4. Mrs U complains about NHSE’s consideration of her mother, Mrs O’s eligibility for CHC funding between 1 January 2010 and 21 November 2012.
5. She says the IRP did not assess domain levels correctly or accurately, and it inadequately analysed and assessed the four key indicators.
6. Mrs U says the IRP reached the wrong decision and her mother’s estate has been disadvantaged. She wants NHSE to hold a further hearing and reconsider her case.
7. On 30 October 2008, Mrs O moved to a home with specialist provision for residents with dementia. Sadly, she died on 16 October 2013.
8. The family asked Bradford CCG to complete a retrospective review of Mrs O’s entitlement to CHC funding between 4 November 2008 and 21 November 2012. It found Mrs O was eligible for funding between 4 November 2008 and 31 December 2009 only.
9. On 9 February 2018 the family appealed the decision that Mrs O was not eligible for the full period. The CCG considered the appeal on 1 May 2018. It decided its original decision was correct.
10. On 24 May 2018 the family requested an IRP consider the case. NHSE held an IRP on 28 August 2019. NHSE shared the outcome of the IRP on 18 September 2019.
11. Mrs U disagreed with the outcome and complained to us about NHSE’s decision on 12 August 2020.
Reasons for our decision
15. Before we decide if we should investigate 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.
16. Whether or not an individual is eligible for CHC funding is a discretionary decision. The fact that someone else has a different opinion does not mean that there must have been a fault in the decision-making process.
17. It is our role to decide if the IRP made its decision in line with the relevant standards and guidance. In this case the relevant guidance is the National Framework.
18. Mrs U and Mr Y, her representative, did not specifically tell us why they thought the IRP’s decision-making was wrong, so we have looked generally at the IRP’s consideration to decide if it took account of all the relevant information provided to it in reaching its decision. We do this by looking at four key areas of the process alongside the National Framework.
Our first consideration
19. We have looked at whether the IRP established all the obvious, appropriate, and relevant clinical facts.
20. We carefully considered the available evidence. We can see the IRP used the GP records and care home records, which included care plans, behaviour charts, nutritional charts, medication charts and daily notes. It considered the relevant Decision Support Tools (DST), local resolution notes, as well as correspondence with Mr Y’s organisation and the CCG. It also considered submissions made by Mrs U and her representative.
21. The National Framework says the IRP should gather and scrutinise the available and appropriate evidence.
22. We cannot see any obvious omissions in the IRP’s file. We are satisfied the IRP took appropriate steps to gather relevant evidence from Mrs U’s representative. It also reviewed the information the CCG had at local resolution.
23. The information we have seen suggests the IRP established the relevant clinical facts in line with the National Framework. There are no indications of failings which have led us to question the IRP’s decision-making process, in this part of its consideration. We hope this offers Mrs U reassurance the IRP reviewed all the relevant information.
Our second consideration
24. We have looked at whether the IRP had an appropriate clinically led discussion of the impact, and interaction between, the relevant clinical facts.
25. The National Framework says the IRP should make a full record of the issues, evidence considered, and its conclusions and reasoning.
26. The IRP produced a report that shows it considered Mrs U’s representative’s written submission and questionnaire. It looked at the reasons they had asked for an IRP on behalf of Mrs U, and their views on each of the domains and four key indicators (Nature, Intensity, Complexity, and Unpredictability).
27. The annex to the report shows the IRP discussed the domain weightings and key indicators with Mr Y and the family, as well as the CCG. The discussion was based around Mrs O’s clinical needs in each area, with the CCG evidencing its views where weightings were disputed. We appreciate that some of the information Mrs U had to talk about might have been distressing.
28. The National Framework says the IRP chair should consider, in advance of the hearing, if there is a need for the panel to access independent clinical advice. It says the role of a clinical adviser is to advise the IRP on the original clinical judgements and how they relate to the National Framework.
29. The IRP report states a clinical adviser was not present or needed at the hearing. NHSE told us this was because the NHS representative on the panel was a qualified nurse and able to fulfil the role of clinical adviser. It apologised this was not clear in the report. We hope this reassures Mrs U.
30. We are satisfied NHSE had an appropriately constituted panel. This included a qualified nurse to support the panel with clinical matters. There was also a local authority representative present to advise on social care issues.
31. The information we have seen shows the IRP had an appropriate clinically led conversation in line with the National Framework. There are no indications of failings which have led us to question the IRP’s decision-making process in this part of its consideration.
Our third consideration
32. We looked at whether the IRP’s final decision adequately considered and explained the conclusions of the clinically led discussion.
33. Section 7 of the report shows the outcome of the IRP’s clinically led discussions about each of the domain weightings. Mr Y says he disagrees with how the IRP assessed the domains. He did not tell us which ones or why.
34. The IRP’s analysis shows it worked through each of the domains in turn. It shows its consideration took account of Mr Y’s representations, the CCG’s views, and the records.
35. For example, when discussing Altered States of Consciousness, it referred to the descriptor used in the DST for a high level of need (the level assessed by Mr Y), referencing frequent episodes of Altered States of Consciousness.
36. In the discussions, Mr Y said the CCG had explained ‘frequent’ was once a month, but despite Mrs O displaying this frequency, it had not found her needs to be high. The CCG said the evidence did not show she had a seizure a month. We recognise any number of seizures would have been upsetting for the family.
37. The IRP set out its definition of ‘frequent’, and it looked to the records to evidence the number of recorded seizures. It agreed with the CCG that seizures did not occur every month, but it found there were 11 seizures in 2010, and eight seizures in 2011. Having looked at the evidence independently, the records support the IRP’s view.
38. We have considered the full IRP report and the available evidence. The IRP’s weightings and rationale throughout the report are consistent with the domain descriptors and are in line with the National Framework.
39. The IRP’s report also clearly explains the parts of the National Framework which sets out how it makes its decision. It also explained how the domain weightings fed into its analysis of the four key indicators.
40. The information we have seen shows the IRP’s final decision explained the conclusions of its clinically led discussion, in line with the descriptors in the National Framework. There are no indications of failings which have led us to question the IRP’s decision-making process in this part of its consideration.
Our fourth consideration
41. We looked at whether the IRP applied the appropriate eligibility tests and if its conclusions were evidence based.
42. The National Framework says an individual is eligible for CHC funding if they have a primary health need. A primary health need is determined by considering all the needs identified in the domain weightings, and to see if the quantity or quality of care needed is more than the limits of a local authority’s responsibilities.
43. To help reach this conclusion the IRP used the four key indicators, as set out in section 9 of its report. Mr Y says the IRP inadequately analysed and assessed the four key indicators. He did not tell us why he thought this.
44. The National Framework lists questions in order to direct the discussion around the key indicators. When considering if the IRP adequately analysed the information in each area, we look to see if the sorts of points discussed reflect these questions.
45. When considering the ‘Nature’ indicator, the IRP listed Mrs O’s medical conditions, but emphasised its consideration was focussed on the needs arising from them, not the conditions themselves. This is in line with the directions of the National Framework.
46. The IRP set out Mrs O’s key needs, and these reflect the domain weightings. It looked at the interventions needed to meet the needs the CCG had identified in the DST document. It agreed with the CCG’s conclusions. The IRP recognised NHS services such as GP and district nursing had the level of skill needed to meet Mrs O’s needs.
47. The IRP did not specifically comment on the progression of Mrs O’s needs, as suggested in the National Framework. It did recognise her severe cognitive impairment. As severe is the highest level of need, we think this shows her needs in this area were already close to their peak.
48. Overall, we have seen the IRP considered the relevant questions set out in the National Framework when looking at the nature of Mrs O’s needs. We have seen no indication this part of its consideration was inadequate, or that the information referred to was not reflective of the information discussed in the hearing and contained in the records.
49. When considering the intensity of Mrs O’s needs, the IRP recognised the severity of the needs and referenced the domain weightings. It also looked at the type of intervention needed, referring to support throughout a 24 hour period. These considerations are in line with the questions set out in the National Framework.
50. The IRP looked at the level of support needed to meet Mrs O’s needs, including the number of staff, and the time it took. It recognised there was a difference between the earlier stages of the period under review and the later stages.
51. It concluded Mrs O needed frequent interventions, but there was no evidence they were lengthy or needed increased numbers of staff to manage. These considerations are also in line with the National Framework.
52. We recognise a key concern for the family had been the difference in opinion of this eligibility assessment, when compared with the period immediately before it where Mrs O had been found eligible for funding.
53. The IRP identified intensity of need had been an indicator of a primary health need previously, and it explored this in detail. It referenced the recorded instances of challenging behaviour and it explained why they did not show intensity in the period under review.
54. It acknowledged the seriousness of the incidents but highlighted the risk and needs associated with them were not significant. It also explained why this was different to the incidents in the funded period. The IRP’s comments are consistent with the records and the evidence Mr Y highlighted.
55. Overall, we have seen the IRP considered the relevant questions, set out in the National Framework, when looking at the intensity of Mrs O’s needs. It also specifically addressed the significant reasons for the review. We have seen no indication its consideration was inadequate.
56. In its consideration of the complexity of Mrs O’s needs, the IRP has listed the interactions across multiple domains. It looked at the support needed to meet the needs of the interactions and its effectiveness. Its considerations are in line with the questions in the National Framework.
57. The IRP recognised Mrs O’s care was essential, but it decided there was no complexity to her care, and it was delivered in line with care plans. Having independently reviewed the records, we have not seen any indication the IRP’s rationale is not evidence based.
58. Overall, we have seen the IRP considered the relevant questions set out in the National Framework when looking at the complexity of Mrs O’s needs. We have seen no indication its consideration was inadequate.
59. When considering the unpredictability of Mrs O’s needs, the IRP looked at whether her needs could be anticipated, and if Mrs O’s condition remained stable. It found her needs did not fluctuate significantly and they were well known to care staff. It supported this by clarifying there was no evidence staff could not meet her needs because of their fluctuations.
60. Again, the IRP recognised there had been a degree of unpredictably identified in the assessment of the period immediately before the period under review.
61. The IRP reiterated the evidence in this period did not show the same needs identified in the earlier period. It found the triggers for Mrs O’s behaviour in this later period were more consistent, either in relation to her personal care, or disagreements with other residents. We can see the records support its conclusions.
62. Overall, we have seen the IRP considered the relevant questions set out in the National Framework when looking at the unpredictability of Mrs O’s needs. It also specifically addressed the significant reason for the review. We have seen no indication its consideration was inadequate.
63. We have seen the IRP’s consideration of the Nature, Intensity, Complexity, and Unpredictability of Mrs O’s needs is consistent with the evidence in the medical records.
64. The IRP looked at the relevant information as well as Mr Y’s and the family’s views. We think the IRP explained in detail how it weighed up all the evidence and came to its decision.
65. In sections 10 and 11, the IRP clearly compared its findings from the key indicators to the provisions a local authority could provide, and it explained why Mrs O did not have a primary health need.
66. The information we have seen shows the IRP applied the appropriate eligibility tests and reached an evidence based conclusion, in line with the National Framework. There are no indications of failings which could have led us to question the IRP’s decision-making process in this part of its consideration.
Our conclusion
67. We recognise Mrs O needed help and support with her everyday life to make sure she was safe and well. We understand this would have been very difficult for the family to see.
68. We have considered the report alongside the available evidence, the checklist, the DST, GP records, and care home records. We have not seen anything to indicate any failings with the IRP’s reasoning or decision-making process. This means we will not consider this complaint any further.
69. We appreciate this was not the decision Mrs U was hoping for. We hope we have clearly explained our reasons for this, and our consideration helps both offer some reassurance about the process and brings the matter to a close for her.
1. We have carefully considered Mrs U’s complaint about NHS England (NHSE) and its Independent Review Panel (IRP). An IRP is a panel that reviews decisions about an individual’s eligibility for Continuing Healthcare (CHC) funding. We recognise this has been a long and difficult process for Mrs U.
2. We have not seen any indication of failings in the IRP’s decision-making. The IRP’s consideration of Mrs U’s mother’s needs is evidence based and in line with the National Framework, which is the guidance that sets out how to consider an eligibility decision. This means we will not be looking at this complaint any further.
3. We appreciate this was not the outcome Mrs U was hoping for. We thank Mrs U and her representative for taking the time to share their concerns with us.