South Devon Healthcare NHS Foundation Trust

3. Mr M complains that Torbay and South Devon NHS Foundation Trust (Trust) declined to do a full continuing healthcare (CHC) assessment for his late mother, Mrs M, for the period June 2019 to June 2021. He disagrees with the Trust’s checklist scores in the nutrition, continence, communication, cognition and behaviour domains. He feels the Trust was incorrect to say his mother’s needs were not significant enough to do a full assessment.

4. Mr M says his mother should have screened in for a full assessment and her estate has been financially disadvantaged as she had to pay for her own care. He has lost faith in the Trust.

5. Mr M wants the Trust to complete a retrospective review.

6. Continuing healthcare (CHC) is a package of health and social care that is funded by the NHS for people who have a primary health need. The first part of the CHC is the completion of a checklist. This looks at a person’s care needs in 12 care areas. These are what we refer to as the domains. Each domain is broken down into scores that range from A (the highest) to C. The person screens in for a full assessment of eligibility for CHC if they have certain combinations of A and B scores.

7. A person or their representative can ask for a consideration of their eligibility for CHC during a past period, as long as that period has not already been assessed. If the person is retrospectively found eligible for CHC, the NHS may reimburse any costs they paid towards their care.

8. Mrs M had a number of health conditions, including Alzheimer’s disease. She lived in a care home.

9. The family’s representatives, Compass CHC, asked the Trust to consider Mrs M’s eligibility between September 2019 and when she died August 2023. The Trust did checklists in June 2024 and Mrs M screened in for a full assessment for the period July 2021 to August 2023.

10. She did not screen in for a full assessment for the period June 2019 to June 2021. It is that period we are considering.

11. Compass CHC complained about that decision. The Trust said there was no rationale to overturn the outcome.

14. Before we decide if we should do 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 in the way the Trust reached its decision not to proceed to a full assessment for CHC.

15. Mr M says the Trust did CHC checklists in June 2024 for the period between June 2019 and June 2020 (checklist 1 – scoring was 0A, 2B, 9C). It did a second checklist for the period June 2020 to June 2021 (checklist 2 - scoring was 1A, 3B, 7C). Neither checklist led to a full assessment.

16. Mr M says his mother had a primary health need and her needs were significantly underscored. He says his representatives, Compass CHC, provided evidence which clearly indicated the scoring met the threshold criteria set out at paragraph 114 of the National Framework (which says there may, very occasionally, be exceptional circumstances where a full assessment of eligibility for CHC is appropriate even though the individual does not apparently meet the indicated threshold). He disputes the scoring in five of the domains.

17. We have looked at the Trust’s explanations, GP notes, care home records and the supporting information Mr M’s representatives supplied below in detail to see whether the Trust’s negative checklist decisions are supported by the evidence.

Nutrition

18. Mr M disagrees with the score of C in checklist 1. He feels the clinical evidence evidenced a score of A.

19. He says his mother experienced significant, unplanned weight loss, losing 10kg between September 2020 and January 2021, and a further 8kg by March 2021, placing her at high risk of malnutrition. During the period of checklist 1, she was prescribed Fresubin supplements, which were later discontinued after her weight was deemed within the normal range and she declined them. He disputes this assessment, as he feels that the initial prescription indicates her nutritional risk. Following the discontinuation, her continued and substantial weight loss showed that her nutritional status was not stable and that she remained at risk throughout both checklist periods.

20. The Trust said there was no significant unplanned weight loss, and Mrs M was not at high risk of malnutrition. She need encouragement and her intake could be variable. It recognised that her risk increased and there was weight loss during following months, however it acknowledged the higher attributed level within checklist 2 (June 2020 to June 2021).

21. A score of C is described in the Checklist Guidance as:

‘Able to take adequate food and drink by mouth to meet all nutritional requirements.

OR Needs supervision, prompting with meals, or may need feeding and/or a special diet (for example to manage food intolerances/allergies).

OR Able to take food and drink by mouth but requires additional/supplementary feeding.’

22. A score of A is described in the Checklist Guidance as:

‘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 an identified eating disorder.

OR Problems relating to a feeding device (e.g. PEG) that require skilled assessment and review.’

23. We can see the evidence shows Mrs M was able to eat and drink well during the first period and could choose what she wanted to eat and drink, although she would often forget what she had asked for and needed reminding. She would usually eat between a quarter and all her meal and she would drink well.

24. The daily care records show that she ate a normal diet during the first period, ranging from corned beef pie to fish and chips, sandwiches and soups. Mrs M was also prescribed Foodlink supplement drinks as a nutritional supplement. This later stopped as she took enough oral nutrition. The GP records state she was at a healthy weight. We note she would lose her appetite when she was unwell with an infection.

25. The score of C recognised that although Mrs M was able to take food and drink, she also required supplementary feeding to maintain a healthy weight. By the time she was not eating or drinking before her death, she was eligible for CHC (between June and August 2023).

26. We cannot see that Mrs M was nutritionally at risk or had significant weight loss or gain, as Mr M says. His own evidence indicates no unintended weight loss during the period of checklist 1. She also did not take a long time to eat or need feeding through a percutaneous endoscopic gastrostomy (PEG - a tube inserted through the skin into the stomach for feeding and medication). This is the evidence the Trust would have needed to see for a higher score.

27. We can see no indications of a failing in how the Trust considered this domain. We think it considered Mrs M’s nutritional needs in line with the Checklist Guidance.

Continence

28. Mr M disagrees with the score of C in checklist 2 and feels a score of B was more appropriate.

29. He says the clinical evidence shows his mother had frequent double incontinence and not ‘occasional’. The records document multiple episodes between January and April 2021, including instances of faecal incontinence with loose stools. He also notes she required pads, indicating ongoing management needs. He says her continence care was routine but needed monitoring to reduce risks, aligning with a B score, and a lower core does not adequately reflect double incontinence.

30. The Trust noted that Mrs M was continent of urine and faeces. It acknowledged that episodes of incontinence can be difficult for the individual and at times distressing. Episodes will also lead to an increase in the care provided on these occasions. However as supported by the rationale within checklist 2, in the context of CHC and the criteria required to score a B rather than a C in this domain, it was reasonable to describe this as occasional incontinence.

31. A score of C is described in the Checklist Guidance as:

‘Continent of urine and faeces.

OR Continence care is routine on a day-to-day basis.

OR Incontinence of urine managed through, for example, medication, regular toileting, use of penile sheaths, etc.

AND Is able to maintain full control over bowel movements or has a stable stoma or may have occasional faecal incontinence/constipation.

32. A score of B is described in the Checklist Guidance as:

‘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.’

33. We cannot see that Mrs M was routinely incontinent of bladder and bowel during the second period. The care notes show she had occasional urinary incontinence and continence pads were made available for care, comfort and dignity but Mrs M did not want to wear them.

34. She was aware of her need to go to the toilet and would tell the carers. She experienced episodes of constipation and the care staff asked the district nursing team to intervene and give advice.

35. The score of C describes that she had some difficulties in maintaining complete continence and needed assistance and monitoring to minimise problems.

36. We cannot see that Mrs M’s continence care needed monitoring to reduce any associated risks. This is the evidence the Trust would have needed to see for a higher score.

37. We can see no indications of a failing in how the Trust considered this domain. We think it considered Mrs M’s continence needs in line with the Checklist Guidance.

Communication

38. Mr M disagrees with the score of C in both checklists and feels a score of B was more appropriate.

39. He says his mother suffered from dementia. She was unable to understand her needs. Although she was able to verbally communicate, her communication was not always reliable. He says there is a vast difference between being able to talk and reliably communicate needs. She required carers to anticipate her needs at times.

40. The Trust said the records indicated that Mrs M was able to make her needs known and to communicate preferences. Due to her cognitive impairment, special effort was needed at times to ensure her needs were accurately interpreted. There was no additional evidence provided and therefore no cause to consider a higher attributed need within either checklist.

41. A score of C is described in the Checklist Guidance as:

‘Able to communicate clearly, verbally or non-verbally. Has a good understanding of their primary language. May require translation if English is not their first language.

OR Needs assistance to communicate their needs. Special effort may be needed to ensure accurate interpretation of needs or additional support may be needed either visually, through touch or with hearing.’

42. A score of B is described in the Checklist Guidance as:

‘Communication about needs is difficult to understand or interpret or the individual is sometimes unable to reliably communicate, even when assisted. Carers or care workers may be able to anticipate needs through non-verbal signs due to familiarity with the individual.

43. We can see no evidence that Mrs M had difficulties with her communication. The care notes state she could tell the care staff when she felt unwell and she could communicate what she wanted to wear and eat. Her memory caused her to be forgetful, and she required prompting and reminders.

44. She was able to hold a conversation and able to express what she wanted to do and what her wishes were. The care records described her as articulate and smart. They also note that she was not as ‘chatty’ when she was ill.

45. The score of C recognises that Mrs M required special effort to ensure that what she was saying was interpreted correctly.

46. There was no indication that she was unable to reliably communicate her needs at any time and in any way, even when assisted. This is the information the Trust would have needed to see to give a higher score throughout both checklist periods.

47. We can see no indications of a failing in how the Trust considered this domain. We think it considered Mrs M’s communication needs in line with the Checklist Guidance.

Cognition

48. Mr M disagrees with the score of B in both checklists and feels a score of A was more appropriate.

49. He says his mother suffered from dementia and had an associated cognitive impairment which included confusion and poor short-term memory. She was also disorientated to time and place. He says that no level of need below the A descriptor captures disorientation to time and place. She had poor insight into her needs and risks. This is further evidenced by her tendency to scratch her legs, despite the severe consequences of such behaviour to her skin integrity. He says she was unable to make her own decisions, and he had lasting power of attorney.

50. The Trust said the checklists record Mrs M gave informed consent. Information in support of the B score can also be found within the communication domain, which details Mrs M's ability to communicate her needs and preferences.

51. A score of B is described in the Checklist Guidance as:

‘Cognitive impairment (which may include some memory issues) that requires some supervision, prompting and/or assistance with basic care needs and daily living activities. Some awareness of needs and basic risks is evident.

The individual is usually able to make choices appropriate to needs with assistance. However, the individual has limited ability even with supervision, prompting or assistance to make decisions about some aspects of their lives, which consequently puts them at some risk of harm, neglect or health deterioration.’

52. A score of A level of need is described in the Checklist Guidance as:

‘Cognitive impairment that could for example include frequent short-term memory issues and maybe disorientation to time and place. The individual has awareness of only a limited range of needs and basic risks. Although they may be able to make some choices appropriate to need on a limited range of issues, they are unable to do so on most issues, even with supervision, prompting or assistance.

The individual finds it difficult, even with supervision, prompting or assistance, to make decisions about key aspects of their lives, which consequently puts them at high risk of harm, neglect or health deterioration.’

53. We can see the care records describe Mrs M as being ‘fiercely independent’ and that she understood she needed help to maintain activities of daily living.

54. However, while she struggled with key decisions, as Mr M says, she was able to make choices about clothes and food. She was unable to retain information and required prompts and reminders. She could become muddled and would say that she had to go and pick the children up from school.

55. The score of B recognised Mrs M’s need for some supervision, prompting and reminders. It also recognises that she had limited ability to make major decisions.

56. There was no indication in the daily records that she was actually disoriented to time and place as Mr M says or that she found it difficult, even with supervision, prompting or assistance, to make decisions about key aspects of her life, which put her at high risk of harm, neglect or health deterioration. This is the information the Trust would have needed to see to give a higher score throughout both checklist periods.

57. We can see no indications of a failing in how the Trust considered this domain. We think it considered Mrs M’s cognition needs in line with the Checklist Guidance.

Behaviour

58. Mr M disagrees with the score of C in both checklists and feels a score of B was more appropriate.

59. He says that although checklist 2 recorded several refusals of care, the Trust incorrectly concluded she was generally compliant and making capacitated decisions. He maintains she lacked capacity to understand her needs and risks, as shown by repeatedly scratching her legs despite skin damage risk and refusing nutritional supplements, which contributed to weight loss. He states she was not consistently compliant with care. While her behaviour followed a predictable pattern and was managed by carers, he states that without their intervention it would have led to skin breakdown, malnutrition, and deterioration. He therefore believes her challenging behaviour was not properly recognised, leading to her needs being underestimated.

60. The Trust said Mrs M could at times make her wishes known. It was clear that her irritated legs were a source of concern and that she would often scratch them, leading to a need for skin care and district nursing oversight. She would often refuse to have skin cream applied to her legs and she is likely to have had capacity to refuse such interventions, as the records showed her ability to consent to district nurse input. The care home documented no history of displaying any concerning behaviour.

61. A score of C described in the Checklist Guidance as:

‘No evidence of ‘challenging’ behaviour.

OR Some incidents of ‘challenging’ behaviour. A risk assessment indicates that the behaviour does not pose a risk to self, others or property or create a barrier to intervention. The individual is compliant with all aspects of their care.’

62. A score of B is described in the Checklist Guidance as:

‘Challenging’ behaviour that follows a predictable pattern. The risk assessment indicates a pattern of behaviour that can be managed by skilled carers or care workers who are able to maintain a level of behaviour that does not pose a risk to self, others or property. The individual is nearly always compliant with care.’

63. We can see no evidence to support that Mrs M had behaviour that posed a challenge to her receiving care. She was described as placid and pleasant in the care records. She tended to remove the dressings from her legs and would scratch the skin, but this did not cause a problem, and the dressings were easily replaced. Her care records show that she was compliant with her care interventions and was aware that she needed help for daily care needs and activities. Any slight change in Mrs M’s behaviour usually indicated that she was developing an infection, such as a urinary tract infection (UTI).

64. The score of C indicated that generally, Mrs M did not display any untoward behaviour.

65. There was no indication that she posed challenging behaviour that was managed by skilled carers to maintain a level of behaviour that did not pose a risk to self, others or property. This is the information the Trust would have needed to see to give a higher score throughout both checklist periods.

66. We can see no indications of a failing in how the Trust considered this domain. We think it considered Mrs M’s behaviour needs in line with the Checklist Guidance.

Conclusion

67. We know Mr M feels the Trust was incorrect to say his mother’s needs were not significant enough to do a full assessment.

68. We can see Mrs M did not require a full consideration of CHC. The evidence indicates her care could be delivered by carers working in a residential care setting, supported by the community nursing service and the GP. The nature of her overall presentation was of a slow decline in health due to her dementia condition and the ageing process.

69. Our decision does not take away from the account Mr M has given us, or the challenges Mrs M faced. We appreciate she was reliant on the care she received at the care home. The Trust’s conclusion that her care did not indicate the need for a full assessment appears to be in line with the National Framework and Checklist Guidance.

1. We have carefully considered Mr M’s complaint about how the Trust looked at his request for it to complete a full continuing healthcare (CHC) assessment for his late mother, Mrs M. We have seen no indication that anything went wrong when it made its decision.

2. We know Mr M feels strongly that his mother should have been eligible for CHC. We have reviewed all the relevant evidence, and we are satisfied the ICB acted in line with the National Framework for continuing healthcare and the Checklist guidance.