14. 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 found any indications that something went wrong when NHS England made its decision.
15. It is our role to decide whether NHS England’s IRP acted in line with the National Framework when it considered whether Mrs C was eligible for CHC. The National Framework sets out the principles and processes ICBs and NHS England should follow when considering if someone is eligible for CHC.
16. We cannot consider the discretionary decisions the IRP made when it decided on eligibility. This includes the decisions it makes based on clinical judgement and clinician’s opinions. We can only consider if the IRP has followed the National Framework. This means we can only uphold a complaint about a CHC eligibility decision if we find the IRP did not follow the National Framework when it made its decision.
17. The IRP reviews if the ICB should have found the person to have a primary health need and therefore be eligible for CHC. It also reviews the ICB’s procedures when it was coming to its eligibility decision to make sure it was acting in line with the National Framework. If the IRP does find the ICB made a mistake, it can: • recommend the ICB reconsiders if the patient had a primary health need, and • recommend the ICB addresses any procedural faults the IRP identified.
18. When we look at a complaint about an IRP, we consider if it took into account all the relevant information when it made its eligibility decision.
Domains
Skin
19. Mrs B has told us she disagrees with how the IRP considered the skin domain. She says her mother’s needs were high.
20. She says her mother’s skin continued to deteriorate despite intensive interventions. The redness and wound ultimately opened to the bone, required X-ray confirmation, and multiple antibiotic courses. This shows severity beyond the lower weighting applied. Her mother’s skin was vulnerable, and she continued to have various graded pressure sores amongst other skin issues. There was a specialised hand regime in place to ensure skin integrity, which was painful for her. The care home nurses also felt her mother’s skin needs were high.
21. The IRP agreed with the ICB and said Mr C’s skin needs were moderate.
22. The IRP discussed Mrs C’s skin (including tissue viability) needs against the descriptors and concluded that they matched the moderate level. She was at risk of skin breakdown which required preventative intervention several times each day.
23. A high level of need is described in the DST as:
‘Pressure damage or open wound(s), pressure ulcer(s) with ‘partial thickness skin loss involving epidermis and/or dermis’, which is not responding to treatment OR Pressure damage or open wound(s), pressure ulcer(s) with ‘full thickness skin loss involving damage or necrosis to subcutaneous tissue, but not extending to underlying bone, tendon or joint capsule’, which is/are responding to treatment.
OR Specialist dressing regime in place; responding to treatment’.
24. A moderate level of need is described in the DST as:
‘Risk of skin breakdown which requires preventative intervention several times each day without which skin integrity would break down.
OR Pressure damage or open wound(s), pressure ulcer(s) with ‘partial thickness skin loss involving epidermis and/or dermis’, which is responding to treatment.
OR An identified skin condition that requires a minimum of daily treatment, or daily monitoring/reassessment to ensure that it is responding to treatment’.
25. We can see the IRP had a detailed discussion about Mrs C’s skin needs. The panel asked the family to describe the help she needed. It weighed up their concerns about the support she needed when she had pressure sores, contractures and open wounds and whether this showed a higher weighting might be appropriate. Any concerns about Mrs C’s pressure areas were recorded and monitored.
26. We can see the IRP found that Mrs C had a very high Waterlow score (this determines risk of skin breakdown) and that she was at risk of developing difficulties with her skin integrity. They noted that she had been seen in hospital by the tissue viability nurse and that the advice was that Mrs C did not require specialist nursing input.
27. The panel noted that in hospital she was seen to have contractures of her hands and that this caused her fingernails to dig into the palms. She also had macerated skin in the folds of her hands (softening and whitening of the skin due to moisture). Advice was taken whilst she was in hospital and the treatment for this was carried on when she was admitted to the nursing home.
28. We can see the evidence shows there are no mentions of pressure ulcers. The notes document that Mrs C was nursed in bed and was turned at regular intervals during the day and night. The care staff gave her personal hygiene and skin care at each intervention, and it was recognised that Mrs C was vulnerable due to fragility of the skin, incontinence and lack of mobility.
29. The moderate descriptor captures that she had a risk of skin breakdown. So, the IRP acknowledged her skin was at risk, as Mrs B says. The evidence shows that Mrs C was nursed on a pressure relieving mattress. This is consistent with Mrs B’s own evidence from the discussions and the moderate descriptor. The IRP recognised that her contracted hands may require more attention so that her skin did not become macerated again.
30. There was no evidence to support that Mrs C’s wounds did not heal or that they were of the higher grades exposing underlying tissues and bone, at the time of the CHC assessment. There was no evidence of pressure damage, open wounds or specialist dressing regime for any infections. This is the information the IRP would have needed to see to give a high weighting.
31. We note Mrs B says the care home nurses who knew Mrs C well felt her mother’s skin needs were high. It is important to note that CHC funding is not based on a diagnosis, condition or opinion from a specialist worker, nurse or consultant. The totality of the needs and the effects of the interaction of needs should be carefully considered before deciding if someone has a primary heath need. We can see that while Mrs C needed help with her skin, her carers could plan for and usually manage this.
32. We can see no indications of a failing in how the IRP considered this domain. We think the IRP considered Mrs C’s skin needs in line with the DST guidance.
Mobility
33. Mrs B disagrees with how the IRP considered the mobility domain. She says her mother’s needs were severe.
34. She says her mother could not move unless a nurse moved her. She had to be positioned correctly to ensure best position to maintain range due to her contractures as confirmed by the occupational therapist. She had lost so much muscle tone and was incredibly frail, so she was at risk of dislocation of her shoulders.
35. She says her mother was totally immobile and before she went into hospital, she had frequent falls due to her delirium. The physiotherapist at the hospital expressed that she should be moved by two people and that a hoist should be used due to the high risk of dislocation if not done properly.
36. Mrs B says when the carers asked her mother if they could put her into her chair, she would either scream or refuse. Due to her non-compliance and pain, the carers were unable to move her. Her mobility needs had gone from normal to severe within a short period of time.
37. The IRP agreed with the ICB and said Mr C’s mobility needs were high.
38. The IRP concluded that her assessed levels of need matched the high descriptor as she was completely unable to weight bear and was unable to assist or co-operate with transfers and/or repositioning due to her contractures.
39. A severe level of need is described in the DST as:
‘Completely immobile and/or clinical condition such that, in either case, on movement or transfer there is a high risk of serious physical harm and where the positioning is critical’.
40. A high level of need is described in the DST as:
‘Completely unable to weight bear and is unable to assist or cooperate with transfers and/or repositioning.
OR Due to risk of physical harm or loss of muscle tone or pain on movement needs careful positioning and is unable to cooperate.
OR At a high risk of falls (as evidenced in a falls history and risk assessment).
OR Involuntary spasms or contractures placing the individual or others at risk.’
41. We can see the IRP discussed Mrs C’s mobility needs. The panel asked the family to describe the help she needed with her mobility. It weighed up their concerns about the support she needed when moving, the risk of harm on transfer and whether this showed a higher weighting might be appropriate.
42. The IRP acknowledged Mrs C was immobile and nursed in bed for most of the time. It also found that on some days she was able to sit out in a recliner chair for several hours. It identified that she required a hoist, sling and two carers for all transfers and that slide sheets, and two care staff were required for repositioning.
43. The IRP recognised that it may have been uncomfortable and a little distressing for Mrs C to be in the hoist and that she would cry out. However further evidence showed that her Abbey Pain score (a tool to support the interpretation of pain in patients who are unable to communicate their pain) was 0, indicating no pain.
44. The panel further noted that her rehabilitation team at the hospital had described her contractures as fixed and established and that they would not improve.
45. The IRP acknowledged Mrs C’s immobility and lack of ability to assist in transfers. She required a high level of assistance with her mobility needs, careful positioning and had contractures. This is consistent with Mrs B’s own evidence from the discussions and the high descriptor.
46. Mrs C had no recorded falls at the care home. She did not require critical positioning that could have been life threatening if carried out incorrectly. There were no specialist positioning recommendations, and she was not at risk of serious harm on movement and/or transfer. This is the information the IRP would have needed to see to give a severe weighting.
47. We can see no indications of a failing in how the IRP considered this domain. We think the IRP considered Mrs C’s mobility needs in line with the DST guidance.
Communication
48. Mrs B disagrees with how the IRP considered the communication domain. She says her mother’s needs were high.
49. She could not initiate conversation and her yes/no response was unreliable. She went through phases of screaming. She was unable to communicate as she was hypo delirious and struggled to speak. She was lucid on some days and on other days, she would scream. It could be hard to understand what she was saying as her words were often broken or back to front or random; at other times, she was able to communicate her basic needs.
50. She had to explain to care staff what her mother was trying to say. The family would stay with her until she went to sleep so that they were able to communicate her needs for her. Her mother was unable to use the call bell to alert the care staff.
51. The IRP agreed with the ICB and said her mother’s communication needs were moderate.
52. The IRP concluded that her assessed care level matched the moderate descriptor as she was sometimes able to reliable communicate and on other times was assisted by carers who were able to anticipate her needs.
53. A high level of need is described in the DST as:
‘Unable to reliably communicate their needs at any time and in any way, even when all practicable steps to assist them have been taken. The individual has to have most of their needs anticipated because of their inability to communicate them.’
54. A moderate level of need is described in the DST as:
‘Communication about needs is difficult to understand or interpret or the individual is sometimes unable to reliably communicate, even when assisted. Carers or care workers may be able to anticipate needs through non-verbal signs due to familiarity with the individual.’
55. We can see from the notes of the meeting that the IRP had a good discussion about Mrs C’s communication needs. The panel asked the family to describe the help she needed to communicate. It weighed up their concerns about understanding what she was trying to say to whether this showed a higher weighting might be appropriate.
56. The IRP recognised that Mrs C had difficulty in making her needs known when she was experiencing delirium and infection. It acknowledged that the family must have found it very difficult to witness this.
57. It noted that Mrs C could answer yes/no questions but was not always reliable in her answer and that she could communicate in short sentences but would not initiate or hold a conversation.
58. The IRP said that the care staff who were very familiar with Mrs C could anticipate her care needs because they knew her well. They identified that there were occasions when Mrs C could communicate her needs, but that careful interpretation was required. This is consistent with Mrs B’s own evidence from the discussions and the DST descriptor for moderate needs.
59. There was no indication that she was unable to reliably communicate her needs at any time and in any way, even when assisted. This is the information the IRP would have needed to see to give a moderate weighting.
60. We can see no indications of a failing in how the IRP considered this domain. We think the IRP considered Mrs C’s communication needs in line with the DST guidance.
Key characteristics
61. The IRP applies an eligibility test to help it make a decision about a person’s CHC eligibility. This is called the four key characteristics – the nature, intensity, complexity and unpredictability of their needs. This test is used to establish if the quantity or type of a person’s care needs are more than what the local authority can provide. This indicates they have a primary health need, which in turn indicates they are eligible for CHC.
62. The National Framework sets out questions for the IRP to consider helping establish a person’s level of need. They are outlined in Practice Guidance 3 ‘When identifying a primary health need, how should the four key characteristics be approached?’ (PG3). The National Framework is clear the questions it provides are not meant to be strictly applied and are there to guide the IRP’s considerations. We use these questions when we are looking at whether the IRP properly considered the key characteristics of a person’s needs.
63. Mrs B has told us she disagrees with the IRP’s consideration of the four key characteristics.
Nature
64. Mrs B says that her family’s input was the main reason her mother survived in the care home, as she was not eating or drinking enough due to ongoing delirium. Staff could only encourage intake and were unable to provide sustained 1:1 support. The family delivered essential additional care, including feeding, hydration, engagement, and quality-of-life support.
65. She had complex, interrelated needs involving nutrition, skin integrity, continence, bowel management, and psychological distress. Weight loss persisted despite supplements, and recurrent infections (pressure sores, infected boil, chronic oral fungal infection) required repeated antibiotics. Specialist input, including tissue viability support, was needed for skin care.
66. Her persistent screaming had severe consequences. Prolonged episodes caused extreme fatigue and drowsiness, leading to urinary tract infections (UTIs), further weight loss, and worsening skin integrity. An external professional witnessed this cycle. The distress appeared multifactorial, including pain, anxiety, bowel discomfort, itching, and communication difficulties, leaving her in near-constant fear and agitation.
67. Her distress and continence issues also caused resistance to sitting out, negatively affecting posture, contractures, and respiratory health. Although a GP advised increased chair time to support respiratory function and limit contractures, this was often only achieved with significant family intervention. Overall, her non-compliance and persistent distress impacted multiple care domains and continued to compromise her health.
68. The National Framework says nature should ‘describe the particular characteristics of an individual’s needs (which can include physical, mental health or psychological needs) and the overall effect of those needs on the individual, including the type (‘quality’) of interventions required to manage them.’
69. The nature section of the IRP report gives a detailed explanation of Mrs C’s needs and considered the way in which those needs were met. It acknowledged she had a number of medical conditions such as Parkinson’s disease with cognitive impairment which impacted her day-to-day care needs. She was dependent on her family and carers and needed support with activities of daily living within the care home.
70. We can see the IRP presented a clear picture of how Mrs C’s needs were met. They described the nature of her condition. The report sets out a consideration of the types of care Mrs C needed across each of the care domains to keep her safe and well. It noted these were routine interventions, including mincing and feeding her small amounts of food, regularly changing her pads, applying barrier cream, a full body hoist and sling for transfers, sheets to safely turn her in bed and Butec patches for pain management. There was no risk of harm to others around daily care interventions. Her care needs were met with care support.
71. We looked at the levels of training Mrs C’s carers needed. They were knowledgeable and well-trained in older person’s care for physical and mental health needs. We know Mrs C needed support because of his significant diagnoses. Care staff, along with her family’s oversight of care, which she benefitted greatly from, would monitor her needs. There was access to her GP, district nursing service and specialist hospital-based services if needed.
72. Mrs B feels the range, interaction and frequency of her mother’s needs and the frequency of her need for assistance required knowledgeable and skilled carers, without which she could not cope. We can see the evidence supports the IRP’s conclusion. They show Mrs C did need care to ensure her needs were met. But it was routine interventions that did not take a long time to complete.
73. We think the IRP weighed up the things the National Framework PG3 says it should. It is very clear Mrs C needed a lot of care with daily living activities, as Mrs B says. But we cannot see that those caring for her needed any specific knowledge, skill or training beyond that which a local authority carer could provide. Although she had variable needs including very fragile skin and episodes of screaming, her care interventions could be planned and were not unusual. It is not clear how frequently she would scream in the care notes, but this did not stop care staff from giving her care.
74. She was able to sit out in her recliner chair in the communal lounge. She did not experience multiple infections and did not require hospital admission. She had no falls. She had some challenging behaviours but did not require specialist intervention from the mental health or challenging behaviour team. Her care needs could be carried out within structured care plans overseen by the registered nurses on duty.
75. We think the IRP’s decision about the nature of Mrs C’s needs was in line with the guidance set out in the National Framework.
Intensity
76. Mrs B states that despite frequent care plan reviews and intensive input, staff were unable to fully manage her mother’s deteriorating skin and wound needs. Her hand and skin care regimes became increasingly intensive, yet she continued to develop pressure sores. This included a stage 4 ulcer to the bone that required six months of specialist nursing care, antibiotics, an X-ray, and prolonged dressing management. The area remained vulnerable to recurrence, and bandage care was difficult due to the significant pain it caused.
77. She says her mother was completely dependent and that without the family providing six to ten hours of additional daily care, she would not have survived. Her needs were non-routine, highly intense and constantly changing. Her skin monitoring and hand care needed registered nursing oversight.
78. Her bowel management required careful laxative adjustments. Constipation often worsened her confusion, reduced communication, and intensified prolonged screaming episodes. This was exhausting for staff and family and distressing for her. Overall, her interconnected physical and psychological needs made her care extremely challenging to manage.
79. The National Framework says this characteristic ‘relates both to the extent (‘quantity’) and severity (‘degree’) of the needs and to the support required to meet them, including the need for sustained/ongoing care (‘continuity’). It sets out that assessors should look at how severe a person’s needs are, how often an intervention is needed and how long it takes, how many carers are needed, and whether the care is across over several domains.
80. The IRP report shows there was a discussion about the intensity of Mrs C’s needs. It asked the family to set out the domains where her needs were greatest and that the combination of these required consistent care throughout a 24-hour period. It set out that she needed help with her hallucinations, catheter and open wound.
81. Mrs C also needed support with her nutrition (fortified diet) and prescribed medication doses. She was monitored when she had contractures which required hand splints. She was generally compliant with care interventions from carers.
82. There were no barriers to providing the care. Her support and interventions were managed successfully, with oversight from the GP and district nurses when needed.
83. The evidence shows the IRP acknowledged she needed supervision and monitoring with her general health and daily activities. It noted Mrs C’s care could be delivered with no increase of frequency of support. She needed care 24 hours a day, as Mrs B says, but this alone does not indicate a primary health need. At different times of the day, she needed more or less help.
84. The IRP recognised she had a level of need in many of the care domains. We note it concluded the levels of care required in these domains were what local authority carers could be expected to provide and were not intense enough to determine a primary health need. There is no indication that the majority of her interventions took a long time. They were straightforward to meet with support from family members and care staff within the nursing home.
85. We think the IRP’s decision about the intensity of Mrs C’s needs was in line with the guidance set out in the National Framework.
Complexity
86. Mrs B states that her mother’s bowel management was clinically complex, as confirmed by the Parkinson’s nurse. Periods of minimal or no bowel movements followed by PRN (as needed) laxatives caused discomfort, cognitive decline, and increased screaming. When bowel movements were more regular and moderate, her screaming reduced and cognition improved, demonstrating a clear link between continence and behavioural distress.
87. She says that while individual conditions may not have appeared at the highest level of clinical complexity, their management was extremely complex. Her immobility and limited communication were closely linked to her psychological wellbeing, affecting nutrition and intake. Hallucinations caused significant distress but were difficult to treat due to Parkinson’s disease, medication sensitivity, delirium risk, and her vulnerable brain. The occupational therapist confirmed that moving and handling were high risk if not performed correctly.
88. Her mobility and medication management were highly sensitive to change. Skin care required specialist intervention from tissue viability nurses for multiple pressure sores (stages 1–4), representing non-routine, specialist care. Overall, her bowel regime affected her cognition, emotional state, eating and drinking, skin integrity and wound healing. This demonstrated the interconnected and complex nature of her needs.
89. The National Framework says this characteristic 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.’ It sets out that assessors should think about how difficult it is to manage the need and alleviate the symptoms, how the needs impact on each other, how much knowledge and skill is needed, and whether the person’s response makes it difficult to provide support.
90. The IRP report shows the panel discussed the complexity of Mrs C’s needs. It noted her care for her physical frailties was not difficult to deliver. It recognised her level of cognition was linked to her behaviour, communication, mobility, skin, continence, nutrition and psychological and emotional needs. The interactions Mrs B raised impacted Mrs C’s behaviour and appetite. She needed distraction, reassurance and de-escalation when she was distressed and agitated at times. Carers would leave her to calm down and return. This did not become difficult or need adjusting on a regular basis. It noted she needed monitoring of her skin integrity. She had limited fluid intake, but this was not problematic. She was prescribed additional supplementary drinks and placed on level 1 fluid to prevent further weight loss.
91. The IRP thought about the knowledge and skill needed to care for Mrs C. Carers and her family anticipated her needs through familiarity and understanding of her care. It thought about whether the needs combined to create complexity and set out why it thought they did not. It acknowledged the family interventions and support. They gave her many hours of company and discussed her care with the nursing home staff and others. The IRP noted the family, together with the professional skills and knowledge of the care staff, made Mrs C’s life more comfortable.
92. We think IRP considered the factors PG3 says it should. It saw Mrs C’s care interventions were not difficult to manage and did not need specific skill or knowledge beyond that which a well-trained carer would have. There were no interactions or difficulties with Mrs C’s response that meant it was more complex to provide her care. Her needs were not difficult to plan or provide for. She did not require regular, intensive input from a specialist team.
93. We think the IRP’s decision about the complexity of Mrs C’s needs was in line with the guidance set out in the National Framework.
Unpredictability
94. Mrs B says the family spent time working alongside the care staff and nurses to prolong their mother’s life and improve her quality of life. Her diet and malnutrition was extremely challenging and her feeding regime was not predictable. The family had to consistently try different methods to get her to take on any nutrition. Her weight had declined since admission to the nursing home and remained extremely low with a body mass index (BMI) of only 13. Her Parkinson’s disease and Parkinson’s dementia remained unpredictable.
95. Mrs B says her mother’s communication and mental state also remained unpredictable. Her skin had deteriorated and required specialist tissue viability nurse intervention, so it was no longer standard and routine care and predictable. Her rapid deterioration was multi-faceted and covered numerous areas. The knock on effect of this made her treatment and care by nature unpredictable.
96. The National Framework defines unpredictability as ‘the degree to which needs fluctuate and thereby create challenges in managing them. It also relates to the level of risk to the person’s health if adequate and timely care is not provided. An individual with an unpredictable healthcare need is likely to have either a fluctuating, unstable or rapidly deteriorating condition.’
97. The National Framework says an assessor should think about whether it is possible to anticipate the person’s needs, whether the needs or support change at short notice, if the person’s condition is stable, what level of knowledge or skill is needed for a spontaneous response, and what would happen if the need was not met.
98. The IRP report shows the panel considered the unpredictability of Mrs C’s needs. It noted that her needs were stable during the period. She suffered from hallucinations, delirium and anxiety. She responded well to reassurance from care staff on most occasions. Carers were familiar with the trigger points that would upset her. It would not provide a barrier to care delivery. They knew what to expect and the appropriate actions to respond. There was no difficulty in meeting those needs.
99. The IRP noted Mrs C required regular observation, but her health needs did not fluctuate and did not present a high level of risk. Her care interventions including the administration of medication (Butec patches and paracetamol) were routine. There was no rapid deterioration or sudden change in the level or type of support Mrs C required. She did not need unplanned district nursing visits due to unexpected changes in need. These are key pieces of evidence in this characteristic. If a person had unpredictable needs, we would expect to see frequently changing care plans, or the family or carers having to act outside of the care plans to meet those needs.
100. We can see she did not require constant 1:1 supervision, nor did she require the completion of behaviour charts. There was no safeguarding alerts raised. She did not have frequent emergency interventions.
101. We think the IRP’s decision about the unpredictability of Mrs C’s needs was in line with the guidance set out in the National Framework.
Conclusion
102. We know there was a dispute between the nurses at the care home and MDT about Mrs C’s level of needs which Mrs B felt the ICB did not consider. We can see the IRP took this into consideration and recommended that: • the MDT is quorate and in line with relevant regulations and guidance • the family’s feedback is considered and included in all appropriate documentation • all parties to the MDT give their feedback on the DST in an appropriate timeframe before any decision is ratified.
103. We note the IRP did a fresh review providing Mrs B with another opportunity to give her views and supporting documents including the nurse’s comments. This put the ICB’s procedural mistakes right.
104. Our decision does not take away from the account Mrs B has given us, or the challenges Mrs C faced. We appreciate she was reliant on the care she received at the home. The IRP’s conclusion that her care did not indicate a primary health need and fell within the remit of the local authority appears to be in line with the National Framework.