Assessment and funding of care needs
34. The National Framework says where an individual is eligible for CHC, the CCG is responsible for care planning, commissioning services and for case management. It also says the CCG has a responsibility to assess if the package of care is appropriate to meet the individual’s health needs. We looked at the CCG’s care planning to decide if it assessed Ms D’s mother’s needs appropriately.
35. The CCG’s letter of 31 May 2018 confirming Ms D’s mother’s eligibility for CHC funding, states the CCG agreed to commission the same level of care the local authority had been providing, before it completed its CHC eligibility assessment (21 hours per week).
36. The CCG did not to complete a new care plan. Instead, it used a care plan completed by the local authority between 26 March and 11 May 2018. The purpose of the local authority’s care plan had been to highlight how Ms D’s mother’s social and personal care needs were met.
37. We did not see any evidence that the CCG assessed if the package met her individual health needs when Ms D’s mother was found eligible for CHC funding in May. This was not in line with the National Framework.
38. The CCG first commissioned an assessment of Ms D’s mother’s needs on 3 July in response to a request from Ms D on 22 June. The assessment noted Ms D’s mother had a number of health issues and her situation had got worse, increasing her care needs. It found she needed an extra ten hours of care a week to stay at home and referenced the previous interventions (care given) of maintaining nutrition, personal hygiene, toileting needs, appropriate clothing and a habitable home.
39. Although some health needs were mentioned, the assessment focused on Ms D’s mother’s social care needs. We checked with our adviser if this could be considered an assessment of health needs. They confirmed it was not a rounded assessment and it did not address all of her health needs. This means it was not a complete assessment of needs. So, we are not satisfied there is evidence that Ms D’s mother’s health needs were appropriately assessed at that time.
40. Without a clear assessment of Ms D’s mother’s needs, we cannot say the CCG’s responsibility for care planning was met in line with the requirements of the National Framework.
41. The CCG’s complaint investigation recognised Ms D’s mother needed a clinical review of her health needs. We saw no evidence that was completed until 20 September 2018. The evidence shows the CCG did not act in line with the relevant guidance and this is a failing.
42. During this time Ms D had the responsibility of finding extra care for her mother at what was an already difficult time. We appreciate that was distressing as well as time consuming. Her mother had to pay for that care.
43. As a result of the complaint, the CCG agreed to backdate and repay the funding to Ms D’s mother’s estate for the period 24 April to 1 November 2018, when it had evidence to confirm the care she self-funded.
44. It did not give an upper or lower limit for the number of hours the CCG would reimburse for that period. It confirmed the hours agreed through the assessments it did complete. It also acknowledges its delays in assessments and that when Ms D’s mother was fully assessed in October, she had 24-hour care needs.
45. Ms D gave evidence of her mother’s costs for the period, including invoices from the private care company and bank statements as requested, showing regular withdrawals from her mother’s account to pay for the private carers. She also offered detailed care records showing the logs of visits and care given to her mother. At the beginning of the period this was night care to supplement the CHC funded hours, but this increased to 24-hour care as explained earlier in our report.
46. The redress guidance sets out the process the CCG should follow when reimbursing care costs. This says, ‘When making redress payments [the CCG] should employ a transparent rationale and ensure they fully consider the individual circumstances of the case.’
47. The CCG decided some of the evidence Ms D provided did not support her claim for reimbursement. It said based on the evidence available, an amount of £2,418.81 could be reimbursed.
48. Ms D told us she had a large amount of other evidence that supports her claim, but the CCG said it would only accept invoices and financial records. She says she provided evidence of bank withdrawals for the period and the CCG did not want to see the other records she offered.
49. Considering the CCG no longer exists, we asked the ICB to review the information Ms D refers to and to confirm its position. The ICB looked at the records viewed by the CCG as well as the extra records Ms D offered to the CCG.
50. The ICB told us the records did not include enough detail to meet its financial checks. It wanted to see invoices and tax records from the carers Ms D self-funded. It said without this information it could not calculate the amount to reimburse her and it thinks Ms D should get this information.
51. Ms D says she provided all the information she had.
52. We considered the evidence Ms D provided. This included bank records and over 500 pages of daily notes, handwritten in diaries by the carers Ms D’s mother funded.
53. While these notes are not necessarily to a professional standard, it is our view they are dated and timed and clearly detail the type and volume of care provided. We think the records give enough detail to show the level of care her mother was self-funding and these records are enough for us to calculate a figure for reimbursement.
54. We note that since the CCG’s first complaint response, there has been no dispute the CCG should have assessed her mother’s care needs sooner and it has consistently accepted that meant she paid for her own care. We also took into account that records would likely have been different if the PHB had been in place, because Ms D and her mother would have known their responsibilities under that funding agreement.
55. Overall, it is our decision that neither the CCG or ICB acted fully in line with the redress guidance and showed that it had considered the individual circumstances of Ms D’s case.
56. And, our Principles for Remedy also say a public body should, ‘return complainants and, where appropriate, others who have suffered injustice or hardship as a result of the same maladministration or poor service, to the position they were in before the maladministration or poor service took place’.
57. Based on the evidence we saw, we found neither the CCG or ICB acted in line with our Principles for Remedy when considering the information Ms D provided.
58. When the CCG completed an assessment, its overall outcome was a decision on 12 October to fund a 24-hour package of care, which was broken down as: • four and half hours of agency funded care a day • eight and a half hours of personal assistance (PA) care a day • 11 hours of PA care a night.
59. We considered information from the eligibility assessment in May 2018 and we got advice from our adviser. We asked them if it was likely this outcome would have been reached if the correct assessment had been completed when CHC eligibility was found in May.
60. The assessment in May found evidence of psychological and emotional needs resulting in carers staying with Ms D’s mother throughout the night. Her eligibility for CHC funding was a result of the intensity, complexity and unpredictability of her needs and her levels of anxiety are shown in the key indicators of complexity and intensity in that assessment.
61. In June when Ms D asked for a review of needs, the CCG referred her mother to Marie Curie for assistance with night sits. This supports that there was a need for this. Ms D told us Marie Curie had no availability to support her mother and her mother was left with no option but to continue to self-fund her night support.
62. Our adviser explained in their opinion there was no significant change in need between May and October.
63. On balance, had the correct assessment been completed in May as requested by the MDT considering the eligibility assessment, it is more likely than not that the CCG would have found Ms D’s mother in need of funded night care. This would have been backdated to the 24 April when she became eligible for assessment, in line with the processes set out in the National Framework for funding CHC care where eligibility is found.
64. The CCG found Ms D’s mother eligible for 13 hours funded day care from 23 August. Ms D had started self-funding this level of care from 3 June. We did not see evidence of a significant change in need that prompted the change in the CCG’s position, other than its more detailed assessment. For that reason, we think it is also more likely than not that the CCG would have fully funded day care from 3 June.
65. We looked in detail at the amount Ms D says her mother paid in those periods and we made recommendations about what the ICB should do to put this right below.
66. Next, we looked at the CCG’s consideration of funding for home oxygen, pulmonary rehabilitation and mental health services.
67. The National Framework says, ‘It is the responsibility of the CCG to plan strategically, specify outcome and procure services, to manage demand and provider performance for all services that are required to meet the needs of the individuals who qualify for NHS continuing healthcare’.
Home oxygen therapy and pulmonary rehabilitation
68. Ms D told us her mother had COPD (a lung condition that affects how well someone breaths) and she became very anxious at night. She says her anxiety also affected her mother’s breathing. She explained that hospital admissions were frequently linked in some way to hypoxia (low blood oxygen often caused by shortness of breath) and the hospital would treat this with oxygen therapy.
69. Ms D also told us her mother needed pulmonary rehabilitation to help with her COPD. She explained she could not remember exactly where the suggestion for this treatment came from, it may have been from a carer or from her own research, but she said it was not after a clinician’s assessment.
70. Ms D explained she found a provider to deliver this care, but they were unable to visit her mother at home to assess her. She says at that time her mother was only able to leave the house by ambulance. We recognise this was frustrating and distressing as Ms D wanted her mother to have care that could have made her more comfortable.
71. The CCG’s CHC eligibility assessment did not find any breathing difficulties or need for a home oxygen service or pulmonary rehabilitation. We did not find any records that prescribed these services after a hospital admission.
72. In response to Ms D’s concerns about her mother’s breathlessness and needs in these areas the CCG commissioned a review of her mother’s breathing and requirements. This was completed on 17 August 2018 by an external organisation (organisation A).
73. After examination, organisation A found she did not meet the criteria for long term oxygen therapy. It gave support and guidance on managing her breathing, including the inhaler she used for COPD. It also prescribed a new nebuliser. It did not prescribe pulmonary rehabilitation. The CCG says this was all discussed with her and her carer at the time.
74. Ms D also told us she was concerned her mother’s carers did not know how to use the nebuliser correctly.
75. Records show organisation A re-educated her in how to use her inhaler and prescribed a new nebuliser, in support of the CCG’s comments. We appreciate this may not have been passed to all carers. We also recognise it must have been worrying for Ms D to know that her mother was breathless. But this alone is not evidence that she needed different treatment.
76. We are satisfied the CCG organised a review of Ms D’s mother’s needs and responded to that review in line with the expectations set out in the National Framework. We saw no evidence to show its conclusions were wrong or that her mother’s needs were not met in this area.
Mental health support
77. Ms D told us her mother experienced anxiety at night which influenced her breathing. She says her mother was so worried at night, this caused problems with hospital discharge planning and her mother’s solution was to self-fund night sitters. This was something she was concerned she could not afford forever.
78. In its complaint response the CCG said it is usually the responsibility of the community mental health team (CMHT) to provide home based treatment for mental health concerns. This is a routine service commissioned by the CCG and available to anyone who has access to NHS services, regardless of their eligibility for CHC funding.
79. It said for this reason, it would normally expect an individual to access this service by self-referral or through their GP. It apologised for not highlighting this to Ms D and her mother at the time.
80. The National Framework says, ‘those entitled to NHS continuing healthcare continue to be entitled to access the full range of primary, community and secondary care and other health services’. This supports the CCG’s position.
81. The CCG’s CHC eligibility assessment in May makes several references to Ms D’s mother’s ‘extreme’ or ‘great’ ‘anxiety and distress’ at night. It also recognised her mother employed private carers to meet her needs in this area, saying that her anxiety was reduced due to the level of care that was being given.
82. The CCG first found a need for further assessment of Ms D’s mother’s night time needs as part of the eligibility assessment in May. That did not happen. The MDT who met to discuss Ms D’s mother’s needs after a hospital admission in August, instructed a community complex care nurse to explore night care hours in more detail. After that assessment, the CCG found Ms D’s mother eligible for 24-hour care.
83. While we recognise there may have been a role for routine NHS CMHT services, we saw evidence that the CCG did not assess her sooner when it found more assessment was needed. This was not in line with the requirements of the National Framework that say the CCG should assess, find and deliver care to meet the individual’s needs (as mentioned earlier in our report). This is a failing.
84. We acknowledge it was upsetting for Ms D to see her mother struggling with her anxiety and funding her needs herself. We have made recommendations about what the ICB should do to put this right below.
Delay in setting up a PHB
85. Ms D complains about the delay in setting up her mother’s PHB. She says the delay denied her mother access to the care she was assessed as needing, before she died. We are very sorry to hear this and understand how this must have made an already difficult time worse.
86. Our Principles of Good Administration say public bodies should tell people how long they should reasonably expect processes to take and deal with people quickly and within reasonable timescales.
87. There is no specific guidance to say how long the process of setting up a PHB should take, as each case is individual. In this case we have already found the assessment process was not started in good time and we can see how that led to delays in the PHB process, as further assessment was needed.
88. After getting the local authority’s referral on 3 July, the CCG arranged a home visit with Ms D’s mother on 5 August. Records show the visit was cut short when Ms D’s mother asked for it to finish early and be rearranged because she was tired after a visit from the GP.
89. The CCG did not rearrange the visit before she was admitted to hospital on 23 August.
90. The CCG visited Ms D’s mother in hospital on 29 August and found the arrangements in place were not able to fully meet her needs. The CCG offered to add the private carers she employed to her care package.
91. The CCG had problems recruiting her carers to complete the PHB process. The carers Ms D’s mother had employed to provide private care had been paid ‘cash in hand’ and were not willing to enter a formal pay as you earn (PAYE) scheme, which is a requirement of the PHB.
92. During this period Ms D asked for her mother to have a 24-hour care package in her own home.
93. The CCG arranged an MDT for 20 September at Ms D’s mother’s home. Actions from the meeting included a social worker and complex community care nurse exploring her needs over a 24-hour period and putting together a care plan for panel approval. Up to this point, Ms D’s mother was paying for her own night-time care.
94. On 12 October, the CCG agreed to fund 24-hour home care. Ms D’s mother was admitted to hospital but sadly died before the care plan and funding were started.
95. Overall, it took the CCG over five months to properly assess Ms D’s mother and funding was never put in place. We did not see any information about timescales being communicated to Ms D, meaning she did not know what to expect. This was not in line with our Principles of Good Administration. This is a failing.
96. During the time it took the CCG to arrange the PHB, the responsibility fell to Ms D to arrange the extra care and to make sure her mother’s needs were met. She says it was distressing for her to know that her mother needed 24-hour care but this was not officially put in place before she died.
97. Ms D says this caused her more worry, as she tried to keep her mother safe. We appreciate how difficult it must have been for her, juggling her mother’s care needs with full time employment.
98. In its complaint response, the CCG acknowledged there was a delay in setting up the PHB, saying it took much longer than expected. The CCG apologised for the time it took and the impact this had on Ms D.
99. Our Principles for Remedy say, where maladministration (fault) or poor service has led to injustice or hardship, the public body should take reasonable steps to provide an appropriate and proportionate remedy.
100. The CCG has apologised to Ms D and it has accepted that the responsibility fell to her to make sure her mother’s needs were met. But, it did not fully accept how the delays affected her or made her feel at what must have been an extremely worrying time. Or, how long the distress and worry lasted for We have made recommendations below to put this right.
Communication about entitlement
101. Ms D complains the CCG gave her inaccurate information throughout the process about the hours of CHC funded care her mother was entitled to. She was particularly concerned about its response to her requests for overnight care.
102. As explained above, we found the CCG did not assess her mother’s health needs at the time it should have done and in particular her mental health needs which were linked to her overnight care. This meant there were several times where its views on her entitlement to funding cannot be proven, including in the CCG’s complaint response.
103. Our Principles of Good Administration say organisations should provide effective services and give people the information they need to know. As the CCG did not assess Ms D’s mother in line with guidance, or in a timely way, it did not establish and communicate the right information at the right time in line with guidance.
104. We also saw it did not find this in its own investigation of Ms D’s complaint, despite information from the first MDT clearly stating a further assessment of Ms D’s mother’s night-time needs was needed at that time. We find this a failing.
105. Ms D says the inaccuracies added to the distress and frustration she experienced over the years the process took, with the complaint part overlapping with grieving the loss of her mother. We have made recommendations about how the ICB should address this below.