An independent provider in the Wandsworth area

7. Mrs I raises a complaint about Leicestershire and Rutland Integrated Care Board’s (the ICB’s) decision made on 21 February 2025. The ICB’s decision was the withdrawal of her daughter, Miss C’s, health needs were sound. She complains specifically:

• the ICB’s response does not detail any consideration of evidence or provide a rationale for the decision to reduce health funding from 75% to 0% when Miss C’s needs had not changed • Mrs I’s also disputes the ICB’s view of speech and language therapy (SALT) and physiotherapy input for Miss C stopped in July 2019 and asserts her daughter continued to receive input from these services.

8. Mrs I say the loss of essential health funding has had long lasting consequences for her and her family. She says the ICB’s decision has caused ongoing frustration, distress, and confusion due to the ICB’s poor processes, and failure to respond satisfactorily.

9. As a result, Mrs I wants a consideration of her concerns, and an ex-gratia payment for the distress caused by the ICB’s poor handling of the review and subsequent complaint, which has been ongoing for several years.​

10. Continuing healthcare (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 meeting attended by different clinicians (MDT).

11. A decision support tool (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.

12. Primary Health Need assists in deciding when an individual’s primary need is for healthcare rather than social care. To determine whether an individual has a primary health need, there is an assessment process, which is detailed in this National Framework. Where an individual has a primary health need and is therefore eligible for NHS CHC, the NHS is responsible for providing for all of that individual’s assessed health and associated social care needs, including accommodation, if that is part of the overall need.

13. Clinical Commissioning Groups (CCGs) were NHS organisations in England led mainly by GPs, responsible for planning and buying (commissioning) most local health services such as hospital care, community services and mental health services.

14. From July 2022, CCGs were replaced by Integrated Care Boards (ICBs). ICBs bring together the NHS, local authorities and other partners to plan health and care services across a wider area, aiming to improve the health of the whole population, reduce inequalities and make better use of resources by working more closely and in a more joinedup way.

15. Miss C is diagnosed with Angelman Syndrome, a rare genetic condition affecting the central nervous system and causes severe physical and learning disabilities. She is cognitively impaired and non-verbal. She suffers seizures and has pronounced scoliosis (sideways curve in the backbone).

Residential placement

16. Miss C attended and was a resident at a specialist college, for three years, from September 2016 to July 2019. The college is a provider of specialist further education, training, personal development and residential services for people with physical and learning disabilities and acquired brain injuries.

17. Throughout this period, Miss C’s placement and support at the college were funded through a joint package (75% health / 25% local authority), rather than full CHC. A care review in 2018 confirmed she was not eligible for full CHC, but that the joint funding arrangement should continue.

18. Miss C returned home in July 2019, while awaiting a long-term living placement at the college. Miss C moved back to the college as a resident in December 2019. At the time she had a package of care through a multidisciplinary team based at the college.

19. Miss C was temporarily removed from the provision in March 2020. She returned home while her parents worked with the college to better understand Miss C’s need. Miss C eventually returned to the college in June 2020.

20. Miss C’s support at the college was funded through a joint health/local authority package up to June 2019. After June 2019 the health element of that joint funding was stopped, and only partial, targeted health contributions were reinstated later, without any award of full CHC.

Funding

21. On 3 February 2016, following a continuing healthcare (CHC) Assessment, the ICB found Miss C as not eligible for CHC, but as she had unmet health needs, she was granted a joint funding package (75% health and 25% social funding).

22. On 5 March 2018, the ICB carried out a review of the joint funding package and decided the package is to continue but the family were not informed of this until 9 May 2019. The ICB have apologised for the delay in communicating this decision with the family.

23. On 21 June 2019, the ICB completed a DST assessment which consisted of a multidisciplinary meeting (MDT) with a CHC nurse and social worker. The ICB decided to withdraw the health aspect of the joint funding by end of 2019.

24. This was withdrawn on the basis when Miss C transitions to a new provision at the residential placement, her care would be funded by the Local Authority and NHS services such as physiotherapy and SALT could be accessed in the community.

25. In its decision letter the ICB explained if there were difficulties in accessing NHS services then it would consider another joint funding package.

26. The outcome letter sent to the family on 25 June 2019. The ICB accepted its first outcome letter was incorrect in that it wrongly said Miss C has no needs. An amended letter with an apology was sent to the family with information of a right to a review.

27. The family requested a review on 25 November 2019, but it was incorrectly sent to the CHC Appeals team. The CHC appeals team carried out a full assessment in September 2020 noting Miss C may have a primary care need.

28. The CHC appeals team sent its recommendations to the ICB. At this point, the ICB became aware the review request had been incorrectly sent to the CHC appeals team, and it advised the family on 10 December 2020 of its error and that its decision to withdraw the joint funding package does not have a right to appeal.

29. On 5 January 2021, the ICB confirmed by email that joint funding packages cannot be appealed, and the family should complain about the ICB’s decision. The CHC Appeals team emailed the family on 6 January 2021 to confirm the same that joint funding does not have a right to appeal and the ICB’s decision was final.

ICB response and consideration

33. Following our previous investigation in 2024, we considered there were no fundamental changes in Miss C’s presentation from the 2018 DST and the 2019 DST. By reducing the health aspect of the joint funding package from 75% to 0% in June 2019, the ICB’s decision appeared to be inconsistent with previous assessments and not line with the National Framework.

34. Mrs I via her representative brought her complaint back to us and states the ICB’s response does not detail any consideration of evidence or provide a rationale for the decision to reduce health funding from 75% to 0% when Miss C’s needs had not changed.

35. The ICB responded on 17 April 2025, and stated Miss C was not and never had been found to have a primary health need, and as such had not ever been found eligible for continuing healthcare (CHC) funding.

36. It said one full CHC eligibility assessment was carried out in February 2016, and all other assessments were care reviews in line with the National Framework.

37. The outcome of the February 2016 assessment found Miss C did not have a primary health need and as such, she was not eligible for CHC funding. The ICB also said at that time she had health needs which could not be met by universally commissioned health services and was awarded a joint funded package of care between health and the Local Authority (LA).

38. The ICB said the health’s contribution to Miss C joint funded package of care was to support specific health needs which were not available to her at that time. These included her physiotherapy, occupational therapy (OT) and speech and language therapy.

39. The response also referred to the care review which was undertaken on 21 June 2019. It was confirmed by the LA all of Miss C’s needs could now be met by them, in line with the Care Act 2014.  As there were no longer any unmet health needs for health to fund, that element of her package ended.

40. It said both the college and the LA confirmed Miss C no longer had any unmet health needs as these had been included in her Education Health and Care Plan (EHCP) and Miss C could access existing health services.

41. An EHCP is a legally binding document issued by a LA that sets out a child or young person’s special educational needs, the support they must receive, and the outcomes they are working toward.

42. The LA became fully responsible for ensuring all of Miss C’s needs were met.

43. It went on to say during the care review meeting it was agreed Miss C had health needs which were not being met, the LA would contact the ICB to discuss and request a contribution to her care package.

44. The ICB were contacted by the LA in May 2021 advising the ICB, Miss C had returned home and required support from health to fund her care package. As such, health reinstated a contribution towards her assessed care package.

45. We considered whether the ICB considered the evidence our office presented to the ICB appropriately.

46. While the ICB considered the evidence, our adviser says the ICB’s response of April 2025 does not appear the ICB acknowledges its decision is still part of the National Framework for the CHC process.

47. Our adviser says while the ICB is correct in saying Miss C was found not to have a Primary Health Need and as such, she was ineligible for full CHC, it does not explain the recommendation made is still one which has come about by the application of the National Framework process.

48. The National Framework (2012) states in paragraphs 113-117 the following:

‘Joint packages of health and social care services

113. If a person is not eligible for NHS continuing healthcare, they may receive a package of health and social care (rather than be fully funded by the NHS).

114. There will be some individuals who, although they are not entitled to NHS continuing healthcare (because ‘taken as a whole’ their needs are not beyond the powers of a local authority to meet), but nonetheless have some specific needs identified through the Decision Support Tool that are not of a nature that an LA can solely meet or are beyond the powers of an LA to solely meet. CCGs should work in partnership with their LA colleagues to agree their respective responsibilities in a joint package of care, including which party will take the lead commissioning role.

115.   Apart from NHS-funded nursing care, additional health services may also be funded by the NHS, if these are identified and agreed as part of an assessment and care plan. The range of services that the NHS is expected to arrange and fund includes, but is not limited to:

• primary healthcare; • assessment involving doctors and registered nurses; • rehabilitation/reablement and recovery (where this forms part of an overall package of NHS care, as distinct from intermediate care); • respite healthcare; • community health services; • specialist support for healthcare needs; and • palliative care and end of life healthcare.

116. According to each LA’s eligibility threshold it will be responsible for providing such social care, including personal care, as can lawfully be provided following the Coughlan limits set out in paragraph 30 above (see also Annex B).

117.    With respect to other types of joint package, the extent to which each service should provide care is for NHS and LA partners to agree, bearing in mind the fact that LAs can provide some health services, subject to the legal limitations…’

49. The National Framework (2018) reiterates the above in its paragraphs of 263 to 269. It confirms that where a person is not eligible for CHC, they may receive a joint package of health and social care funded by both the NHS and the LA, in any setting.

50. This applies where needs identified in the DST go beyond what a local authority can lawfully provide under the Care Act 2014. Clinical Commissioning Groups (CCGs, now ICBs) and local authorities must work in partnership, agree their respective responsibilities based on the individual’s needs, and decide who will lead on commissioning.

51. The National Framework in its section on joint funding also says the NHS may fund a range of health services within such packages (for example primary care, nursing assessment, rehabilitation, respite, community health, specialist and palliative care), while the LA provides meanstested care and support within its legal powers.

52. It explains contributions can be made by delivering services directly, commissioning services, transferring funds, or via an integrated personal budget, and a single provider or worker may deliver both health and social care elements. Also, joint CCG and LA reviews should be considered for all joint packages to ensure effective, coordinated support.

53. While the ICB agreed it would contribute 75% of the funding to the care package, it does not explain how it came to this figure.

54. Our adviser says if the ICB agreed the healthcare needs of Miss C outweighed the social care needs at a ratio of 75:25% then Miss C was eligible for full NHS CHC funding.

55. Care to Be Different, an organisation which explains NHS CHC to professionals and the general public states in ‘Taking responsibility: Joint Packages of Care’ the following:

‘If a joint package of care is awarded, and the ICB are contributing at least 50% of the jointly funded package, then you can argue that the health needs must outweigh the social needs, and therefore, it follows that the individual should be reassessed as having a Primary Health Need. If correct, funding will pass into the ICB’s sole remit for free funded care, not the local authority (where means-testing applies).’

56. We acknowledge the above quote post-dates the scope of the complaint. It describes duties and principles (about primary health need, joint funding and appeals/complaints) that were already in place at the time. We are not using Care To Be Different as a formal authority or to apply new standards retrospectively, our findings are based on the National Framework and guidance that applied then.

57. While Miss I asked whether the ICB appropriately considered the evidence we presented to the ICB, it is more appropriate to question whether the ICB’s actions were in line with the National Framework when carrying out the original assessments.

58. Our adviser comments the ICB is not alone when developing joint packages of care funded by the NHS and social services in the community.

59. If an individual’s needs are mainly healthcare needs, which are more than 50%, many of these arrangements may not withstand legally as the NHS should be taking the lead responsibility where the healthcare needs outweighed the social care needs at a percentage over 50%.

60. As such, we cannot see the ICB explained how Miss C’s healthcare needs previously assessed as requiring 75% of NHS funding ceased to require any NHS contribution at all, particularly given the fact we established in our previous decision, there was no material change in her needs.

61. In the absence of any material change in Miss C’s assessed needs, we consider the decision to reduce the NHS contribution from 75% to 0% required a clear and reasoned explanation. No such explanation has been provided to Miss I.

62. We also consider the LA’s subsequent request in 2021 shows Miss C’s healthcare needs continued to form part of her care requirements. As such, this also indicates Miss C’s healthcare needs continued to form a significant component of her overall care.

63. We acknowledge the ICB said Miss C’s funding went from 75% to 0% when there were no significant changes within her presenting needs. It explained it is because her needs can be met by her residential college.

64. Our adviser comments the above leads to a misinterpretation of the ‘well managed needs’ principle.

65. The National Framework (2018) states in paragraph 142, ‘The decision-making rationale should not marginalise a need just because it is successfully managed: well-managed needs are still needs. Only where the successful management of a healthcare need has permanently reduced or removed an ongoing need, such that the active management of this need is reduced or no longer required, will this have a bearing on NHS Continuing Healthcare eligibility.’

66. As such, a need being met or effectively managed is still a need unless there is evidence to support the healthcare need is no longer an ongoing need or is reduced.

67. Our adviser explains the ICB should have considered the ‘well managed need’ principle as Miss C still had the identified need, but they were being managed by the environment she was in, and as such considered whether the NHS were still responsible for supporting those needs.

68. Our adviser further explains the ICB should have provided a more detailed explanation of its rationale for making the decision. It should have also carried out an up-to-date review of Miss C’s healthcare needs and established for themselves whether healthcare funding should be available. The ICB did not and relied on the information of two non-healthcare providers to rationalise the withdrawal of funding.

69.  As such, we consider there is an indication of failing as the ICB did not provide a rationale for making the decision to remove the funding, did not consider the well-managed need principle, and did not carry out an up-to-date review of Miss C’s needs.

Speech and language therapy team (SALT) and physiotherapy

70. Mrs I complains the ICB asserted the previous health contribution had been for physiotherapy and SALT input only and Miss C was no longer receiving these services in June 2019. This is incorrect.

71. Mrs I says Miss C continued to receive regular input from both SALT and physiotherapy at the point of funding withdrawal. She also says it cannot be the case that 75% of Miss I’s substantial residential care package was for these services only.

72. The ICB in its response states it was confirmed by both the college and the LA Miss C no longer had any unmet health needs as these had been included in her EHCP and Miss C could access existing health services. The LA became fully responsible for ensuring all of Miss C needs were met.

73. It was agreed during the care review meeting that should it be identified Miss C had health needs which were not being met, the LA would contact the ICB to discuss and request a contribution to her care package.

74. We considered whether the ICB correctly considered input from physiotherapy and SALT teams appropriately.

75. Our adviser says there is no evidence to suggest the ICB considered the health care needs of Miss C.

76. Our adviser comments SALT and physiotherapy are both available through mainstream NHS services although the waiting lists are long. If therapy services were being offered by the residential placement, our adviser questions as to why did the ICB not continue to fund these services as they did when Miss C was at home.

77. As stated previously, if the ICB agreed Miss C’s healthcare needs outweighed the social care needs at a ratio of 75:25 % then she was eligible for full NHS CHC funding.

78. As such, there is no evidence to show SALT and physiotherapy formed 75% of the care package and if it did, it raises questions as to why the ICB not continued to fund as it had done previously.

79. In conclusion, if the ICB can prove the workings out a 75% funded by health 25% funded by a social care package was required, should the ICB not consider Miss C does have a Primary Health Need. Our adviser says Miss C’s healthcare needs far outweighed her social care needs.

80. Based on the available evidence, we find the ICB did not properly consider Miss C’s physiotherapy and SALT needs or provide evidence that these services made up 75% of her care package.

81. Miss C was still receiving regular SALT and physiotherapy input at the point funding was withdrawn, and these services are available through the NHS which the ICB had previously funded at home.

82. If 75% of her package was for health needs, this indicates she may have met the criteria for full NHS CHC.

83. Overall, we consider Miss C’s healthcare needs far outweighed her social care needs, and the ICB has not provided a clear rationale for its position, which is indicates a failing.

Local resolution

84. As an outcome to this complaint, Mrs I is seeking financial compensation (an ex-gratia payment under the National Framework). She would like her concerns to be fully considered and for financial redress to be provided.

85. We contacted the ICB on 6 July 2026 and shared our findings of our investigation. Following a discussion with the ICB’s deputy chief nursing officer and assistant director of nursing, the ICB sent us a response on 27 August 2026.

86. The ICB has confirmed that, following our meeting and the concerns raised, it will carry out further work on this case. It has agreed to arrange a further review of the case by its All-Aged Continuing Healthcare (AACHC) team, focusing on the rationale and decision making behind the 75% health and 25% social care jointfunded arrangement.

87. It has also said it will ensure the original decision and subsequent reviews are subject to detailed scrutiny, including whether ‘wellmanaged needs’ were properly considered and applied.

88. In its letter of 27 August 2026, the ICB said it will base any future response and consideration of further action on the outcome of this AACHC review, without preempting eligibility decisions or financial implications. It will also provide details of the named lead who will carry out the review once this has been confirmed.

89. We consider this shows the ICB has accepted the need for further work and is taking appropriate steps to review the case.

90. This approach is in line with NHS Complaints Standards Framework which say, ‘senior staff make sure appropriate structures are in place to deliver fair and robust complaint investigations.’

91. As it has been agreed that a further consideration will take place, we will not take any further action at this time.

92. We recognise how important these matters are to Mrs I and her family, and we are sorry for the distress and uncertainty this long process will have caused them. We also acknowledge that Miss I has brought her complaint to us before, and we appreciate that it has taken a considerable amount of time to reach this stage.

93. We hope the further review and actions outlined above go some way towards addressing her concerns, and we thank her for her patience and for bringing this complaint to us.