South Tyneside and Sunderland NHS Foundation Trust

3. Mrs W complains the Trust did not refer her son to: • a heart doctor when a scan in December 2020 showed he had a heart problem and he had ongoing issues between then and his death in July 2022 • a kidney doctor when he was having difficulty passing urine and had a swollen abdomen between June 2021 and his death.

4. Mrs W is worried her son’s death could have been prevented if these referrals were made. She says this has caused ongoing distress and worry for herself and other members of the family. She is upset every day and cannot come to terms with her loss.

5. Mrs W wants the Trust to accept what it got wrong, apologise for the impact of its actions, make improvements and make a financial payment to her.

6. In 2020 Mr K was diagnosed with chronic obstructive pulmonary disease (COPD). This is a disease where the lungs become inflamed and damaged, leading to breathing difficulties that get worse over time. Mr K also had a history of chronic back pain and arthritis. These conditions made it more difficult for him to do things.

7. The following summary is a brief overview of the care the Trust gave to Mr K during the time we have investigated. In December 2020 he went to the Trust three times and was diagnosed with:

• an infective exacerbation of COPD (a flare up of COPD caused by an infection) • a pulmonary embolism (a blood clot in the lung) • pulmonary hypertension (high blood pressure in the lung’s blood vessels, caused by lung diseases which makes the right side of the heart work harder to pump blood around the body) • right sided heart strain (damage to the right side of the heart because of it having to work harder than normal) • COVID-19.

8. Mr K was at the Trust again in June 2021. Tests confirmed the right side of his heart was still under strain. He was also diagnosed with obesity hypoventilation syndrome (OHS). This is where obesity prevents a person from breathing rapidly or deeply enough, causing low oxygen levels. Because of this, he needed a breathing machine at night.

9. Between September and December 2021 Mr K saw the Trust’s respiratory consultant, who arranged for him to have support from a breathing machine, to have home oxygen and to increase treatment for his COPD.

10. Mr K had ongoing right sided heart strain. It was causing oedema (fluid build-up) in his lower body, and this was being treated with a type of medication called diuretics. These are sometimes known as water tablets and help the body to get rid of excess fluid. He was also needing increased oxygen and increased levels of support from the breathing machine.

11. In February 2022 Mr K’s GP tried to refer him to heart doctors at another NHS trust for their opinion. They rejected the referral because Mr K’s heart problems were caused by his underlying lung and breathing problems and there was nothing different that they could do.

12. In April 2022 the Trust’s respiratory nurses got advice from the Trust’s heart failure nurses on how to manage Mr K’s symptoms. The heart failure nurses said they could not see Mr K because his heart issues were caused by his underlying lung problems, but they were able to give advice to help with his oedema.

13. Mr K went into hospital again on 8 July 2022. His breathing problems were getting worse due to another infective exacerbation of COPD and he was not using his breathing machine consistently. His kidneys were under strain due to his heart problems and this improved with treatment. He was discharged on 14 July 2022.

14. Mr K died when staying at Mrs W’s home shortly after this.

17. Before we decide if we should do a detailed investigation of 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. We have done this and have not found any signs that the Trust got something wrong.

Referral to a heart doctor

18. GMC guidance says doctors must ‘refer a patient to another practitioner when this serves the patient’s needs’. If a patient has an illness that needs involvement from a specialist with better knowledge of the condition, or who can provide more effective treatment, they should be referred to that specialist.

19. In Mr K’s case, we have seen no signs that he needed to be referred to the heart doctors. The respiratory team were looking after Mr K and we think this was appropriate based on the type of illness he had.

20. Mr K’s right sided heart strain was caused by his lung disease. His OHS and COPD meant his lungs could not get enough oxygen into his blood, so his levels were lower than normal. This affected the structure of the blood vessels supplying his lungs with oxygen, reducing blood flow. The right side of his heart had to work harder than normal to pump blood around the body and it became strained.

21. Because of the way right sided heart strain develops, treatment focusses on managing symptoms and the underlying lung disease.

22. This is what happened in Mr K’s case. To manage his OHS, Mr K was being treated with a breathing machine and oxygen. This also helped treat the effects of his COPD, which was being managed with medications and inhalers. We considered both the OHS and COPD guidelines and saw that these treatments are recommended. Neither guideline mentions treatment for the heart itself, or that input from heart doctors is needed.

23. Our adviser explained respiratory teams are routinely responsible for treating OHS and COPD. If heart doctors had been involved, they would not have been the right specialists to manage these conditions and would not have been able to offer any different treatment.

24. We understand this was a deeply concerning matter for Mrs W. We hope she is reassured that her son did not need to see the heart doctors and there are no signs the Trust got something wrong.

Referral to a kidney doctor

25. We have seen no evidence that Mr K had kidney damage that needed the involvement of kidney doctors.

26. Diseases of the heart and lungs affect the way blood flows around the body. These diseases may progress to a point where they put strain on the kidneys and stop them from working properly. This is called an acute kidney injury (AKI). Because many different things can affect the kidneys, it is important to treat the underlying cause.

27. The AKI guidelines say people with AKI should not be referred to a kidney doctor if there is a clear cause for the AKI, and it is responding well to treatment. People should only be referred to a specialist if they have severe kidney damage, the cause is unknown or it is not getting better with treatment.

28. In June 2021 some of Mr K’s blood tests were mildly abnormal, showing his kidney function was slightly altered, but there were no signs of AKI. Referral to the kidney doctors was not needed.

29. Mr K next presented with problems in July 2022. His blood tests were abnormal, showing his kidney function was affected and he had an AKI. The doctors looking after him worked out that his diuretic tablets were contributing to this, so temporarily stopped them and then restarted them at a different dose. This resolved Mr K’s AKI.

30. Because Mr K’s AKI had a known cause and quickly responded to treatment, a referral to the kidney doctors was not needed. We have seen no signs that the Trust did anything wrong.

31. We do not underestimate how difficult it has been for Mrs W to come to terms with her son’s death. She is concerned he missed out on a chance to get treatment for his heart and kidneys from specialist doctors. We understand why this was important to her, particularly as she could see he needed lots of support with his health problems.

32. We hope the information and explanation in this statement give some reassurance that Mr K did not miss out on treatment by not being referred to heart or kidney doctors. Their input was not needed, and he was cared for by the right team.

1. We have carefully considered Mrs W’s complaint about the care South Tyneside and Sunderland NHS Foundation Trust (the Trust) gave to her son, Mr K. We are sorry to hear about Mr K’s death and how deeply this affected Mrs W and her family.

2. We recognise Mrs W is concerned her son might have survived if he had been referred to the heart or kidney doctors before he died. We hope she is reassured that we have seen Mr K was being cared for by the right clinicians and there are no signs that referrals were needed. We explain this in more detail in this statement.