airway pressure (CPAP) machine for her sleep apnoea.

33. There are two types of machines that can be used to deliver oxygen at home. These are:

· a CPAP machine. This treatment blows continuous air into a patient via a nose or face mask. It works by splinting open the airways to stop them collapsing. It is not a ventilator machine because it does not breathe for the patient or provide life support. It is most used to treat patients at home with obstructive sleep apnoea hypopnea syndrome (commonly shortened to sleep apnoea). People with sleep apnoea can experience disrupted sleep and potentially excessive sleepiness. The aim of treatment with CPAP is to provide better quality sleep and allow patients to feel less tired in the day.

· a non-invasive ventilation (NIV) machine. This treatment blows air into a patient via a nose or face mask. It is different to CPAP in that the air is blown at two different pressures. This means that NIV provides breathing support for a patient. It is commonly used for patients with hypercapnic respiratory failure, which is lung failure resulting in high carbon dioxide levels.

34. The British Thoracic Society (BTS) Guideline for Oxygen Use in Adults in Healthcare and Emergency Settings sets out when oxygen should be prescribed.

35. This guideline suggests a target oxygen saturation range of 88-92%. Oxygen therapy should be stopped once a patient is clinically stable on low-concentration oxygen, and the oxygen saturation is within the desired range on two consecutive observations.

36. The BTS Guidelines for the Ventilatory Management of Acute Hypercapnic Respiratory Failure (AHRF) in Adults (2016) sets out when CPAP or NIV machines should be used for patients with OHS.

37. They state that an NIV machine should be used in patients with OHS where blood pH is over 7.35, and PCO2 (carbon dioxide pressure) is over 6.5 kPa. NIV is indicated in some hospitalised obese patients with sleep disordered breathing and / or right heart failure. NIV can be discontinued on normalisation of pH and PCO2, and general improvement in the patient’s condition.

38. They go on to say that many patients with AHRF, secondary to OHS, will require long term support (CPAP or NIV) at home, and that following an episode of AHRF referral to a home ventilation service is recommended.

39. GMC guidance ‘Good Medical Practice’ says that doctors must refer a patient to another practitioner when this serves the patient’s needs.

40. During her admission, the Trust did not diagnose Mrs G with sleep apnoea. It did consider this as a potential diagnosis and the plan on discharge included follow up outpatient sleep studies for possible sleep apnoea.

41. The Trust further considered that Mrs G likely had OHS, although this could not be confirmed until the outpatient sleep study had taken place. OHS and sleep apnoea are often seen together as they are both caused by obesity. However, a patient can have one without the other.

42. At the time of her discharge the Trust recorded Mrs G’s oxygen saturation, on room air, as being between 91 and 96% on 11 consecutive occasions. On the day of discharge, it was between 92 and 93%. As such, she did not require oxygen therapy in line with the BTS guidelines for oxygen use.

43. Our adviser explained that during her admission Mrs G did not display clinical features of sleep apnoea, such as nocturnal episodes of stopping breathing. As such, it was in line with the GMC guidance for the Trust to not diagnose this condition during her admission but to arrange an outpatient follow up sleep study to investigate further.

44. As Mrs G did not have a diagnosis of sleep apnoea at the time there was no indication for the Trust to prescribe a CPAP machine. This is because they are usually used in patients with confirmed sleep apnoea.

45. Further, our adviser explained that the prescription of a CPAP machine for home use is never an urgent treatment. Its purpose is to help reduce daytime sleepiness, it is not a lifesaving or prolonging treatment. The Trust referred Mrs G for outpatient sleep studies to confirm whether she was suffering from sleep apnoea. Once that diagnosis was confirmed, a referral to a home ventilation service could be made if required, in line with the BTS ventilatory management guidance.

46. If a breathing machine is required for OHS, it is usually a NIV. Mrs G did not meet the criteria in the BTS guidelines for prescription of a NIV machine at discharge as her oxygen levels were within the target range and her blood pH level was normal.

47. We understand that Miss G wanted the best possible care for her mother. Having reviewed the information available we are satisfied that the Trust acted in line with the BTS guidelines and there are no indications of failings here.

Unable to visit

48. Mrs G was admitted to the Trust during the COVID-19 pandemic. Miss G says the Trust should have allowed her to visit her mother due to Mrs G’s mental health issues. She says that not being able to visit made it harder to understand her mother’s condition and to discuss it with doctors. She also says that Mrs G was distressed when she came home.

49. The records show Miss G asked about visiting her mother during a telephone call on 17 May. At the time, the Trust informed her it only allowed visitors to patients with current acute exacerbation of mental health conditions.

50. In its complaint response, the Trust provided a further explanation. It said that while a history of schizophrenia and previous use of mental health services was documented, there was no record this meant Mrs G required a carer.

51. We have reviewed NHS Visitor guidance from April 2020. This says that visiting is suspended with immediate effect. It also outlines exceptional circumstances where one visitor will be permitted. These include if ‘you are supporting someone with a mental health issue, such as dementia, a learning disability or autism, where not being present would cause the patient to be distressed’.

52. The Trust has provided a copy of the visiting information that was available on its website at the time. This says that no visitors are allowed on ward with the following exceptions:

· patients receiving end of life care · people with a learning disability · children · partners of women in labour

53. We recognise how distressing it was for Miss G not to be able to visit her mother. We have also considered the challenge the pandemic posed to the Trust, and its obligation to protect all patients, and to limit the spread of COVID-19. We note that Mrs G was in hospital during a period when COVID-19 restrictions were still new. At this time, organisations were in the early stages of administering these changes, during a period of great pressure on the NHS.

54. The Trust’s visiting guidance does differ from the national guidance. We are satisfied that both its conversation with Miss G on 17 May and its complaint response indicate it was willing to consider other exceptional circumstances when visiting may be allowed.

55. The high level of restrictions at the time, along with reference to enduring conditions such as dementia and autism in the guidelines, mean it is not clear whether the intent of the national guidelines was to allow all patients with pre-existing mental health diagnoses to receive visitors. We consider this could be interpreted as only allowing visitors in certain circumstances, such as where a current active mental health condition caused distress to such an extent that clinical care could not be provided without additional support from either a family member or carer.

56. As such, we are satisfied that the Trust’s explanation, that visiting would only be allowed if there was a current acute exacerbation of a mental health condition, was in line with the principles of the national guidance.

57. The records show that Mrs G became distressed on 16, 17 and 18 May, as she wanted to continue receiving oxygen and did not want her catheter removed. On the 19 May the Trust arranged a psychiatric review. Mrs G reported feeling suicidal and not wanting to go home on 20 May. The Trust conducted a psychiatric review on 21 May. This review concluded that Mrs G had long standing delusions but no current suicidal ideation.

58. It is clear from the records that Mrs G did experience distress during her admission. She also had a pre-existing mental health diagnosis. However, there is no indication that she experienced an acute mental health crisis at this time, or that her distress could not be managed without a family member there to support.

59. The records also show the Trust responded to Mrs G’s increased distress by arranging a psychiatric review, and staff spoke to her family to provide updates on 17, 18 and 19 May.

60. The national guidance also says, ‘Please find other ways of keeping in touch with your loved ones in hospital, like phone and video calls’. The records show that Mrs G spoke to her daughters on the telephone three times during this period. On 19 May, one of her daughter’s requested to Facetime with her mother. The ward staff referred this to the COVID-19 team, who were unable to attend due to workload pressures.

61. Having reviewed the information available, we are satisfied that the Trust’s guidance was in line with the principles of the national guidance and that it was correctly implemented in this case.

62. We acknowledge this was very difficult for Mrs G and her family and that not being able to visit caused Mrs G’s family distress. We also acknowledge Miss G has told us this distress was ongoing for Mrs G, as she remained distressed when she returned home.

63. In reaching this decision we have considered that there is evidence to show Mrs G was able to speak to her daughters on the telephone. We understand that this was an incredibly busy time for Trusts who were not always able to facilitate every request. Having allowed family to contact Mrs G, we have not seen an indication that something went wrong here.

1. We have carefully considered Miss G’s complaint about the Royal Free London NHS Trust. We understand her mother’s (Mrs G’s) death at home was very distressing for Miss G, and that she feels more could have been done to help her mother.

2. We have decided not to take any further action on this complaint. We have not seen any indication that the Trust’s communication fell below the standard we would expect. We are satisfied that the diuretics prescribed on discharge were appropriate, and there was no indication a prescription for a machine to assist Mrs G with her breathing was required.

3. We also saw that, in not allowing Miss G to visit her mother, the Trust acted in line with its own policies for visitors during the COVID-19 pandemic.