3. Mrs N complains on behalf of Miss O about NHSE’s IRP decision on 19 October 2023 that she was not eligible for continuing healthcare funding. She disputes the IRP’s weightings in the Nutrition, Psychological and Emotional Needs and Medication domains. She disagrees with the four key indicators.
4. As a result, Miss O’s care is currently funded and coordinated by the local authority when she says this should be done by the NHS.
5. Mrs N would like NHSE to reconsider its decision.
6. On 18 May 2022 the local authority confirmed it had instructed the advocate under the care act of 2014. It considered Miss O did not have the capacity to raise a complaint herself.
7. On 31 July 2023 Miss O’s advocate, Mrs N, sent a completed IRP application form.
8. On 19 October 2023 NHSE upheld the ICB’s decision Miss O was not eligible for CHC funding.
11. To help us reach a decision, we have carefully considered the information provided by Miss O’s representative, Mrs N, alongside the file the IRP considered. This includes the clinical and care home records which were available.
12. Whether or not an individual is eligible for NHS continuing healthcare funding is a discretionary decision. It is our role to decide if the IRP made its decision in line with the National Framework for NHS Continuing Healthcare and NHS Funded Nursing Care (National Framework) 2018.
13. 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 that someone else has a different opinion does not mean that there must have been a fault in the decision making process.
14. The purpose of the IRP is to review the procedure followed by the ICB/ICB in making a decision about a person’s eligibility, or the primary health need decision by the ICB. In reaching a view about whether the ICB followed the correct process and correctly applied the eligibility criteria, the IRP can:
• recommend the ICB/ICB should reconsidered the case and address any faults identified in the process, or • reach a view as to whether the individual should or should not be considered to have a primary health need.
15. When we look at a complaint about an IRP, we consider whether it took account of all the relevant information provided to it in reaching its decision. To help us reach a decision there are four key areas we consider. I will consider each key area below.
Did the IRP establish all the appropriate and relevant clinical facts?
16. Paragraph 16 Annex D of the National Framework says: ‘The IRP should also have access to the views of key parties involved in the case, including the individual, his or her family and any carer, health and social services staff, and any other relevant bodies or individuals. It will be open to key parties to put their views in writing or to attend.’
17. We have carefully considered the available evidence. We can see the IRP considered: • Evidence provided during the IRP meeting • Mrs N’ submissions and local resolution notes • Miss O’s GP, hospital and care home records.
• Miss O’s decision support tools and multi-disciplinary panel notes
18. The National Framework says the IRP should gather and scrutinise the available evidence as described in the local resolution section. We have not seen any obvious omissions in the IRP’s file. We are satisfied the IRP gathered the appropriate evidence in line with the National Framework.
19. The IRP was held on 19 October 2023. Miss O’s representative, Mrs N was in attendance. Throughout the IPR we can see the Chair noted their views. We refer to the following examples:
20. ‘The Advocate, in written submissions and at the IRP, had noted that there was a diagnosis of Dysphagia where there had been advice provided by Speech and Language Therapy (SaLT) to ensure that Miss O was fed safely’
21. ‘The Advocate had considered that Miss O could get very anxious and as they described, ‘wound up’ about pain. They also considered that she would become frustrated at an inability to communicate clearly when she was in pain, particularly in relation to her ear infections.’
22. ‘The Advocate had considered that Miss O had profound learning disabilities and was unable to assess risk. She could be confused and disorientated and did not ‘know the difference between day and night.’
23. ‘The Advocate noted that Miss O had ‘issues with self-harming behaviour and this cannot always be stopped despite the one to one.’
24. ‘The IRP did reflect on all the evidence provided by the Advocate and in particular that relating to the Behaviour domain. The IRP recognised that in this domain the evidence did support a Higher level than that considered by the ICB.’
25. The available evidence demonstrates the IRP considered all the evidence that was made available to it and there is no obvious omission evidence in the IRP’s consideration of Miss O’s eligibility for NHS CHC funding. As such we cannot see any failings in this part of IRP’s consideration which would lead us to question its decision.
Before it made its decision, did the IRP consider all the relevant evidence?
26. Paragraph 200 of the National Framework says, ‘NHS England is responsible for convening independent review panels consisting of an independent chair, a ICB representative and a local authority social services representative’.
27. We can see the following individuals were also present at the meeting:
• an independent chair • a health care representative (ICB representative) • a local authority representative • a NHS representatives • a clinical advisor
28. We consider NHS England appropriately constituted a panel in line with the National Framework.
Did the IRP clearly explain how it had reached its decision?
29. We note Mrs N disputes the IRP’s findings with respect to nutrition, psychological and emotional needs and drug therapies domains.
Nutrition
30. In Miss O’s application, her representative says she should be considered high in this domain. The representative explains Miss O was at a high risk of choking. Miss O was diagnosed with dysphagia. Care staff had to follow detailed care plans which had been written by SALT (speech and language therapist). Dysphagia is where you have problems swallowing.
31. For this domain to be considered high in line with the National Framework we would expect to see:
• Dysphagia requiring skilled intervention to ensure adequate nutrition/hydration and minimise the risk of choking and aspiration to maintain airway.
• Subcutaneous fluids that are managed by the individual or specifically trained carers or care workers.
• Nutritional status “at risk” and may be associated with unintended, significant weight loss.
• Significant weight loss or gain due to identified eating disorder.
• Problems relating to a feeding device (for example PEG) that require skilled assessment and review.
32. We can see during the IRP the panel considered Miss O’s representative’s view. It acknowledged advice had previously been provided by SALT and her diagnosis of Dysphagia.
33. The Panel explained Miss O had been discharged from SALT and carers followed advice SALT had given. It did not find evidence Miss O experienced any choking. Miss O’s weight was not considered at risk and her BMI of 19.4 was within an acceptable range for her hight.
34. The Panel concluded no specific training was needed to provide care in this domain. The care could be delivered by a key or support worker. The IRP noted evidence of Miss O feeding herself on occasion. The panel scored Miss O as moderate in this domain.
35. We acknowledge Miss O’s representative does not agree with the IRP weightings. We have looked at the evidence presented at the IRP. We consider the IRP has explained its decision using the evidence available, an example includes Miss O’s weight charts within her care records.
36. We cannot question discretionary decisions when they have been made without fault. In line with the National Framework the IRP have evidenced its decision. We see no indication of a failing.
Psychological and emotional needs
37. Miss O’s representative explains this domain should be considered as high. In their application they say Miss O’s mood was very variable, had a poor sleep pattern and was not easily reassured. Miss O’s representative notes Miss O was given Lorazepam weekly.
38. For this domain to be considered high in line with the National Framework we would expect to see:
• Mood disturbance, hallucinations or anxiety symptoms, or periods of distress, that have a severe impact on the individual’s health and/or well-being.
• 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.
39. The Panel considered the evidence submitted before and during the IRP. It noted Miss O’s mood was changeable and was made worse during periods she had an ear infection. It also acknowledged she suffered periods of anxiety.
40. The Panel went on to explain the records show carers provided support with individual activities including playing with her and providing social company. It said these interventions did not amount to a high level of need. It noted in the records Miss O responded to techniques which reassured her. It explained the records show Miss O being prescribed Lorazepam three times over a two month period. The IRP concluded to Miss O should be scored moderate in this domain.
41. We have reviewed the evidence made available to the IRP. The IRP’s view is in keeping with the records. For example, we have reviewed the medication charts which demonstrate Mrs O was given lorazepam on three occasions. We can see the IRP considered Miss O’s evidence alongside the available evidence. We note they disagree with the IRP’s decision. Our view is the IRP explained in detail how considered the evidence and reached its decision. This was in line with the National Framework. We have seen no indications of failings for this part of the IRP process.
Drug therapies domains
42. We have considered Miss O’s application for an IPR and the evidence presented during the IRP. Miss O’s representative says Miss O’s medication had to be given secretly as she was non-compliant with her medication. Miss O’s representative explains Miss O suffered from a painful ear infection which lasted over one year. She was also given antipsychotic medication. Miss O’s representative explained she should be considered high in this domain.
43. For this domain to be considered high in line with the National Framework we would expect to see: • 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 nonproblematic to manage.
• Moderate pain or other symptoms which is/are having a significant effect on other domains or on the provision of care.
44. We can see at the IRP the Panel acknowledged Miss O suffered from an ear infection and her medication had to be given secretly.
45. The Panel went on to explain no additional training was required to provide Miss O’s medication regime. The pain relief given to Miss O was paracetamol which is considered a low level analgesic. It did not find evidence of risks regarding the effectiveness of the medication or the potential nature or severity of side-effects. The Panel concluded Miss O should be scored moderate.
46. The evidence we have seen is in keeping with the view of the IRP. As an example, we have not seen in the medication risk assessment risks associated with the potential fluctuation of the medical condition, mental state or side effects. We acknowledge Miss O’s representative holds a different view to the IRP. We do not wish to dispute their view. We consider the IRP explained in detail how it weighed up all the evidence and came to its decision. This was in line with the National Framework, and we cannot see NHS England got anything wrong here.
Did the IRP apply the eligibility tests properly and reach an evidence-based conclusion about them?
47. Paragraph 199 of the National Framework says, when considering eligibility, NHS England should provide: ‘clear and evidenced written conclusions on the process followed by the NHS body and also on the individual’s eligibility for NHS Continuing Healthcare, together with appropriate recommendations on actions to be taken. This should include the appropriate rationale’.
48. The report shows there was a discussion and consideration of the four key indicators (nature, intensity, complexity, and unpredictability). The four key indicators may alone, or in combination, demonstrate a primary health need because of the quality and/or quantity of care that is needed to meet the individual’s needs.
49. We have reviewed the full file held by the IRP. This includes Miss O’s representative’s submission and the medical records. We have looked at the IRP report, available evidence, Miss O’s representative’s views and consider the IRP’s weightings and rationales can be supported. The domains are consistent with domain descriptors and in line with the National Framework.
50. The IRP has provided a clear explanation for its views about Miss O’s needs. It has used a variety of evidence to show it weighted each of the domains. It has detailed why its decision may differ to the ICB’s or Miss O’s representative’s. This is in line with the National Framework, and we cannot see NHSE got anything wrong here.
51. Paragraph 124 of the National Framework sets out the following:
‘Establishing whether an individual has a primary health need requires a clear, reasoned decision, based on evidence of needs from a comprehensive range of assessments relating to the individual. A good-quality multidisciplinary assessment of needs that looks at all of the individual’s needs ‘in the round’ – including the ways in which they interact with one another – is crucial both to addressing these needs and to determining eligibility for NHS Continuing Healthcare. The individual and (where appropriate) their representative should be enabled to play a central role in the assessment process.’
52. We will consider each key indicator below.
Nature
53. The National Framework sets out, ‘Nature describes the particular characteristics of an individual’s needs (which can include physical, mental health or psychological needs) 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’.
54. We have reviewed Miss O’s representative’s IRP submission. Under nature, Miss O’s representative’s explains Miss O requires one to one support for all aspects of living and has a key worker at her residence. Miss O has a care plan in place due to a risk of choking, she is doubly incontinent, experiences fluctuating moods and can display self-harming behaviours.
55. We can see at the IRP the chair acknowledged the health issues raised in Miss O’s representative’s IRP submission. The Panel explained Miss O’s continence care was not problematic and her weight remained in acceptable levels. It found no evidence in the records of choking.
56. The IRP noted carers were able to adopt a number of strategies to address Miss O’s anxiety. Carers were able to anticipate her needs and keep her safe from harm. The IRP acknowledged there are records of Miss O banging her head.
57. The IRP concluded care was appropriately provided. It did not find evidence her needs on a day to day basis required particular knowledge or skill that was above and beyond what was provided by the local authority. It noted the nature of her needs did not amount to a primary health need.
58. We have reviewed the information that was made available to the IRP and the questions set out in the National Framework. We can see the IRP have explained how Miss O’s needs were met based on her records. Its decision on the nature indicator is clear and presents a full picture of how Miss O’s needs were met. This consideration was in line with the National Framework.
Intensity
59. The National Framework sets out, ‘Intensity 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’)’.
60. Miss O’s representative’s IRP submission says under intensity Miss O was a poor sleeper who remained active throughout the day and night. Miss O’s representative’s says Miss O suffers from recurrent ear infections which have not been resolved. She says Miss O required constant close management, input every six months from a psychiatric team and support from her GP.
61. The Panel acknowledge Miss O required a large amount of care. The Panel recognised Miss O’s representative’s view some of Miss O’s needs had been marginalised although it did not agree. The IRP explained Miss O’s needs had not become a barrier to care. Miss O’s care was provided in a timely manner inline with agreed care plans.
62. The Panel explained Miss O’s key worker was primarily there to provide social care, not support her health needs. The IRP found no evidence of frequent changes to care plans or interventions from outside her residence.
63. We have considered the submission of the IPR and Miss O’s representatives. We found the IRP have provided an explanation as to the quantity and severity of care needed for Miss O. Given the above we do not consider there to be any indications of failings in the IRP’s decision-making process about the intensity of Miss O’s needs. The IRP’s reasoning is supported by the records and in line with the National Framework.
Complexity
64. The National Framework sets out, ‘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’.
65. We have considered what Miss O’s representative’s IRP submission says under complexity. She explained Miss O had complex mental heath needs. Miss O’s ear infections caused increased distress and agitation. Her ear infection also caused behavioural issues. Miss O’s sensory impairment meant she could react strongly to her involvement without warning.
66. The IRP explained Miss O had been reviewed by a specialist ENT (ear, nose, throat). Antibiotics and paracetamol were prescribed for her ear infection. It concluded this did not provide a barrier to her care. It noted Miss O’s needs could be met by suitably qualified carers with access the NHS mainstream services.
67. We have reviewed the evidence that was made available to the IRP. Its decision on the unpredictability indicator is clear and supported by the records. This includes Miss O’s care plans which remained unchanged. As such we cannot find failings in its rational and this was in line with the National Framework.
Unpredictability
68. The National Framework sets out, ‘Unpredictability describes 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. Someone with an unpredictable healthcare need is likely to have either a fluctuating, unstable or rapidly deteriorating condition’.
69. Miss O’s representative’s IRP submission states Miss O had known triggers for behaviour incidents, however some were unpredictable and staff had to act quickly. Miss O’s representative’s did acknowledge the unpredictability of Miss O’s condition was mitigated by the length of her stay at her residence.
70. The IRP explained it found no evidence Miss O’s care plans were continually changed. It accepted Miss O had a number of needs. It said these needs were know to her carers and the records do not show staff were required to respond spontaneously or rapidly outside of planned care.
71. We have reviewed the evidence that was made available to the IRP. Its decision on the unpredictability indicator is clear and supported by the records. As such we cannot find failings in its rational and this was in line with the National Framework.
72. We thank Mrs N for bringing the complaint on behalf of Miss O for our consideration.
1. We have carefully considered Mrs N’s complaint about NHS England. We acknowledge what a lengthy and difficult process the continue healthcare funding (CHC) process is. We understand how important it is for Miss O to have the appropriate care in place.
2. The information we have seen shows NHSE acted in line with the National Framework. We have seen no information to suggest anything went seriously wrong, so we have decided not to consider the complaint further.