IRP’s recommendation
20. We cannot question discretionary decisions, including decisions about eligibility for CHC, when they have been made without maladministration (fault). This means we will only carry out a detailed investigation if there are indications of maladministration in the way an eligibility decision was reached.
21. CHC eligibility decisions are based on clinical judgements and opinions. The fact that someone else has a different opinion does not mean there must have been an error in the decision-making process. It is our role to consider whether an IRP’s decision-making was in line with the National Framework.
22. We have carefully considered Mr D’s complaint alongside the IRP’s report, Mrs D’s nursing home records and the National Framework. We have not seen any indications of maladministration in the IRP’s decision-making. We will explain our consideration in detail below.
Psychological and Emotional Needs
23. The MDT gave a weighting of Moderate in this domain. It said Mr D and his advocate had reported Mrs D had a long-standing history of depression and his mother’s personality had changed following a stroke in 2012.
24. The MDT said there was no record of depression, doctors had not prescribed any medication for this and there were no reported episodes of low mood or tearfulness. It recognised staff had started nursing Mrs D in bed due to a recent deterioration in her condition and this had led to her becoming flatter in mood and engaging less with staff.
25. The MDT said Mrs D suffered from periods of hallucinations lasting up to two hours every couple of weeks. It said during these times she would believe she was at an airport or a wedding and would become frustrated when staff did not respond appropriately. It also said Mrs D did not respond to prompts or reassurance, so staff ensured she was safe and comfortable and then checked on her at regular intervals.
26. In their appeal to the CCG, Mr D’s advocate said the CCG should have weighted Mrs D High due to the duration, frequency, and level of distress her hallucinations caused. They said she was totally withdrawn from any attempts to engage in care planning, support, or daily activities. They also said she was a recipient of care as opposed to a participant, be that physically, psychologically, and emotionally.
27. At the LRM, Mr D said his mother’s hallucinations went on for hours until she was exhausted and fell asleep. He also spoke of being able to tell she was distressed during these hallucinations as she would tense up, tap her fingers, clench her hands, and pull the duvet over herself out of fear. We recognise this must have been incredibly difficult for Mr D to see.
28. Mr D said he had not pushed the issue of the hallucinations with the nursing home or his mother’s GP as he did not want them to move her to another home. He said the hallucinations were having a severe impact on her, and they were not subsiding. He also said the nursing home’s record keeping did not properly reflect his mother’s needs.
29. After the local appeal, the CCG said Mrs D’s hallucinations did not appear to be distressing in content and she did not need intense levels of input. It also said she did not receive medication for her hallucinations, and community mental health services were not involved.
30. In their appeal to NHSE, Mr D’s advocate said the CCG had not acknowledged Mrs D did not respond to prompts or reassurance from staff. They said the hallucinations had an immense impact on Mrs D given their gravity and the level of distress they caused. They said they were undoubtedly having a severe impact on her health and wellbeing.
31. Mr D’s advocate said the local appeal referred to Mrs D’s hallucinations not appearing to be distressing in content. They said this was an opinion rather than a statement based on evidence.
32. Mr D’s advocate also said Mrs D was withdrawn from any attempt to engage her in care planning, support, or daily activities. They said the only interaction she could make was to blink her eyes. They said she had no ability to express her feelings, anxiety, or fear. They said she was physically bedbound and contracted.
33. The IRP said Mrs D did have periods of distress and experienced hallucinations which did not readily respond to prompts or reassurance. It said the nursing home records did not indicate these periods of distress had a serious impact on her health or wellbeing. It agreed with the CCG’s weighting of Moderate.
34. We started by looking at the National Framework. The DST documentation sets out what to look for when considering each domain. For a weighting of Moderate, the descriptor in the DST says:
Mood disturbance, hallucinations or anxiety symptoms, or period of distress, which do not readily respond to prompts and reassurance and have an increasing impact on the individual’s health and/or well-being
OR
Due to their psychological or emotional state the individual has withdrawn from most attempts to engage them in care planning, support and/or daily activities.
35. For a weighting of High, the descriptor says:
Mood disturbance, hallucinations or anxiety symptoms, or period of distress, that have a severe impact on the individual’s health and/or well-being
OR
Due to their psychological or emotional state the individual has withdrawn from any attempts to engage them in care planning, support and/or daily activities.
36. We then looked at Mr D/his advocate’s comments alongside the IRP report. It is clear
Mr D/his advocate and the IRP agree Mrs D suffered from hallucinations that did not respond to prompts or reassurance and they impacted her health and/or wellbeing. The dispute appears to lie in whether these hallucinations were having ‘an increasing impact’ or ‘a severe impact’.
37. We next checked the nursing home records to see what they say. From what we can see, these records do not include any specific references to hallucinations. They do include times where staff noted Mrs D was vocal at night which we expect was due to these hallucinations. We note these entries were all after the date of the DST.
38. We cannot see any references within the records or DST that show these hallucinations were having a severe impact on Mrs D’s health or wellbeing. For example, staff noted she was vocal at times on the evening of 20 September 2018 but that she then appeared settled and they noted no other concerns at the time or in the days that followed.
39. Mr D/his advocate also said Mrs D did not engage in care planning, support and/or daily activities meaning the IRP should have given a weighting of High. They said she could only communicate by blinking her eyes and she had no ability to express her feelings, anxiety, or fear. They also said she was physically bedbound and contracted.
40. If individuals do not engage in care planning, support and/or daily activities due to their psychological and emotional state, the descriptors show this should lead to a weighting of High. For example, if an individual does not engage with staff or activities due to depression. We recognise the IRP did not specifically comment on this section of the descriptors.
41. Mr D and his advocate refer to Mrs D only being able to communicate through blinking and having no way to express her feelings, anxiety, and fear. These are things an MDT and IRP would consider under the Communication domain. We note both the MDT and IRP weighted Mrs D as High in the Communication domain as she was unable to effectively and reliably communicate her needs to staff.
42. It appears Mrs D’s communication needs affected her ability to engage in care planning support and/or daily activities as opposed to her psychological or emotional state. The MDT also commented that Mrs D became flatter in mood after staff started caring for her in bed and that she engaged less with staff. The use of the word less indicates there was still some engagement.
43. We can also see references throughout the nursing home records which suggest Mrs D did have some engagement in her care. For example, her Personal Cleansing and Dressing Plan says staff encouraged her to choose clothing and whether to visit the hairdresser and holistic therapist.
44. Overall, having carefully considered the information available, we cannot see any indications of maladministration in the IRP’s decision-making. The nursing home records do not appear to show Mrs D’s hallucinations were having a severe impact on her health or wellbeing. They also do not appear to show her psychological or emotional state had caused her to completely withdraw from care planning and/or daily activities. The IRP’s decision making appears to be in line with the National Framework.
Other significant care needs
45. In the DST, the MDT gave a weighting of High in this domain and said:
‘[Mr D’s advocate] would like it recorded within this domain that [Mrs D] fulfils the first, second and third steps of the Gold Standard Framework for End of life and would like it recording as “at least a high”.’
46. The IRP reduced the weighting in this domain to No needs. It said it did not think applying a framework in this domain was appropriate and the domain is for any particular needs that do not fall under the other domains. It also said the domain should not be used to inappropriately affect the overall eligibility decision.
47. Mr D’s advocate told us the IRP’s comments are incoherent and derogatory to the staff involved. They said Mrs D qualified for the first three steps of the Gold Standard Framework and the IRP simply discounted this domain. We recognise this shows how frail Mrs D was and that it must have been a very difficult time for Mr D.
48. The DST documentation says this domain is to be used where an individual may have particular needs which do not fall under the other care domains or cannot be adequately reflected in those domains. It also says it can be used when the space to describe each domain is insufficient to document all needs.
49. The first three steps of the Gold Standard Framework say:
Step 1: The Surprise Question
For patients with advanced disease or progressive life limiting conditions, would you be surprised if the patient were to die in the next year, months, weeks, days?
The answer to this question should be an intuitive one, pulling together a range of clinical, social and other factors that give a whole picture of deterioration. If you would not be surprised, then what measures might be taken to improve the patient’s quality of life now and in preparation for possible further decline?
Step 2: General indicators of decline and increasing needs?
· General physical decline, increasing dependence and need for support.
· Repeated unplanned hospital admissions.
· Advanced disease – unstable, deteriorating, complex symptom burden.
· Presence of significant multi-morbidities.
· Decreasing activity – function performance status declining (e.g. Barthel score), limited self-care, in bed or chair 50% of day and increasing dependence in most activities of daily living.
· Decreasing response to treatments, decreasing reversibility.
· Patient choice for no further active treatment and focus on quality of life.
· Progressive weight loss (>10%) in past six months.
· Sentinel Event e.g. serious fall, bereavement, transfer to nursing home.
· Serum albumin <25g/l.
· Considered eligible for DS1500 payment.
Step 3: Frailty, dementia, multi-morbidity
Frailty
For older people with complex and multiple comorbidities, the surprise question must triangulate with a tier of indicators, e.g. through Comprehensive Geriatric Assessment (CGA).
· Multiple morbidities.
· Deteriorating performance score.
· Weakness, weight loss, exhaustion.
· Slow Walking Speed – takes more than 5 seconds to walk 4m.
· TUGT – time to stand up from chair, walk 3m, turn and walk back.
· PRISMA – at least 3 of the following:
Aged over 85, male, any health problems that limit activity?, Do you need someone to help you on a regular basis?, Do you have health problems that cause/require you to stay at home?, In case of need, can you count on someone close to you?, Do you regularly use a stick, walker or wheelchair to get about?
Dementia
Identification of moderate/severe stage dementia using a validated staging tool e.g., Functional Assessment Staging has utility in identifying the final year of life in dementia. (BGS) Triggers to consider that indicate that someone is entering a later stage are:
· Unable to walk without assistance and
· Urinary and faecal incontinence and
· No consistently meaningful conversation and
· Unable to do Activities of Daily Living (ADL)
· Barthel score <3
· Plus any of the following:
Weight loss, urinary tract infection, severe pressure sores – stage three or four, recurrent fever, reduced oral intake, aspiration pneumonia.
Stroke
· Use of validated scale such as NIHSS recommended.
· Persistent vegetative, minimal conscious state or dense paralysis.
· Medical complications, or lack of improvement within 3 months of onset.
· Cognitive impairment/post-stroke dementia.
· Other factors e.g. old age, male, heart disease, stroke sub-type, hyperglycaemia, dementia, renal failure.
50. We cannot see how it would be in line with the National Framework to record the Gold Standard Framework under Other significant care needs. This is because it is a programme used to help healthcare professionals provide better and more organised care to people in the last 6 to 12 months of their lives. It also lists the type of needs MDTs and IRPs should consider under other domains and then together under the four key indicators.
51. For example, ‘Decreasing activity’ should be considered under Mobility. ‘Progressive weight loss’ should be considered under Nutrition. ‘Urinary and faecal incontinence’ should be considered under Continence. ‘No consistently meaningful conversation’ should be considered under Communication. Similarly, the progression of an individual’s condition and how their needs interact and affect them should be considered under the four key indicators.
52. Overall, having carefully considered the information available, we cannot see any indications of maladministration in the IRP’s decision-making. The IRP said the Gold Standard Framework does not fall under this domain and we have not seen any reason this was incorrect. The IRP’s decision-making appears to be in line with the National Framework.
The four key indicators – Nature
53. The IRP said Mrs D needed 24-hour supervision where she could be kept safe and supported in all her activities of daily living. It said she was cognitively impaired and unable to communicate her basic needs. It said there were no incidents of challenging behaviour at the time of the assessment. It said she was at risk of skin breakdown and needed support and help with all aspects of skin care and personal hygiene.
54. The IRP said she was doubly incontinent and needed support with all aspects of continence care and regular interventions to maintain her personal hygiene, skin integrity and dignity. It said she needed feeding by care staff to ensure adequate nutritional and fluid intake and staff to monitor her weight and nutritional status. It said there was no sign of any referral to a dietician or Speech and Language Therapy (SALT) at the time of the assessment.
55. The IRP said Mr D needed assistance from two members of staff for all transfers and staff to administer her medication. It said there was no evidence of any issues or concerns relating to her medication regime and no indication any pain was difficult to manage. It said staff monitored her health and liaised with her GP as needed.
56. The IRP noted a typical day for Mrs D. It said she needed the assistance of up to two members of staff to wash, change and maintain personal hygiene. It said she needed two staff members for transfers. It said she needed feeding by staff and assistance with drinking. It said she needed staff to monitor her skin integrity and apply creams as prescribed. It said she needed staff to administer medication, provide continence care and monitor her bowel pattern.
57. The IRP said Mrs D needed staff to monitor her behaviour and psychological/emotional presentation and provide support and reassurance as needed. It said she needed support with social interaction and activity. It said she needed support with communication and staff to anticipate her needs. It said she needed staff to monitor her health and wellbeing and liaise with her GP as needed.
58. The IRP said nearly all the interventions Mrs D needed were related to her activities of daily living and did not require staff with any particular skill or knowledge above what would be seen in a nursing home setting. It said Mrs D needed regular monitoring and care interventions but there were no situations needing care of a greater urgency.
59. The IRP said Mrs D’s overall needs were for accommodation and support with daily living and that she needed somewhere safe with staff experienced in supporting older people with severe cognitive impairment and the associated physical frailties. Overall, the IRP concluded the nature of Mrs D’s needs and the type of interventions required to meet those needs did not go beyond what a local authority could lawfully provide with the support of a GP and District Nursing, as needed.
60. According to the National Framework (paragraph 59), Nature:
‘describes the particular characteristics of an individual’s needs (which can include physical, mental health or psychological) and the type of those needs. This also describes the overall effect of those needs on the individual, including the type (quality) of interventions required to manage them.’
61. In relation to the IRP’s comment on there being no input from a dietician or SALT at the time of the assessment, they say Mrs D’s condition was beyond any active intervention. From looking at the nursing home records; the IRP are correct in saying there was no dietician/SALT involvement at the time of the assessment.
62. We can see there was involvement by a dietician/SALT before and after the DST. There is a note on 28 July 2018 saying Mrs D had been referred back to SALT as she was on a pureed diet. On 31 August 2018 it says she had been seen by a dietitian and SALT who provided some advice. On 10 October 2018 it says she had been reviewed by a dietician on 24 September 2018 where her weight was stable, and they suggested no changes. On 29 November 2018 it says she had been referred back to SALT for a review.
63. In relation to the IRP’s comment on Mrs D’s medication regime and there being no indication any pain was problematic to manage, Mr D/his advocate say this was used to downgrade the evidence of any characteristic. We note Mrs D was weighted as Moderate in the Drug Therapies and Medication domain and it was recorded most of her medications had been stopped due to non-compliance.
64. In relation to the IRP’s comment that Mrs D had health needs which were met by her GP as required, Mr D/his advocate say this is incorrect as the GP very rarely visited and all her needs were met by nursing and support staff. We think the IRP was clear that Mrs D’s care needs were met by care staff who would then consult with her GP as needed.
65. Mr D/his advocate say Mrs D needed oversight, care planning and monitoring by a registered nurse which could never had been provided under the legal threshold of a local authority as they are not permitted to deliver nursing care. We note the CCG found Mrs D eligible for Funded Nursing Care which is where a CCG pays a set amount each week towards care provided by registered nurses within a nursing home.
66. Mr D/his advocate said the IRP made no reference or consideration of Mrs D’s needs being well managed but not reduced or permanently removed. They say all her needs remained evident. We have considered how the well-managed needs principle was applied here.
67. The National Framework says:
142. The decision-making rationale should not marginalise a need just because it is successfully managed: well-managed needs are still needs. Only where the successful management of a healthcare need has permanently reduced or removed an ongoing need, such that the active management of this need is reduced or no longer required, will this have a bearing on NHS Continuing Healthcare eligibility.
68. We cannot see anything to indicate the IRP marginalised Mrs D’s needs. For example, the IRP noted Mrs D had no pressures sores but was at risk of skin breakdown and needed staff to provide support and assistance to prevent any issues from developing. They then took this into account when considering her overall eligibility for CHC.
69. Mr D/his advocate say the IRP made no reference or consideration of Mrs D’s needs deteriorating. We can see the IRP considered this under Complexity though we note the National Framework (section 3.3 of the Practice Guidance) suggests considering whether an individual’s condition is deteriorating or improving under Nature.
70. Mr D/his advocate say the IRP did not have access to the nursing home records and so question how it can say staff did not do anything more in caring for Mrs D. We note the IRP case file only contains two pages of nursing home records but there are 196 pages of records in a separate document. The IRP refers to the daily care notes so we can only assume it did have access to the nursing home records.
71. Mrs D/his advocate say the nature of Mrs D’s needs showed she had a primary health need. They say the IRP manipulated the facts and they firmly believe Mrs D was eligible for CHC under Nature and Complexity.
72. Mrs D was assessed as having 1 x Severe need, 3x High needs, 5x Moderate needs, 1x Low need and 2x No needs. The DST documentation says such cases may indicate a primary health need and should be considered carefully. We can see the IRP noted this within its report.
73. We understand Mrs D had several needs resulting from complex medical conditions. Having considered the IRP report, we cannot see any incorrect information within the IRP’s reasoning under Nature. From what we can see from the nursing home records, the interventions needed to meet Mrs D’s needs were relatively straightforward and could be delivered by care staff.
74. Overall, we have not seen anything to indicate any maladministration in the IRP’s decision-making under Nature. The IRP’s decision-making appears to be in line with the National Framework.
The four key indicators – Complexity
75. The IRP said the interventions Mrs D needed were not in themselves complex. It said there was no evidence she needed 24 hours access to more highly trained/skilled staff or that her daily needs required complex monitoring, observation, or intervention to minimise harm or reduce the risk of unnecessary deterioration.
76. The IRP said Mrs D was in a nursing bed showing some aspects of her care were overseen by a nurse who was also available to advise care staff should there be any concerns. It said the vast majority of the care interventions Mrs D needed were for support and assistance with activities of daily living. It said, in other words, the vast majority were for social care rather than nursing care.
77. The IRP said Mrs D needed regular and frequent care interventions, but these were not in themselves complex or required skill, knowledge or experience beyond that which would be expected of staff working in such as setting. Overall, the IRP said Mrs D’s needs were not complex.
78. According to the National Framework (paragraph 59), Complexity is:
‘concerned with how the needs present and interact to increase the skill required to monitor the symptoms, treat the condition(s) and/or manage the care. This may arise with a single condition, or it could include the presence of multiple conditions or the interaction between two or more conditions. It may also include situations where an individual’s response to their own condition has an impact on their overall needs, such as where a physical health need results in the individual developing a mental health need.’
79. Mrs D/his advocate say the complexity of Mrs D’s needs showed she had a primary health need. Mr D/his advocate say the IRP manipulated the facts and they firmly believe Mrs D was eligible for CHC under Nature and Complexity.
80. Mr D/his advocate did not set out how the IRP manipulated the evidence, so we considered the sorts of questions the practice guidance recommends MDTs and IRPs consider:
3.5 ‘Complexity’ is about the level of skill/knowledge required to address an individual need or the range of needs and the interface between two or more needs.
Questions that may help to consider this include:
• How difficult is it to manage the need(s)?
• How problematic is it to alleviate the needs and symptoms?
• Are the needs interrelated?
• Do they impact on each other to make the needs even more difficult to address?
• How much knowledge is required to address the need(s)?
• How much skill is required to address the need(s)?
• How does the individual’s response to their condition make it more difficult to provide appropriate support?
81. We can see the IRP considered these types of questions when reaching its conclusions about the complexity of Mrs D’s needs. For example, it considered how difficult it was to manage Mrs D’s needs and how much knowledge staff needed to provide the care she required to meet these needs.
82. We have considered the IRP’s report alongside the available evidence including Mr D’s complaint to us, the DST and nursing home records. We cannot see any incorrect information within the IRP’s reasoning under Complexity. From what we can see from the nursing home records, the combination of Mrs D’s needs was not so complex that staff needed extra skills or specialisms to meet them.
83. Overall, we have not seen anything to indicate any maladministration in the IRP’s decision-making under Complexity. The IRP’s decision-making appears to be in line with the National Framework. We hope we have clearly explained our reasons for this and that our consideration goes some way in bringing the matter to a close for Mr D.
Conduct of the IRP
84. Before we decide if we can formally investigate a complaint, we look to see whether the person has raised a complaint with the organisation concerned. If they have not, we are unlikely to consider their complaint any further.
85. Mr D complains about how the IRP behaved and conducted the review on 21 February 2020. It was clear from our discussion that this was very upsetting for him. Our review of the records shows Mr D has not yet raised these concerns with NHSE.
86. It is important NHSE has the opportunity to address Mr D’s concerns before we become involved. This is because organisations can often take appropriate action to resolve complaints at a local level. For this reason, we have decided not to consider this part of the complaint any further at this stage.
87. Mr D can bring this part of the complaint back to us if he is unhappy with NHSE’s complaint response. He would need to come back to us without any undue delay as there is a 12-month time limit on bringing a complaint to us.
88. We appreciate this was not the decision Mr D was hoping for. We hope we have clearly explained our reasons for this.