5. Mrs A complains about NHSE’s IRP. On 30 June 2020, the IRP upheld Dorset CCG’s decision her mother, Mrs E, was ineligible for CHC.
6. Mrs A says her mother was unfairly denied CHC funding because of the claimed failings.
7. As an outcome of her complaint, Mrs A would like the IRP to review its eligibility decision after considering all the information provided to it, in line with the National Framework.
8. Mrs E suffered a fall and was admitted to hospital, where there was a noticeable deterioration in her health and well-being. She was then discharged to a care home, as she was no longer able to look after herself.
9. Dorset CCG received a negative CHC checklist from the hospital on 16 November 2016. After Mrs E’s admittance to the care home on 29 August 2017, a funded nursing care (FNC) assessment took place on 26 January 2018, along with a CHC checklist which was positive. She was assessed as eligible for FNC at that time.
10. A Decision Support Tool (DST) was completed on 5 July 2018 and the multidisciplinary team’s (MDT) recommendation was Mrs E was not eligible for CHC. A DST is a tool used to collate and record an individual’s health needs to help with a CHC eligibility decision.
11. Mrs A asked for a review of the decision on 20 January 2019, and on 15 March 2019, a local resolution meeting (LRM) took place. A CCG CHC panel took place on 23 May 2019 to review the MDT’s and CCG’s ineligibility decisions. It upheld the recommendation Mrs E was not eligible for CHC.
12. Lastly, Mrs A requested an independent NHSE review of this decision.
15. For reference, CHC describes care provided over an extended period to meet physical or mental health needs that result from disability, accident or illness. If someone meets the criteria to receive CHC funding, their care will be funded by the NHS.
16. The purpose of the IRP is to review the procedures the CCG followed to decide about a person’s eligibility for CHC. In reaching a view about whether the CCG followed the correct process and whether it correctly applied the eligibility criteria, the IRP can recommend the case be reconsidered by the CCG, addressing any faults identified in the process, or it can reach a view on whether the individual should be considered to have a primary health need.
17. Whether an individual is eligible for CHC is a discretionary decision. It is our role to decide whether the IRP made its decisions in line with the National Framework. We consider whether it took account of all the relevant information provided to it in reaching its decision.
18. We cannot question discretionary decisions when they have been made without maladministration (fault) and we can only uphold a complaint about an eligibility decision if there is some specific fault in the way the IRP reached its decision. Such decisions are based on clinical judgements and opinions. The fact someone else has a different opinion does not mean there must have been a fault in the decision-making process.
19. To help us reach a robust decision, we look at whether the IRP considered all the relevant information when determining CHC eligibility. To allow us to do this, there are four key areas we consider. We will explain each one in turn.
Did the IRP establish all the appropriate and relevant clinical facts?
20. Paragraph 199 of the National Framework says, ‘The key elements involved in considering requests for independent reviews of CHC eligibility include: scrutiny of all available and appropriate evidence.’
21. We have reviewed all the information provided by NHSE, which includes the IRP report and the IRP file, including the relevant clinical and care documents. We have also reviewed the information Mrs A provided.
22. Based on the information from NHSE, we can see the IRP considered:
• summaries of Mrs A’s case, along with completed pro-forma records, and evidence Mrs A provided during the IRP • the CCG’s records, including the checklist, the DST, the Needs Portrayal Document (NPD), LRM letters and minutes and appeal records • relevant clinical records such as GP, social services and hospital notes.
23. We also have a copy of the IRP’s report. The report documents the submissions Mrs A gave in person.
24. It is clear the IRP had access to all the information the CCG used to make its decision. The IRP gave Mrs A an opportunity to provide verbal evidence during the meeting and it had access to her written submissions. The IRP also received all the relevant records from the CCG showing Mrs E’s needs during the review period. This is well evidenced throughout the report.
25. We can see there are no obvious omissions in the documents and evidence NHSE gathered. We are satisfied there is no sign of a failing in how the IRP established all the appropriate and relevant clinical facts. The IRP had access to information clearly detailing Mrs E’s needs throughout the review period.
Before it made its decision, did the IRP consider all the relevant evidence?
26. The IRP report and notes show the IRP worked through and discussed in detail each of the care domains in turn with Mrs E’s family. It listened to their submissions for each domain, asked additional questions and gathered their opinions. It also had the written appeal documents from Mrs A.
27. For reference, 12 care domains make up the DST stage of the assessment for CHC. The IRP makes an assessment against each domain and awards a level of need depending on the issues present.
28. We can see Mrs A disputed certain domains, which we will cover in more detail below.
29. The IRP recorded the clinical reasons for why it had chosen the domain weightings. Throughout the report and in the IRP’s considerations, it refers to the available evidence from the IRP file.
30. The IRP report also shows the panel had a clinically led discussion of the key clinical facts. The report shows how the IRP considered the evidence during its decision-making process. We have seen no evidence to suggest any facts were overlooked, marginalised or inadequately considered during the IRP process.
31. The IRP explained the evidence it used to inform its decision-making. The IRP explained the reasons for its views on the levels of need for each of the domains. For this reason, we have seen no signs of failings in this part of the IRP’s process.
32. We do not wish to detract from Mrs A’s account or her view of her mother’s needs and what was needed to manage them.
33. Paragraph 199 of the National Framework is also relevant to this part of the IRP’s considerations, and we think it acted in line with this.
Did the IRP clearly explain how it had reached its decision?
34. Mrs A has told us she disagreed with how the IRP considered three of the care domains. We will address these in turn.
Drug therapies and medication: symptom control
35. Mrs A considered her mother’s needs in this domain severe. Both the CCG and the IRP scored this domain as high.
36. The DST defines severe needs in this domain as:
‘Requires administration and monitoring of medication regime by a registered nurse, carer or care worker specifically trained for this task because there are risks associated with the potential fluctuation of the medical condition or mental state, or risks regarding the effectiveness of the medication or the potential nature or severity of side effects. Even with such monitoring the condition is usually problematic to manage.
OR
Severe recurrent or constant pain which is not responding to treatment. OR Non-compliance with medication, placing them at severe risk of relapse’
37. Mrs A says the IRP did not consider that some of Mrs E’s medication and GP notes were missing. She also says the IRP disregarded the fact the DST originally felt this domain was severe, the fact the care home was reluctant to administer oxycodone (a painkiller) and the two episodes of opiate toxicity (when you have too much of a drug) that Mrs E had experienced.
38. Lastly, Mrs A says the IRP relied upon pain charts that may have been incomplete and did not consider the notes showing she was in pain.
39. The IRP considered Mrs E’s needs in this domain were high. The DST defines high needs in this domain as:
‘Requires administration and monitoring of medication regime by a registered nurse, carer or care worker specifically trained for the task because there are risks associated with the potential fluctuation of the medical condition or mental state, or risks regarding the effectiveness of the medication or the potential nature or severity of side effects. However, with such monitoring the condition is usually non-problematic to manage.
OR
Moderate pain or other symptoms which is/are having a significant effect on other domains or on the provision of care.’
40. We can see the IRP had a detailed discussion about this domain. The IRP listened to Mrs A explain in detail her observations on Mrs E’s drug and pain management control.
41. The IRP recognised Mrs E was on a lot of medication. It also noted Mrs A’s concerns about oxycodone, which were on Mrs E’s medication administration record (MAR) charts, but it was not clear how often this medication was given to Mrs E as some of the MAR charts were incomplete.
42. The IRP accepted Mrs E’s symptoms and pain required monitoring and the impact this had on her.
43. We think the IRP acted in line with the National Framework when it considered Mrs E’s needs in this domain. The report accepts Mrs E’s medication required monitoring and administration by a registered nurse. This is consistent with the material evidence from the discussions and the DST descriptor of high needs. Mrs E did also experience pain that could affect other domains.
44. The report explains why the IRP did not think her needs were in line with the severe weighting. One key reason was that while Mrs E’s medical conditions and medication required a great deal of monitoring, it was not problematic to manage.
45. The report shows how the IRP weighed this up against what the descriptors say. It recognised Mrs E needed to be given the medication because she would not take it herself.
46. There is no evidence that shows Mrs E was not responsive to her treatment for any pain she was in or her medical regime was problematic to manage, putting Mrs E at risk. This is what the IRP would have needed to see to give a higher weighting.
47. We can see no signs of a failing in how the IRP considered this domain.
Nutrition
48. Mrs A feels the nutrition domain should be scored as high. The DST sets this out as:
‘Dysphagia requiring skilled intervention to ensure adequate nutrition/hydration and minimise the risk of choking and aspiration to maintain airway.
OR
Subcutaneous fluids [giving fluids into the space under the skin] that are managed by the individual or specifically trained carers or care workers.
OR
Nutritional status “at risk” and may be associated with unintended, significant weight loss. OR Significant weight loss or gain due to identified eating disorder.
OR
Problems relating to a feeding device (for example PEG [percutaneous endoscopic gastronomy, a procedure where a flexible feeding tube is put directly into the stomach]) that required skilled assessment and review.’
49. Mrs A says the IRP has not considered the risk of unintentional weight loss. She says the IRP reported Mrs E was not at risk of malnutrition, which was associated with unintended, significant weight loss. However, the IRP accepts Mrs E unintentionally lost 4kg in one month before the DST, and the Malnutrition Universal Screening Tool (MUST) score shows Mrs E had two records of high and seven of moderate risk of malnutrition.
50. The IRP considered Mrs E’s needs in this domain consistent with the DST’s low definition. The DST says this means:
‘Needs supervision, prompting with meals, or may need feeding and/or a special diet (for example to manage food intolerances/allergies).
OR
Able to take food and drink by mouth but requires additional/supplementary feeding.’
51. Again, the report shows the IRP had a detailed discussion about Mrs E’s needs. It shows Mrs A explained her views on her mother’s nutrition, as detailed above. The IRP weighed up what Mrs A had said and considered whether a higher weighting was appropriate.
52. The panel accepted Mrs E’s weight loss, but the records show her body mass index then increased again to the same as before the weight loss. It noted Mrs E did need supervision and prompting with meals and a soft diet and sometimes required supplementary feeding.
53. We think the IRP followed the National Framework when it considered this domain. The difference between the low and high descriptors in this domain are dysphagia (swallowing problems) requiring skilled intervention, the need for subcutaneous fluids, ‘at risk’ nutritional status, weight loss/gain due to an eating disorder or problems with a feeding device.
54. The available records show Mrs E did not identify with any of the points in the high descriptor. She did have weight loss but not to an extent that would put her ‘at risk’.
55. The report clearly explains why the IRP decided on the low descriptor based on the evidence including Mrs A’s account. We can see no signs of a failing in how the IRP considered this domain.
Continence
56. Mrs A says the continence domain should be scored as high. The DST describes this level as when: ‘continence care is problematic and requires timely and skilled intervention, beyond routine care (for example frequent bladder wash outs/irrigation, manual evacuations, frequent re-catheterisation)’.
57. She says the risks associated with constipation and Mrs E’s stoma failing were huge and this needed oversight by skilled nurses, which has not been considered. Mrs E’s constipation also had to be constantly monitored due to the risk of blockages and the impact of increased laxatives. They believe this was beyond routine care.
58. The IRP considered Mrs E’s needs in this domain were consistent with the DST’s moderate definition. The DST says this means: ‘continence care is routine but requires monitoring to minimise risks, for example those associated with urinary catheters, double incontinence, chronic urinary tract infections and/or the management of constipation or other bowel problems.’
59. The IRP report shows a detailed discussion of Mrs E’s needs at the IRP meeting. Mrs A gave an account of her needs and the IRP weighed up whether this indicated a higher weighting.
60. The IRP noted Mrs E had a hernia, which potentially put pressure on her bladder, giving her the constant feeling of needing the toilet. Mrs E also had a stoma and a history of urinary tract infections and needed monitoring for constipation.
61. We think the IRP acted in line with the National Framework when it considered Mrs E’s continence needs. We accept Mrs A feels Mrs E needed more than standard care and thinks the IRP did not adequately consider the risks associated with Mrs E’s constipation, hernia and stoma.
62. The DST defines a high level of need in the continence domain as continence care that is beyond routine care. We can see Mrs E needed a lot of continence care, but she did not need bladder washouts or manual evacuation, which feature in the high descriptor.
63. The level of care Mrs E needed was routine for the carers, with no need for specialist outside intervention. However, she did need constant monitoring to minimise risks, which is in line with the moderate descriptor.
64. We can see no sign of failings in how the IRP considered this domain.
Did the IRP apply the eligibility tests properly and reach an evidence-based conclusion about them?
65. The IRP also applies an eligibility test to help it make a decision about a person’s CHC eligibility. The National Framework separates this test into four key characteristics: nature, intensity, complexity and unpredictability. This test is used to establish whether 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.
66. The National Framework sets out questions for the IRP to consider to help 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?’. 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 considered the four key characteristics of Mrs E’s needs properly.
67. We have considered whether the IRP’s decisions and rationale about the four key characteristics were accurate. We will consider each one in turn.
Nature
68. We can see Mrs A gave her view on each key characteristic directly to the IRP and her views are recorded in the IRP’s report.
69. We can see the IRP considered the nature of Mrs E’s needs at a level of detail we would expect to see. The IRP focused on Mrs E’s individual needs rather than her diagnosed medical conditions. It commented on her needs in each domain. It discussed the impact of her needs on her health and well-being, establishing she needed to be looked after in a safe environment with the oversight of trained carers and a registered nurse.
70. The IRP also looked at the types of care Mrs E needed to keep herself safe and well. The report sets this out in detail. It includes points such as needing encouragement to eat and drink, managing her medication, safe transfers and stoma care and management.
71. The IRP accepted Mrs E’s clinical needs, including practical support. It weighed up all the available evidence before it concluded the nature of her needs was within the remit of what the local authority could provide.
72. We think the IRP acted in line with the guidance set out in the National Framework when it considered the nature of Mrs E’s needs.
Intensity
73. 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”)’.
74. The family said whilst there was no ongoing one-to-one nursing care there was complexity associated with Mrs E’s care over a 24-hour period.
75. Mrs E needed frequent checks and she was often distressed when her family arrived. She would also barricade herself in her room and could fall.
76. Lastly, the family said the staff constantly had to check Mrs E’s mental state.
77. The IRP’s report shows a detailed discussion about the intensity of Mrs E’s needs. It accepted most of her needs were anticipated, particularly at times of heightened confusion or agitation. She could say she was in pain or didn’t want to do something.
78. She was able to move around with a frame and one carer and needed two carers to help with transfers. The IRP discussed her continence needs, how much input she needed from the carers to manage these and how her stoma and hernia impacted other care domains.
79. Mrs E needed the care home staff to oversee and adjust her medication accordingly and to monitor her pain. It said if Mrs E refused her medication or other activities staff would use the retreat and return approach.
80. The IRP considered the amount of time needed to provide the care, how much planning was involved and how many carers were needed.
81. The IRP recognised Mrs E had a level of need in most of the DST’s care domains. It weighed up all the evidence before it concluded the levels of care and monitoring required in these domains were not severe enough to determine a primary health need.
82. We think the IRP acted in line with the National Framework when it considered the intensity of Mrs E’s needs.
Complexity
83. The IRP carefully considered the complexity of Mrs E’s level of need. The National Framework says, ‘this 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.’
84. Mrs A told the IRP Mrs E’s needs were complex as she had a range of multiple and individual needs, which were covered in the domains. She said it was impossible to talk about one domain without referring to another.
85. Mrs A explained that, for example, Mrs E’s osteoporosis, renal issues, drugs, pain, food, and fluids, taking enemas, fractures, confusion and falls risk all interacted.
86. The report shows us the IRP considered how difficult it was for the carers to manage Mrs E’s needs and it established the care was not complex to deliver and no specialist skill or knowledge was needed to meet Mrs E’s needs.
87. The IRP report shows how the IRP considered the interaction of various combinations of Mrs E’s needs. It specifically discussed the interaction between Mrs E’s cognition and how this affected all her needs. It clarified Mrs E’s needs did have to be anticipated.
88. It set out how the carers managed these in line with the care plans. It said they very rarely changed Mrs E’s care plans and reviewed them routinely.
90. A registered nurse oversaw Mrs E’s medication under a GP’s supervision. Clinical judgement was needed in the administration of the medication but this was not considered complicated.
91. The IRP concluded there was no increase in the level of skill or time needed to care for Mrs E and meet her needs. Staff did not require extra training, skills or knowledge other than those routinely expected of nursing home staff.
92. We can see the IRP weighed up all the evidence before it decided this key indicator did not indicate a primary health need for Mrs E. It set out why it thought the level of skill needed to manage the interaction of her needs was not complex and none of the interactions posed a significant barrier to the carers looking after her.
93. We think the IRP acted in line with the National Framework when it considered the complexity of Mrs E’s needs.
Unpredictability
94. The final key characteristic of a person’s level of need is unpredictability. The National Framework defines it 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.’
95. Mrs A said the CCG kept its description very brief in this domain and considered Mrs E’s needs were predictable and adequately monitored. She said Mrs E’s hospital admission was not predictable and nor was the risk of obstructions.
96. Mrs A told the IRP Mrs E’s needs were predictably unpredictable. She said the CCG’s view Mrs E’s needs were manageable in a nursing home was not right, and much of Mrs E’s care was not in the remit of a nursing home.
97. The report accepts Mrs E did not have rapidly changing needs and care plans did not need to allow for fluctuating or unpredictable levels of need. It said there was no evidence of rapid deterioration.
98. The IRP say carers knew how to plan and care for Mrs E, including that she sometimes refused medication. As a result, and they would use planned measures to manage this.
99. The IRP referred to Mrs E’s care plans, noting they did not need to allow for fluctuation or unpredictability. This key piece of evidence showed the IRP Mrs E’s needs were predictable and stable.
100. We think the IRP acted in line with the National Framework when it considered the unpredictability of Mrs E’s needs.
101. We are satisfied there are no failings how the IRP considered the four characteristics of Mrs E’s needs. We think it acted in line with the National Framework.
102. This does not take away from the account Mrs A has given us or the challenges Mrs E faced in her daily life.
103. 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.
Procedural issues
104. Mrs A has advised us that instead of using the 2016 version of the National Framework, the IRP used the 2018 version when considering the case. We can confirm there is no 2016 version of the National Framework and the previous version was published in 2012. NHSE should have used the same National Framework as the CCG (2012), and we have kept this in mind whilst investigating this case. We have seen that the IRP’s use of the 2018 version has not had any impact on the decision it reached.
1. The Parliamentary and Health Service Ombudsman has carefully considered Mrs A’s complaint about NHS England (NHSE) and the Independent Review Panel’s (IRP) eligibility decision on Continuing Healthcare (CHC) funding for her late mother, Mrs E.
2. To reach our decision, we have reviewed the information Mrs A has sent us, as well as the information provided by NHSE. We consider NHSE acted in line with national guidance, and we have not found any signs of failings in relation to any of the complaint points Mrs A has raised with us.
3. We are sorry to hear Mrs A found the process distressing and we appreciate the amount of time she has dedicated to taking this complaint through the NHS appeals procedure and then bringing it to us.
4. For clarity, in 2022, the Clinical Commissioning Group (CCG) became an Integrated Care Board (ICB). We will refer to it as the CCG throughout this statement, as it was the CCG at the time.