West Suffolk NHS Foundation Trust

4. Miss P says the Trust did not appropriately manage Mr P’s medication for Addison’s disease during two hospital admissions from December 2024 onwards and because of this, he went into Addison’s crisis. She says this impacted his ability to recover from infections. She believes this caused his death shortly afterwards.

5. Miss P is seeking financial remedy and service improvements.

6. Mr P had Addison’s Disease, Chronic Obstructive Pulmonary Disease (COPD), and emphysema. This complaint is about the management of Addison’s disease. This is a condition where the small glands above your kidneys (the adrenal glands) do not work properly, which causes a wide range of symptoms including fatigue, dizziness, loss of appetite, and anxiety and depression. This is not an exhaustive list of possible symptoms (see Addison's disease - NHS for more information). He had taken medication for Addison’s disease from around 30 years old and understood his condition well, as did his family.

7. In early December 2024, he was admitted to hospital for a suspected chest infection and in Addison’s crisis. It was not unusual for Mr P to develop chest infections with his conditions. Addison’s crisis is a serious complication of Addison’s disease where the patient can experience severe dehydration, low blood pressure, seizures, loss of consciousness, stroke, or a cardiac arrest (when the heart stops).

8. He needed strong antibiotic treatment for pneumonia in his right lung. During his admission, his family grew concerned about intermittent intravenous (IV) steroid treatment for Addison’s, especially as he would decline oral steroids. They were concerned he would go up to 48 hours without medication before being put on IV treatment instead.

9. The Trust said Mr P had mental capacity to decline his medication. He would also decline other care, such as being weighed or eating meals.

10. The family’s view is that Mr P did not have mental capacity to make this decision. This is because Addison’s crisis can cause confusion and depression, which they feel may have impacted his decision-making. They also said he would reassure them he was taking his medication, so they are unsure if Mr P believed he was taking all his medication when he was in fact not. When he did have his medication, his family said he was more alert and appeared more well.

11. Mr P was well enough to be discharged to a care home, but he caught COVID-19 shortly afterwards and was readmitted to hospital. During the second admission, the Trust informed the family that Mr P had around six weeks to live. He was fast tracked for continuing healthcare funding and discharged to a care home for palliative care

15. Before we decide if we should conduct 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 indications that something has gone wrong with the Trust’s management of Mr P’s Addison’s disease medication.

16. The relevant guidelines are the NICE guidelines on adrenal insufficiency. These guidelines state that people with adrenal insufficiency (Addison’s Disease) in circumstances of physiological distress (such as acute illness) should be treated with at least 10mg of prednisolone daily (see section 1.4.2). These guidelines also say that severely unwell patients should be given hydrocortisone 50mg intravenously (IV) four times a day (see section 1.4.7).

17. The NICE guidelines say IV hydrocortisone is normally given for 24 hours or until a person is haemodynamically stable (when the heart, blood vessels and blood volume work together to ensure sufficient circulation to support vital organs) and able to take and absorb oral steroid (glucocorticoids). At that point the guidelines indicate that standard treatment is to give oral steroids at double dose until any underlying cause has resolved and the person is clinically stable (see section 1.7.5 and 1.7.7).

18. Our endocrinologist adviser explained IV steroid doses are usually very high doses, but they can be detrimental to health in both the short and long term; causing hyperglycaemia, poor wound healing, weight gain, bruising, and sometimes confusion (known as steroid psychosis). In a patient thought to be absorbing oral medication and not vomiting, it is standard practice to change from IV to oral steroids after 24-48 hours, and the dose would be given as a standard oral dose; for example, a patient normally taking 5mg daily would often be given 10mg prednisolone daily. Our adviser also noted Mr P’s notes show he had difficult IV access, which can cause problems for sustained IV hydrocortisone use, so it would be reasonable to try to convert to oral medication when possible.

19. We can see from the medical records that the clinical team carefully considered the use of steroid medication during Mr P’s admissions on 5 December and 7 January respectively. This included seeking advice from the endocrinology team as needed, which the guidelines require (see section 1.7.9).

20. During the first admission, Mr P was initially treated with IV hydrocortisone to manage adrenal (Addisonian) crisis. The doctors then considered the best time to reduce (‘step down’) the steroids. This is evidenced in the ward round notes on 9 and 10 December, when we can see the team considering if his breathing and COPD (chronic obstructive pulmonary disease) was sufficiently treated with steroids, as well as his adrenal insufficiency was treated with the aim of converting the steroid from IV to oral, which our endocrinologist adviser explained is standard practice. We can see the doctors refer to endocrine advice on 9 December and shortly afterwards they changed to oral prednisolone at a double dose.

21. Our endocrinologist adviser explained Mr P was then stable for several days but on 13 December he declined his oral dose of prednisolone. The medical team documented that Mr P was thought to have vomited his medication. They decided to convert back to IV hydrocortisone by 11am, which Mr P accepted. This is good management and in accordance with the NICE guidelines on adrenal insufficiency management. He was also given an anti-sickness medication to ease his symptoms.

22. After this further phase of IV hydrocortisone treatment, the Trust converted back to oral prednisolone on 19 December. There were no concerns about this for the initial days that followed.

23. Mr P declined oral prednisolone on 21, 22 and 23 December. The medical records show the medical team believed he had the mental capacity to make this decision himself, knowing the potential implications of doing so.

24. Although Mr P accepted his oral medication on 24 December, he became more unwell and the Trust decided to offer IV hydrocortisone again, in line with the guidelines. IV treatment continued until 2 January. An endocrine registrar then advised to switch to 10mg prednisolone twice a day for two days, followed by 5mg twice per day. This advice was followed.

25. During the second admission beginning 7 January, IV hydrocortisone was initially given. Mr P was diagnosed with COVID-19 and a decision was taken to treat him with dexamethasone (a steroid). Dexamethasone (at dose of 6mg) is a high dose of steroid and overrides the need to give hydrocortisone or prednisolone. The medical team sought advice from an endocrinologist to confirm this.

26. IV dexamethasone at 6.6mg was given from 10 to 13 January. On 14 January, the IV is changed to oral. It is documented that there is a risk of Mr P declining oral medication and if this happens to revert to IV medication.

27. On 15 and 16 January, oral dexamethasone was declined so IV hydrocortisone was restarted. There was a further consultation with the endocrinology team, and the IV high dose hydrocortisone continued until 20 January to complete a 10-day course of high dose steroid treatment for COVID-19. Following this, there was no longer an indication for high dose steroid treatment for COVID-19 so the decision was taken to continue oral steroids. Mr P accepted oral steroids until 31 January when he declined the oral steroid and was offered IV hydrocortisone the following day.

28. We understand Miss P is concerned Mr P may have lacked the mental capacity to decline medication. Under the Mental Capacity Act 2005, patients are presumed to have capacity unless proven otherwise. The decision to act unwisely (such as refusing critical medication) does not, of itself, demonstrate a lack of capacity. The medical team would have been required to ensure Mr P understood the implications of refusing oral steroid, and could retain and weigh up that information, and communicate his view.

29. We are assured the records reflect the medical team’s awareness of the need to consider Mr P’s mental capacity, as they have documented their views of Mr P’s mental capacity on multiple occasions relating to declined medication during the admissions. These notes are, however, brief and it is not possible to retrospectively comment on the likelihood that Mr P did or did not have mental capacity. Similarly without being present we would be unable to take a view now and have seen no basis to suggest an incorrect approach was taken. We appreciate Mr P was knowledgeable of the possible implications of not taking his medication and his family do not believe he would knowingly put his health at risk. We did note Mr P had sores on his tongue which were swabbed on 30 December. It is possible discomfort associated with this affected his decision-making though this is not clearly explored or documented in the medical records.

30. We recognise Mr P did decline medication. However, we can see this was followed by IV medication being initiated the following day, except for 21 to 23 December when IV medication did not start until 24 December.

31. We considered what the implications missed medication would have had on Mr P’s health. Our endocrinologist adviser explained the effects of missing a dose of medication can be variable: some patients suffer a rapid (acute) fall in blood pressure and may feel weak or nauseous. The corrective treatment usually rapidly reverses these symptoms. Blood pressure and pulse would be expected to rapidly recover. An example of this can be seen on 24 December when Mr P was given IV hydrocortisone and the acute circulatory effects of steroid insufficiency rapidly improved. Our adviser explained that Mr P’s brief steroid omissions would not have any longer-term effects or significantly impacted on his recovery.

32. In conclusion, we are satisfied that the Trust followed the NICE guidelines on treating adrenal insufficiency. It was only unable to do so when Mr P declined medication, however we are assured it considered whether Mr P had mental capacity to make this decision on each occasion. When it was possible to resume treatment, we are satisfied it did so. We have seen one instance of a lack of medication between 21 – 23 December but we are assured that Mr P’s recovery would not have been impacted by his short periods of declined medication, though we can appreciate Mr P may have appeared much more unwell during these occasions.

33. We thank Miss P for the time she has taken to share her family’s concerns with us and give us the opportunity to look closely at what happened with Mr P’s care. We appreciate that no decision will ease the pain of their loss, but we hope it can now bring closure to their complaint.

1. We have carefully considered Miss P’s complaint about West Suffolk NHS Foundation Trust (the Trust). We appreciate her complaint is about the events leading up to Mr P’s death, which was an understandably distressing time for her and her family.

2. After considering this complaint, we have seen no indication that anything went wrong with the Trust’s management of Mr P’s Addison’s disease during the hospital admissions from December 2024 onwards. This is because the Trust followed the relevant guidelines regarding treatment. We recognise there were days Mr P would not accept medication, and we saw the Trust considered Mr P’s mental capacity to make this decision and resumed treatment as soon as it was able to do so. This was in line with the relevant guidelines.

3. We hope our explanation of how we reached our decision will provide assurance to Miss P that the correct treatment was offered to Mr P. We appreciate the time she has taken to share her concerns despite how difficult these events have been to talk about.