East Leicestershire and Rutland CCG (P-001012)

  • 1.	The CCG’s decision to decline Mr A’s fast track application was not in line with the National Framework for Continuing Healthcare. This failing led to his son, Mr B, having to challenge the CCG and prepare for an unnecessary review of his father’s needs at any already difficult time. This in turn caused Mr B significant distress and had an impact on his mental health. The CCG has not acknowledged the impact to Mr B.
    2.	As Mr A should have been found eligible for fast track Continuing Healthcare, we also found that his estate has been financially impacted. The CCG has not acknowledged this impact. 
    3.	We therefore uphold this complaint and recommend that the CCG reimburse Mr A’s estate the sum of the care home fees he paid between 19 July and 11 November 2018. We also recommend that the CCG pay Mr B £550 in recognition of the emotional impact to him.  
  • 4.	Mr B, represented by Beacon CHC, complains about NHS East Leicestershire and Rutland CCG’s decision that his father, Mr A, was not eligible for NHS Continuing Healthcare (CHC) fast-track funding on 23 July 2018. 
    5.	Mr A was assessed for CHC funding on 13 September 2018 and Mr B says that this could have been avoided. He explains that appealing the CGG’s decision and then preparing for the following assessments meant that he lost out on spending time with his father in the last few months of his life. He says the process caused him a great deal of stress, impacting on his mental health. Mr B also claims that he has lost out as his father’s estate has suffered financially and he is a beneficiary. 
    6.	Mr B would like the CCG to review its decision that his father was not eligible for fast-track funding. He would also like financial remedy to recognise the impact of its decision on him.
  • 7.	On 1 March 2017, Mr A was assessed for eligibility for NHS CHC funding. A Decision Support Tool (DST) was completed and he was found not eligible for funding. 
    8.	Mr A was next assessed for eligibility for NHS CHC funding on 18 July 2018, this time via the fast-track pathway. Mr A resided in a care home and in the weeks leading up to the assessment, his records note that he had been found non-responsive; had refused food and fluids; and his GP had prescribed end of life medication.  
    9.	The CCG received the completed fast-track tool on 19 July. Following triage, it declined the application for fast-track funding on 23 July. The CCG declined the application on the basis that Mr A did not have a rapidly deteriorating condition. It also stated that there had been ‘no changes’ to his care needs since the last DST. A third DST was completed on 14 September. Mr A was found not eligible for CHC funding. 
    10.	Mr A sadly died on 11 November.
  • 11.	We have considered evidence provided to us by Mr B, Beacon CHC and the CCG. This includes Mr A’s clinical records and the CCG’s complaint file. It also includes Mr B’s account of what happened and supporting evidence of the claimed impact.  
    12.	We also obtained advice from a registered general nurse who has extensive experience in the application of NHS Continuing Healthcare.  
    13.	We use related or relevant law, policy, guidance and standards to inform our thinking. This allows us to consider what should have happened. In this case we have referred to the following standards:
    •	Department of Health & Social Care: National Framework for NHS Continuing Healthcare and NHS-funded Nursing Care, November 2012 (revised)
  • 14.	The purpose of the fast-track pathway is to ensure individuals with a rapidly deteriorating condition, which may be entering a terminal phase, are provided with a care package quickly. To access fast-track funding, a completed fast-track pathway tool which evidences that an individual is both rapidly deteriorating and may be entering terminal phase must be sent to the responsible CCG. The tool should be completed by an appropriate clinician familiar with the individual’s condition and prognosis.
    The National Framework says: 
    100. ‘Where a recommendation is made for an urgent package of care via the fast-track process, this should be accepted and actioned immediately by the CCG. It is not appropriate for individuals to experience delay in the delivery of their care package while concerns over the use of the Fast Track Tool are resolved. CCGs should carefully monitor use of the tool and raise any specific concerns with clinicians, teams and organisations. Such concerns should be treated as a separate matter from the task of arranging for service provision in the individual case.’
    It goes on to say: 
    102. ‘Careful and sensitive decision-making is essential in order to avoid the undue distress that might result from a person moving in and out of NHS continuing healthcare eligibility within a very short period of time.’ 
    15.	There are two reasons noted by the CCG on the completed tool which led to Mr A’s application being declined. Firstly, it states ‘there has been no other significant rapid deterioration in his health since the DST in March 2018’. 
    16.	We have not seen any evidence that a DST was completed in March 2018. The only DST we have seen was completed in March 2017. In any event, it is not clear why the CCG made reference to this DST or made its decision based on it. We asked our Adviser whether it was appropriate for the CCG to refer to the most recent DST. 
    17.	Based on the advice we received, our view is that while a previous DST may be referred to during a CHC review, the fast-track document is a standalone assessment at the point of need. Regardless of whether there had been a rapid deterioration or not (or indeed a more recent DST), the previous DST was not relevant to I’s eligibility for fast-track funding. 
    18.	The CCG also noted on the tool that Mr A’s condition appeared to be gradually declining because there had been no ‘significant changes’ over a three-week period. 
    19.	The National Framework states that strict time limits that base eligibility on a specified expected length of life remaining should not be imposed. It says:  
    48.1 ‘… there are no time limits specified and a decision to use the Fast Track Pathway Tool should not be based solely around an individual’s life expectancy. The phrase ‘rapidly deteriorating' in the Tool should not be interpreted narrowly as only meaning an anticipated specific or short time frame of life remaining… Also, someone may currently be demonstrating few symptoms yet the nature of the condition is such that it is clear that rapid deterioration is to be expected before the next planned review.’ 
    20.	We looked at the completed tool with our Adviser. They noted that during the three-week period, Mr A had experienced an admission to hospital and was treated for pneumonia. When he returned to the care home, he was sadly prescribed end of life anticipatory medications for symptom control, comfort and dignity by his GP. He was described in his care home notes as ‘sleepy and drowsy’ and required nursing in bed. He was also referred for an urgent speech and language therapy assessment as he was experiencing coughing when eating and drinking. The district nurse noted on the tool that Mr A had deteriorated over the previous three weeks. Furthermore, the evidence suggests that Mr A had deteriorated enough to warrant the prescribing of end of life medication. He was noted to be ‘nearing end of life’ and had also developed a grade 2 pressure ulcer. 
    21.	Our Adviser said that these factors indicate that Mr A was rapidly deteriorating.  
    22.	Based on this, we cannot agree with the CCG’s findings that Mr A’s deterioration was gradual. In any event, it was not appropriate for the CCG to refuse funding on this basis. The most appropriate course of action, in line with the National Framework, would have been for the CCG to accept the tool and put funding in place. They could then ask the appropriate clinician for any supplementary information whilst ensuring that Mr A’s representatives were aware that this would be subject to review.
    23.	The National Framework also states that it is the appropriate clinician who determines that the individual has a primary health need. (An appropriate clinician is a registered nurse or medical practitioner who is responsible for the diagnosis, treatment or care of the individual). It says 
    44.1 ‘In Fast Track cases, Standing Rules state that it is the ‘appropriate clinician’ who determines that the individual has a primary health need. The CCG must therefore decide that the individual is entitled to NHS continuing healthcare and should respond promptly and positively to ensure that the appropriate funding and care arrangements are in place without delay.’
    Based on the evidence we have seen, it is our final decision that the CCG’s decision not to accept Mr A’s fast-track referral was not in line with the National Framework.
    Emotional impact 
    24.	Mr B says the CCG’s decision meant that he missed out on spending time with his father before he died. He explains that in the last months of his father’s life, his time and money were taken up with challenging the funding decision. He says this prevented him from being able to stay in a hotel near his father’s care home as he had no choice but to return home.
    25.	Mr B says that the strain of this resulted in a longer lasting impact on his mental health. We have seen a letter from his GP which states that he has been prescribed medication for stress which according to the GP ‘was compounded by the process of seeking redress… for failing to fund (CHC) for his extremely ill father’. This letter was dated January 2020. 
    26.	A further impact Mr B claims is that he did not feel he could tackle the dispute with the CCG alone so needed to pay for representation. He says his belief in the CHC system was broken by the CCG’s decision and his anxiety levels increased as he did not feel able to raise this dispute with the CCG alone at such a vulnerable time in his life. 
    27.	As we have seen, a DST took place on 14 September. Based on the evidence we have seen, it is our view that this DST could have been avoided or would not have to have taken place so soon.  
    28.	The National Framework says where the individual who is receiving services as a result of a fast-track pathway tool is expected to die in the very near future, the CCG should continue to take responsibility for the care package until the end of life. If Mr B had been in receipt of fast-track funding, the likelihood is that it would have been in place until his death. This is based not only on the guidance but on the evidence contained within the tool itself, as 
    29.	The National Framework says that a review should take place ‘after three months’. However, this is a review of the fast-track care package, not eligibility for CHC. It says if an individual’s needs have changed, it may then be ‘necessary to reassess for eligibility’.  
    30.	On the balance of probabilities, Mr A’s CHC funding would have been in place until his death on 11 November. 
    31.	This three-month timeframe amounts to an avoidable period where Mr B would have been challenging the CCG’s decision. In addition, he also had to prepare for the September DST, which, as we have seen, should not have taken place. 
    32.	We do not seek to diminish what a difficult time this must have been for Mr B, however we have seen no evidence to suggest that the CCG’s decision meant that he was prevented from seeing his father as much as he would have liked during the three-month period. Although he would have had to prepare for the DST and spend time communicating with the CCG, we have not seen why this made any particular difference to the amount of time he would have otherwise been spending with his father. 
    33.	We cannot see why the CCG’s decision caused Mr B to return home or why the CCG’s decision had an impact on funds available to facilitate him spending time with his father.  
    34.	It is difficult to say when the impact to Mr B will resolve. The strain of the last few months of his father’s life has had a lasting emotional impact as evidenced by the GP’s letter. However, it would be far too speculative to try to determine how he might have felt if the failings had not occurred. Sadly, Mr B would always have experienced high levels of distress during the period when his father was dying. However, it is reasonable to say that challenging the CCG would also have caused Mr B distress. It is likely the combination of these factors that have had such an impact. 
    35.	We have not seen a link between the CCG’s failing and Mr B’s decision to seek representation. While we accept that he was impacted emotionally and his decision no doubt stemmed from the difficulty he was in, we have not seen any evidence to suggest that he could not have made the claim himself.   
    36.	The National Framework sets out the process to be followed by individuals who wish to pursue a claim for CHC. The Department of Health has also published a public information leaflet which explains the various steps of the process. In addition, there are also free advocacy services available which can provide help. 
    37.	The impact we have seen is that Mr B was caused additional and unnecessary distress at an already very difficult time and the evidence suggests that this impact was significant between 23 July and 11 November 2018. It is clear that the matter took over Mr B’s life during this period. In our view, the emotional impact, set against a background of grief went above what an adult would reasonably be expected to deal with.
    Financial impact 
    38.	Mr B also claims that he has suffered a loss of funds from his father's estate of which he is a beneficiary. He explains that the care home charged the maximum fees between 19 July and 19 October. 
    39.	Based on the failings we have identified, there is no doubt that there has been a financial loss to Mr A’s estate which stems from the CCG’s decision. 
  • 40.	In considering our recommendations, we have referred to our Principles for Remedy. These state that where poor service or maladministration has led to injustice or hardship, the organisation responsible should take steps to put things right. 
    41.	Our principles state that public organisations should ‘put things right’ and, if possible, return the person affected to the position they would have been in if the poor service had not occurred. If that is not possible, they should compensate them appropriately.