13. CHC describes care provided over an extended period to meet physical or mental health needs arisen because of disability, accident, or illness. If someone meets the criteria to receive CHC funding, their care will be funded by the NHS.
14. It is our role to decide whether the ICB’s reasoning to not progress the CHC checklist to a full CHC assessment was line with the National Framework. We cannot question discretionary decisions when they have been made without maladministration. This includes decisions about eligibility for CHC funding.
15. We can only uphold a complaint about such decisions if there is some specific fault in the way that the ICB reached its decision.
16. For context, the first step to find out if a patient is eligible for CHC is for an initial checklist to be completed. This is conducted by a nurse, doctor, social worker or other qualified healthcare professional, who carries out a brief evaluation of the patients care needs. If the checklist results in a negative outcome, this can be appealed through the CHC appeals process and progressed to the further stages below.
17. The next stage of the appeals process (or because of a positive checklist) is a full CHC assessment, which is aided by completing a DST, which is a form that categorises the patient’s needs and grades them. This must be completed whilst carrying out the CHC assessment. Full assessments for CHC are undertaken by an MDT that is made up of a minimum of two professionals from different healthcare professions.
18. If the ICB concludes the patient is still ineligible for CHC, the patient or their representative can continue to appeal the decision to NHS England (NHSE). This is the final stage of the CHC appeals process, and the case can be put forward to an IRP by NHSE.
19. The role of the IRP is to consider the process used by the ICB and review the decision made by the ICB, whilst focusing on whether the National Framework for CHC has been correctly applied. The IRP will be made up of:
• an independent chair • a representative nominated by the ICB • a representative from a local authority • and there may also be a clinical advisor in attendance.
20. The IRP is completely impartial and will make the final decision on whether to uphold the ICB’s eligibility decision or not.
The ICB’s checklist
21. Mrs M complains about the checklist that was carried out on 16 May 2019 to assess her late mother, Mrs I’s CHC needs. Mrs M says the ICB did not follow the National Framework when completing the checklist, and by it refusing to progress it to a DST.
22. She says she was advised by the ICB her mother’s needs had not changed. To come to this conclusion, the ICB used the rationale of comparing the May 2019 checklist to the previous DST from January 2019.
23. As part of our investigation, we have contacted the ICB to obtain a more robust explanation as to why the May 2019 checklist was not progressed. It has said Mrs I was admitted to a community hospital for short term care when Mrs M asked for a reassessment of CHC eligibility.
24. A nurse then screened Mrs I on 16 May 2019 and provided the checklist to the ICB’s CHC team. The ICB says as per the National Framework, the CHC team reviewed the screening checklist against the DST that was completed in January 2019, and identified there were no additional needs which would have changed the DST eligibility.
25. The ICB says it informed the nurse who completed the screening that there were no changes to Mrs I’s needs, so it would not be progressing the checklist to an MDT. The ICB said it advised Mrs I’s family if they did not agree with the outcome of the original DST, they could ask for a review of the decision via the appeals process.
26. The ICB have said it has reviewed its records and feels that is has followed the NHSE CHC checklist guidance (2018) in this case. The ICB said NHSE, as part of the independent review, did not identify any issues for it to address, and therefore, it would not be offering to carry out a further review of the case.
27. Lastly, during a meeting with the ICB as a result of our provisional views report, the ICB advised us there was a Standard Operating Procedure (SOP) in place at the time the checklist was carried out. It explained this SOP contained guidelines that allowed the ICB to ‘cancel’ checklists if it feels there had not been a change in need.
28. As requested, the ICB provided us with two SOP’s. One of these was in place at the time the checklist was carried out, and its most recent SOP. However, none of these SOP’s contain any information or guidance on cancelling CHC checklists. As such, we have not been able to use this as part of our consideration.
29. From viewing Mrs I’s material evidence, we can see she was sent an email from Bury Clinical Commissioning Group (CCG) on 17 November 2021. This stated the CHC team declined the checklist submitted on 16 May 2019 as there was no material change in need.
30. The National Framework states a checklist should not be carried out if ‘It has previously been decided that the individual is not eligible for NHS continuing healthcare and it is clear that there has been no change in needs.’ However, this is to be decided before a checklist has been carried out, and not afterwards. Also, the original DST was still going through the appeals process.
31. Whilst the ICB has said the IRP did not identify any issues in its processes, NHSE was not looking at the checklist carried out on 16 May 2019, and only the DST carried out on 31 January 2019. As such, we would not expect it to comment or make recommendations on the second checklist. However, the IRP does acknowledge the current appeals process should not stop Mrs M from requesting further CHC assessments.
32. When a further checklist is completed, this should be a fresh look at the patient’s needs and scorings, as the patient’s needs may have changed. If the ICB feels the patient’s needs have remained the same, this should have been identified before the second checklist was completed.
33. The National Framework states that:
‘A full assessment for NHS continuing healthcare is required if one of the following criteria is met: • 2 or more domains are selected in column A • 5 or more domains are selected in column B, or one is selected in A and 4 in B • one domain is selected in column A in one of the boxes marked with an asterisk (meaning those domains that carry a priority level in the decision support tool) with any number of selections in the other 2 columns’
34. From viewing the 2019 checklist, we can see Mrs I scored the following:
• 2 x A Domains • 5 x B domains • 4 x C domains
35. The National Framework says:
‘A negative checklist means the individual does not require a full assessment of eligibility and they are not eligible for NHS Continuing Healthcare.’
36. The above shows Mrs I’s checklist should have been progressed as it was positive. Also, the checklist identifies and acknowledges Mrs I’s deterioration, and changes in her needs.
37. We think we can see the direct impact of using the original DST and comparing this to the May 2019 checklist, as the primary source of evidence to determine if Mrs I needed a full assessment. The ICB have solely based its decision on the information recorded in the earlier DST, despite the May 2019 checklist indicating full CHC screening was necessary.
38. We think the ICB’s mistakes and failure to adhere to the National Framework have had a detrimental impact on Mrs I not being fully assessed for CHC because of the second checklist.
Family not informed of the checklist result and appeals process
39. Mrs M says ICB failed to inform her of the checklist decision in writing or provide any information on how to challenge the decision.
40. The National Framework says that:
‘Whatever the outcome of the checklist – whether or not a referral for a full assessment of eligibility for NHS Continuing Healthcare is considered necessary – the outcome must be communicated clearly and in writing to the individual or their representative, as soon as is reasonably practicable. This should include the reasons why the checklist outcome was reached. Normally this will be achieved by providing a copy of the checklist’.
41. The ICB says it disputes Mrs M did not know the outcome of this checklist or the appeals process, as she did appeal the decision.
42. It says the appeal to NHSE was not successful as it upheld the decision that Mrs I was not eligible for CHC. The IRP is carried out externally to the CHC team and is an independent review looking at the process and decision making regarding the case.
43. From viewing Mrs M’s material evidence, we can see she was sent an email from Bury CCG on 17 November 2021 stating the CHC team declined the checklist submitted on 16 May 2019 as there was no material change in need.
44. We can see this came after a great deal of communication from Mrs M to the ICB, asking why the checklist was rejected. However, we can see she received limited responses and information back.
45. We can see that on 17 May 2019, the ICB have recorded that Mrs M requested a further MDT because of the recent checklist. It says the CHC team reviewed the request and felt there was no evidence that Mrs I’s needs had changed and advised her to appeal the original MDT if she was unhappy with the outcome.
46. From viewing the available evidence, we cannot find anything to suggest that Mrs M was provided with the checklist result in writing, or that she was given any information on how to appeal this checklist, and instead, was advised to continue with the original appeal instead.
47. Again, the 2019 checklist should have been a separate consideration, and it should have been explained to Mrs M that she was able to appeal two separate periods of care.
Impact
48. Mrs M has said the ICB’s mistakes have financially disadvantaged her mother’s estate, as she had to pay for her own care. Also, the entirety of the CHC process and complaints process, which has been ongoing for several years, has caused her and her family a great deal of distress and upset. She feels she has been unable to grieve her mother.
49. As a result of the failings, it is likely that Mrs M has not had a robust and evidence-based consideration of her claim that Mrs I should have screened in for a full assessment of her eligibility, because of the second checklist.
50. Due to the claimed failings, this has caused distress for Mrs M and her family. Mrs I’s estate has also been impacted.
51. We think if the ICB had not made the mistakes we have identified above, Mrs I may have been fully assessed for CHC. We cannot say whether Mrs I would have been found to be eligible for CHC because of the second checklist. This is because that decision can only be made after a full assessment, which looks at the person’s needs in much more detail than the checklist assessment. However, we think she should have had the opportunity for a full consideration of her eligibility because of the second checklist.
52. We have made provisional recommendations for what the ICB should do to put this complaint right for Mrs M, which is what we have discussed next.
53. As an outcome of her complaint, Mrs M would like the ICB to reconsider its decision, implement service improvements, and provide a financial remedy.
54. From speaking to Mrs M, it is clear that watching her mother continuing to deteriorate has been an incredibly upsetting experience. We are sorry that she had to go through this for a long period of time, and the impact that this continues to have on her.
55. We understand the experience she has had, whilst trying to progress the second checklist, has added another layer of stress throughout an already difficult time. We are pleased Mrs I continued to be cared for throughout this time, although it was not funded by CHC.
56. From taking everything into consideration, we are unable to say that even if the checklist had been progressed, this would have been upheld and Mrs I would have been considered or found eligible for full CHC funding. Mrs M may have also found this process upsetting and distressing regardless of the result, and Mrs I’s estate may still have been impacted.
54. As such, we cannot say whether the appeals process would have been successful if the checklist was progressed. We are therefore unable to link the impact and hold the ICB accountable for this. As a result, we do not feel a financial remedy is appropriate. This does not detract from the upset that we know Mrs M has experienced.