Nene CCG

4. Mrs E complains that the CCG wrongly rejected two fast-track CHC funding applications that were submitted on behalf of her late mother in October 2018.

5. Mrs E says the CCG failed to acknowledge a letter from her late mother’s neuro-oncology Macmillan nurse that advised her late mother was deteriorating.

6. Mrs E says her mother was denied NHS funding and an NHS CHC package because of the CCG’s actions. Mrs E says the decision caused her upset and distress.

7. Mrs E wants the CCG to apologise for the way it dealt with the fast-track applications. Mrs E also seeks a financial remedy.

8. Mrs H sadly had terminal brain cancer. At the time, she was living in a care home. She had a Magnetic Resonance Imaging (MRI) scan on 10 September 2018, which indicated that her cancer had progressed. An MRI is a type of scan that uses strong magnetic fields and radio waves to produce detailed images of the inside of the body.

9. Following this, the lead clinician at Mrs H’s care home submitted a fast-track application for CHC funding on 16 October 2018. This was rejected as the CCG said it did not contain enough information to show that Mrs H was rapidly deteriorating, or that she was entering the terminal phase of her illness. The following day a further fast-track application was submitted and this was also rejected.

10. Fast-track CHC funding refers to funding for people who need to be fast-tracked for immediate provision of CHC, due to a rapidly deteriorating condition that may be entering a terminal phase. The intention of the fast-track pathway is that it should identify individuals who need to access NHS CHC quickly, with minimum delay and with no requirement to complete the CHC checklist or the Decision Support Tool (DST).

11. Mrs E complained about this in January 2019 and the CCG sent a response in June 2019. Mrs E then sent a follow up complaint in July 2019 and she received the final response in September 2019.

12. Mrs H was subsequently granted fast-track CHC funding in April 2020 and she sadly died in September 2020.

The CCG’s rejection of the two fast-track applications in October 2018

16. 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. We have done this and we have not found any indications that something has gone wrong.

17. Mrs E says the CCG wrongly rejected two fast-track CHC funding applications that were submitted on behalf of her late mother in October 2018. Mrs E says the assessment was rejected without proper discussion or assessment of her mother’s deterioration. Mrs E says the decision was based on an assessment that was done in July 2018 that did not follow due process.

18. Mrs E has told us there is no record in her mother’s care plan of a conversation with the clinical lead about the fast-track application and she has not been given a full explanation as to why the application was declined. She says the CCG made no attempt to speak to her mother’s oncology nurse, and there was no recognition of the increased pain her mother was in, the falls she had, her unpredictable behaviour, or the fact she had terminal brain cancer.

19. Mrs E referred to paragraph 2.1 of the National Framework, however, this paragraph of the National Framework does not relate to fast-track applications. This paragraph outlines that the 2018 version of the National Framework replaces the version published in November 2012. Mrs E has also explained that the nature of her mother’s condition was not recognised by the CCG, nor was the fact it will ‘deteriorate and kill her’. Mrs E said the assessment was not person centred and there was no recognition of the deterioration of her mother’s condition.

20. Mrs E explained that in fast-track cases, the standing rules set out in the National Framework state it is the ‘appropriate clinician’ who determines that the individual has a primary health care need. Mrs E says the CCG must therefore decide that the individual is entitled to NHS CHC and should respond promptly and positively to ensure that the appropriate funding and care arrangements are in place without delay.

21. Paragraph 217 of the National Framework sets the criteria for when someone should be considered eligible for fast-track funding and explains that ‘Individuals with a rapidly deteriorating condition that may be entering a terminal phase, may require ‘fast-tracking’ for immediate provision of NHS Continuing Healthcare’.

22. Paragraph 218 of the National Framework says the intention of the fast-track pathway is that it should identify individuals who need to access NHS CHC quickly, with minimum delay, and with no requirement to complete a DST. Therefore, the completed fast-track pathway tool, with clear reasons why the individual fulfils the criteria, and which clearly evidences that an individual is both rapidly deteriorating and may be entering a terminal phase, is in itself sufficient to establish eligibility.

23. In its response dated 24 June 2019, the CCG explained the CHC service did not identify that Mrs H was eligible for NHS CHC, as the referral did not identify any recent changes or deterioration in her condition, therefore the application of 16 October 2018 was rejected as not eligible. The CCG added that the application of 17 October 2018 was also rejected, as there was still no evidence of deterioration and the CCG advised Mrs E of this outcome in an email on 21 January 2019.

24. When we asked the CCG about this it told us that ‘It appears the fast-track was diagnosis based and did not evidence a rapidly deteriorating condition that may be entering a terminal phase which is fast-track criteria’.

25. The CCG said the initial fast-track application dated 16 October 18 did not outline any rapid deterioration but stated there had been progression of Mrs H’s cancer and her prognosis was described as ‘short months as a reasonable assumption’. The nurse assessor documented ‘I have screened out this fast-track as there is no clinical indication for a fast-track as there is no evidence of clinical deterioration… The referrer… at the care home… has discussed with the daughter and will send in a new fast-track to identify where the deterioration is.’

26. The CCG explained the resubmitted fast-track application received on 17 October 2018 said there had been some deterioration, but it did not describe a rapidly deteriorating condition, or that the condition may be entering a terminal phase. The single point of access nurse documented in their consideration ‘Resubmission again of the fast-track did not identify any changes to merit a fast-track… I have discussed this again with the referrer… at the care home’.

27. The case management notes the CCG provided us with show that both fast-track applications were considered, but they were rejected as the CCG did not consider the applications showed Mrs H was rapidly deteriorating or that her condition may be entering a terminal phase. The notes show the CCG contacted the clinical lead at Mrs H’s care home to explain this.

28. The fast-track application of 16 October 2018 that was sent from the clinical lead at Mrs H’s care home stated that Mrs H had been under the care of a hospital oncology team. It stated she had a scan on 10 September 2018, the doctor had reviewed the scan and said it indicated progression of Mrs H’s cancer.

29. It explained that the prognosis was short months as a reasonable assumption and there was no plan for another scan as Mrs H was not fit enough for further investigation. The clinical lead stated they would attach the letter from the oncology team.

30. The application stated that Mrs H had a brain tumour, and she had permanent brain damage, but she was still able to weigh up information to make a decision at that time and she was able to communicate that decision.

31. The lead clinician at Mrs H’s care home sent another fast-track application the next day on 17 October 2018. We have carefully looked at this and compared it with the first application. The application adds that Mrs H had started deteriorating, she had become more tearful and could no longer have a proper conversation. It stated that she had become unsettled most of the time and was unaware of time and place. Mrs H’s appetite was decreasing and her depression medication had increased. Mrs H was doubly incontinent and at a high risk of falls, as she was trying to jump over the bed rails. Mrs H needed assistance with eating all her meals and she was showing signs of pain and muscle spasms in her legs, which she was taking painkillers for.

32. We have received clinical advice on this from our CHC nurse adviser. Our adviser stated that the evidence presented in both fast-track applications was very brief and the documents were not completed properly or signed by the referrer. The applications did not demonstrate that Mrs H had a rapidly deteriorating condition, as defined by Paragraph 217 of the National Framework.

33. Mrs H had undergone a full assessment for NHS CHC with completion of a DST in July 2018 (which found her not eligible for CHC). Our adviser stated the fast-track referrals showed no significant changes in her presentation and no evidence to support a rapid deterioration in Mrs H’s condition. Despite support and an explanation from the duty nurse (in the CHC Team) to the lead clinician at Mrs H’s care home, the resubmitted fast-track application provided no further evidence that she met the fast-track criteria.

34. Paragraph 227 of the National Framework states that the completed fast-track pathway tool should be supported by a prognosis, where available. However, strict time limits that base eligibility on a specified expected length of life remaining should not be imposed. It says ‘rapidly deteriorating' should not be interpreted narrowly as only meaning an anticipated specific or short time frame of life remaining and ‘may be entering a terminal phase’ is not intended to be restrictive to only those situations where death is imminent.

35. We have considered the letter from Mrs H’s Macmillan nurse dated October 2018, that says Mrs H’s recent scan of 10 September 2018 had been reviewed by her consultant oncologist and their opinion was that Mrs H’s cancer had progressed. It stated it was very difficult to predict a prognosis, as everyone is different, but short months would be a reasonable assumption. There was not a plan to scan her again as she was not fit enough for further treatment.

36. Our clinical adviser has told us the letter does not give a clear opinion regarding the prognosis for Mrs H. It does not describe why Mrs H may be at the end of her life. There is no clear definition of ‘short months’, as this is a statement open to interpretation and it does not give a clear indication of how ill Mrs H was.

37. Based on the clinical advice we have received, and the evidence we have reviewed, we consider the CCG adhered to the guidance given in the National Framework.

38. Although Mrs E is right to say the National Framework outlines that it is the appropriate clinician who determines that the individual has a primary health need and the CCG must therefore decide that the individual is eligible for CHC. An ‘appropriate clinician’ is defined as a person who is responsible for the diagnosis, treatment or care of the individual and it is a registered nurse or a registered medical practitioner who determines if the individual has a primary health need. Paragraph 237 of the National Framework outlines that there may be circumstances where a CCG receives a completed fast-track tool that appears to show the individual is not rapidly deteriorating and is not entering a terminal phase. In these circumstances, the CCG should urgently ask the relevant clinician to clarify the nature of the person’s needs and the reason for the use of the fast-track pathway tool.

39. This means that CCGs do not always have to grant CHC funding when they receive a fast-track application, and there is scope for the CCG to reject an application if the application has not shown that the individual is rapidly deteriorating or entering a terminal phase. The case management notes from the CCG show it adhered to the National Framework, as the CCG informed the clinical lead that the fast-track application needed to show where the deterioration was and documented that ‘the referrer…. who has discussed with the daughter and will send in a new fast-track to identify where the deterioration is’.

40. After having carefully considered the applications, and based on the clinical advice we have received, we have not seen anything wrong with the CCG’s decision to reject the fast-track applications as there was nothing outlined in them that showed Mrs H was rapidly deteriorating or entering a terminal phase. Although her diagnosis was outlined, this did not mean she may have been entering a terminal phase.

41. Whilst the applications described Mrs H’s overall needs and outlined that she had a terminal condition, we consider it was reasonable for the CCG to conclude the applications did not show she was rapidly deteriorating and entering a terminal phase. As such, we have not seen anything wrong with the CCG’s decision.

42. We understand it must have been very distressing for Mrs E to receive these decisions at what would have already been a very upsetting and emotional time.

The letter sent to the CCG from Mrs H’s neuro-oncology Macmillan nurse.

43. Mrs E says a letter from Mrs H’s oncology Macmillan nurse was sent with the fast-track applications and she has sent us a copy of this letter. Mrs E says the CCG never acknowledged this letter. The CCG told us it never received this letter. However, there is clear reference to the letter in the applications and in the CCG’s response to Mrs H on 9 September 2019.

44. The response stated that the duty nurse discussed the fast-track application and the letter from the oncology service it received, and it clinically assessed the required information on the same day (17 October 2018). This would indicate the CCG did receive the letter, despite it telling us it had not. On the balance of probabilities, and considering the evidence we have, we consider it is more likely the CCG had received this letter at the time when it was considering the fast-track applications.

45. Whilst the CCG’s explanation of having not received the letter contradicts the evidence we have seen; we do not consider this indicates a failing or had any impact on the CCG’s decisions. This is because the information contained in the letter had already been included in the application and was considered when reaching the decision not to award fast-track funding.

Conclusion

46. We have not seen any indications of maladministration with the CCG’s decision to not award CHC fast-track funding. It followed the guidance that is set out in the National Framework and explained that fast-track CHC funding was not awarded as there was nothing in the applications to show Mrs H was rapidly deteriorating or entering a terminal phase.

47. As we have not seen any indications of maladministration, we will not be taking any further action on Mrs E’s complaint.

1. We have carefully considered Mrs E’s complaint about the CCG. We have seen no indication that the CCG has done anything wrong.

2. We did not find any indications of service failure or maladministration with the CCG’s decision to reject both fast-track applications, and to not fund a fast-track Continuing Healthcare (CHC) package of care. We understand this may cause Mrs E some concern and we acknowledge that the CCG’s original decision, and the process she has followed since, have caused her upset and distress. We appreciate that this must have been frustrating and difficult news for Mrs E, particularly at such an upsetting and emotional time.

3. We will explain the reasons for our decision below.