Summary: The Ombudsmen find no fault by a Council and Clinical Commissioning Group in relation to the care and support they provided to a woman with complex care needs.

The complaint

1. The complainant, who I will call Mr D, is complaining about the care provided to his daughter, Miss C, by Suffolk County Council (the Council) and Great Yarmouth and Waveney Clinical Commissioning Group (the CCG). Mr D complains that:

• In 2017, the Council and CCG reduced Miss C’s care package, despite her care needs remaining the same.
• The Council and CCG failed to adequately assess Miss C’s needs before transferring her from one placement to another in 2017. Mr D says the CCG did not obtain input from specialist staff at the first placement.
• The CCG gave Miss C false and misleading information about the second placement. Mr D says this meant she could not make an informed decision about whether she wished to move there.
• The Council and CCG failed to appropriately assess Miss C’s care needs before discharging her back into the community. Mr D says this meant Miss C was discharged without a care package.

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The Ombudsmen’s role and powers

2. The Ombudsmen investigate complaints about ‘maladministration’ and ‘service failure’. We use the word ‘fault’ to refer to these. If there has been fault, the Ombudsmen consider whether it has caused injustice or hardship (Health Service Commissioners Act 1993, section 3(1) and Local Government Act 1974, sections 26(1) and 26A(1), as amended).
3. If the Ombudsmen are satisfied with the actions or proposed actions of the bodies that are the subject of the complaint, they can complete their investigation and issue a decision statement. (Health Service Commissioners Act 1993, section 18ZA and Local Government Act 1974, section 30(1B) and 34H(i), as amended)
4. The Ombudsmen cannot decide what level of care is appropriate for any individual. This is a matter of professional judgement and a decision that the relevant organisation has to make. Therefore, my investigation focused on the way the Council and CCG made their decisions.

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How I considered this complaint

5. In making this final decision, I considered information provided by Mr D and discussed the complaint with him. I also considered information and documentation provided by the Council and CCG, including the care records. I also took account of relevant guidance and legislation. In addition, I invited comments on my draft decision from Mr D and the organisations he is complaining about and considered the responses I received.

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What I found

6. Sections 9 and 10 of the Care Act 2014 require local authorities to carry out an assessment of any adult who appears to need care and support. They must assess anyone, regardless of their finances or whether the council thinks they have eligible needs. The assessment must be of the adult’s needs and how they impact on their wellbeing and the outcomes they want to achieve. It must involve the individual and, where appropriate their carer, or any other person they might want to be involved.
7. An assessment should take place over an appropriate and reasonable timescale taking into account the urgency of needs and a consideration of any fluctuation in those needs. Councils should let the individual know of the proposed timescale for when their assessment will be conducted and keep the person informed throughout the assessment process.

Continuing Healthcare

8. Continuing Healthcare (CHC) is a package of care arranged and funded by the NHS where a person has been assessed as having a ‘primary health need’. For most people who may be eligible for CHC, the first step in assessment is for a health or social care professional to complete a CHC Checklist. The threshold for meeting the CHC Checklist is set low.
9. If the completed CHC Checklist indicates the person may be eligible for CHC, the next step is a full multidisciplinary assessment. This assessment is completed using a decision support tool (DST). The DST is a record of the relevant evidence and decision-making. The DST makes a recommendation about whether a person is eligible for CHC funding.

Key facts

10. Miss C suffers from Myalgic Encephalomyelitis (ME). This is a long-term condition with a wide range of symptoms, including extreme tiredness. Miss C requires assistance to transfer from her bed and with activities of daily living, including personal care and toileting. Miss C is fed by percutaneous endoscopic gastrostomy (PEG – a feeding tube passed through the abdominal wall directly into the stomach).
11. In January 2017, Miss C moved from a residential placement into a bungalow prepared by her parents. She received a package of care that was joint funded by the Council and CCG.
12. In June 2017, the care agency served notice as it was no longer able to cover Miss C’s care visits.
13. Miss C subsequently agreed to a temporary placement in a neurological rehabilitation unit (Placement 1) funded by the CCG. She moved into the placement in August 2017.
14. A CCG officer visited Miss C in Placement 1 in September 2017. She determined that Miss C was not engaging with the rehabilitation services on offer in the placement. The CCG officer advised Miss C that she would need to engage with these services in order to remain in the placement.
15. In December 2017, Miss C agreed to a transfer to another specialist neurological unit (Placement 2) pending arrangements being made for her long-term care. Miss C moved to Placement 2 later that month. This was joint funded by the Council and CCG.
16. Miss C remained in Placement 2 until May 2019, when she was discharged back into the community.

Analysis

Reduction in care

17. Mr D complained the Council and CCG reduced Miss C’s care package despite her complex needs remaining the same. He says this resulted in the collapse of her care package and meant she could not continue living in the community.
18. The Council said Miss C’s care package originally started in November 2013 and consisted of 24-hour support from a single carer. This care package was joint funded by the CCG (67.55%) and Council (32.45%). The Council said it had no record of the care package being reduced and that it remained in place until Miss C moved to Placement 1 in August 2017.
19. I have reviewed the care records of both the Council and CCG for the period between January and August 2017.
20. The CCG’s records contain an email from Mr D in June 2017 to the care agency providing Miss C’s care package. This email refers to an agreement between Miss C’s family and the care agency that carers would be allowed a break time of two and a half hours per day (rather than the previously agreed two hours per day). Mr D said this meant Miss C’s care package was effectively reduced by three and half hours per week.
21. It is unclear from the records when this agreement was reached, and I found no evidence in the records to suggest either the Council or CCG were involved in this decision.
22. Furthermore, I am not persuaded any reduction in the care package led to the collapse of Miss C’s care package in the community.
23. The records show that, by early June 2017, the care package was at risk of breaking down. This appears to have been attributable primarily to a deterioration in Miss C’s relationship with some carers involved in her care. This limited the number of carers who were willing to care for Miss C and ultimately meant the care agency could not continue to deliver the care package. The care agency served notice that month.
24. I appreciate this situation must have been frustrating for Miss C and Mr D. However, in my view, the failure of the care package was not attributable to the actions of the Council or CCG. I found no fault by the Council or CCG in this matter, therefore.

Transfer from Placement 1

25. Mr D complained that the CCG decided too early that Placement 1 had been unsuccessful. He said the CCG did not consult key staff involved in Miss C’s care and that the decision to end the placement took no account of her complex needs and the slow but steady progress she was making. Mr D queried why the CCG did not seek to renegotiate the care package to remove the rehabilitation component until Miss C was more able to engage.
26. The CCG said Miss C had agreed to a 12-week period of rehabilitation in Placement 1. The CCG said any continuation of this placement was contingent on Miss C’s progress and willingness to engage with the rehabilitation services on offer. The CCG said an officer visited Miss C at the placement in September 2017. The CCG said the officer reviewed the care records and spoke to staff involved in Miss C’s care. The CCG said Miss C was not engaging with rehabilitation services and that it could not therefore continue to fund the placement. As a result, the CCG said it had arranged for Miss C’s transfer to Placement 2, where she could continue to receive appropriate neurological support but without the focus on rehabilitation.
27. Mr and Mrs D first offered Placement 1 as a possibility in June 2017 as a clinician involved in Miss C’s care had recommended it.
28. Later that month, Miss C wrote to a CCG officer (Officer A) to advise that she wished to be considered for a place in Placement 1. However, she emphasised that she saw this as an opportunity for specialised inpatient care rather than “as some sort of immediate re enablement or rehabilitation program” which she said her health would not allow.
29. Following discussions with Mr and Mrs D, Miss C contacted Officer A again to say that she would try to engage with the rehabilitation services on offer at Placement 1.
30. In July 2017, Mr D contacted Officer A to enquire whether the placement would go ahead. The officer noted that the placement would proceed “for an initial period of 3 months for assessment and to determine her willingness to engage in rehabilitation…I stressed that if [Miss C] was not willing to engage once at the unit the funding would be ended”.
31. Officer A also wrote to Miss C to confirm this. She explained that she would visit Miss C after six weeks to assess her progress. Miss C moved to Placement 1 on 11 August 2017.
32. On 1 September 2017, Miss C wrote to Officer A. She explained that she was struggling to cope with the care environment and felt unable to make progress with rehabilitation. Miss C said “[m]y opinion 3 weeks in is it might be best off me being moved back home for small team care and trying to get psychological support in the community.”
33. Officer A contacted Placement 1 on 14 September 2017 and spoke to a nurse on the unit who advised that Miss C was not engaging with the offered rehabilitation therapies.
34. The following day, another CCG officer (Officer B) visited Placement 1. She spoke to the unit manager who advised her that attempts to engage Miss C in rehabilitation had been unsuccessful as Miss C felt too tired. Officer B also spoke to Miss C. She explained that Miss C would need to begin engaging with rehabilitation therapies in order for the placement to continue. Officer B also discussed other care options with Miss C, including the possibility of moving to another care facility without the same focus on rehabilitation. Miss C agreed to discuss the care options with Mr and Mrs D.
35. Mrs D contacted Officer B on 19 September 2017. She said she felt Miss C needed more time to settle and that it was too soon to think about ending the placement. Officer B advised that this was a specialist rehabilitation placement, but that Miss C was so far not engaging.
36. On 19 October 2017, a member of staff from Placement 1 contacted Officer B to discuss Miss B’s care. He advised that Miss C was still not engaging with rehabilitation therapies.
37. Officer B wrote to Miss C on 10 November 2017 to advise that the CCG would no longer fund the placement. Officer B asked Miss C to consider a transfer to Placement 2, where there would be less focus on rehabilitation.
38. Placement 2 assessed Miss C in November 2017 and agreed it would be able to meet her care needs. Miss C agreed to the transfer pending decisions being made about her long-term care and this went ahead in December 2017.
39. I have reviewed the care records for Miss C’s time at Placement 1. These show Miss C felt largely unable to engage with physical rehabilitation services throughout her stay and often advised therapists that she was too tired to participate. Indeed, Miss C advised Officer A that she felt unable to engage and that a move back into the community may be more suitable for her. In my view, there is no evidence to suggest the situation improved substantially as the placement progressed.
40. The case records show the CCG made clear to Miss C from the outset that the placement was for an initial period of rehabilitation and would be subject to review. The CCG also explained that continuation of the placement would be contingent upon Miss C’s willingness or ability to engage with rehabilitation. In my view, it was appropriate for the CCG to consider alternative care options once it became clear Miss C could not engage with the physical rehabilitation services on offer at the placement.
41. I note Mr D’s concern that CCG officers failed to discuss Miss C’s care with some of the key professionals involved. However, the care records contain input from the wider multidisciplinary team involved in Miss C’s care and present a clear picture of her progress. Furthermore, Officers A and B did discuss Miss C’s care with staff at Placement 1, including the unit manager. In my view, this gave CCG officers sufficient information on which to make a decision.
42. The evidence shows the CCG made the purpose of the placement clear to Miss C and advised her it would be subject to review. CCG officers then carried out an appropriately robust review before making a decision to end the placement. On this basis, I found no fault by the CCG here, albeit I accept Miss C and her family were disappointed.
43. The records relating to Miss C’s time in Placement 1 suggest she was gaining some benefit from the psychological therapies on offer and that she felt more able to engage with these services. I note the CCG subsequently told Miss C it could arrange for her to receive these services at another facility (Placement 2).
44. In his comments on my draft decision statement, Mr D said access to psychological therapy was limited at Placement 2 and only available in the mornings when Miss C was largely unable to engage with it.
45. My investigation did not consider the care provided to Miss C at Placement 2 and I am unable to comment on the provision of psychological services there.
46. However, the clinical records contain a Decision Support Tool (DST) that was completed for Miss C in October 2018 to determine her eligibility for Continuing Healthcare funding. This records that Miss C had been supported by a mental health nurse during her time in Placement 2. The DST also noted that Miss C’s general wellbeing had improved and that there had been a reduction in her anxiety. In my view, this suggests any omissions in the psychological support provided to Miss C did not have a significant impact on her care.

Information about Placement 2

47. Mr D complained the family had been led to believe that Miss C would have a newly refurbished room with a view of the garden when she moved to Placement 2. Instead, Mr D said she was placed in a small room that had not been refurbished with a view only of the concrete courtyard outside. Mr D said it took four months for Miss C to be moved to an appropriate room and that this greatly impacted on her rehabilitation and willingness to engage with the placement.
48. The CCG said the family had been shown around Placement 2 by the matron prior to Miss C’s transfer. The CCG said it is not possible for Placement 2 to give guarantees about which room Miss C would be transferred. The CCG said this is because patients are admitted and discharged regularly and bed availability changes as a result. The CCG said it transferred Miss C to a different room as soon as one became available. The CCG also apologised for any misunderstanding with regards to room allocation.
49. There are no notes relating to the family’s visit to Placement 2 and no contemporaneous evidence to help me find out what was discussed at that time. However, I accept the CCG’s point that it would not have been possible to allocate a specific room in advance as allocation would be determined by room availability at (or shortly before) the time of transfer. On balance of probabilities, therefore, it seems more likely that the confusion over the room allocation was a result of a misunderstanding rather than any deliberate attempt to mislead the family.
50. Placement 2 arranged for Miss C to be transferred to a different room as soon as one became available and the CCG apologised for any misunderstanding. In my view, this was a reasonable and proportionate response to this matter. I found no fault by the CCG here.

Discharge from Placement 2

51. Mr D complained that the Council and CCG failed to appropriately assess Miss C’s care needs before discharging her back into the community. He says this meant Miss C was discharged without care.
52. The CCG said it completed a DST to assess Miss C’s eligibility for CHC funding in October 2018. The CCG said this concluded Miss C did not have a primary health need and that she was not eligible for CHC funding. As a result, the CCG said the Council became the lead commissioner for Miss C’s care and was responsible for arranging her care in the community following her discharge from Placement 2. However, the CCG said it continues to work with the Council to ensure Miss C’s care needs are met.
53. The Council said a social worker discussed possible care options with Miss C and completed a social care assessment and care plan. The Council said it arranged a care package for Miss C following her discharge from Placement 2 and has provided additional social services and occupational therapy support throughout its involvement in Miss C’s care.
54. The care records show there has been extensive discussion around Miss C’s long-term care needs since 2017. However, it is also clear that there have been significant disagreements between Miss C and the professionals involved in her care as to the extent of her needs and the care required to meet them.
55. In late 2017, when Officer B visited Placement 1, she advised Miss C what care options were available to her. Officer B explained that that Miss C could return home with a care package to meet her assessed needs. However, she explained that, based on the care Miss C was receiving at Placement 1, professionals felt she did not require 24-hour live-in care. Alternatively, Officer B advised that Miss C could move to an alternative placement without the same focus on rehabilitation. At that time, Miss C agreed to move to Placement 2 pending further discussions about her long-term care.
56. In February 2018, Miss C contacted the Council to request social services input and explore possible accommodation options.
57. The Council allocated Miss C’s case to a social worker, who visited her at Placement 2 in April 2018. Miss C explained that she would like to move into the community and the social worker advised her how to apply for social housing.
58. Miss C later submitted a housing application to the local district council. However, she was not considered to be a priority as she was not at risk of homelessness.
59. Miss C continued to correspond with the Council about her needs over the following months. She expressed concern that pop-in care visits would not be suitable and that she would not have the necessary care at night.
60. The social worker completed a review of Miss C’s care needs in September 2018. This found Miss C did have eligible care needs. However, Miss C was unhappy with the proposed indicative budget, which she felt would not allow her to purchase the level of care she required. Miss C submitted a self-assessment setting out her care requirements.
61. The case was reallocated to another social worker who shared a proposed care plan with Miss C in March 2019. This was based on information provided by Miss C and her family, the care records and input from the CCG. The care package included five daily care visits to assist Miss C with her personal care, medication administration, meal preparation and domestic support.
62. In the meantime, it was announced that Placement 2 would close in May 2019. As this placed Miss C at risk of homelessness, the district council reassessed her housing application and placed her in the top priority band.
63. Mrs D wrote to the social worker in March 2019 regarding the proposed care plan. She expressed concern that this arrangement would leave Miss C without support for a significant period in the evening and at night. She proposed arranging Miss C’s care in two equal half-day visits (from 8.00am to 1.30pm and from 4.30pm to 10.00pm).
64. In April 2019, Miss C signed a tenancy agreement for a bungalow. She contacted the social worker to reiterate concerns about the proposed care package, explaining that she believed she needed additional care hours.
65. Mrs D also informed the social worker that a dietician would be reviewing Miss C’s PEG feed as there were concerns that Miss C was gaining weight.
66. On 11 April 2019, the social worker wrote to Miss C and Mrs D. She suggested discharging Miss C to her new home with the proposed package of care. The social worker explained that she would then review the package as part of a period of assessment. However, Mr and Mrs D disagreed with this approach, informing the social worker that they believed it would leave Miss C without appropriate care.
67. The social worker convened a multidisciplinary meet on 29 April 2019 to discuss Miss C’s care. This revealed that Miss C’s PEG feeding regime would be changing based on advice from the dietician.
68. The social worker subsequently wrote to Miss C to advise that she would need to be discharged from Placement 2 by 14 May 2019. The social worker shared a revised care plan with Miss C. This allowed additional time for carers to assist with PEG feeding.
69. Mr and Mrs D responded to express dissatisfaction with the proposed care package and said “[w]e will not allow you to move [Miss C] into her bungalow with an unfair and unworkable care package.” This was followed by an email from Miss C in which she reiterated their concerns.
70. The social worker convened a further meeting, including Mr and Mrs D, to discuss Miss C’s discharge. A care package was agreed involving two five-hour care visits per day. It was agreed Miss C would be discharged on 14 May 2019, with Mrs D to provide care for the first week following discharge until the care package could commence.
71. The discharge went ahead as planned on 14 May 2019. The care package commenced on 3 June 2019.
72. The care records make clear that Miss C’s case is complex. The discharge planning process required extensive multidisciplinary coordination to accurately assess Miss C’s needs. There was also significant disagreement between the family and the Council with regards to the extent of Miss C’s needs and how these could be safely met in the community. The situation was further complicated by the pending closure of Placement 2. This imposed challenging timescales for discharge.
73. The evidence shows a social worker assessed Miss C’s social care needs and invited her views on the level of support she required. The social worker used this information to produce a care and support plan detailing a proposed care package for Miss C’s discharge into the community. This was in keeping with the requirements of the Care Act 2014.
74. It is apparent that, despite extensive correspondence between the Council and Miss C’s family, it was not possible to agree a care package that would be satisfactory to all parties.
75. In my view, there is evidence to show the Council was responsive to the family’s concerns, albeit there was no agreement about the extent of Miss C’s care needs. The social workers involved in the case sought input where appropriate from other professionals involved in Miss C’s care (such as CCG officers, occupational therapists and care staff at Placement 2) to obtain a clearer picture of her health and social care needs. They also convened several multidisciplinary meetings to discuss Miss C’s care and allow her to present her views.
76. Meanwhile, the social workers continued to provide the family with advice about possible housing options to support Miss C’s move into the community.
77. The situation was not ultimately resolved until May 2019 when, following a further care meeting, the Council agreed to amend the proposed care plan in accordance with the family’s wishes.
78. I accept it took a significant amount of time to agree a care package for Miss C. However, I do not consider this to be a result of fault by the Council or CCG. Rather, the delay appears to have been attributable largely to the significant disagreement between the Council and family as to the extent of Miss C’s needs.
79. In my view, the evidence shows the Council and CCG appropriately assessed Miss C’s care needs and arranged a suitable package of care to provide these needs. I found no fault by the Council or CCG regarding the handling of Miss C’s discharge, therefore.

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Final decision

80. I found no fault by the Council and CCG in relation to the care and support they provided to Miss C. I have now completed my investigation on that basis.

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Investigator's decision on behalf of the Ombudsman