11. Before we decide if we should conduct 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 has gone wrong when NHSE made its decision.
12. Whether or not an individual is eligible for NHS continuing healthcare funding is a discretionary decision. It is our role to decide whether NHS England’s IRP acted in line with the National Framework for NHS Continuing Healthcare and NHS-funded Nursing Care (July 2022) when it considered whether Mrs B was eligible for CHC. The National Framework sets out the principles and processes ICBs (previously CCGs) and NHS England should follow when considering if someone is eligible for CHC.
13. 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.
14. 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.
15. To help us reach a decision, we have carefully considered the information Mr A has provided alongside the file the IRP considered. 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. Mr A has told us he disagrees with its consideration of the nutrition, continence, mobility, psychological and emotional needs, drug therapies and medication and other significant care needs domains.
Care domains
Nutrition
16. Mr A says his mother’s needs in this domain were severe.
17. The DST descriptor for severe says:
‘Unable to take food and drink by mouth. All nutritional requirements taken by artificial means requiring ongoing skilled professional intervention or monitoring over a 24 hour period to ensure nutrition/hydration, for example I.V. fluids/total parenteral nutrition (TPN).
OR Unable to take food and drink by mouth, intervention inappropriate or impossible.’
18. Mr A says his mother could not eat and could not swallow. He says she was given sips of liquid and staff were suggesting she should be fed via a PEG. At the IRP Mr A said his mother was having mini strokes and he saw her being fed and coughing a lot at times.
19. The ICB said Mrs B’s needs in this domain were high and the IRP weighted it as high.
20. The DST descriptor for high says:
‘Dysphagia requiring skilled intervention to ensure adequate nutrition/hydration and minimise the risk of choking and aspiration to maintain airway.
OR Subcutaneous fluids 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) that require skilled assessment and review.’
21. We can see from the IRP report that panel had a discussion about Mrs B’s needs in the nutrition domain. Mr A gave an account of his mother’s need. The IRP weighed up his concerns to see whether a higher weighting may be appropriate. The IRP chair explained having a PEG fitted wouldn’t necessarily make Mrs B’s needs in the domain higher.
22. The IRP acknowledged Mrs B was reliant on carers for provision and preparation of nutrition. She had a pureed diet with thickened fluids. She was assessed as being at a high risk of choking. She required full assistance from staff with eating and drinking. The care home staff said this took a normal amount of time and no longer than thirty minutes. At the time of the DST staff had no concerns about Mrs B’s swallowing.
23. The IRP acknowledged Mrs B’s nutritional status was at risk. She was under the care of the dietician who advised she should be encouraged with snacks, milkshakes and milky drinks. She was not prescribed a nutritional supplement. The IRP said Mrs B’s weight was within the normal range. It acknowledged she had significant weight loss at her previous DST assessment. The IRP said Mrs B’s fluid intake did not always reach the recommended fluid amount of 1000ml to 1500ml. However it found evidence in the records that the recommended amount of 1000ml was achieved on many occasions.
24. The IRP acknowledged the family’s concerns they had been told Mrs B would not be able to swallow soon and comments were made by people who had not seen her. The IRP said this did not refer to the review period.
25. We understand Mr A feels the weighting should have been severe. The IRP found no evidence Mrs A was unable to take food and drink and required artificial means or skilled intervention to ensure her nutrition or intervention was inappropriate or impossible, which is what the IRP would have needed to see to give a severe weighting in this domain.
26. We think the IRP considered this domain in line with the National Framework and the DST descriptors. We can see no indication of a failing.
Continence
27. Mr A says his mother’s needs in this domain were high/moderate.
28. The DST descriptor for moderate says:
‘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.’
29. The descriptor for high says:
‘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).’
30. Mr A says his mother had no idea when she needed to go to the toilet and staff were giving her strong laxatives. At the IRP Mr A said his mother was doubly incontinent and had constipation.
31. The ICB said Mrs B’s needs were moderate and the IRP weighted it as moderate. The moderate descriptor is described at paragraph 28 above.
32. We can see from the IRP report it had a discussion about Mrs B’s needs in this domain. Mr A gave an account of his mother’s needs. The IRP weighed up his concerns to see whether a higher weighting may be appropriate.
33. The IRP acknowledged the family felt Mrs B’s needs were high because she was fully reliant on care staff for her continence needs. The IRP acknowledged she was doubly incontinent. It said her continence care were routine and she required monitoring to minimise the risk of constipation.
34. She was prescribed with a nightly laxative and a laxative powder on a as needed basis. The IRP explained to Mr A that being fully reliant on staff for continence did not mean his mother’s needs were high. It explained for it to say her needs were high her continence needs must be problematic and require timely and skilled intervention. It found no evidence on this. Mr A agreed his mother’s needs were not problematic and may have been moderate.
35. We think the IRP acted in line with the National Framework when it considered Mrs B’s needs in this domain. The IRP found no evidence Mrs B’s needs required skilled intervention to deliver care of her needs. It said her needs were routine though she required monitoring to minimise the risks including constipation. This is in line with domain descriptor for moderate.
36. The IRP considered this domain in line with the National Framework and the DST descriptors. We can see no indication of a failing.
Mobility
37. Mr A says his mother’s needs in this domain were severe.
38. The DST descriptor for severe says:
‘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.’
39. Mr A says when his mother first went into the care home she could walk aided but months before she was finally placed on CHC she couldn’t even move her hands.
40. The ICB said Mrs B’s needs in this domain were high and the IRP weighted it as high.
41. The DST descriptor for high says:
‘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.’
42. We can see from the IRP report it had a discussion about Mrs B’s needs in this domain. Mr A gave an account of his mother’s needs. The IRP weighed up his concerns to see whether a higher weighting may be appropriate. The IRP acknowledged by the time of the DST Mrs B could no longer weight bear. She was reliant on two members of care staff to help with transfers using a sling and a hoist. Staff used a slide sheet for repositioning.
43. It acknowledged Mrs B’s care plan said she had poor balance and she was at high risk of falls. It said at the time of the DST she had no falls. It did acknowledge in March 2022 she had previously rolled from her bed to the crashmat. In May 2022 she had an unwitnessed fall and was admitted to hospital. The IRP acknowledged at the time of the DST Mrs B may have been getting a contracture to her right arm/hand and she would hold her right hand with her left hand. She did not require any specific care for this.
44. The records show Mrs B was at high risk of falls. She was immobile and unable to weight bear as she had previously done so. The records say she was able to transfer using a returner but now needed full assistance. She had poor balance and required a wheelchair with a lap belt and footplates for her safety.
45. The IRP found no evidence to support the family’s submission that Mrs B was completely immobile and positioning was critical. The IRP clinical adviser said Mrs B was not completely immobile. The IRP found no evidence she Mrs B was at risk of serious physical harm on movement or transfer or positioning was critical. It said Mrs B required no specialist guidance or care plan from a occupational therapist or physiotherapist for her moving and handling.
46. We understand Mr A believes the weighting should have been severe. We recognise how challenging it is to see a family member’s health deteriorate. There is no evidence that Mrs B was completely immobile and/or clinical condition where there is a high risk of serious physical harm and where positioning is critical, which is what the IRP would have needed to see to give a severe weighting in this domain.
47. It appears the IRP considered this domain in line with the National Framework and the DST descriptors. We can see no indication of a failing.
Psychological and emotional needs
48. Mr A says his mother’s needs in this domain were high/moderate.
49. The DST descriptor for moderate says:
‘Mood disturbance, hallucinations or anxiety symptoms, or periods of distress, which do not readily respond to prompts, distraction and/or reassurance and have an increasing impact on the individual’s health and/or well-being.
OR Due to their psychological or emotional state the individual has withdrawn from most attempts to engage them in care planning, support and/or daily activities.’
50. The descriptor for high says:
‘Mood disturbance, hallucinations or anxiety symptoms, or periods of distress, that have a severe impact on the individual’s health and/or well-being.
OR Due to their psychological or emotional state the individual has withdrawn from any attempts to engage them in care planning, support and/or daily activities.’
51. The ICB said Mrs B’s needs in this domain were low and the IRP weighted it as low.
52. The DST descriptor for low says:
‘Mood disturbance, hallucinations or anxiety symptoms, or periods of distress, which are having an impact on their health and/or well-being but respond to prompts, distraction and/or reassurance.
OR Requires prompts to motivate self towards activity and to engage them in care planning, support, and/or daily activities.’
53. Again, we can see the IRP had a discussion about Mrs B’s needs in this domain. It set out the discussion it had and weight up the family’s concerns to see whether a higher weighting might be appropriate.
54. The IRP acknowledged the family at the LRM said Mrs B’s needs were moderate and at the IRP said it was high. The IRP acknowledged Mr A’s view that the weighting should be high as his mother’s was no longer engaging. The family said she could be upset at times and this improved with reassurances.
55. The IRP acknowledged the social care worker at the DST recommended a moderate level of need but did not provide any evidence to support this. The IRP said at the DST the care home staff nurse said Mrs B experience some frustration due to her cognitive and communication difficulties. However, they were able to reassure here with simple communication and patience which was effective. The IRP said this demonstrated a low level of need.
56. The records showed Mrs B enjoyed talking to staff and would need to be encouraged to get out of bed. She enjoyed spending time in the communal area with other residents. The IRP acknowledged Mrs B was not able to engage in care planning, support or activities but said this was a result of her significant cognitive impairment rather than her psychological and emotional state.
57. We think the IRP acted in line with the National Framework when it considered Mrs B’s needs in this domain. The IRP explained for it to say Mrs B had high needs it would have needed to see she was withdrawn from attempts to engage in care planning, support and daily activities due her psychological or emotional state. The IRP could not see evidence of this. This is what the IRP would have needed to see to give a higher weighting.
58. It appears the IRP considered the domain in line with the National Framework and the DST descriptors. We can see no indication of a failing.
Drug therapies and medication
59. Mr A says his mother’s needs in this domain were severe.
60. The DST descriptor for severe says:
‘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.’
61. Mr A says care staff were completely responsible for administering his mother’s medication. He says his mother couldn’t even lift her arms to take her medicine.
62. The ICB said Mrs B’s needs in this domain were low and the IRP weighted it as low.
63. The DST descriptor for low says:
‘Requires supervision/administration of and/or prompting with medication but shows compliance with medication regime.
OR Mild pain that is predictable and/or is associated with certain activities of daily living. Pain and other symptoms do not have an impact on the provision of care.’
64. We can see the IRP had a discussion about Mrs B’s needs in this domain. It set out the discussion it had and weighed up the family’s concerns to see whether a higher weighting might be appropriate.
65. At the IRP Mr A said he wouldn’t say at that point his mother’s needs were severe but he wouldn’t say they were low and soon became severe. The IRP acknowledged Mr A felt his mother’s needs in this domain were higher. The IRP had a discussion about Mrs B’s compliance with taking her medication. The ICB said Mrs B accepted all medication.
66. The IRP acknowledged Mrs B was fully reliant on others to manage all aspects of her medication regime. It said such a need is described as low in the DST descriptor. Mrs B’s medication regime was non-complex and administered as needed. Staff required no specialist training to administer her medication.
67. The IRP acknowledged at the time of the IRP it appeared Mrs B was beginning to suffer from the start of contracture to her right hand/arm. It said this did not appear to be causing her any pain. She was prescribed paracetamol on a as needed basis.
68. We think the IRP followed the National Framework when it considered Mrs B’s drug and medication needs. The IRP found no evidence to suggest Mrs B’s needs in this domain were severe. Mrs B’s medication regime was non-complex and administered as needed. Staff required no specialist training to administer her medication. Mrs B needed staff to administer her medication and she required prompting to take it. This is in line with the with the DST descriptor for low.
Other significant needs
69. Mr A says his mother’s needs in this domain were severe. He says his mother had been diagnosed with lots of other medical conditions. He says his mother had vascular dementia and she had lost weight.
70. The ICB and the IRP say Mrs B had no needs in this domain.
71. The DST descriptor for this domain says:
‘There may be circumstances, on a case-by-case basis, where an individual may have particular needs which do not fall into the care domains described above or cannot be adequately reflected in these domains. If the boxes within each domain that give space for explanatory notes are not sufficient to document all needs, it is the responsibility of the assessors to determine and record the extent and type of these needs here.’
72. The IRP acknowledged the family felt Mrs B’s needs were severe because she was completely and totally reliant on care staff providing her with 24 hours of medical care and she had weeks to live at that time. The IRP said having reviewed the evidence it found no evidence Mrs B was reliant on 24 hour medical care. It said Mrs B had no other health related needs which had not already been explored in the 11 domains.
73. We understand how upsetting it is to witness a parents wellbeing deteriorates. We can see the IRP report acknowledged Mrs B had vascular dementia and it discussed her needs arising from this in its consideration of the cognition domain. We think the IRP followed the National Framework when it considered Mrs B’s needs in this domain. We can see no indication of a failing.
Procedural concerns
74. Mr A says the social worker did not assess his mother in person. He says people who had never seen his mother were making decisions for her.
75. It is important to note NHSE IRP decision supersedes all previous eligibility decisions. Therefore, procedural issues only have a direct substantial effect on the overall eligibility decision in exceptional circumstances.
76. In addition, our remit solely concerns the review of IRP’s decision-making process and whether it followed the National Framework in reaching its decision. We do not review the ICB’s original decision, nor can we comment on whether it should have followed a different process at the time. Our role is to review whether the IRP adequately responded to the issues raised.
77. The National Framework says the IRP should consider concerns about the process a ICB followed when it made its decision, and the panel can make recommendations to the ICB.
78. We can see at the IRP the family raised concerns about the ICB process, details of which can be found at section 14 to 16 of the report. We can see the IRP considered Mr A’s concerns. It acknowledged the social worker did not assess Mrs B in person and did not attend the DST meeting. The IRP acknowledged the family found it difficult to accept decisions about Mrs B that had been made by people who had never seen her.
79. The IRP agreed the ICB could use a number of approaches including video, teleconferencing to ensure active participation. The IRP said conducting a face-to-face assessment is considered to be good practice. However, the IRP said social services involvement in the CHC process does not only consist of their written assessment but it also an analysis of all the information and evidence. The IRP noted in this case this included the care home staff member who was also Mrs B’s key worker and knew her well, the lead nurse and the family’s representation as well as the care home and GP records.
80. The IRP said there was some inaccurate statements in terms of Mrs B’s communication skills which had been taken from previous assessment. The IRP agreed with Mr A had the social worker attended the DST in person and seen Mrs B the inaccuracies in the report would not have occurred. The IRP concluded the DST recommendation is made following consideration of all the available evidence including evidence from the care staff nurse who cared for Mrs B on a regular basis.
81. We are satisfied the process issues found and considered by the IRP would not make a difference to the eligibility decision. It would not have changed its overall decision that Mrs B was not eligible for CHC.
Summary
46. The IRP showed it applied the National Framework when it considered Mrs B’s CHC eligibility.
47. We recognise Mr A’s account and that he disagrees with the IRP’s decision. We do not wish to take away from his account or what he has told us about his mother’s needs.