Berkshire Healthcare NHS Foundation Trust

Trust A

5. Mrs M complains about the care and treatment provided to her husband Mr M, by Trust A from April 2021 – December 2021. Specifically, she says:

• the Trust assigned an MND specialist practitioner to care for Mr M and did not disclose they were new to the role • the MND specialist practitioner incorrectly recorded Mr M wanted to die in hospice • the MND specialist practitioner made inappropriate comments about removing Mr M’s breathing mask • a consultant urologist inserted a urethral catheter with no prior discussion of different options

6. Mrs M also complains about the way her complaint was handled. She says there were long delays, and she was not told her complaint about the district nurses should be directed to a different Trust. She was not copied into an email addressed to her MP and was not directed to other organisations that could help with her complaint.

7. Mrs M says the ineffective care provided by the MND specialist practitioner caused a great deal of distress to her and Mr M at an already extremely stressful time. She says they wasted precious time having to ensure other organisations involved in Mr M’s care were informed of his true wishes after the MND specialist practitioner incorrectly documented he wished to die in a hospice. She says this was particularly distressing for Mr M as he did not know if he would be made to go to a hospice against his wishes.

8. Mrs M says had it been made clear the MND specialist practitioner was new to the role they would have understood better about their limitations instead of wrongly believing they were in the safe hands of an expert.

9. Mrs M says it was distressing when the MND specialist practitioner said they would be the one to remove Mr M’s NIV mask (a non-invasive ventilation mask to assist with breathing) at the end. She says it was not until she spoke to a counsellor, she realised this was a safeguarding matter.

10. Mrs M says because of the consultant urologist inserting a urethral catheter, Mr M was subjected to months of unnecessary pain and discomfort. She says this had a terrible impact on Mr M’s quality of life and ultimately contributed to his premature death.

11. Mrs M says the process of dealing with the complaint was very difficult in addition to mourning the loss of Mr M. She says she was made to relive the painful experience of trauma. She says she was left feeling Trust A wanted to wear her down so she would give up.

Trust B

12. Mrs M complains about the care and treatment provided to Mr M by Trust B in December 2021. Specifically, she says district nurses changed Mr M’s catheter without adequate pain relief.

13. Mrs M says due to the trauma and pain caused by the catheter change Mr M chose to have his NIV mask removed and die prematurely as he could not face this happening again.

14. As an outcome to her complaints, Mrs M is seeking service improvements.

15. Mr M (74) had motor neurone disease (MND) and was cared for at home by Mrs M. He was under the care of the neurology team at Trust A. The community nurses who work under Trust B also provided care and support to Mr M.

Trust A

MND Specialist Practitioner

20. Mrs M told us an MND specialist practitioner was assigned to care for Mr M, but it was not made clear to them how inexperienced the MND specialist practitioner was in the role. Mrs M says the title of MND specialist practitioner was misleading. She says she and Mr M believed they were in the hands of an experienced clinician when this was not the case at all.

21. Mrs M says they should have been informed at the outset about the true extent of the MND specialist practitioner’s experience.

22. Trust A acknowledged this is a recognised challenge when a member of an allied health professional team is employed in a new and non-traditional role.

23. Allied health professionals (AHP’s) are defined as those who provide a range of diagnostic, preventative, therapeutic and rehabilitative services in connection with healthcare. They work alongside physicians, nurses, and other healthcare providers to support patient care and improve health outcomes. AHP’s are distinct from traditional medical roles, focusing on specialised areas that complement the work of doctors and nurses.

24. Trust A said had the MND specialist practitioner’s clinical training been in nursing then their title would have been MND clinical nurse specialist. It explained as their training is in physiotherapy their title is correctly MND specialist practitioner with the specialist element relating to care of only people with an MND diagnosis.

25. Trust A said it recognised there were inconsistencies in how the role was documented and referred to. It said the ‘practitioner’ element relates to the post holder being autonomous and leading their own outpatient clinics. It said it would reiterate to the MND specialist practitioner they must consistently educate colleagues and professionals who use the incorrect title to address them with the correct job title.

26. During a local resolution meeting Trust A apologised to Mrs M and acknowledged the MND specialist practitioner could have been clearer about their level of experience and how new they were to the role.

27. Mrs M also told us the MND specialist recorded in error Mr M’s preferred place of death was the hospice. She says this information was recorded on a fast track form which had been duplicated on systems across the different services involved in Mr M’s care. Mrs M told us trying to get this error corrected wasted valuable time and caused immense distress at an already extremely difficult time.

28. Trust A acknowledged and apologised for the upset and distress caused by the misunderstanding. It advised the MND specialist practitioner believed Mr M’s preferred place of death was a hospice but had documented they suspected there was a high chance he would change his preference to home.

29. Trust A further apologised during a local resolution meeting for incorrectly recording Mr M wanted to die in a hospice. Trust A reassured Mrs M that Mr M was able to die at home as he wished and recognised the distress caused and assured this was not done with malice.

30. Mrs M told us additionally there were instances where the MND specialist made comments which were inappropriate and caused her concern. Notably the MND specialist told Mr M, ‘I will be the one to remove the NIV mask when the time comes’ and ‘I am over everyone.’

31. Understandably, Mrs M said these comments did not feel appropriate and she mentioned it to her counsellor who pointed out this was a safeguarding concern.

32. During the local resolution meeting Trust A said it was felt the comment made about removing Mr M’s NIV mask was not said out of malice or a desire to be in control. It said following a number of conversations with the MND specialist practitioner it was an attempt on their part to reassure Mr and Mrs M the MND specialist would be there for them. Trust A said it was sincerely sorry this was not effectively communicated and caused such concern.

33. Trust A said no end of life decisions including withdrawal of a patients NIV mask would be made by a member of the MND team in isolation. It said such decisions are always taken jointly as a multidisciplinary team (MDT) in conjunction with the patient and their family and never by lone individuals.

34. Trust A explained the use of ‘over everyone’ to mean the overarching nature of the MND specialist practitioners' role where they could support and coordinate relevant services in a timely way. It apologised for the ambiguous nature of the comment and apologised for any confusion or stress caused.

35. Trust A said following Mrs M’s concerns, the decision was made to immediately remove the MND specialist from Mr M’s team of carers. Senior clinicians within the MND team contacted Mrs M directly to discuss her concerns and offer support.

36. We asked our neurologist adviser to consider if these service improvements were sufficient to remedy the issues raised by Mrs M.

37. We recognise the distress caused by the inappropriate comments and the error in recording Mr M wanted to die in a hospice. We consider the Trust took appropriate immediate action by excluding the MND specialist practitioner from Mr M’s care and putting in place an enhanced level of supervision, with a requirement for the clinician to reflect on this feedback at their annual appraisal and undertake additional communication skills training.

38. Trust A said it had reached out to the MND community for feedback to improve its service. The Trust provided us with a copy of its MND patient experience survey which it says is ongoing. The survey can be accessed via a link. The Trust said it varies when the link is sent, to be sensitive to bereavement timelines. It said the link is only shared with families who have received MND care from the Trust.

39. Trust A told us it had implemented a standard operating procedure (SOP) for the MND specialist practitioner role and provided us with a copy of the SOP which was approved by the Neurology department and Clinical Governance team.

40. Guidance from the HCPC for scope of practice states the SOP should set out, in general terms how it expects registrants to behave and outline what the public should expect from their health and care professional. The guidance also refers to supervision and delegation stating:

• you must only delegate work to someone who has the knowledge, skills and experience needed to carry it out safely and effectively

• you must continue to provide appropriate supervision and support to those you delegate work to.

41. While Trust A’s SOP outlines the duties of the MND specialist practitioner there is no description of competencies, how these are assessed or how the practitioner is clinically supervised. As such it does not provide the detail necessary to fulfil the expectations of the HCPC guidance.

42. Our neurologist adviser also pointed out the fact the SOP for the role of MND specialist practitioner was only developed after Mrs M raised concerns would indicate there may have also been a failure in Trust A’s governance process for developing new roles.

43. We asked Trust A to explain the governance process for the MND specialist practitioner role. Trust A told us this role is classified as specialist rather than ‘advanced practice’ and as such is managed within the specialty rather than the Trust’s guidance for advanced practice. Trust A told us it does not currently have a specific framework for specialist practice.

44. Trust A explained the role was initially under the line management of a nurse consultant in sleep and ventilation but moved to being under the clinical supervision of the consultant neurologists along with operational and professional line management from the lead integrated neurology MDT manager in March 2021.

45. While this explains the overall governance process within the Trust, it does not explain how the development needs of newly appointed specialist practitioners are assessed, how they are supported to achieve the relevant specialist competencies and how the stage of development and supervision is communicated to patients and carers.

46. NHS England’s guidance for ‘good practice in new workforce roles’ discusses the importance of building the right governance structures.

47. Our neurologist adviser said a commitment to producing guidance for developing specialist practice which encompasses the issues highlighted would be an appropriate remedy.

48. We discussed our findings with Trust A, and it has agreed to resolve these issues by ensuring its SOP is amended to include the necessary descriptions of competency and supervision. Trust A has also committed to undertake the necessary work to ensure a robust governance process for its specialist practitioner roles.

49. Our principles for remedy state, ‘in seeking continuous improvement, part of a remedy may be to ensure changes are made to policies, procedures, systems, staff training or all of these to ensure maladministration or poor service is not repeated. The public body should ensure that the complainant receives an assurance that lessons have been learnt and an explanation of changes made to prevent maladministration or poor service being repeated.’

50. In resolution to this part of Mrs M’s complaint, we have asked Trust A within three months of the date of this report to write to Mrs M to outline how these service improvements will be implemented. We are satisfied this is an appropriate remedy to this part of Mrs M’s complaint.

Catheter

51. Mrs M told us during a urology appointment in April 2021 Mr M had a catheter placed that caused him great physical pain. She says they were not told a suprapubic catheter was an available option and would have been much less traumatic.

52. NICE guidance states patients and their families should receive ‘ongoing support and training for using a catheter at home’. It also states the patient should be ‘offered the type of catheter that is best suited for them’.

53. Guidance from the Royal College of Nursing states, ‘decisions should be made within a wider MDT with family members or persons engaged in caring for the patient.’

54. Mrs M said the appointment felt rushed with no chance to ask questions and no advice or ongoing support given regarding catheter care. She says they were told to watch a YouTube video for advice.

55. The Trust said the decision not to use a suprapubic catheter was taken as the community nurses inserted the catheter and a suprapubic is an invasive procedure which requires attending the hospital for insertion and Mr M was for care at home.

56. It said in hindsight, staff should have discussed the long-term care and options such as the suprapubic catheter, including the pros and cons of this, in order for Mr M to decide how he would like to proceed.

57. Mrs M had the opportunity to discuss her concerns during a local resolution meeting. She told us it was a relief to hear the urologist in question no longer worked for the Trust and felt comforted by a consultant urological surgeon who agreed the level of care they received was not of the expected standard.

58. The Trust issued an apology and acknowledged the care was substandard. The Trust has documented that best practice would have been to discuss long-term care and options such as suprapubic catheterisation.

59. The Trust has apologised for this oversight and said it would remind staff of the importance of effective communication with patients and their relatives. It said it would work alongside the urology nursing team to make sure staff are educated in providing the most appropriate information to patients.

60. We consider the actions the Trust has taken is in line with guidance from NICE and the Royal College of Nursing and is sufficient to remedy this part of Mrs M’s complaint.

Complaint handling

61. Mrs M told us she has concerns about the way in which Trust A handled her complaint. She says there were long delays, with PALS initially dropping her complaint. She says she was not told her complaint about the district nurses should be directed to a different Trust. Mrs M says it also failed to copy her into an email which was sent to her MP and did not signpost her to other organisations that could help such as PHSO or General Medical Council (GMC).

62. We spoke to Trust A about Mrs M’s concerns. Trust A apologised for the initial delay in responding to Mrs M’s complaint. It told us since Mrs M made her complaint it has implemented new processes within the complaints team. These include routing all communication with complainants through a single central generic inbox, which is managed by the senior team. This ensures correspondence is monitored effectively and that timely advice is provided regarding the appropriate organisation to respond to a complaint.

63. Trust A told us it has also implemented a weekly meeting involving the Complaints Senior Team, Patient Safety, and Adult and Children’s Safeguarding teams. This forum allows it to review and discuss all new complaints, determine the most appropriate handling approach, identify any cross-organisational issues, and ensure early support and advice is provided to both the case coordinator and the complainant.

64. Regarding MP complaints or those received via an advocacy service, it told us it now has a clear process. If a complaint is submitted with a consent form directly by an MP, it responds directly to the MP, who then shares the response with their constituent. If the MP is copied into a complaint only, it liaises directly with the complainant and copies in the local MP.

65. Trust A provided letter templates showing it now signposts all complainants to PHSO as a matter of course. While we recognise Mrs M’s frustration that Trust A did not signpost her to GMC or other governing body such as HCPC, there is no requirement to do so as this is not a step in the complaints process.

66. When considering complaint handling concerns, we look to see whether an organisation has acted in accordance with NHS complaints standards. The Trust has told us during 2025 all complaint handling staff attended the Ombudsman complaints handling training and have been refreshed on the importance of adhering to the NHS complaint standards.

67. We are satisfied the service improvements outlined above are an appropriate remedy to this part of Mrs M’s complaint.

Trust B

Paperwork

68. Mrs M says the palliative team had prescribed ‘just in case’ (JIC) medication on 2 December to help alleviate pain during catheter changes. She says the community nurse who arrived to change Mr M’s catheter on 3 December was not able to administer the morphine injections and had to wait for a different nurse to arrive. She told us when the other nurse arrived there was a further delay as the paperwork to administer the JIC medication was not in place.

69. We reviewed this issue with the help of our nurse adviser using Mr M’s medical records.

70. On 3 December 2021 it was noted Mr M’s catheter did not appear to be draining. Mrs M informed the staff member Mr M would need a morphine injection prior to the catheter change. The staff member told Mrs M they were not able to administer an injection, and they called for a nurse colleague to attend instead.

71. In its final response letter, Trust B explained the staff member concerned was not a community nurse but a nursing associate and giving controlled drug injections was not within the competency or job requirements for a nursing associate, which is why they called a nurse colleague. The Trust said this should have been clearly explained at the time and they apologised this did not happen.

72. The nurse colleague was unaware Mr M needed morphine injections. Mrs M explained to the nurse the palliative care team had advised Mr M should have morphine injections. The nurse replied they could not administer the morphine injection without authorisation.

73. The Trust said the palliative team who arranged for the JIC medication prescription had not organised the authorisation paperwork required to allow the district nurses to administer the medication and did not make a referral to the district nursing service informing them JIC medication had been prescribed. Gathering this authorisation resulted in a delay in administering pain relief prior to the catheter change. The Trust apologised for this error.

74. The Trust said the learning to be shared with wider teams includes the importance of clear communication between the district nursing service and the palliative team particularly around plan of care and associated written authorisations.

75. The Trust has introduced a daily conference call between the community nurses and palliative team to establish patient needs, have a clear plan for the patient and be able to confirm if required documentation is in place. The Trust said this complaint and learning from it would be fully discussed during team clinical supervision to ensure the learning is understood and embedded by all staff.

76. The Trust said all palliative and end of life patients are discussed in a daily conference call with the hospice and they have a senate monthly meeting with the hospice also.

77. The NMC Code states to work cooperatively, you must:

• 8.5 work with colleagues to preserve the safety of those receiving care

• 8.6 share information to identify and reduce risk

78. District nurses cannot administer injectable medications without a clear prescription from a GP or non-medical prescriber.

79. Guidance from the Royal Pharmaceutical Society says, ‘Medicines are administered in accordance with a prescription, Patient Specific Direction, Patient Group Direction, or other relevant exemption specified in the Human Medicines Regulations 2012’

80. A daily conference call between the community nurses and the palliative care team will ensure that the NMC standards regarding the sharing of information are met and the authorisation to administer injectable medications is in place as per the Human Medicines Regulations.

81. The Trust have confirmed the daily conference calls will include confirmation that crucial paperwork such as medication administration charts are in place. The monthly senate meeting will ensure these standards are being met across the service.

82. We are satisfied the service improvements implemented by the Trust are sufficient to remedy this part of Mrs M’s complaint.

Pain relief

83. Mrs M told us the community nurses did not administer enough morphine and did not wait long enough for it to work before changing Mr M’s catheter. She told us when the community nurses changed the catheter, there was a lot of blood and Mr M screamed in pain. She told us he was so traumatised by the painful catheter change he decided to remove his NIV mask two weeks later and ended his life prematurely.

84. We reviewed this issue with the help of our nurse and neurologist advisers using Mr M’s clinical records.

85. Guidance from the NMC states the registered nurse will be able to:

• 4.14 understand the principles of safe and effective administration and optimisation of medicines in accordance with local and national policies and demonstrate proficiency and accuracy when calculating dosages of prescribed medicines

• 4.15 demonstrate knowledge of pharmacology and the ability to recognise the effects of medicines, allergies, drug sensitivities, side effects, contraindications, incompatibilities, adverse reactions, prescribing errors and the impact of polypharmacy and over the counter medication usage

86. Once the authorisation was in place later on the same evening, the district nurses returned to administer morphine and change Mr M’s catheter. The nurse administered 2.5mg of morphine and waited 15 minutes before changing the catheter. The nurse also applied Hydrocaine gel (numbing cream) to the tip of the penis and removed the catheter with care.

87. Trust B said 2.5mg morphine was an appropriate dose to administer as a first dose as Mr M had not had morphine injections prior to this, and this was the starting range prescribed by the GP. Trust B said it is a clinical decision at the time but based on the oral morphine Mr M had taken in the previous 24 hours, a 5mg dose of morphine would not have been inappropriate.

88. The GP notebook states, ‘if the patient is taking a regular oral opioid a subcutaneous breakthrough dose of the same opioid should be prescribed for the JIC box. Subcutaneous dose would usually be half of the oral dose e.g. the subcutaneous equivalent of morphine 10mg is subcutaneous morphine 5mg.

89. Mr M was taking 3mls of Oramorph which equates to 6mg of morphine sulphate. Therefore, a safe starting dose of subcutaneous morphine sulphate for Mr M would be 3mg.

90. The nurse noted Mr M complained of excruciating pain, although the nurse had felt no resistance on removal of the catheter. The nurse applied further Hydrocaine gel and waited 5 minutes before inserting the new catheter. The nurse noted easy insertion and clear urine drained before balloon inflated. Mr M eventually felt more comfortable and relaxed.

91. The notes document Mr M had reported previous painful experiences with catheterisation. The nurse noted they felt there was a need for emotional support. There is no record of bleeding or any resistance.

92. Mrs M told us the day after the painful catheter change, she called an ambulance as she thought Mr M was having a heart attack. She says paramedics confirmed he was not having a heart attack but questioned whether he had been through a recent trauma. Mrs M says this proves the severity of the trauma caused by the catheter change.

93. Mr M’s hospice notes document Mr M’s prognosis was short, and he was experiencing a significant level of distress due to ongoing symptoms including pain. We acknowledge the catheter change was extremely painful and distressing for Mr M and may well have been a factor in his decision to remove the NIV mask.

94. We cannot, however, say with all certainty the painful catheter change was the only reason Mr M chose to remove his mask as his decision was made in the context of his deteriorating neurological condition with a short prognosis.

95. We do not doubt how distressing this was for both Mr and Mrs M and recognise how the memory of this is still painful for Mrs M.

96. Trust B has implemented service improvements. It said with regards to the morphine dose administered the Trust said this would be reviewed during regular supervision sessions when individual cases are discussed to ensure learning is clear and shared with the broader team.

97. Our nurse adviser told us administering a morphine dose of 5mg rather than 2.5mg, is a clinical decision that would be made at the time of events. The regular supervision sessions and the support of staff with their clinical competencies will ensure that such decisions can be confidently made at the time of the events, to ensure that the pain is controlled.

98. Our neurologist adviser noted there is a reference to anxiety and distress around catheter interventions being an important factor in Mr M’s experience, and this highlights the need for a holistic palliative care assessment which goes beyond provision of pain relief to include consideration of the need for additional symptomatic measures.

99. Trust B told us it has an explicit option of urgent escalation for palliative assessment and pain control. It has an urgent nurse on duty that will visit a patient who requires urgent unplanned daily visits.

100. It told us the service lead, community nurse managers and team lead have implemented a clinical lead role to support junior staff, new staff, student nurses and current staff with clinical competencies.

101. We consider these service improvements already implemented by Trust B sufficiently remedy this complaint part.

Summary

102. We recognise how profoundly Mrs M’s complaint has affected her. Some things did not happen as they should in relation to Mr M’s care. We acknowledge this has added to Mrs M’s grief, after Mr M died. We hope our statement reassures Mrs M the improvements made, will change things for the better.

1. We have carefully considered Mrs M’s complaints about Trusts A and B. Having done so, we think Trust A did not have an adequate standard operating procedure or governance process for the role of MND specialist practitioner. Trust A has agreed to provide a resolution to Mrs M’s complaint by implementing service improvements to remedy this.

2. We think Trust A has already taken sufficient action to remedy the part of Mrs M’s complaint about the type of catheter and complaint handling.

3. We consider the service improvements outlined by Trust B in relation to the pain relief are sufficient to remedy this part of Mrs M’s complaint.

4. We acknowledge how important Mrs M’s complaint is to her and recognise she has been through an incredibly difficult time. We are sorry to hear about Mr M’s sad death and the impact this had on Mrs M.