Northern Care Alliance NHS Foundation Trust

3. Miss B complains about the care and treatment the Trust provided to Mr U in 2024. She says it failed to fit an implantable cardioverter defibrillator (ICD), did not carry out further genetic testing and stopped his appointments. She says her partner had a strong family history of heart issues and previous genetic testing showed he had a gene linked to an inherited heart condition.

4. Mr U died in late 2024. Miss B says his children have been left without their father and his death has affected his family every day since the day he died. She believes Mr U could have lived for many more years had the Trust fitted an ICD.

5. Miss B would like the Trust to acknowledge what went wrong, apologise and pay a financial remedy.

6. Mr U had non-ischaemic cardiomyopathy which is a condition that affects the heart muscle. It means the heart is not working as well as it should because the muscle has become weakened, stiff, enlarged or otherwise abnormal. He had been known to the Trust for some years.

7. We understand there is a strong family history of cardiomyopathy. We gather Mr U had lengthy periods of non-engagement with the Trust and non-compliance with his heart medication. Miss B has told us this was due to the death of his father as well as an unwillingness to accept his condition. We note Mr U had been engaging with the Trust for around six months prior to his death.

8. Mr U went into cardiac arrest at home in late 2024. We understand Miss B performed CPR until an ambulance arrived. We cannot begin to imagine what a traumatic experience this must have been.

12. Before we decide if we should conduct a detailed investigation of a complaint, we look at whether there are signs the organisation got something wrong. We do this by comparing what should have happened with what did happen. We have done this and not found any indications something went wrong.

Clinic appointments

13. Miss B complains the Trust stopped Mr U’s clinic appointments and put him on a patient-initiated follow-up pathway following an appointment in late 2024. She says the Trust should have continued his appointments due to his family history, previous genetic testing and as his ejection fraction was 31%.

14. Ejection fraction is a measure used to assess how well the heart is pumping blood with each heartbeat. It compares how much blood the left ventricle pushes out with each beat compared to the total amount of blood it holds. A normal ejection fraction is usually between 50 and 70%.

What happened:

15. Mr U’s clinical records show he had four appointments with the heart failure specialist nurses in 2024 following a period of non-engagement. The Trust also discussed him at a heart failure multi-disciplinary team (MDT) meeting during this period.

16. An MDT is where a group of healthcare professionals from different specialities come together to discuss and plan the care of patients. The team typically includes cardiologists, heart failure specialist nurses, pharmacists, dieticians, physiotherapists, psychologists and other healthcare workers.

17. At the first appointment, Mr U had shortness of breath on exertion, no oedema (swelling, this can indicate worsening heart function) and his chest was clear. The nurse prescribed eplerenone (treats heart failure and manages high blood pressure) and requested blood tests.

18. At the second appointment, Mr U had shortness of breath on over exertion and no oedema. The nurse changed ramipril (relaxes blood vessels, lowers blood pressure and reduces strain on the heart) to sacubitril valsartan (relaxes blood vessels, reduces fluid retention and improves the efficiency of the heart).

19. The nurse also noted Mr U should possibly go the heart failure MDT to discuss getting an ICD, genetic testing and a cardiovascular magnetic resonance (CMR) scan. This is a scan that uses magnets and radio waves to create detailed images of the heart and blood vessels.

20. The heart failure MDT then discussed Mr U. It noted his previous non-engagement and non-compliance with medication. The notes say he had asked about genetic testing for his child. The MDT referred him to see a consultant cardiologist who had a 46 week wait at the time.

21. At the third clinic appointment with the heart failure specialist nurses, Mr U’s shortness of breath was improving and he had no oedema. The nurse increased sacubitril valsartan and requested repeat blood tests.

22. At the fourth appointment Mr U’s shortness of breath was again improving and he had no oedema. The nurse arranged an echocardiogram. This is a type of scan that uses sound waves to create moving pictures of the heart so doctors can see how well the heart is working.

23. The nurse also placed Mr U on a patient-initiated follow-up pathway. This is where patients take control of scheduling their follow-up appointments based on their individual needs, rather than attending routine visits. It aims to ease pressure on the NHS and ensure resources are used efficiently while maintaining patient safety.

What we have seen:

24. The nurse who saw Mr U at the fourth appointment arranged an echocardiogram following his period of re-engagement. The nurses would have reviewed the results of this scan to assess any need for further input. The patient-initiated follow-up pathway and appointment with the consultant were on top of this.

25. Our adviser said Mr U was still under active management and follow-up with the heart failure specialist nurses at the time he died. They were overseeing optimisation of his medication and had arranged a scan to assess his heart muscle function while he awaited an appointment with the consultant.

26. Based on what we have seen, the Trust had not discharged Mr U or stopped seeing him. The nurses had been adjusting and optimising his medication and arranged a scan. They would have reviewed the results and arranged any further input as needed. He was also able to request an appointment at any time.

Implantable cardioverter defibrillator (ICD)

27. Miss B complains the Trust did not fit Mr U with an ICD. She says the Trust discussed implanting an ICD on multiple occasions due to his family history of cardiomyopathy and as his ejection fraction was 31%. She says the Trust told her that a patient with an ejection fraction under 35% needs immediate attention.

28. An ICD is a small device placed inside the body that constantly monitors the heart’s rhythm. If it detects a dangerous problem, it can send electrical signals or a small shock to help restart the heart or get it back into a normal rhythm.

What happened:

29. A clinic letter in 2023 says Mr U had an ejection fraction of around 46% in 2015 and 37% in 2022. The notes of the MDT in 2024 say an echocardiogram earlier in 2024 showed he had an ejection fraction of 30-35%. However, this had followed a period of non-engagement and non-compliance with medication.

What we have seen:

30. NICE guidance 314 says an ICD should be considered to prevent sudden cardiac death when a patient has an ejection fraction of less than 35% despite optimal therapy.

31. Our adviser said Mr U’s recent echocardiograms showed a fluctuating ejection fraction generally above 35%. They said it is possible the Trust would have recommended an ICD at some stage. However, there was no time where he was engaging with consistent therapy and had an ejection fraction of less than 35%. It therefore appears an ICD was not indicated.

Genetic testing

32. Miss B says another Trust (Trust B) carried out genetic testing for Mr U and a relative in 2015. She says this showed both had a gene linked to an inherited heart condition. She says Mr U lost his letter, but this relative still has theirs. She says she has contacted Trust B, but it told her it has no record of this test.

What happened:

33. Mr U’s clinical notes show the Trust planned to refer him for genetic testing in 2022. This is also noted in the record of a telephone appointment in 2022. There is then a letter from Trust B dated in 2023 which says Mr U did not attend his video appointment with the genetics clinic.

What we have seen:

34. The ESC publication says genetic testing should be considered in people with non-ischaemic cardiomyopathy. It says genetic testing can be used to confirm a diagnosis, test the patient’s family members, influence decision making and help inform reproductive planning.

35. Our adviser said Mr U already had a confirmed high risk family history and a confirmed diagnosis so the main purpose of testing would have been to help him make decisions around children. This is supported by the MDT notes that say he had been asking about his young child.

36. Mr U’s clinical notes indicate the Trust referred him to Trust B for genetic testing in 2023, but he did not attend his appointment. They also show that when the Trust referred him to the consultant in 2024 this included a plan to explore genetic testing again.

37. Our adviser said a referral for genetic testing would not have been urgent. They also said the lack of genetic testing had no impact on Mr U’s care and did not contribute to his sad death.

Overall

38. We have seen no evidence to suggest there were any issues with Mr U’s care and treatment.

39. From what we have seen, Mr U did not meet the criteria for receiving an ICD at the time he died. It appears the Trust had adjusted his medication appropriately following a period of non-engagement and his condition was stable. It had arranged a scan to assess his heart, referred him to a consultant for onward care and he could request an appointment in the meantime if needed.

40. We recognise the incredibly sad circumstances surrounding Miss B’s complaint. We would like to take this opportunity to share our most sincere condolences with her and her family on their devastating loss. We hope our consideration helps in some way them find some peace.

1. Miss B complains about the care and treatment Northern Care Alliance NHS Foundation Trust (the Trust) provided to her partner, Mr U, in 2024. We have carefully considered her complaint and seen no indications anything went wrong. We will therefore be closing Miss B’s complaint at this stage.

2. We know how difficult it can be to raise a complaint about the care a loved one received before they died and to keep pursuing this while trying to grieve their loss. We hope our consideration provides Miss B with answers about what happened and brings her some sense of closure.