Suffolk and North East Essex Integrated Care Board

3. Mrs O complains about the ICB’s decision on 10 February 2025 not to reimburse unpaid care she provided to her son, Mr O, during the period 21 September 2018 to 11 December 2019.

4. Mrs O says as a result, her son’s mental health was greatly affected and it prevented the recruitment of external care and assistance. It also meant the family were unable to go on breaks and holidays which help his mental health and wellbeing.

5. As an outcome she would like the ICB to reconsider its decision not to reimburse the unpaid care.

6. Mr O has a background of slowly progressive neuromuscular degenerative condition (a condition affecting the nerve, muscle and neuromuscular junction which get worse over time), left ventricular non-compaction cardiomyopathy (a rare congenital heart disease which affects the lower left chamber), factor 11 deficiency (blood clotting disorder which can cause abnormal bleeding), epilepsy (neurological disorder causing seizures) and keratoconus eye condition (distorted vision which cannot be corrected with glasses and gets progressively worse), postural hypotension (an abnormal drop in blood pressure). Mr O also has a learning disability and is non-verbal. He has scoliosis (spine is twisted and curves to the side), kyphoscoliosis (spinal abnormality that causes the back to curve both sideways and forwards or backwards), foot deformities, dysmorphic features (difference of body structure that is suggestive of congenital disorder), tremors to limbs, and a developing contracture in his knee (causing stiffness in the connective tissues of the knee). He needs 24-hour care, is gastrostomy fed and doubly incontinent.

7. NHS continuing healthcare (CHC) funding is NHS funding provided to cover the health and social care needs of people with complex health needs.

8. A decision support tool (DST) was completed on 12 December 2024 for the period 21 September 2018 to 11 December 2019.

9. The ICB concluded Mr O was eligible for NHS Continuing Healthcare during the period of 21 September 2018 to 11 December 2019. On 16 December 2024 the ICB informed Mrs O of its decision.

13. Mrs O complains the ICB on 10 February 2025 decided not to reimburse unpaid care she provided to her son during the period 21 September 2018 to 11 December 2019.

14. Mrs O explains it is self explanatory she did not issue herself with invoices or receipts for the caring she provided. She says she should not be penalised because she could not afford carers which the ICB should have been funding and provided the care herself.

15. The ICB said national guidance on retrospective assessments states payments made following a decision someone is retrospectively eligible for NHS CHC should reimburse the individual for the care costs incurred for the relevant period, plus interest. In order to make a payment the ICB must have evidence of the care costs incurred at the time. The ICB made an ex-gratia offer of £3,700.

16. For context, Mrs O previously brought a complaint to us. She complained about a DST completed in 2018. She also complained about the ICB’s decision not to backpay CHC funding to 18 November 2019.

17. We made a recommendation for the ICB to reconsider the DST from 2018. This is because we found failings in the way the ICB conducted the DST. The ICB completed a new DST for the period 21 September 2018 to 11 December 2019. It found Mr O was eligible for CHC funding.

18. We also asked the ICB to reconsider its decision to reimburse the family for unpaid care from 18 November 2019. We found there was an unreasonable delay in implementing Mr O’s PHB between the date it was agreed and the first payment. We found the ICB did not act in line with The Guidance for Local Authorities and Clinical Commissioning groups to inform the family they could use the CHC funding flexibly to pay themselves for the care they provided to Mr O during the COVID-19 pandemic. The ICB did this in line with our recommendations.

19. We will now consider the ICB’s decision not to pay for unpaid care provided by the family during the period 21 September 2018 to 11 December 2019.

20. As noted above, the ICB reconsidered the DST from 2018. A new DST was completed on 12 December 2024 for the period 21 September 2018 to 11 December 2019. The ICB concluded Mr O was eligible for NHS Continuing Healthcare during the period of 21 September 2018 to 11 December 2019.

21. On 16 December 2024 the ICB informed Mrs O of its decision. The letter explains if Mrs O sought reimbursement for care, she must provide evidence such as: • Invoices • Receipts • Bank statements • Returned cheques if available • Confirmation from the nursing home of fees paid for care provided/or any additional information you feel necessary.

22. On 7 January 2025 Mrs O emailed the ICB to request payment for care provided by herself for the period 21 September 2018 to 11 December 2019. A breakdown of the care hours provided was sent on 6 February 2025.

23. On 10 February 2025 the ICB wrote to Mrs O. It explained to make a payment it must have evidence of the care costs incurred at the time.

24. We have reviewed Dealing with requests for assessments of previously unassessed periods of care from 1 April 2012. It says:

‘The reimbursement payment should be made to the individual, or their estate, by the ICB with the aim of restoring the individual to the financial position they would have been in, had NHS CHC eligibility been agreed at the appropriate time. The payment should therefore reimburse the individual for the care costs incurred for the relevant period, plus interest.’

25. In line with guidance, it says the ICB should reimburse the care costs incurred. We acknowledge no care costs were incurred as Mrs O provided the care. Our advisor explains the ICB would not be able to reimburse a sum of money that cannot be supported by invoices and proof of payment.

26. Our advisor told us there were exceptional circumstances during the COVID-19 pandemic. It was a time of challenge, and several families chose or were required to provide care to loved ones because there was no other option. The period in dispute was prior to the pandemic. There is no evidence Mrs O was employed or under an exceptional circumstances contract by the NHS or by a care agency during this timeframe.

27. We understand Mrs O’s frustration she has not been paid for care she provided. We understand how challenging it is to have a family member who requires high levels of care and the impact this can have on the family. The period under consideration in this complaint was prior to the pandemic and not subject to exceptional circumstances. We have not found fault in the ICB’s decision to only reimburse costs paid for. Its decision is supported by guidance. We cannot say the ICB got anything wrong here.

1. We have carefully considered Mrs O’s complaint about Suffolk and North East Essex Integrated Care Board (the ICB). We understand how frustrating challenging continuing healthcare appeals can be. We acknowledge it has been ongoing for a long time.

2. We have seen no indication the ICB failed to act in line with national guidance. We have not found it got anything seriously wrong in its decision making. Our decision is not intended to detract from her account or experience.