NHS England Midlands and East

5. Mrs O complains about the outcome of the IRP convened by NHS England on 25 March 2024 to consider Suffolk and Northeast Essex Integrated Care Board’ (ICB) decision that her mother, Mrs U, was not eligible for NHS continuing healthcare (CHC) funding for the retrospective review period 1 April 2012 to 10 March 2015.

6. Mrs O says the IRP did not properly consider her mother’s needs in the following domains: (a) behaviour and; (b) psychological and emotional needs.

7. Mrs O also complains the IRP did not consider her concerns about the ICB’s procedural errors.

8. Mrs O believes for the period reviewed by the IRP; her mother should have been entitled to CHC funding to meet the cost of her care. Mrs O says her mother had to pay for her own care.

9. Mrs O would like NHS England to reconsider its decision for fully funded NHS CHC. Mrs O would also like a financial remedy amounting to £8,000 to recognise the distress from the procedural errors she experienced.

10. CHC funding is NHS funding provided to cover the health and social care needs of people with complex health needs. A checklist is used to determine a patient’s needs. A positive checklist indicates a patient has high needs and so is to be discussed at a multidisciplinary team (MDT) meeting attended by different clinicians. A DST is a national tool for CHC funding. The tool brings together information from the assessment of a patient needs (checklist) to facilitate evidence-based recommendations and decision-making regarding eligibility for NHS Continuing Healthcare (CHC) during the MDT. An IRP is an independent review panel used to review the MDT decision regarding CHC funding.

11. Following a positive checklist the ICB assessed Mrs U for CHC funding. Subsequently, a multidisciplinary team (MDT) completed a retrospective decision support tool (DST), and recommended Mrs U was not eligible for CHC funding. A DST is an assessment tool used to identify whether a person’s needs are primarily healthcare needs, and whether they should be eligible for CHC funding.

12. The family progressed their concerns to NHS England and an IRP was convened on 25 March 2024. The IRP upheld the ICB’s decision and found Mrs U was not eligible for CHC funding for the period 1 April 2012 to 10 March 2015.

15. It is our role to decide whether NHS England’s IRP acted in line with the National Framework for NHS Continuing Healthcare and NHS-funded Nursing Care (2018) when it considered whether Mrs U was eligible for CHC. The National Framework sets out the principles and processes local commissioning groups (now called integrated care boards) and NHS England should follow when considering if someone is eligible for CHC.

16. We cannot consider the discretionary decisions the IRP made when it decided on eligibility. This includes the decisions it makes based on clinical judgements and clinician’s opinions. We can only consider if the IRP has followed the National Framework. This means we only uphold a complaint about a CHC eligibility decision if we find the IRP did not follow the National Framework when it made its decision. The IRP reviews if the ICB should have found the person to have a primary health need and therefore be eligible for CHC. It also reviews the ICB’s procedures when it made its eligibility decision to make sure it was acting in line with the National Framework. If the IRP does find the ICB made a mistake, it can:

• recommend the ICB reconsiders if the patient had a primary health need; and • recommend the ICB addresses any procedural faults the IRP identified.

17. Mrs O disputes the IRP’s findings with respect to the following domains:

(a) behaviour, (b) psychological and emotional needs.

Behaviour

18. The ICB assessed this level of need as no needs for the period 1 April 2012 to 31 March 2013, low need for the period 1 April 2013 to 31 March 2014 and moderate need for the period 1 April 2014 to 10 March 2015. The IRP disagreed with this assessment and felt the level of need for the entire period was high. Mrs O disagreed and felt the level of need should have been severe.

19. The DST descriptor describes a high need as:

‘Challenging’ behaviour of type and/or frequency that poses a predictable risk to self, others or property. The risk assessment indicates that planned interventions are effective in minimising but not always eliminating risks. Compliance is variable but usually responsive to planned interventions.’

20. It describes a severe need as:

‘Challenging’ behaviour of severity and/or frequency that poses a significant risk to self, others or property. The risk assessment identifies that the behaviour(s) require(s) a prompt and skilled response that might be outside the range of planned interventions.’

21. The IRP recognised Mrs U had been resistant to care and she had no awareness of risk due to poor cognition. The IRP found no evidence of violent behaviour. The panel noted sometimes staff would have to retreat and return to deliver care but the behaviour in itself was not complex or challenging to manage.

22. We note Mrs U’s records show some predictable behaviours which posed a challenge for her carers. She could decline medication and personal care. Her care plans show her carers needed to encourage and reassure. We cannot see her medication care plan needed to be changed to reflect challenging behaviour. Her care plans did not reflect her carers needed to always be prepared to provide an immediate and skilled response. We do not doubt the skill of her carers at providing for her needs. We cannot see they needed to provide above what we would expect care staff to provide in a care home.

23. As such, we are satisfied there is no indication of maladministration in the IRP’s decision-making process. The reasoning provided by the IRP for the weighting in this domain is supported by the records and in line with the National Framework.

Psychological and emotional needs

24. The ICB assessed this level of need as low for the period 1 April 2012 to 31 March 2014 and moderate for the period 1 April 2014 to 10 March 2015. The IRP disagreed with this assessment and felt the level of need was moderate throughout. Mrs O disagreed and felt the level of need should have been high.

25. The DST descriptor describes a moderate need as:

‘Mood disturbance, hallucinations or anxiety symptoms, or periods of distress, which do not readily respond to prompts, distraction and/or reassurance and have an increasing impact on the individual’s health and/or well-being. OR Due to their psychological or emotional state the individual has withdrawn from most attempts to engage them in care planning, support and/or daily activities.’

26. It describes a high need as:

‘Mood disturbance, hallucinations or anxiety symptoms, or periods of distress, that have a severe impact on the individual’s health and/or well-being. OR Due to their psychological or emotional state the individual has withdrawn from any attempts to engage them in care planning, support and/or daily activities.’

27. The IRP recognised Mrs U’s medication, Citalopram, had increased from 20mg to 30mg. The panel considered Mrs U’s low mood and record of hallucinations. It acknowledged she did not engage in daily activities but felt this was largely due to her lack of cognition. It found no evidence of her being tearful or that the hallucinations were causing her distress.

28. We can see Mrs U was not actively participating in her care planning, which could be indicative of low mood or emotional withdrawal. However, upon reviewing the available records, we found references to her sleeping well, with no documented episodes of crying, or visible distress. There is also no evidence that Mrs U had been referred to or reviewed by a psychiatrist or community mental health nurse during the period in question. We have seen no evidence to suggest that Mrs U’s psychological and emotional needs were having a severe or debilitating impact on her overall health and wellbeing, as required to meet the criteria under the high descriptor for psychological needs.

29. The records support the suggestion that she could be quite resistant to intervention. But it would be inappropriate to conclude Mrs U had withdrawn from any attempt to engage with care, support or daily activities, as is the description for a high need. Therefore, the periods of anxiety or distress do not appear to have had a severe impact on her health and wellbeing.

30. As such, we are satisfied that there is no indication of maladministration in the IRP’s decision-making process. The reasoning provided by the IRP for the weighting in this domain is supported by the records and in line with the National Framework.

31. As such, we are satisfied there is no indication of maladministration in the IRP’s decision-making process. The reasoning provided by the IRP for the weighting in this domain is supported by the records and in line with the National Framework.

Concerns re ICB

32. Mrs O also raises concerns the panel did not consider her concern about the ICB’s procedural errors.

33. We can see the IRP addressed these concerns and recommended service improvements in that the ICB should review the way in which Mrs U’s needs were assessed and determine whether any changes to procedures were required.

34. We consider this is a fair and proportionate remedy in line with the Ombudsman’s Principles of Good Complaint Handling and for Remedy. These Principles explain that providing fair and proportionate remedies is an integral part of good complaint handling, and a public body has failed to get things right and this has led to an injustice, it should take steps to put things right.

35. Appropriate remedies can include apologies, remedial action, and financial remedies, and in addition to this, public bodies should ensure that all feedback and lessons learnt from complaints contribute to service improvement.

36. We recognise that this must have been an extremely stressful process for Mrs O. This has been acknowledged by the panel, and we can see that it has taken Mrs O’s concerns seriously and has used this as an opportunity to implement learning at the ICB. We consider this is an appropriate response to the distress caused and is in line with the Ombudsman’s Principles of Good Complaint Handling, as outlined above.

Conclusion

37. The IRP’s rationale for its decisions is in line with the National Framework and refers to the relevant evidence throughout. We are satisfied the IRP has fairly considered the comments and observations of both the family and the ICB in coming to its final decision.

38. We appreciate the time and effort Mrs O has taken to bring her complaint to us. While we did not find indications of failings in the eligibility consideration, we understand the distress and frustration of pursing a CHC complaint. We were sorry to learn of her concerns and hope that our explanations provide reassurance that the right process has been followed.

1. We have carefully considered Mrs O’s complaint about NHS England. We were sorry to hear how Mrs O and her family have been affected. It is clear they have had a difficult and upsetting experience.

2. We are satisfied that the Independent Review Panel’s (IRP) rationale for its decisions is in line with the National Framework and refers to the relevant evidence throughout. We are further satisfied that the IRP has fairly considered the comments and observations of both the family and the ICB in coming to its final decision.

3. Our role is to decide whether NHS England’s IRP considered the claim for continuing healthcare (CHC) funding for the retrospective review period, 1 April 2012 to 10 March 2015 was in line with the National Framework. We cannot question discretionary decisions made without maladministration; this includes decisions about eligibility for NHS CHC. As such, we can only uphold a complaint about an eligibility decision if there is some specific maladministration in the way the IRP reached its decision. The fact that another party holds a different opinion does not mean that there was a fault in the decision-making process.

4. We will explain our reasons for our decision in this decision statement. Complaints give us valuable insight into the organisations we investigate, so we would like to thank Mrs O for sharing her experience with us. It is also important to acknowledge that finding no indications something went wrong in relation to this complaint, does not detract from her experience, or the upset and frustration these events caused her and her family.