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Berkshire Healthcare NHS Foundation Trust

P-003197 · Report · Decision date: 19 December 2024 · View Berkshire Healthcare NHS Foundation Trust scorecard
Complaint (AI summary)
Mrs A alleged her father received inappropriate heart failure diuretic treatment despite deteriorating, leading to his premature death. She believed alternative care or hospital admission was needed.
Outcome (AI summary)
The complaint was not upheld. The heart failure team managed Mr E's treatment appropriately and sought specialist advice when he deteriorated.

Full decision details

The Complaint

3. Mrs A complains about the heart failure treatment Berkshire Healthcare NHS Foundation Trust (the Trust) provided to her late father, Mr E, from August to November 2021. In particular, she believes it was not appropriate for the diuretic treatment to continue when he was deteriorating, and alternative treatment or hospital admission should have been arranged.

4. Mrs A says the lack of appropriate treatment led to a deterioration in Mr E’s health and his premature death. Mrs A says she suffered distress due to her father’s premature death and watching him in discomfort towards the end of his life.

5. Mrs A would like the Trust to acknowledge what she believes were failings with Mr E’s treatment. She would also like the Trust to make service improvements and provide a financial remedy.

Background

6. Mr E had heart failure and diabetes. In July 2021, Mr E became more unwell, struggling to breathe and retaining fluid. On 17 August, Mr E's GP referred him to the community heart failure team at the Trust. The heart failure nurse initially assessed Mr E on 20 August and visited him regularly after this.

7. On 28 September the heart failure nurse asked for advice from a cardiologist at Frimley Health NHS Foundation Trust, about how best to manage Mr E’s condition.

8. On 23 November, Mr E attended A&E on the advice of the heart failure team, as he had been unable to pass water for three to four days and had lower abdominal pain. He was admitted to hospital.

9. Sadly, Mr E had a cardiac arrest on 24 November 2021 and did not survive.

Findings

13. Mrs A complains it was not appropriate for the heart failure team to continue with Mr E’s diuretic treatment when this was not working and he was deteriorating. She believes the heart failure team should have identified Mr E was deteriorating and provided alternative treatment or arranged hospital admission.

14. The heart failure team treated Mr E with oral diuretics (water tablets that help your body get rid of excess salt and water through urine). Based on the clinical advice received, we consider the heart failure team followed usual practice and relevant guidance when managing Mr E’s treatment.

15. Our nurse adviser explained diuretic treatment is the routine treatment for patients with fluid retention (when excess fluid builds up in the body’s tissues) due to heart failure. It is appropriate to start with oral diuretics as this is lower risk. The alternative is intravenous (IV) diuretics, which is more invasive and, generally, community heart failure teams are unable to offer this.

16. Our nurse adviser explained the heart failure team started with a dose that was appropriate for Mr E and increased this as needed. They made changes to the diuretics by trying different types when he did not tolerate these (for instance when the fluid returned or when Mr E experienced side effects). The heart failure team also used combination therapy, which is where a combination of diuretics is used when one diuretic is not effectively reducing the fluid retention.

17. The relevant guidance can be found in the ESC guidelines, which say ‘…the combination may be used to treat diuretic resistance’ (section 5.4.1), and the NICE guideline 106, which says:

‘1.6.1 Diuretics should be routinely used for the relief of congestive symptoms and fluid retention in people with heart failure, and titrated* (up and down) according to need following the initiation of subsequent heart failure therapies.’

* This is the process of starting with a low dose and increasing or decreasing this until the effective dose is achieved.

18. The heart failure team arranged blood tests, to ensure Mr E’s kidney function remained stable with treatment. This is in line with the NICE guideline 187, which advises closely monitoring a person’s kidney function during diuretic therapy (section 1.3.5). They also arranged a chest X-ray to check for any fluid on his chest.

19. Our nurse adviser explained the diuretic treatment appeared to be working initially, as Mr E was losing weight, breathing better and was less cyanosed (where the skin turns blue or grey). When it became apparent the diuretic treatment was not continuing to reduce Mr E’s fluid retention, the heart failure team requested advice from a cardiologist on 28 September. This is in line with section 8.1 of the NMC Code, which says to ‘respect the skills, expertise and contributions of your colleagues, referring matters to them when appropriate’.

20. The cardiologist advised checking Mr E’s urine sodium concentration. This is to check the amount of sodium in a sample of urine to see whether it is at a normal level. Having too much or too little sodium can mean there is an issue with the kidneys. The cardiologist also suggested Mr E may need IV diuretics due to not absorbing oral diuretics well. He suggested using the IV diuretics lounge. This is a service which is offered as a day case or over several days, but the patient goes home rather than staying in hospital overnight.

21. The heart failure nurse organised a urine albumin to creatinine ratio (ACR) test. This is a different test of the kidney function. Urine ACR shows whether your urine contains albumin, which is a protein that circulates in the blood and can indicate kidney disease. Creatine is a waste product that your kidneys filter out the body in your urine. Creatine builds up in your blood when your kidneys are not working well.

22. We asked the Trust to explain why a urine sodium test was not done. The Trust said the heart failure nurses are not able to request urine sodium tests on its system. It said a urine albumin test can show kidney damage.

23. Based on the clinical advice, we consider the Trust has given a good reason why the heart failure team requested a different test to that recommended by the cardiologist. Our nurse adviser confirmed a urine ACR can be used to assess kidney damage and is a reasonable alternative if a urine sodium test is not available. The National Kidney Foundation explains the role of urine ACR as a kidney failure risk factor.

24. The results of the urine ACR were received on 7 October, which were slightly abnormal. Our cardiology adviser explained the results would not have had any impact on Mr E’s management. This is because the heart failure nurses were already providing appropriate diuretic treatment to Mr E. Our cardiology adviser explained Mr E had established kidney disease, so an abnormal ACR would be expected.

25. Our nurse adviser said Mr E’s kidney function had been stable up until 20 October. Blood tests were done to estimate his glomerular filtration rate (eGFR), which shows how well the kidneys are filtering the blood. Mr E’s blood results show his kidney function deteriorated significantly between 20 October and 10 November. On 20 October Mr E’s eGFR was 54mL/min, compared to an eGFR of 22mL/min on 10 November. An eGFR of 90 or higher is in the normal range, and 15-59 can indicate kidney disease.

26. The clinical records show the heart failure nurse discussed hospital admission with Mr E on 15 November, but he declined. Mrs A acknowledges the heart failure nurse discussed hospital admission, and that Mr E declined due to concerns about getting COVID. However, she does not think relevant information was given to him to enable him to make an informed decision.

27. The clinical records say ‘Have discussed admission to hospital – but doesn’t want to go in.’ We note the records do not include the detail of what was discussed, including the option of the IV diuretic lounge. We asked the Trust for comments. It said the nurse did also discuss the option of the IV diuretic lounge, but Mr E refused due to concern about COVID-19 as the lounge is on a hospital site. The Trust acknowledged this was not documented, but said the nurse can recall the events.

28. We are not able to confirm the detail of what was discussed on 15 November. It would have been helpful for the nurse to have documented that the option of the IV diuretic lounge was discussed. However, there was clearly a conversation during which the nurse advised hospital admission and Mr E did not want to attend. We consider the nurse acted in line with section 2.5 of the NMC Code, which says to ‘respect, support and document a person’s right to accept or refuse care and treatment.’ It is likely that if Mr E did not want to be admitted to hospital due to COVID-19, he would be equally as concerned about attending the IV diuretic lounge. In any case, based on the advice from our cardiology adviser, if Mr E had attended hospital, this would have included IV diuretic treatment.

29. The Trust says the heart failure nurse gave Mr E heart failure information leaflets at his first visit. Our nurse adviser explained these leaflets are usually given to patients routinely. These would include relevant information on what signs Mr E should look out for that would show he is deteriorating. On balance, we conclude it is likely the nurse gave Mr E these leaflets. We acknowledge Mr E’s wife does not recall Mr E receiving the leaflets, but we cannot say based on this that the nurse did not give them.

30. We appreciate Mrs A feels the nurse could have done more to encourage Mr E and this must be upsetting. Based on what we have seen, we have not identified any failings in relation to the advice that Mr E should be admitted to hospital.

31. Our cardiology adviser explained there is evidence Mr E had kidney impairment (where the kidneys are not working as well as they should) and experienced a progressive decline due to his heart failure, which caused an increase in fluid build-up. He explained it is part of the natural progression of heart failure that patients reach a stage where treatment is no longer successful.

32. Overall, based on the clinical advice and evidence available, we consider the treatment provided by the heart failure team was appropriate. Mr E was initially responding well to diuretic treatment including changes to the treatment. When it became apparent Mr E’s kidney function was deteriorating, the heart failure team recommended admission to hospital. Mr E declined this. Therefore, it was appropriate for diuretic treatment to continue and there was no alternative treatment that should have been arranged. We have not identified anything further the heart failure team should have done.

Our Decision

1. We have not identified any failings in relation to the heart failure treatment the Trust provided to Mr E. We consider the heart failure team managed Mr E’s treatment appropriately. When he showed signs of deterioration, the heart failure team appropriately sought advice from a cardiologist and recommended hospital admission. Therefore, we do not uphold the complaint.

2. We appreciate Mrs A found Mr E’s death deeply upsetting and her concerns about the treatment the Trust provided only added to this. We hope our explanations below provide some reassurance to Mrs A.

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