Surrey and Sussex ICB

5. Ms B complains about NHS Sussex Integrated Care System (ICS) decision to not carry out a retrospective review of her mother, Mrs D’s eligibility for NHS Continuing Healthcare (CHC) funding for the previously unassessed period of care between 1 April 2019 to 2 December 2022.

6. Ms B says as a result her mother was not eligible for CHC funding and had to pay care home fees.

7. Ms B wants the ICS to reconsider its decision.

8. On 2 December 2022 the ICS completed a decision support tool (DST). A DST is a document which helps to record evidence of an individual’s care needs to determine if they qualify for CHC funding. CHC is NHS funding provided to cover the health and social care needs of people with complex health needs. Mrs D was found not eligible for NHS continuing healthcare (CHC) funding. She was eligible for funded nursing care.

9. On 4 February 2023 Mrs D died.

10. On 18 December 2023 Ms B via her representative, Compass CHC (the representative) asked the ICS for a review of a previously unassessed period of care (PUPoC) from April 2019 to 4 February 2023.

11. On 11 January 2023 the ICS said the period for a review of the unassessed period of care was 3 December 2022 to 4 February 2023. On 19 January the representative asked it to consider the additional date from April 2019 to 2 December 2022. On 22 February 2024 the ICS declined the request.

15. Ms B complains the ICS did not carry out a retrospective review of her mother’s eligibility for CHC funding for the previously unassessed period between 1 April 2019 to 2 December 2022. She disagrees with the ICS’s view that the evidence did not demonstrate a significant change in her mother’s needs during this period. She says the DST completed on the 2 December 2022 was not appropriate to determine her mother’s eligibility from 2019.

16. The ICS said it agreed to carry out a review from 3 December 2022 to 4 February 2023. It considered all the evidence submitted to it and determined that an assessment should not be carried out for the period 1 April 2019 to 13 November 2022. It said the evidence did not show Mrs D’s needs were significantly different to the those assessed in the DST assessment it carried out on 2 December 2022. As a result, it felt there was no rationale for it to carry out a review of the earlier period.

17. The records show on 18 December 2023 the representatives requested a retrospective review of the period April 2019 to 4 February 2023. On 10 January 2024 the ICS reviewed the information. It said the unassessed review period was 3 December 2022 to 4 February 2023. It said if concerns were raised regarding the appeal of the DST undertaken previously it could look to manage this if eligibility is recommended following the PUPoC review.

18. On 11 January 2023 the ICS said the period for review was 3 December 2022 to 4 February 2023. On 19 January the representative asked it to consider the additional dates from April 2019 to 2 December 2022. On 23 January 2024 the ICS said it would not reassess the DST period and asked if the representative wished for a specific date in April 2019 for the review. The representative asked the ICS to carry out a review from the 1 April 2019 to 2 December 2022 as an unassessed period of care in addition to 3 December 2022 to 4 February 2023.

19. On 22 February 2024 the ICS discussed the case and decided the correct PUPoC period was 3 December 2022 to 4 February 2023. It apologised for the previous communication being incorrect regarding the appeal and said if eligibility was recommended as a result of the PUPoC then it would look at the earlier period as requested. On the same day it advised the representative of this and declined the request for the earlier period to be considered. The PUPoC review would be from 3 December 2022 to 4 February 2023.

20. On 11 March 2024 the representative sent the ICS an email and requested the PUPoC be extended. On 14 March the ICS said it had again reviewed the evidence and the PUPoc period it suggested was suitable and said if the representative accepted this it could start work soon. Alternatively, the representative could withdraw its application.

21. On 19 March 2024 the representative complained to the ICS about its decision. On 18 April 2024 the ICS sent the representative its written response. It said a DST was completed for Mrs D on 2 December 2022 and there was no evidence she had a primary health need. It said furthermore, no evidence had been provided to indicate Mrs D’s needs were substantially different during the period prior to the DST. It said if the representative held any additional evidence which it believed would indicate a significant change in the needs between 1 April 2019 to 13 November 2022 it would be happy to review this.

22. On 1 May 2024 the representatives sent the ICS a letter with its evidence. On 16 May 2024 the ICS said it had reviewed the information provided and compared it with the DST dated 2 December 2022. It said the evidence does not demonstrate a significant change in Mrs D’s needs during the period. As a result, it was unable to proceed with an assessment for the period as requested. It said it would proceed with a retrospective review of the period 3 December 2022 to 4 February 2023.

23. On 17 June 2024 the representative sent a further letter with its comments. On 17 July 2024 the ICS provided its further response. It said the information provided did not demonstrate a change in need during the period 1 April 2019 to 2 December 2022. It continued to offer a review of the unassessed period from 3 December 2022 to 4 February 2023. It directed the representative to us.

24. On 18 October 2024 the representative sent the ICS comments on the DST weightings. It said Mrs D should have been eligible for CHC funding from 1 April 2019 until 13 November 2022 and 3 December 2022 until 4 February 2023. On 29 October 2024 the ICS completed a DST for the period 2 December 2022 to 4 February 2023. The outcome was Mrs D was not eligible for CHC during the review period. On 5 November 2024 the ICS sent the representatives its outcome decision.

25. The PUPoC guidance says:

‘Identifying whether a PUPoC request is appropriate

Once the ICB has determined that it is the responsible commissioner for the PUPoC request, it should complete the following checks to ensure the PUPoC request is appropriate and needs to be investigated further.

If there was a consideration of eligibility for NHS CHC during the past period of care

If an ICB finds evidence that the individual had been previously considered for NHS CHC - for example: • via NHS CHC checklist • where a decision was made not to undertake an NHS CHC checklist or assessment then the period was considered at that time and no further assessment is necessary.

Where there is written evidence that the individual, or a third party authorised to act on behalf of the individual, refused consent for an assessment or screening for NHS CHC, the ICB may choose not to accept a new request for assessment of the same period - provided the ICB took reasonable steps to carry out an assessment in the circumstances, at that time.

The steps that the ICB should reasonably have been expected to take will depend on the individual circumstances.

If any periods are not covered by the NHS CHC checklist and a change in need has been identified, then this should be treated as a potential PUPoC and investigated further. For example, if an NHS CHC checklist was carried out at a point in time and following this there was an identified change in need which was not captured by any subsequent checklist or assessment, then this should be treated as a potential PUPoC and investigated further.’

26. The eligibility for NHS CHC funding is not a lifelong eligibility. Individuals can move in and out of CHC funding depending on their needs at a specific period in their life. Assessing a PUPoC does not mean there is agreement the individual was eligible for CHC funding but it acts as proof that the time was correctly considered using robust evidence. If this is done correctly then ICS/ICBs can conclude with certainty it has followed the PUPoC guidance for dealing with requests for assessments of PUPoC.

27. The records show the period from 1 April 2019 to 2 December 2022 Mrs D did not undergo assessment for a full consideration of her needs via completion of a checklist. Therefore a DST by a multi-disciplinary team (MDT) was not triggered. As a result, Mrs D’s care needs during this period have not been identified.

28. We can see the care home records cover the period of care from 1 December 2019. There are no records submitted for the period before this. The daily care records record tasks completed during the 24-hour span and the individual’s response to interventions. They do not show evidence of how the care was assessed, the risk assessments involved and the plans to meet the care needs.

29. Our adviser says the care records from 1 December 2019 onwards are not robust or detailed enough to support the assertion that Mrs D did not have care needs that should be met by either NHS CHC funding or funded nursing care. It would be reasonable to accept the ICS’ rationale that there had not been a significant change in Mrs D’s presentation if they had been asked to consider a further period of some weeks to a few months. The period requested was for three years and eight months. An individual’s needs can rapidly deteriorate at any time. This period warranted investigation.

30. The records show the ICS asked the representative if it held any additional evidence which it believed would indicate a significant change in need for the period 1 April 2019 to 13 November 2022. It said its PUPoC team would be happy to review this and consider if it indicated a significant change which indicated a need for a further assessment. The records show the representative requested the period be considered. The ICS then denied the request and denied the offer had been made.

31. The ICS told us, ‘If a period of time was found not eligible for CHC then (unless the family or in this case Compass Continuing Care) could evidence a significant presentation of need previous to this period, then CHC teams did not request records and review the periods prior to the assessed decision of not eligible for CHC. Therefore. in this case the AACC team have confirmed that there are no records held for the period they did not review (1 April 2019 – 2 December 2022).’

32. Our adviser considered the advice published by NHSE and has found nothing that supports the ICS’ rationale. We can see the ICB accepts it has no care records and did not request any for the period of care between April 2019 to December 2022. Our adviser says the ICS should have taken the time to collect information regarding the PUPoC along with the views of the family.

33. We can see the ICS made its decision regarding the review of the previous period of care based on the evidence it collected for the DST for the period 3 December 2022 to 4 February 2023. We can see no evidence to support its decision Mrs D did not have a primary health need prior to the DST as the ICS have not provided any evidence to support this. We find the ICS did not make its decision to not consider the earlier period between 1 April 2019 to 2 December 2022 in line with the PUPoC guidance. This is a failing.

34. Ms B says as a result her mother was not eligible for CHC funding and had to pay care home fees.

35. We understand the CHC process is long and it would have been frustrating for Ms B to know her request for PUPoC assessment for her mother was declined. We cannot say if Mrs D would have been eligible for CHC funding for the period 1 April 2019 to 2 December 2022 and should not have had to pay care home fees. This is because whether or not an individual is eligible for CHC funding is a discretionary decision. It is our role to decide whether the ICS acted in line with the PUPoC guidance when it considered Ms B’s request. We can see Ms B has not had a robust consideration of her mother’s care, for a review of PUPoC.

1. We uphold the complaint about NHS Sussex Integrated Care System.

2. Ms B complains about NHS Sussex Integrated Care System’s decision to not carry out a retrospective review for her mother, Mrs D’s eligibility for NHS Continuing Healthcare (CHC). We understand the CHC process can be long and time consuming.

3. We have found NHS Sussex Integrated Care System did not make its decision to not carry out a review of her Mrs D’s CHC eligibility for the period 1 April 2019 to 2 December 2022 in line with the Department of Health’s ‘Dealing with requests for assessments of previously unassessed periods of care’ guidance.

4. We are making recommendations based on what we have found. We recommend the ICS writes to Ms B and apologises for not carrying out her request for an assessment in line with the guidance. It should establish what evidence is available for the period and then either carry out a review for the period or explain why it cannot do this.