3. Miss R complains that: • LSCFT gave her mother, Mrs R, flupentixol decanoate in September 2022 • BTH gave her mother dalteparin (a blood thinner) in September 2022.
4. Miss R says because of the flupentixol decanoate her mother became unwell and BTH had to admit her to hospital. Miss R says because of the blood thinner her mother died. She explains she has experienced emotional trauma due to the death of her mother.
5. Miss R would like an apology and a financial remedy from the Trusts.
6. Mrs R had bipolar affective disorder. This is a mental health condition which can cause mood swings and depressive episodes.
7. LSCFT gave Mrs R a monthly injection of flupentixol decanoate and had done for several years.
8. Miss R says Mrs R’s health deteriorated after LSCFT gave her flupentixol decanoate injection at the beginning of September 2022.
9. She describes how near the end of September her mother experienced upper body rigidity, paralysis and back arching. This caused her to fall over and fall out of bed. She says this rigidity looked like a symptom of neuroleptic malignant syndrome (NMS) described as ‘lead pipe’. NMS is a rare, potentially life-threatening reaction to antipsychotic medication.
10. Miss R also describes how her mother’s legs were very active, she could not speak, she was drooling, slurring her speech and struggling to swallow.
11. Miss R contacted a GP because of these symptoms. The GP visited Mrs R at home and arranged an ambulance to take Mrs R to hospital.
12. BTH admitted her to the emergency department due to dehydration, kidney failure, high levels of calcium and lithium in her blood. Lithium is a metal usually found in low levels in the blood.
13. The following day BTH transferred Mrs R to its acute medical unit. It noted Mrs R was very confused, and her speech was slurred. Several days later BTH gave Mrs R dalteparin. Following this, Mrs R had a large rectal bleed became unresponsive and sadly died.
14. A coroner is someone who’s role is to find out how and why someone died. A coroner reviewed Mrs R’s death. They concluded she died due to a perforated jejunal diverticulum (tear of a rare protrusion in the middle section of the small intestine).
Flupentixol decanoate
19. Miss R complains that LSCFT gave her mother flupentixol decanoate at the beginning of September 2022.
20. Miss R believes her mother experienced NMS because LSCFT gave her the injection.
21. She says if the Trust had not given her this injection, BTH would not have needed to admit her to hospital at the end of September, and BTH would not have given her a blood thinner so she would not have died.
22. LSCFT says Mrs R’s care coordinator (a nurse who organised Mrs R’s care) is aware of NMS. LSCFT said her care coordinator would have raised concerns and stopped giving it to Mrs R if she had been presenting with symptoms of this condition. LSCFT states there is no suggestion her care coordinator had any concerns about giving Mrs R flupentixol decanoate.
23. The Royal College of Psychiatry’s guidance says NMS is a medical emergency and people with symptoms should go immediately to the emergency department.
24. NHS HEE guidance describes the following possible symptoms of NMS: • fever (temperature above 38°c) • stiff and heavy feeling limbs • difficulty walking • confusion or agitation • a change in consciousness • pale appearance • fast heart rate • shortness of breath • fluctuating blood pressure • excessive sweating/salivation • a tremor or involuntary movements • not being able to control their bladder or bowels.
25. Miss R told us she spoke to her mother’s care coordinator before they gave her mother the flupentixol decanoate injection. She says she told them that she had noticed her mother had recently experienced an episode of upper body rigidity causing paralysis and collapse. We recognise this was a worrying time for Miss R.
26. Miss R says the care coordinator told her it could be a side effect of her mother’s medication and they would do a medication review in October 2022. For this reason, Miss R does not think the care coordinator should have given her mother the injection that day.
27. Mrs R’s clinical records from the time of the event, do not mention this and say Mrs R, ‘was sat in the garden with daughter [Miss R] when I arrived. [Mrs R] requested that we sat in the kitchen for the review and for the depot [flupentixol decanoate injection]. She looked facially bright […] No risks/concerns identified at this time’.
28. Two weeks later Miss R emailed the care coordinator saying ‘I am not sure if you remember me mentioning she [Mrs R] suffered from a very sudden complete body collapse recently and you said it could be a medication side effect. It has happened again but this time she hasn't recovered as quickly.’
29. Unfortunately, this email does not give any further details about when this incident occurred and Mrs R’s care coordinator says they ‘did not identify any change in [Mrs R’s] presentation, nor any expressed’ before they gave Mrs R the injection at the beginning of September.
30. As we were not present at the time and these two accounts of what was discussed are different, it is difficult for us to reach an impartial view.
31. Our nurse adviser told us if Mrs R had NMS at the time she would have been very unwell. She would have needed urgent medical intervention, which did not happen. And we can see that Mrs R’s care coordinator did not note any possible NMS symptoms during the appointment.
32. Also, NHS HEE guidance explains that while NMS can occur at any time it is most common after starting or increasing medication, and in 90% of cases it begins within ten days of this. Mrs R had had flupentixol decanoate injections for years and had not had a recent increase.
33. So, it seems more likely than not that Mrs R was not showing symptoms of NMS during the appointment with her care coordinator.
34. The nursing code of practice says nurses must notice, monitor and evaluate signs of someone’s normal or worsening physical and mental health. Based on the information we have seen, it seems Mrs R’s care coordinator carried out an assessment of Mrs R prior to giving the injection, and this did not identify any risks or concerns. It was therefore appropriate to give her her prescribed injection.
35. We appreciate how unsettling it is for Miss R to worry that LSCFT should have treated her mother differently.
36. At the same time, we have not seen enough information to show Mrs R’s care coordinator should have had any concerns about giving her her injection on that day. As we have not seen any indications of failings in this decision, we do not propose to take any action on this part of the complaint.
Dalteparin
37. Miss R complains that BTH gave her mother dalteparin at the end of September 2022. She told us she was her mother’s carer and her mother had no evidence of bleeding when she went into hospital so she thinks the blood thinner caused her mother’s perforation and the bleed.
38. She said the Trust admitted her mother to hospital several days before it gave her dalteparin, so she is not sure why BTH gave it to her at this point in her hospital admission.
39. She said when she researched dalteparin and from peer reviewed medical journals she discovered the biggest risk of this blood thinner is a bleed and her mother’s age, being female, and having a kidney problem are risk factors that her mother had. She also told us dalteparin is excreted via the kidneys but not all blood thinners are and her mother’s kidneys were already under massive stress.
40. BTH said it gave Mrs R dalteparin to prevent blood clots and it checked that there were no reasons, such as an allergy or active bleeding which would mean it would have been unsuitable for her.
41. NICE guidelines recommend health professionals assess all patients on admission to hospital for their risk of developing a blood clot and their risk of bleeding. They explain that the person’s risk of blood clots should be balanced against their risk of bleeding when deciding to give them treatment to prevent blood clots.
42. Our gastroenterologist adviser told us doctors routinely use blood thinners to prevent high risk patients from developing a blood clot. They are also checked for any bleeding risks to justify not giving them a blood thinner.
43. We have reviewed Mrs R’s clinical records where BTH assessed how likely Mrs R was to get a blood clot. BTH recorded no risk factors for bleeding and her assessment notes she: • was expected to have reduced mobility for three days or more (she was bedbound and immobile at the time) • was more than 60 years old • had dehydration.
44. These are all risk factors for developing a blood clot according to the Department of Health’s guidance. Furthermore, there were no risks of bleeding identified, nor were there any features of bleeding noted when BTH admitted Mrs R to hospital. It was therefore appropriate for BTH to give Mrs R dalteparin to prevent blood clots.
45. We also note that BTH gave Mrs R 2500 units of dalteparin which according to BNF is a small dose designed to prevent clot formation compared to a larger dose such as 7500 units used for treating blood clots.
46. We appreciate Miss R’s query about why BTH did not give her dalteparin earlier in her admission. We specifically focused on BTH’s decision to give Mrs R dalteparin when it did. BTH not giving Mrs R dalteparin earlier in her admission does not affect that we think giving Mrs R dalteparin when it did, was in line with NICE guidelines because Mrs R had several factors which put her at higher risk of developing a blood clot.
47. We understand Mrs R’s death was deeply shocking and we appreciate Miss R taking the time to describe her concerns to us. As we have not seen indications of failings in BTH’s decision we do not propose to take any action on this complaint.
1. We have carefully considered Miss R’s complaint about LSCFT and BTH. We have seen no indication that anything went wrong in LSCFT giving her mother flupentixol decanoate (an antipsychotic medication) at the beginning of September or in BTH giving her mother a blood thinner at the end of September 2022.
2. We recognise how distressing the sudden death of her mother must be for Miss R and we are sorry to hear she has been left thinking things went wrong in her mother’s care.