Communication
19. Our SMG explains there will be occasions when we decide that there are reasons why we should not investigate a complaint made to us. This includes when an investigation would not be practical, or would not reach a satisfactory conclusion, and there would be no value in providing that response though an investigation. We think this applies here, and we have explained why below.
20. Mrs M complains that nurses took a long time to respond to telephone queries and lied to family members. For example, Mrs M says the Trust lied about when staff saw L, and when medication arrived on the ward.
21. The NMC Code says that nurses should make sure people are informed about how and why information is used and shared by those who will be providing care. It says nurses should share with people, their families and their carers (as far as the law allows) the information they want or need to know about their health, care and ongoing treatment. The information should be shared sensitively and in a way that they can understand.
22. The records show very frequent conversations between nurses and doctors with L and her mother, father and sister. L had the capacity to engage in conversations about her treatment, and we can see the Haematology Cancer Nurse Specialist reviewed her regularly. There are several notes which say that staff explained treatments to L, such as her portable pump, Blinatumomab infusions and treatment intervals.
23. We can also see records of facetime calls with L and her family members.
24. We acknowledge Mrs M has told us the Trust took a long time to respond to telephone queries. It is difficult for us now to reach a view on how long it took the Trust to respond to telephone queries. It is also difficult to establish whether that timescale appears to be in line with general guidance. We recognise that appropriate timescales can often be subjective. We acknowledge the importance of the communication between the Trust and Mrs M and why she may have felt the Trust took too long.
25. We also cannot reach a view on whether staff lied to Mrs M. We acknowledge Mrs M has told us about instances where she believes Trust staff told her something different to what had happened. It is not possible now for us to say whether this this occurred, and whether the intention was to lie about this.
26. We recognise the importance of this for Mrs M and why communication is such an important part of providing care to patients. We are sorry that we cannot reach a view on the issues she has raised here.
Cleanliness of rooms
27. Mrs M complains that L had to stay in a room with faeces on the walls while she was neutropenic. She says this could have affected L's neutropenic levels, she was also concerned that her daughter would catch an infection and this was distressing.
28. The NHS cleanliness guidelines say that all wall surfaces including skirting should be visibly clean with no blood or bodily substances, dust, dirt, debris, adhesive tape or spillages. It also says that a full clean should be performed annually, with a check and soiled areas being cleaned daily.
29. Nursing staff would be expected to check the walls for cleanliness daily and escalate any concerns to the cleaning teams.
30. Our adviser has said it would be unlikely that we would see reference to room cleaning in the medical records. There is no record of a complaint about room cleanliness during family contacts or meetings.
31. As we have explained in paragraph 18, there are times when we decide not to investigate a complaint made to us. We have decided we are unable to take a view on this aspect of Mrs M’s complaint due to a lack of contemporaneous records. We cannot say whether the dirty room was seen, reported, or cleaned promptly.
32. We understand Mrs M was concerned the lack of cleanliness could affect L’s health. We recognise this caused her worry and distress. We recognise Mrs M will be disappointed by our decision. We hope we have explained why we have decided not to consider this part of Mrs M’s complaint further.
Pain medication
33. 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 seen any indication that something has gone wrong.
34. Mrs M complains about delays providing L with pain medication. She says delays in providing pain medication left her L in substantial pain.
35. The RPS guidelines say that medicine is administered in accordance with a prescription. The prescription sets out the timescales which it should be administered. Medicines which are not ‘prescription only’ may be administered according to a locally agreed home remedy protocol. Records should be kept of all medications administered, withheld or declined. Staff should also record the reason for a medicine not being administered, and if appropriate the medical team should be notified.
36. Our adviser has told us there are no specific guidelines for the timeliness of administration of pain relief. Good Medical Practice guidelines say that medical professionals should take all possible steps to alleviate pain and distress whether or not a cure may be possible. The NMC guidelines say that nurses should take appropriate action to reduce or minimise pain or discomfort.
37. The WHO analgesic ladder says that in the first instance pain should be treated with a non-opioid analgesic, such as paracetamol. If this is not sufficient to stop the pain then the second step is a weak opioid, such as codeine. If this does not alleviate the pain the final step is a strong opioid, such as morphine.
38. We have reviewed the Trust prescription records which show what the Trust prescribed, and when the medications were given.
39. The records show the Trust prescribed L regular paracetamol and morphine. We can see from the records that in May 2022 the Trust gave these medications in line with the prescription, unless L declined it.
40. In February to April 2022, the records show the Trust prescribed L regular codeine phosphate four times per day. The records show the Trust administered this on three occasions before it was stopped by medical staff. The Trust also prescribed morphine twice a day and morphine sulphate liquid as required. The Trust also prescribed L paracetamol four times a day. The records indicate the Trust gave this in line with the prescription.
41. We can see in the nursing records that staff asked L about her pain. On one occasion we can see the nurse requested a review from medical staff as L’s prescribed pain relief was not controlling her headaches. Mrs M complains the Trust took five hours to respond to this request and prescribe further analgesia.
42. The records show on 13 March at 10.36am a nurse requested a review of pain relief as L still had a headache after taking paracetamol. The doctor reviewed L at 12.11pm and prescribed a trial of codeine. We can see the nurses gave L codeine at 4.42pm, and 9.40pm.
43. On 14 March L had codeine at 6.28am. At 8.22am the nurse requested a review as L was still in pain. The doctor reviewed L at 10.25am and prescribed a trial of Oromorph (an oral form of morphine). We can see the Trust gave this at 10.43am, 3.07pm, and 7.32pm.
44. We can see the Trust gave L Oromorph on 15 March, at 3.34am, 8.45am, 1.25pm, and 6.15pm. The nurses have recorded at 1.51pm that L said her headache better.
45. The records for 16 March at 2.04am say L said she had no headache when asked. The doctor reviewed L as part of the ward round at 12.49pm and prescribed morphine to be given every two hours.
46. We can see in the records that when L reported pain that was not alleviated by pain relief the nurses requested a medical review. The doctors then prescribed a stronger form of pain relief, codeine. When this still did not alleviate Amelia’s pain the nurses requested another review, and the doctors prescribed the next strongest pain relief, morphine. This is in line with the WHO analgesic ladder.
47. We understand that that Mrs M feels that L was left in pain, and there was a delay in prescribing her pain relief. From the evidence we have seen, it appears the Trust’s actions to alleviate Amelia’s pain are in line with the NMC guidelines and Good Medical Practice, as the Trust recognised Amelia was in pain and took steps to address this.
48. We acknowledge how distressing it was for Mrs M to witness L in pain, and we recognise she thinks the steps the Trust took should have happened faster. We have not seen an indication of a failing here, so we will not be considering this part of Mrs M’s complaint further.
Delay in chemotherapy
49. Mrs M complains about delays providing L with chemotherapy (blinatumomab). She says the delays with providing treatments caused distressed and uncertainty. She is also concerned that the delayed treatments could have cause a further relapse of L's leukaemia.
50. The Good Medical Practice guidance says doctors should provide effective treatments based on the best available evidence. The NICE Blinatumomab guidelines do not provide specific guidelines for the timeliness of Blinatumomab administration at an individual level.
51. Our adviser has explained that Blinatumomab is a monoclonal antibody or targeted drug which is given in cycles of treatment. Each cycle takes 42 days and is given by a continuous drip for 28 days followed by a break of 14 days. Our adviser has said that it would be acceptable for each treatment to be started when it was available.
52. The records indicate that there were some occasions where there were slight delays to a new bag being administered to L. For example, on 8 April, a treatment arrived from the pharmacy at 3.45pm when the previous bag had finished at 3.30pm. On this occasion there was also an issue with the labels on the bag. There was a slight delay of a few minutes while staff contacted the pharmacy.
53. Our adviser has explained that the half life of Blinatumomab (the time taken to lose half its strength) is 2.19 hours. They explained that short delays in administration would have no impact on the effectiveness of the treatment .
54. We understand the importance of this treatment for L and her family, and we recognise that experiencing perceived delays in treatment would cause L and her family distress. It appears that the Trust’s actions when providing L with Blinatumomab were in line with the Good Medical Practice guidance. We have not seen an indication of a failing here, and because of this, we will not consider this part of the complaint further.
55. Mrs M also complains about delays in providing L with intrathecal treatments. She also complains that on one occasion L was mistakenly injected into her spine. We recognise the impact Mrs M says these delays caused.
56. Intrathecal treatments involves administering medication directly into the cerebrospinal fluid which surrounds the brain and spinal cord. It is usually administered via a lumber puncture, where a needle is inserted into the spinal canal. IV or oral treatment may not effectively penetrate the blood/brain barrier, whereas intrathecal treatments can bypass this. It is often used for chemotherapy to treat conditions such as cancer.
57. The Good Medical Practice guidance says doctors should provide effective treatment based on the best available evidence. Our adviser has said there are no guidelines which specify timeliness of intrathecal treatments.
58. Our adviser has said there are no indications in the records that there were any delays in L’s intrathecal treatments. We recognise Mrs M has told us there were delays with this treatment.
59. As explained in paragraph 18, we recognise there are times when an investigation would not be practical. We have considered the conflicting evidence that is available, and we do not feel that we can resolve this conflict. This is not to say we do not believe Mrs M, but we cannot give one piece of evidence here stronger weighting than the other. Because of this, we will not consider this part of her complaint further.
60. Mrs M complains about an incident where L was mistakenly injected in her spine which caused her headaches.
61. Before we decide if we should conduct a detailed investigation of a complaint, we look at whether there are signs the event complained about had a negative effect which the organisation has not put right. Having done so we cannot link the events complained about with the negative impact Mrs M has claimed.
62. We can see that the Trust discussed a bleed with Mrs M as a possible cause of L’s headaches. Our adviser has said a subsequent scan confirmed that the subdural collection of fluid was not blood. Our adviser explained that this was a collection of fluid between the thin inner and thicker outer lining of the brain.
63. We understand that being told L had a brain bleed as a result of her treatment would be very concerning for her family. We recognise the distress that this has caused. We are satisfied that the evidence shows this was not the case. We have not seen an indication of a failing here.
Consent for chemotherapy
64. Mrs M complains the side effects of chemotherapy were not cited on the consent form. She tells us that the treatment damaged Amelia’s lungs and was killing her, and if the side effects had been noted then she would have asked about different treatment options.
65. The GMC guidelines say clinicians must give patients the information they want or need to make a decision. This includes the potential benefits, risks of harm, uncertainties about and the likelihood of success for each option. By ‘harm’ the guidelines are referring to any potential negative outcome, such as side effects or complications.
66. We can see the Trust obtained consent for both Blinatumomab and intrathecal treatments. The consent forms outline possible side effects. Particularly, we can see on the consent form for intrathecal treatment, it lists possible organ failure including bowel, heart, lung and liver.
67. We can see that L has signed this consent form. We have seen nothing to indicate L was not aware of the side effects, or that when providing consent, she was not provided with enough information to provide informed consent. We therefore think the Trust appears to have acted in line with the GMC guidelines.
68. We understand Mrs M feels the treatments contributed to L’s poor health, and if they were fully aware of this possibility they would have asked about different treatments. It appears that the Trust’s communication about the side effects were in line with guidelines. We do not intend to cause Mrs M distress with our decision.
Complaint handling
69. Miss M complains about the conduct of a doctor in a meeting. She tells us that they discussed the complaint without prior warning, and she felt that the doctor threatened Amelia’s care if she continued to complain.
70. Before we decide if we should conduct a detailed investigation of a complaint, we look at whether there are signs the event complained about had a negative effect which the organisation has not put right. Having done so we think the Trust has already done enough to put right the impact of these events. We have explained why below.
71. The Trust’s complaint policy says the Trust will assure patients, relatives and their carers that they will continue to be treated according to their clinical needs. It care will not be compromised as a result of making a complaint.
72. The record of the appointment in question does not include Mrs M’s concerns as noted above. However we recognise if Mrs M was made to feel L’s care would be affected by her complaint this is not in line with the Trust’s policy.
73. We have gone on to consider the Trust’s response to this. The Trust has recognised that the consultant’s wording may have been inflammatory. It has apologised for the error and the impact this had. It also reflected on what would have been a better way for the consultant to communicate with Mrs M.
74. Our NHS complaint standards set out how organisations providing NHS care should approach complaint handling. These standards say that organisations should see complaints as an opportunity to develop and improve its services and people. It says responses should be fair and accountable, setting out what happened and whether mistakes were made. It should set out how the organisation is accountable and take action to make sure any learnings are identified and used to improve services.
75. We consider the response from the Trust appears to be in line with the Complaint Standards. It acknowledged it made mistakes, and it was accountable for them. It apologised to Mrs M for the distress its actions had caused, and it identified learning and set out actions taken to improve services.
76. We acknowledge Mrs M found the doctor’s conduct to be shocking, and we recognise how distressing it would have been for her to worry L’s treatment could be impacted. We think the Trust has already done enough to put things right here, and we will not consider this part of Mrs M’s complaint further.
77. Mrs M also complains about a delay in the Trust proving complaint responses.
78. The Trust’s complaint policy says timescales to complete the complaint investigation will be agreed between the Patient Relations Team and the person who has made the complaint. These should reflect the current Trust response times. On the Trust website this is stated as within 65 working days, but it can be extended to allow more time to complete our investigations in full and ensure the response addresses all of the concerns.
79. It says that the Trust aims to complete all investigations within six months but in exceptional circumstances it may require longer. The Trust said this should be discussed with the complainant and a target agreed.
80. Mrs M first contacted the Trust about her concerns in March 2022. She contacted them about further concerns in March, April, July and August, and September. The Trust sent its first response in January 2023.
81. Mrs M went back to the Trust as she felt the response did not address her concerns fully. It contacted her to let her know it would consider these concerns, and it issued a further response in May 2023.
82. We asked Mrs M to return to the Trust in February 2024 as some issues she brought were not ready for us to consider. She did so, and the Trust responded in November 2024.
83. We can see that Mrs M contacted the Trust frequently about her complaint. We have been provided with some email threads from the Trust. In these emails we cannot see that the Trust provided with a target date for the completion of the complaint investigation. We also think it did not update this when Mrs M contacted them to provide further complaints. This does not appear to be in line with the Trust’s complaint policy.
84. We have gone on to consider the Trust’s response. The Trust has apologised for the delay Mrs M experienced, and it explained that due to Mrs M adding more complaint issues the investigation had to be extended. The Trust has said the feedback has been passed on to the Divisional Management Team so that it may learn from her experience.
85. As above, our NHS complaint standards set out how organisations providing NHS care should approach complaint handling. These standards say that organisations should see complaints as an opportunity to develop and improve its services and people. It says responses should be fair and accountable, setting out what happened and whether mistakes were made. It should set out how the organisation is accountable and take action to make sure any learnings are identified and used to improve services.
86. We consider the response from the Trust is in line with the Complaint Standards. It acknowledged it made mistakes, and it was accountable for them. It apologised to Mrs M for the distress its actions had caused, and it identified learning and set out actions taken to improve services.
87. We acknowledge the Trust’s response to Mrs M’s complaint caused her uncertainty. We appreciate how delays in resolving a complaint can cause ongoing distress and frustration. We think the Trust has acknowledged the mistakes it made here, and it has taken steps to put things right.
88. We are aware that since Mrs M’s complaint the Trust has put considerable effort into bringing the time it takes to respond to complaints down. We hope this provides Mrs M with some reassurance that the Trust has made improvements here.