Right to appeal
19. 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 went seriously wrong when the ICB made its decision not to reinstate the appeal.
20. Whether or not an individual is eligible for NHS continuing healthcare funding is a discretionary decision. It is our role to decide whether the ICB acted in line with the National Framework when it communicated with Mrs N’s family and representative. The National Framework sets out the principles and processes ICBs’ and NHS England should follow when communicating about the CHC process.
21. Mrs Z and Mrs P raise their complaint following the decision made about their mother’s ineligibility of CHC funding in March 2023, the family were not given the right to appeal.
22. During this review, Mr N, the husband of Mrs N was present during the meeting. Mrs Z and Mrs P say he was a vulnerable and an elderly adult who was unsure of the consequences of the removal of the funding.
23. Following the meeting, written correspondence was not sent to Mr N or to the daughters who have a lasting power of attorney (LPA) for property and finance for Mrs N.
24. Subsequently, correspondence advising of the decision to remove funding was sent direct to the care home. The family say the information was not passed on to them until there had been a change in management at the care home and the appeal date had passed, six months later.
25. In its email response of 21 October 2024, the ICB explains Mr N was present in the MDT meeting, and he was informed of the recommendation. He also contacted All Age Continuing Care (AACC) several times concerning alternative funding arrangements.
26. On receipt of the outcome letter in September 2023, the ICB says Mr N did not appeal this decision, and it is now a further 12 months since he was in receipt of this letter.
27. The evidence submitted by the family shows the letter dated 22 February 2023 is addressed fully to Mrs N at the care home. It gives clear details of the ceasing of NHS CHC funding, but states Mrs N will be eligible for NHS-funded Nursing Care Contribution of £209.19 per week paid directly to the Nursing Home in recognition of her nursing care needs.
28. The letter also tells Mrs N the decision can be appealed and the time frame for this appeal is six months from the date of the letter.
29. Advisory bodies such as carehome.co.uk and care to be different affirm the time limit to make an appeal regarding NHS CHC decisions is six months only.
30. There is evidence to show Mr N was aware of the recommendation made as he was present at the meeting. It also shows Mr N sought advice from others as to whether there were other funding methods for his wife’s care.
31. The letter was passed to the family in September 2023, and the evidence shows the ICB did not received any correspondence from the family regarding the outcome of the assessment until August 2024. This is almost a year since the family had received the outcome.
32. Our adviser says if the care home delayed in passing the letter on to Mr N, it is the care home the family should query. We cannot comment as to what happened in this case. Our adviser also says the ICB may be willing to re-examine the case if it received robust reasons and apologies from the care home which proves it was its error it did not pass on the letter.
33. We asked the family to provide clarification as to why it took them almost a year to contact the ICB. The family provided evidence to show they were engaging with the care home trying to establish what had happened and tried to resolve the matter themselves. The family also thought any liaising with the ICB would be done through the care home management team. The family formally initiated advocacy support in September 2024.
34. While we recognise the importance of liaising with the care home to find a solution, the evidence shows Mr N’s awareness of the funding ceasing at the meeting, and the letter was passed to the family in September 2023. The letter outlined to notify the appeals co-ordinator if the family wished to dispute the decision. Once the family received the letter, they had sufficient opportunity to contact the ICB, and no significant barrier has been identified which prevented their earlier engagement.
35. As the nursing home delayed in passing the letter on to Mr N, we cannot fault the ICB as it had sent the letter with the details of the decision, and method of appealing. We understand this has been an incredibly frustrating process for the family, and we do not wish to undermine their experience with our findings.
Error sending the letter and representatives
36. The family complain the decision letter was sent to Mrs N, who suffers from cognitive impairment, and she scores ‘severe’ in this domain.
37. The letter sent to Mrs N was also sent to the address with no name of the care home, which was an incomplete address. Because of this, the family say the letter was not passed onto them denying them of the option to appeal the eligibility decision.
38. The ICB says it cannot see any exceptional circumstances to consider an eligibility decision made in February 2023 where the outcome letter was forwarded to family by the care home in September 2023 but not acted on and no appeal was received at that time.
39. The family also say when it asked the ICB to reconsider its error in sending the outcome letter to Mrs N and allow the appeal, the ICB did not follow the rules as laid out in the National Framework surrounding representatives which says in paragraph 8.7:
‘There are also circumstances where it would be acceptable for a third party who is assuming responsibility for acting in a person’s best interests (but may not have the formal authority of having a Lasting Power of Attorney (LPA) (Health and Welfare) or Court Appointed Deputy (health and welfare) to legitimately request information. In deciding whether to share personal/clinical information regarding an individual who lacks the relevant capacity with a family member, or anyone purporting to be representing the individual, the information holder must act within the following principles:
• any decision to share information must be in the individual’s best interests; • the information which is shared should only be that which it is necessary in order for the third party to act in the individual’s best interests.’
40. The ICB says in its email response of 5 November, the LPA provided is for property and finance, and it would not send health records unless an LPA for health and welfare existed or were present at the DST. Neither daughter was present at the DST.
41. Without the evidence of the envelope it was sent in, we are unable to comment on whether the outer envelope was addressed correctly.
42. Paragraph 8.7 of the National Framework relates to the identification and involvement of an appropriate representative where a request has been made, or where an individual is acting on behalf of a person in the decision-making process. It does not explicitly request the ICB to proactively share decision letters with family members who have not been identified as representatives and who have not requested information.
43. We cannot see any evidence to suggest the family requested the decision letter or asked the ICB to recognise them as representatives at the time the decision was issued. We understand Mr N was at the meeting, and the decision was shared with him. As such, paragraph 8.7 is not applicable as it does not focus on the onward sharing of information in the absence of a request or a recognised representative.
44. We also know the family complain the letter was addressed to Mrs N who scored ‘severe’ in cognition. Our adviser says in the absence of information regarding a LPA, it is usual practice for all correspondence to be sent to the individual, which is following the Mental Capacity Act (MCA). The MCA (2005) legislation in section 1(2) states ‘a person must be assumed to have capacity unless it is established that he lacks capacity’.
45. The National Framework also says in paragraph 89, ‘a third party cannot give or refuse consent for any physical intervention/examination, on behalf of a person who lacks the relevant capacity, unless they have a valid and applicable Lasting Power of Attorney (Health and Welfare) or they have been appointed as a Deputy (Health and Welfare) by the Court of Protection in which case they will need to make the 'best interests' decision.
46. Paragraph 95 of the National Framework states ‘Although the decision-maker must take account of the views of relevant third parties, those consulted (including family members) do not have the authority to consent to or refuse consent to the actions proposed as a result of the 'best interests' process. The responsibility for the decision rests with the decision maker, not with those consulted. Where there is a difference of opinion between the decision-maker and those consulted, every effort should be made to resolve this informally. However, this process should not unduly delay timely decisions being made in the person’s best interests’.
47. The above guidance clarifies third parties cannot give or refuse consent and family members do not automatically have authority to act on behalf of an individual unless they hold a valid LPA, or other legal authority.
48. In this case, we can see there was no LPA held in health and welfare, and as such the family were not authorised decision makers. While this did not prevent the family from contacting the ICB once they became aware of the decision in September 2023, the guidance is relevant as it explains why they were not treated as formal representatives at the time the decision was made, and why the ICB was not obligated to correspond with them directly.
49. Overall, we cannot say the ICB got anything wrong here when addressing the letter to Mrs N.
50. We appreciate the concerns the Mrs Z and Mrs P have raised about. We also recognise this has been a challenging time for the family as their complaint has gone through a frustrating process. Our decision does not take away the importance of the family’s complaint, and our awareness of the concern and distress the care home fees has caused for the family.