NHS in England Closed After Initial Enquiries Search on PHSO website

Sussex Partnership NHS Foundation Trust

P-002361 · Statement · Decision date: 20 December 2023 · View Sussex Partnership NHS Trust scorecard
Tests Access Drugs / medication Tests COVID-19 Treatment COVID-19 Hospital acquired infection / healthcare-associated infection Diagnosis Communication Transfer, discharge and aftercare Hospital acquired infection / healthcare-associated infection Access Drugs / medication Diagnosis Treatment Care plan failures No person-centred care
Complaint (AI summary)
Mrs A complained SPFT failed to appropriately treat her husband's dementia, leading to rapid deterioration and death. She also complained UHSFT discharged him when he was unfit, contributing to his death.
Outcome (AI summary)
The complaint was closed as no signs were found that anything went seriously wrong with the care provided by either Trust.

Full decision details

The Complaint

SPFT

4. Mrs A complains about the care and treatment SPFT gave to her husband in April 2020. She complains it did not know how to deal with Mr A’s specific type of dementia and did not see to his mental and physical needs appropriately. Mrs A says this led to Mr A not having the right treatment, significant weight loss, quick deterioration and then his death.

5. Mrs A says she has been greatly affected by her husband’s death and she feels it could have been avoided. The events left her feeling anxious, depressed and not trusting medical professionals. She wants service improvements and a financial payment.

UHSFT

6. Mrs A complains UHSFT discharged her husband on 2, 7 and 13 May 2020 when he was not medically fit. She says this led to Mr A being transferred to and from hospital several times when he was already very unwell and this led to his death.

7. Mrs A says she has been greatly affected by her husband’s death which she feels could have been avoided. The events left her feeling anxious, depressed and not trusting medical professionals. She wants service improvements and a financial payment.

Background

8. Mr A was diagnosed with frontotemporal dementia in May 2019. This type of dementia affects the front and sides of the brain and causes problems with behaviour and language.

9. In April 2020, Mr A became physically violent towards Mrs A and their daughter. He was hospitalised under Section 3 of the Mental Health Act and admitted to SPFT on 9 April. Over the next few weeks, Mr A became more agitated, physically violent towards staff and was refusing food, drink and medication.

10. On 17 April, SPFT’s consultant psychiatrist told Mrs A that Mr A was not doing well. He had lost 5kg in weight since his arrival. The consultant told Mrs A that Mr A was being moved to another hospital on 29 April because it would be better suited to meet his increasingly challenging needs.

11. During his time in this hospital, Mr A was transferred to and discharged from UHSFT several times. On 17 May, Mr A was admitted to UHSFT again. Due to the multiple hospital moves, UHSFT agreed for Mr A to stay in hospital with a plan to send him home. There were several discharge planning meetings and UHSFT discharged Mr A home on 10 June. He sadly died later that month.

Findings

15. 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 seen any signs that something went wrong in Mrs A’s complaint about SPFT and UHSFT.

SPFT The unit where he was cared for

16. Mrs A complains SPFT was not the appropriate facility to care for Mr A, as it did not know how to deal with his specific type of dementia.

17. SPFT’s website describes the unit that looked after Mr A as, ‘a specialist dementia intensive care unit designed specifically to care for people with dementia to meet their clinical needs.'

18. At the time of his admission Mr A was showing behavioural symptoms associated with his dementia. As time went on, his behaviour became more complex with his refusal to eat, drink or take medication. As his needs changed and progressed, the consultant decided to transfer Mr A to another dementia unit at the other hospital.

19. Our psychiatrist adviser explained there are no specific centres to care for and treat people with frontotemporal dementia. Given the description on SPFT’s website, we have seen nothing to suggest the unit was not the appropriate place for Mr A or that its staff were unable to manage his dementia.

Eating, drinking and managing Mr A’s weight loss

20. Mrs A says staff at the unit were unable to manage Mr A’s physical health needs and this caused him to lose a lot of weight during his admission.

21. The Alzheimer’s Society says it is common for patients with dementia to have a poor appetite and lose interest in food. It says eating and drinking can be made more difficult if a person’s routine and diet have changed. This can lead to weight loss.

22. Mr A had been detained under the Mental Health Act. He had been admitted to a mental health unit and was out of his normal routine. Mr A wanted to go home and at times, refused to eat and drink unless staff discharged him home. He lacked capacity to consent to his admission and possibly did not understand the need for him to be in hospital.

23. Our psychiatrist adviser explained frontotemporal dementia can cause impulsive behaviours and a lack of judgment in decision making. Mr A also had specific obsessional behaviour patterns around eating particular types of food at certain times. This is shown in Mrs A’s letter about Mr A’s eating habits. Mr A was not in his normal routine, and this inevitably affected his eating and drinking.

24. The evidence in Mr A’s medical records suggest he was accepting some food and drink between 9 and 29 April, but not as regularly as he would in his normal environment.

25. SPFT’s food and nutrition policy says when a patient is not eating or drinking regularly, staff must make sure nutrition screening is completed at appropriate times, regularly check that nutrition care plans are started and reviewed, be aware of the roles of other professionals and make timely referrals for specialist assessment and advice. It should also prescribe nutritional supplements.

26. The evidence in Mr A’s medical records shows staff were aware he was not eating and drinking as he normally would at home. They were also aware he was losing weight because of this. In line with its policy, we can see staff completed regular malnutrition screening tools (MUST) and kept food and fluid charts updated.

27. In line with its policy, staff also had a discussion with a diabetic nurse specialist, who was not overly concerned but advised staff to monitor Mr A’s blood sugar levels. The information in Mr A’s records suggest he often refused to have this checked. Staff also contacted a senior dietitian, who developed a detailed plan of his diet.

28. In line with its policy, staff also started Mr A on chocolate forticream, fortijuice and fortisip compact. These are all nutritional food that would give Mr A the energy and calories he needed, while he was not eating all his meals.

29. We can see doctors also tried to give Mr A olanzapine medication, which can help to increase appetite. This was stopped when an ECG (a test that measures the electrical activity of the heart) reading suggested some difficulties which could have been a side effect of the medication.

30. NICE guidance NG97 says healthcare professionals should encourage and support people living with dementia to eat and drink regularly. In line with this, we can see staff left snacks in Mr A’s room to encourage him to eat and Mrs A brought in specific food he liked to eat at home.

31. Mr A’s dementia meant he found it difficult to adjust to his new environment and routine. Mr A was eating and drinking on admission, but as time went on and his symptoms and behaviour got worse and he became more agitated, he was refusing to eat and drink. On 26 April, his body mass index (BMI) was still over 30, which was within the normal range for him.

32. We can appreciate why Mrs A has concerns about the way staff were managing Mr A’s physical health needs. There is no doubt he was losing weight because of irregularity with his food and fluid intake. We have seen staff were aware of this, monitored it and took appropriate steps to manage this in line with its food and nutrition policy and NICE guidance.

33. In summary, the Trust’s management of Mr A’s eating, drinking and weight loss was in line with the relevant guidance. Mr A had a complex condition with the progression of his dementia, delirium and then COVID-19. We have seen nothing to suggest the Trust’s management of Mr A’s physical health needs contributed to his death.

Mr A’s medication

34. Mrs A says the medication SPFT provided to Mr A at the unit was not appropriate and this affected his mental and physical health needs.

35. Mr A was very unwell when he was admitted to the unit. He had been aggressive towards Mrs A and their daughter and there were significant risks of harm if he stayed at home. This led to Mr A being detained under the Mental Health Act and his behaviour had to be managed at the unit.

36. NICE guidance NG97 supports the use of antipsychotic medication in dementia patients, when there are significant behavioural or psychological symptoms which cause significant distress to the patient and put them at risk of harm to themselves or others.

37. We can see Mr A was on risperidone, an antipsychotic medication licenced to use for agitation and aggression in dementia. He was also on lorazepam and clonazepam, a diazepam group of medicines used for calming agitation. The Trust’s administration of these medications was in line with NICE guidance NG97.

38. Our psychiatrist adviser said Mr A’s medical notes are detailed and the consultant clearly documented the reasons for giving Mr A the medication. Our psychiatrist adviser also said the consultant regularly reviewed the medication, to make sure it was still appropriate to give to Mr A. This was in line with GMC’s standards on good medical practice.

39. We can see why Mrs A has concerns about the medication SPFT was giving Mr A. We can appreciate why she feels this may have affected his overall mental and physical health. The Trust’s administration of medication was in line with the relevant guidance. As explained above, Mr A had a complex condition with the progression of his dementia, delirium and then COVID-19. We have seen nothing to suggest the Trust’s management of Mr A’s physical and mental health needs contributed to his death.

UHSFT

Discharge on 2 May

40. Mrs A says UHSFT discharged Mr A to the hospital several times when he was not medically fit for discharge. She says he was already very unwell and the moves to and from hospital contributed to his death.

41. On 1 May, we can see staff at the hospital suspected Mr A was suffering from heart problems and chest pain. To rule out a serious condition, they arranged for him to be taken to UHSFT.

42. NICE guidance CG95 says health care professionals should refer people to hospital if they suspect acute coronary syndrome and the patient has chest pain. The hospital should do a physical examination and take an ECG and blood tests.

43. We can see UHSFT did a physical examination of Mr A. His physiological observations, ECG and blood tests were all normal. As there was no evidence Mr A was suffering from acute coronary syndrome, UHSFT discharged him back to the care of the hospital. This was in line with NICE guidance CG95.

44. Our geriatrician adviser said there was no acute medical need for UHSFT to keep Mr A in hospital. Once all his tests had come back clear, he was medically fit for discharge back to the hospital.

Discharge on 7 May

45. On 6 May, we can see staff at the hospital were concerned about Mr A. He had not been eating or drinking for several days and had a productive cough. To rule out anything more serious, they arranged for him to be taken to UHSFT.

46. On examination, UHSFT found Mr A had high white blood cells, suggesting the likelihood of a bacterial infection. It also found worsening sodium levels (hypernatremia) suggesting Mr A was dehydrated.

47. Our geriatrician adviser explained there are no specific guidelines for the treatment of dehydration. But there are standards in several medical texts that support fluid replacement to rehydrate the patient. In line with this, we can see UHSFT treated Mr A with intravenous fluids (given through the veins). In line with NICE guidance NG120, UHSFT prescribed Mr A with antibiotics for the infection.

48. During this admission, UHSFT offered Mr A regular drinks to rehydrate him. But, Mr A was refusing to drink anything. He was also removing his cannula and refusing to take his medication. Despite these difficulties, we can see the UHSFT did try its best to rehydrate Mr A.

49. UHSFT repeated blood tests on 7 May, that showed Mr A’s sodium levels had improved with treatment. As his condition had improved from the last day, he was medically fit for discharge back to the hospital, to continue with the course of antibiotics. Our geriatrician adviser said there was no acute medical need for UHSFT to keep Mr A in hospital.

Discharge on 13 May

50. On 11 May, Mr A’s blood test results showed increasing sodium levels again. Staff transferred him back to UHSFT for treatment.

51. Mr A had still not been eating or drinking and the acute medical issue was again dehydration due to poor oral intake. As above, UHSFT treated Mr A with intravenous fluids to rehydrate him. Once his blood test results were normal and his sodium levels had improved, Mr A was medically fit for discharge back to the hospital.

52. Our geriatrician adviser explained that in view of Mr A’s psychiatric behavioural problems, it would have been difficult to keep him on an acute medical ward. When he was medically fit for discharge, UHSFT discharged Mr A back to the hospital, where he was more familiar with the surroundings and staff. We appreciate that by the time of his fourth admission to UHSFT, he had already been back and forth several times. Considering this, UHSFT made a decision to keep Mr A in hospital until it was able to plan a safe discharge home. There was no sign for UHSFT to keep Mr A in hospital before this.

53. Any hospital moves for an older person with physical or cognitive disabilities can be damaging to their health. But, on balance, taking into account the needs Mr A had, the hospital moves are unlikely to have had a significant impact on his life expectancy.

54. Our geriatrician adviser explained the main issue here was Mr A’s unwillingness to eat, drink or take medication as a result of his frontotemporal dementia. Looking at his overall mental and physical health issues, Mr A’s condition deteriorated over time. We have seen no signs to show this was due to any failings by either organisation. For this reason, we do not think we need to investigate further or make any recommendations.

55. We are sorry to hear about the circumstances of Mrs A’s complaint and offer our sincere condolences for her loss. We can see this was a difficult and upsetting time and we appreciate her sharing details of her experience with us.

56. We hope this statement gives reassurance that we have considered the evidence carefully and clearly explains the reasons why we will not be taking any further action.

Our Decision

1. We have carefully considered Mrs A’s complaint about Sussex Partnership NHS Foundation Trust (SPFT) and University Hospitals Sussex NHS Foundation Trust (UHSFT). We are sorry to hear her concerns about the care her husband, Mr A, had from both organisations before he died.

2. Having considered all the available information, we have seen no sign that anything went seriously wrong.

3. We recognise how deeply Mrs A and her family have been affected by what happened. We do not underestimate how difficult this time has been for her. Although we are unable to investigate her concerns further, we thank her for taking the time to raise them with us.

Other Decisions About Sussex Partnership NHS Foundation Trust

P-005136 · 27 Mar 2026
Miss L has raised concerns about the waiting times for an autism assessment and not being prioritised.
Closed After Initial Enquiries
P-004570 · 6 Jan 2026
Miss O complains Sussex Partnership NHS Foundation Trust (the Trust) did not provide her with support or treatment since March …
Closed After Initial Enquiries
P-003744 · 30 Aug 2025
Ms L complains about advice given to her about her daughter’s care by the Trust, and the Trust’s records of …
Closed After Initial Enquiries
P-003700 · 20 Jul 2025
Ms F complains between 7 and 21 December 2023, Dr A discussed E’s needs with a neighbouring service without due …
Closed After Initial Enquiries
P-003572 · 8 May 2025
Mr A complains about care provided to him by Sussex Partnership NHS Foundation Trust (the Trust) from July 2021 to …
Closed After Initial Enquiries
View all decisions for this organisation →