East Staffordshire Clinical Commissioning Group (17 017 844a)

Category : Health > Other

Decision : Upheld

Decision date : 15 Jan 2019

The Ombudsman's final decision:

Summary: Mrs T complained about problems she had accessing funding for her daughter, Miss R. The Council did not complete reviews properly and failed to allocate a social worker to Miss R’s case. The CCG took over 12 months to decide that Miss R was eligible for healthcare funding and took too long to agree a suitable support plan. This caused injustice to Miss R’s paid carers which include Mrs T. The Council and the CCG agreed to the Ombudsmen’s recommendations to apologise, pay a financial remedy, complete a retrospective review of Miss R’s entitlement to healthcare funding and consider whether any lessons can be learnt.

The complaint

  1. The complainant, who I shall refer to as Mrs T, complains about the failure of Staffordshire County Council (the Council), East Staffordshire Clinical Commissioning Group (the CCG), Mill View Surgery (the GP Surgery) and Stapenhill Medical Centre (the Medical Centre) to refer and consider her daughter, Miss R, for healthcare funding when she was a child and when she transitioned to adult services. Mrs T complains the CCG then delayed in providing Miss R with a personal health budget (PHB) since the date it accepted she was eligible for full healthcare funding. She also says the CCG has failed to pay redress and agree a suitable support plan which meets Miss R’s needs.

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The Ombudsmen’s role and powers

  1. The Ombudsmen have the power to jointly consider complaints about health and social care. Since April 2015, these complaints have been considered by a single team acting on behalf of both Ombudsmen. (Local Government Act 1974, section 33ZA, and Health Service Commissioners Act 1993, section 18ZA)
  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)).
  3. If it has, they may suggest a remedy. Our recommendations might include asking the organisation to apologise or to pay a financial remedy, for example, for inconvenience or worry caused.  We might also recommend the organisation takes action to stop the same mistakes happening again.
  4. 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)

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How I considered this complaint

  1. I have considered information provided by the complainant and information from the organisations named in this complaint provided in response to the Ombudsmen’s enquiries. I have also considered the law and guidance relevant to this complaint. All parties have had an opportunity to respond to a draft of this decision.

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What I found

  1. Local authorities have a duty to assess the needs of disabled children and their families. The Government has issued statutory guidance which sets out the assessment process in detail.
  2. Following the assessment, the local authority must produce a care plan which sets out the nature and extent of the services to be provided. The care plan must clearly identify the child’s needs, what is to be done about them, by whom and when. Assessments must address foreseeable future needs as well as present needs.
  3. There is an expectation in the law and guidance that where a disabled child is assessed as having substantial needs, those needs will be met through the provision of services. The local authority must follow a rational process for deciding which children are eligible for services and which are not. The criteria must be clear, transparent and take account of the impact of disability on children and their families.
  4. Sections 9 and 10 of the Care Act 2014 require local authorities to carry out an assessment for any adult with an appearance of need for care and support. An assessment must be provided to all people regardless of their finances or whether the local authority thinks an individual has 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 also involve the individual and where appropriate their carer or any other person they might want involved.
  5. The National Framework for Children and Young People’s Continuing Care 2016 (‘the C&YP Framework’) sets out an equitable, transparent and timely process for assessing, deciding and agreeing bespoke continuing care packages for children and young people whose needs in this area cannot be met by existing universal and specialist services. For this complaint, I also refer to the 2010 guidance which was relevant at the time. This says:
  6. “The focus of the Framework is the process by which nominated healthcare assessors carry out holistic assessments of children and young people’s continuing care needs and the related needs of their families. These needs generally arise from congenital conditions, long-term deteriorating conditions, accidents or the after effects of serious illness or injury.

A continuing care package will be required when a child or young person has needs arising from disability, accident or illness that cannot be met by existing universal or specialist services alone. Continuing care does not cover children and young people with care needs that may be met appropriately through existing universal or specialist health services. In this instance, their needs should be addressed using a case management approach.

Continuing care is organised differently for children and young people than for adults. Continuing care for adults is governed by the National Framework for NHS Continuing Healthcare and NHS-funded Nursing Care. That framework

gives guidance on putting in place complete packages of care where an adult

has been assessed as having a primary health need. It means that the provision

of all their resulting care needs, whether at home or in a care home, is the

responsibility of the NHS…

PCTs are responsible for leading the continuing care process set out in this

Framework. However, a child or young person with continuing care needs

may require services commissioned by the PCT, the local authority, and other

partners. Where a child or young person requires services commissioned by

multiple organisations, the PCT is responsible for leading the commissioning

care process, involving the local authority and other partners as appropriate.”

  1. The C&YP Framework also says the assessment phase is the first stage of the continuing care process and should be led by a nominated children and young people’s health assessor as to whether a child or young person has continuing care needs than cannot be met by existing universal or specialist services. Following assessment some children or your people will need a package of continuing care involving bespoke commissioning and funding arrangements.
  2. Generally, a child or young person will develop continuing care needs for one of the three following reasons:
    • Congenital – where a child is born with either a diagnosed or an undiagnosed congenital condition that is likely to necessitate a continuing care need.
    • Long-term deteriorating conditions – continuing care referrals that arise for children and young people with complex, deteriorating conditions.
    • Sudden unexpected need – accidents or after-effects of serious illness or injury can result in a child or young person suddenly developing continuing care needs.
  3. The legislation and the respective responsibilities of the NHS, social care and other services are different in children’s and adult services. The terms ‘continuing care’ (in relation to children’s services) and ‘NHS continuing healthcare’ (in relation to adults) also have different meanings.
  4. The Department of Health’s National Framework for NHS Continuing Healthcare and NHS‑funded Nursing Care (October 2018 (Revised)) (the National Framework) is the key guidance about Continuing Healthcare. It states that where an individual is eligible for Continuing Healthcare funding the CCG is responsible for care planning, commissioning services and case management. For this complaint, I also refer to the November 2012 guidance which was relevant at the time.
  5. CHC is a package of ongoing care that is 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.
  6. If the completed CHC Checklist indicates the person may be eligible for a CHC eligibility assessment, 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 should be completed within 28 days of the CHC Checklist unless there are ‘valid and unavoidable’ reasons for it taking longer.
  7. The DST makes a recommendation about whether a person is eligible for CHC or for NHS-funded nursing care, which is set at a weekly rate. The relevant CCG will then make a final decision which must uphold the recommendation of the DST in all but exceptional circumstances.
  8. With a Personal Health Budget (PHB) people who are entitled to CHC can get their funding for both health and social care as a personal budget with which they can buy the care they need. This can be through direct payments. CCGs must ensure people who get a PHB have access to information and advice.
  9. NHS England’s guidance says, “The purpose of personal health budgets is to give people greater choice and control over how their health and well-being needs are met. CCGs should be open to considering different approaches to achieving outcomes other than those traditionally used. CCGs should consider any request where the person can demonstrate that the proposed use of a budget is a reasonable way to achieve their health and wellbeing outcomes. The balance between risks and benefits will be different for each individual, taking into account their particular circumstances and their health condition. CCGs should ensure that they do not impose blanket prohibitions, and are sufficiently flexible to tailor their risk management processes to the needs of each individual.”
  10. A person can make a claim for CHC funding after a period of care has elapsed, for example, on behalf of someone who has died. In 2012 the Department of Health introduced a single national process, to determine whether an assessment should be carried out for previously unassessed periods of care. It also introduced set timescales for people to notify the NHS that they should have been assessed for eligibility for NHS CHC funding with respect to that care. The responsibility to ensure the process was followed passed from Primary Care Trusts to Clinical Commissioning Groups in April 2013.


  1. Miss R was diagnosed with a rare metabolic disease when she was a baby. As a result, she suffered significant brain injury which caused severe dystonia and expressive aphasia. Dystonia disrupts the nervous system’s ability to allow the brain and muscles to communicate. She is a fulltime wheelchair user and unable to feed herself without support.
  2. Miss R has always lived in the family home with Mr and Mrs T and other family members. Throughout her life her care and support has been provided by Mrs T and other family members. The family provide Miss R with 24-hour care and support daily. A critical care consultant who treated Miss R confirmed that without the presence of a familiar person Miss R becomes very agitated with severe deterioration of her dystonia leading to breathing problems.

What happened

  1. Miss R registered at the Medical Centre as a patient in 1997. Around this date Miss R suffered a metabolic crisis and information from the Medical Centre confirms Miss R was referred to the community paediatrician in May 1999.
  2. The Medical Centre was aware that Miss R received other services such as speech therapy and educational therapy in 1999. A doctor (from a children’s centre) made a referral to the social services department in 2000 after a previous referral from a physiotherapist resulted in no further action. A document referred to as ‘Investigation & Assessment Pack’ noted Miss R had developmental difficulties which required further investigation/action. The document was later marked for no further action but does not show how this decision was made.
  3. The Medical Centre confirms it did not refer Miss R to the relevant primary care trust (PCT) as this was not something general practitioners were usually involved in. It said it does not know what the usual practice was at the time. Miss R moved from the Medical Centre to the GP Surgery in 2001.
  4. The GP surgery confirmed that after Miss R became a patient she underwent a procedure to have a brain stimulator fitted. The funding for this was approved by the PCT and the GP Surgery said at the time the PCT was aware of Miss R’s complex needs. The GP Surgery made a referral to children services around 2006 as it felt Miss R and her family needed extra help. The GP Surgery says a referral to PCT should most likely have been made by the medical team providing Miss R with specialist care and treatment at the time.
  5. The Council completed an initial assessment in early 2007. The assessment noted that Miss R attended a special education school for children and young people with physical disabilities and complex medical needs. The assessment recorded “all of [Miss R’s] care needs are met by parents primarily her mother…” In summary, the assessment noted Miss R:
    • was fed by hand and needed to have her head tilted when drinking as she could not swallow independently;
    • could not care for herself at all and it was anticipated this would not improve;
    • could not weight bear or walk;
    • was being moved and handled by hand for bathing upstairs; and
    • was at risk of suffocating when asleep.
  6. Following assessment, a panel considered funding to meet Miss R’s “high level needs” as recorded on the panel notes. The panel awarded 16.5 hours of care and support weekly paid via direct payments. This included 10 hours weekly for personal care support and 10 hours monthly for leisure support.
  7. The Council provided copies of reviews it says it completed during the time
    Miss R received support. The forms are not signed by the social worker or by
    Mrs T or Miss R. They are also incomplete in sections.
  8. The Council also provided funding by way of disabled facilities grant to Mr and Mrs T’s self-funding adaptations to their property for Miss R. Its occupational therapy team remained involved with the family in relation to other aids and equipment.
  9. Mrs T asked the Council to increase the direct payments in 2012. Mrs T and the family said they were not getting enough support from social services and were “being passed from pillar to post”. The Council allocated the case to a social worker in October 2012. The social worker completed a home visit in November 2012 then had no contact with Miss R or Mrs T for almost a year following this visit. The social worker then contacted Mrs T in September 2013 and gathered further information in October and November. However, the social worker did not complete an assessment.
  10. The Council’s occupational therapy team had some contact with Mrs T in 2014 about moving and handling a new seat for Miss R. The Council also spoke to Mrs T about an issue with the direct payments (overspend). In May, Mrs T told a duty officer she was unhappy with the service from children social services as she had no support. The officer told her a child in need review was due and managers would decide whether to allocate a social worker but “either way a review will be arranged and mum can discuss concerns then.”
  11. In June 2014, when Miss R was about 17 years old, Mrs T spoke to an officer and said she wanted to have an allocated social worker. Mrs T told the officer Miss R needed more care and providing care was time consuming and she (Mrs T) felt physically exhausted. The Council’s notes state “she would like to know what is available to her be kept up to date with changes and a review of the current support hours”. The notes also refer to transition planning. The officer emailed a manager within the social work team asking them to contact Mrs T.
  12. The Council’s notes refer to a referral made to the adult social work team in September 2014. In December, an officer from children’s services contacted the adult social work team to ask the team to complete a social care assessment with Miss R.
  13. In January 2015, a social worker from the adult social work team visited Miss R and her family to complete a social care assessment. The assessor decided
    Miss R had critical needs after assessing her under the fair access to care criteria.
  14. The social worker went to visit Miss R and Mrs T again in February 2015 to provide a copy of the support plan. The support plan states Miss R needs 24-hours of support daily and records a care package of 168 hours of weekly support funded by the Council. Mrs T said this later increased to 229 hours weekly.
  15. The Council completed a carers assessment and identified that Mrs T wanted extra help and support to manage her caring role. The assessor recorded that Mrs T’s health had recently deteriorated and this could have an impact on her caring role. The Council said it provided advice and information but did not provide any other carer relief as indicated by the family. The assessment is unsigned and undated by the assessor and by the person being assessed.
  16. The Council said the allocated social worker then closed Miss R’s case before leaving their position. Mrs T complained to the Council because she was unhappy that Miss R did not have an allocated social worker when she transitioned to adult services. The Council upheld the complaint and apologised to Mrs T as it found Miss R did not have a social worker in place.

Involvement of the CCG

  1. The CCG received a referral for NHS continuing care funding in June 2015. A district nurse completed a DST after Miss R was aged 18 years old. The CCG said the referral was incomplete and it needed further evidence about the assessment. It received the further information in July 2016 and then approved Miss R’s eligibility for healthcare funding in August 2016.
  2. The CCG initially offered a care package of 126 hours weekly to Miss R based on a live-in carer providing support. Mrs T said the CCG’s initial care plan meant
    Miss R would be left on her own for 10 hours daily. The CCG said this was not the case and the live-in carer would provide waking and sleeping hours and be present 24 hours daily and family were providing support.
  3. The CCG also had an arrangement in place whereby it asked the Council to continue paying the direct payment already in place while it dealt with the personal health budget.
  4. The CCG commissioned a third-party agency to work with Miss R, Mrs T and other family members to agree Miss R’s care and support plan. The agency assessed that Miss R needed two carers to provide support 24 hours daily. The CCG also considered assessments from speech and language therapy, occupational therapy and moving and handling assessments.
  5. There was a marked difference of opinion between what the CCG said was suitable to meet Miss R’s needs and what the family, namely Mrs T, said she needed to stay safe and well. Mrs T provided the CCG with diaries to show the care and support she and other family members provided to Miss R.
  6. Mrs T also wrote to the CCG about redress she calculated was due before Miss R reached 18 years old, when she was a child. These events occurred over a period of at least two years. I have not referred to all the correspondence between
    Mrs T and the CCG during this period which relates to the personal health budget and support plan.
  7. The CCG wrote to Mrs T in May 2018 about the personal health budget and
    Miss R’s care and support plan. In summary, the CCG said:
    • it held a CCG panel meeting on 17 April 2018 and decided the personal health budget;
    • a third-party care agency would employ six family members to provide a package of care consisting of two-to-one support 24-hours daily. This equated to 336 hours of care weekly;
    • it agreed to commission the 24-hour care on a two-to-one basis because the assessment indicated Miss R needed to have a second carer to provide various care interventions;
    • it needed further updated assessments and reports relating to nutrition and hydration;
    • it acknowledged that Miss R became anxious when strangers came into her home and this can exacerbate her symptoms. However, it considered it was essential for other personal assistants to be introduced to ensure the safety and sustainability of the care package;
    • it would ask the CHC team to provide governance and monitor the care and support package monthly. This would include a full review of the CHC care package at three months and
    • it was considering Mrs T’s claim for reimbursement of previous care costs and would write to her once it had calculated the amount due.
  8. The CCG said Miss R’s complex needs coupled with arranging care solely provided by family members was unusual. The CCG said Mrs T provided diaries to show the care and support provided by family members but it had limited information from other professionals. This was unique in the CCG’s experience and says it caused some difficulty when completing assessments.
  9. The CCG asked a third-party agency to provide regular monitoring and oversight over the care package it put in place. This helped the CCG assess the sustainability of the care package and any change in need.

Mrs T’s formal complaints to the Council and the CCG

  1. Mrs T complained to both the Council and the CCG about the failure to provide Miss R with care and support when she was a child, failure to ensure her health needs were properly considered and failures around transitioning.
  2. In summary, the Council said it did not refer Miss R to be considered for C&YP continuing care because its duty is to provide social care and could not decide whether a person had a health needs. It said it provided a care package which met Miss R’s needs when she was a child.
  3. In summary, the CCG said it did not receive a referral to consider Miss R for health funding before it received the referral from the district nurse in 2015. It said, had it received a referral before this date, it would have actioned it.

Response to the Ombudsmen’s enquiries

  1. The Council responded to the Ombudsmen’s enquiry and in summary said:
    • when Miss R was a child a referral to NHS C&YP continuing care was only completed when a child had nursing needs (requiring a trained nurse to provide care) which at the time Miss R did not need;
    • it should have completed an assessment in 2012 when the family requested more support via direct payments but it did not. This meant a recommendation was not made at the time; and
    • Miss R did not have an allocated social worker when she transitioned to adult services and this meant
  2. The CCG responded and said:
    • it repaid £19,137.14 to Mrs T for care the family provided to Miss R based on the CCG’s current assessment of her needs. It said 20% had been held back because of HMRC and NHS England guidance. The payment reflected that family care provided is paid care;
    • it would review the time taken to make an eligibility decision from the date of referral to the CCG on 22 June 2015 to the date the decision was approved on
      03 August 2016 and consider if any further sums should be paid to Mrs T by way of ex-gratia payment to recognise any delay in the decision;
    • it would reconsider the funding already provided to Mrs T for the period between August 2016 and December 2017. The CCG was willing to consider if any further sums should be paid to Mrs T by way of ex-gratia payment to recognise any delay in the decision and any delay making a decision about the assessed need;
    • Miss R’s care plan has been finalised and a further request for funding is being considered; and
    • it is prepared to lead on a retrospective review between 2010 and 2015 when the referral was received by the CCG based on a review of records from the GPs, hospital, social care and any reports from specialist nurses/services to attempt to complete a care needs portrayal.


  1. Miss R has a rare condition which results in her having complex needs which require bespoke care and support daily. Miss R’s family have always provided her with the care and support that she needs.
  2. The evidence available shows Miss R’s family have always tried to fund her care and support wherever possible. Mrs T says this has been a struggle and has impacted on the family greatly. There is no good reason to doubt what Mrs T says.
  3. The Medical Centre and the GP Surgery were involved with Miss R from an early age. Mrs T provided copies of referrals sent to the Council in 1999 and 2000. One referral was sent by a physiotherapist and the other was from a GP. The referrals were marked for no further action after they were received by the Council. It is not clear how the Council decided no further action was necessary as I have not seen evidence of any assessment completed which show how the Council made this decision. Based on the evidence available I find the Council at fault. This leaves Miss R and her family with doubt about whether they should have had care and support provided by the Council earlier.
  4. When the GP Surgery made the referral to the Council in 2006 there was no framework available relating to C&YP continuing care. However, there was an expectation for health and social services authorities to work together to ensure a person’s needs could be met by relevant services.
  5. The Council provided direct payments to Miss R when it received a referral in 2007. The Council said it completed reviews regularly when it provided services to Miss R when she was a child. The reviews provided by the Council do not provide enough evidence to satisfy the Ombudsmen that it properly reviewed Miss R’s care needs consistently and in line with government guidance such as the ‘Framework for the Assessment of Children in Need and their Families’ published by the Department of Health. The reviews are unsigned and incomplete in sections which is fault and evidence of poor practice. I cannot say whether the support in place at the time was sufficient to meet Miss R’s needs.
  6. The Council said when Miss R was a child, referrals for C&YP continuing care were only made when a child had nursing needs which required a trained nurse to provide care. The Council has not provided documentary evidence to show its view is based on any policy it had in place at the time. The framework for C&YP continuing care was not available until 2010 but this says, “A continuing care package will be required when a child or young person has needs arising from disability, accident or illness that cannot be met by existing universal or specialist services alone.”
  7. The Council’s view, whether based on policy or any other factor, is not in line with the guidance intended to provide a framework for professionals and organisations involved in the care, support and treatment of children and young people.
  8. The Council admits it did not complete a review or reassessment when Mrs T asked for more hours of support. Mrs T told the Council she and the family were finding it difficult to provide support to Miss R. The Council is at fault for not completing an assessment. It is likely that Mrs T and other family members experienced increased carers strain during this time.
  9. The Council also admits that Miss R did not have an allocated social worker at the point when she was nearing transition to adult services. Mrs T made a request for extra support and an allocated social worker around this time. It took six months from the date of Mrs T’s request for the Council to arrange a social worker to visit and complete an assessment. This is fault. Given her complex needs, the Council should have ensured Miss R and her carers had a named officer who was monitoring the care arrangements. Miss R’s care arrangements were not as coordinated as they should have been, notably as she neared transition. As well as experiencing increased carers strain it is also likely that Mrs T and Miss R lost an opportunity to find out about all the care and support options available to them.
  10. When Miss R reached the point of transition and was assessed by an officer from the adult’s team, the support hours she needed increased substantially from 16.5 hours to 168 hours weekly support hours and then increased again to over 200 support hours. Mrs T says there was no change in Miss R’s needs to prompt the sudden increase in support. It did not take long for the Council to ensure Miss R came to the attention of the CCG following this increase in support hours.

The CCG’s role

  1. After the Council increased Miss R’s support package, the CCG received a referral which prompted it to consider whether Miss R was eligible for CHC. The CCG accepted Miss R had a primary health need but took about 12 months to make its decision.
  2. Since the date the CCG accepted Miss R had a primary health need there has been disagreement about how much support Miss R needs to keep her safe and well. As such, the support in place was not accepted by the family. The CCG considered a request for further support based on further assessment and investigation.
  3. The CCG refers to the complexities in this case and the time taken to complete assessments etc. The Ombudsmen have considered this further and refer to the National Framework which says “If, at the time of referral for an NHS Continuing Healthcare assessment, the individual is already receiving ongoing care and support funded by a CCG, or a local authority, or both, those arrangements should continue until the CCG makes its decision on eligibility for NHS Continuing Healthcare, subject to any urgent adjustments needed to meet the changed needs of the individual…”.
  4. When the CCG received a referral from the Council, it was aware that the Council had already completed social care assessments to inform the care package in place at the time of referral. The CCG could have used these assessments as an indication of Miss R’s overall health and social care needs. The CCG decided to reduce the care package less than the previous care package and later increased it following further assessment. The CCG should have acted in accordance with the National Framework and kept any existing arrangements in place while it agreed a final care package
  5. The CCG has already indicated that it is willing to consider whether a further
    ex-gratia payment is due to Mrs T because of a ‘short-fall’ in paid support hours. Mrs T has been writing to the CCG about what she refers to as “redress”. Mrs T’s reference to redress is based on the NHS Continuing Healthcare Refreshed Redress Guidance published in 2015. The guidance provides assistance to CCGs when settling claims for individuals arising from NHS Continuing Healthcare eligibility decisions, or, where an eligibility decision has been reached on a previously un-assessed period of care in respect of NHS Continuing Healthcare and the need for redress has been identified.
  6. In summary Mrs T feels the CCG should pay redress from when Miss R was a child as she believes she would have been entitled to C&YP continuing care from an early age.
  7. I have not found evidence of any guidance that is specific to retrospective assessments of children’s continuing care. The NHS Continuing Healthcare Refreshed Redress Guidance only relates to adults CHC. The C&YP Framework is silent on the issue of retrospective assessment and redress.
  8. It is important to clarify that C&YP continuing care is different to CHC for adults which is governed by the National Framework. The term ‘continuing care’ also has different meanings in child and adult services. The National Framework makes clear it is the NHS’s responsibility to put in place a complete package of care where an adult has been assessed as having a primary health need. This means the provision of all the resulting care needs, whether provided at home or in a residential care home, is the responsibility of CCGs.
  9. C&YP continuing care is different because there is an expectation that more agencies such as social services, education and health services work together to address continuing care needs holistically. The relevant guidance says, “it Is likely that a continuing care package will include a range of services commissioned by [CCGs], local authority children’s services and sometimes others.”
  10. The guidance also makes clear that the relevant health authority is responsible for leading on the continuing care process. However, this does not mean that the health authority is responsible for commissioning the full care package if a child or young person has continuing care needs requiring care and support. The guidance says, “all partners are responsible for funding their own contributions to the continuing care package in line with their statutory functions. Ideally this should happen through pooled or shared funding...”
  11. I cannot say whether Miss R had needs which were eligible for C&YP continuing care when she was child as she was not assessed. Although there is no specific guidance for carry out retrospective reviews for C&YP continuing care, there are no major practical reasons to prevent a retrospective review being completed.
  12. The CCG says neither themselves or the predecessor PCT received a referral when Miss R was a child. This provides an explanation to show why an assessment was not carried out at the time. Nevertheless, the appropriate organisations need to consider whether Miss R’s care and support should have been provided under the continuing care pathway. If Miss R’s needs should have been under the continuing care pathway she may have also had a right to a personal health budget. This also needs to be considered as part of any retrospective review.

Retrospective review by the CCG

  1. The CCG has agreed to lead on a retrospective review to try to determine whether Miss R’s needs should have been met under the continuing care pathway. The CCG has suggested the retrospective review starts from 2010 on the basis that the C&YP continuing care Framework started from March 2010. Given that there was no agreed national eligibility assessment process in place before March 2010, it is appropriate and pragmatic to start the review from this date as the CCG suggests.
  2. The review should include the period up to the date the CCG decided that Miss R had a primary health care need and consider what transition arrangements would have been in place at the time. The 2015 period before the CCG decided Miss R had a primary health need includes a time when she may have been eligible for adults CHC from the age of 18 years old. It is important that the CCG considers this factor and the relevant redress guidance (for the 2015 period when Miss R became an adult) as part of the retrospective review.
  3. The CCG said there is agreement from the Council, i.e. social services and education services, that the review is carried out. The CCG should also include any relevant health professionals and hospitals who were involved with Miss R when she was child. The C&YP continuing care guidance says, “the perception of the child or young person and their family of their support needs, and their preferences in having those needs met should be at the heart of the continuing care process.” The CCG should also seek to involve Miss R, Mrs T and other family members in the review as this is important.
  4. The Ombudsmen are aware the retrospective review will include a period before the CCG came into existence in 2013. The CCG has suggested that it has no liability for this period of care when the PCT was in existence. The Ombudsmen have considered the Department of Health’s Handover and Closedown 2012 guidance which deals with the transfer of liabilities and asks the CCG to consider this when completing the retrospective review.
  5. The Ombudsmen are aware that agreement to complete the retrospective review does not mean any authority has accepted liability for any unmet historical entitlement. The retrospective review is the first step in the process. The authorities can consider if there is fault and any respective liabilities, if any. After
    this consideration the appropriate bodies can consider and decide whether
    Miss R, Mrs T and other family members have experienced injustice requiring an appropriate remedy. This consideration could lead to a decision about restitution and redress. If Miss R and Mrs T remain unhappy with the outcome they can ask the Ombudsmen to consider a new complaint.

The CCG’s decision to consider ex-gratia payments

  1. Mrs T and other family members are Miss R’s paid carers. The family have not always received pay throughout the time they have cared and provided support to Miss R. Although the family have not always been paid carers, the evidence available suggests Mrs T and other family members are experienced and knowledgeable when it comes to providing Miss R with the care and support she needs. Miss R has difficulty engaging with outside support as this may exacerbate her condition, the evidence available shows the family are all dedicated carers which Miss R heavily relies on.
  2. The CCG commissioned a third-party agency to deal with Miss R’s care and support planning arrangements which included creating a support plan. Mrs T helped the agency to create the support plan and the completed plan stipulated two-to-one support was needed to ensure Miss R’s care and support could be delivered in the safest possible way and minimise risk.
  3. The National Framework says, “the package to be provided is that which the CCG assesses is appropriate for the individual’s needs”. The assessments commissioned by the CCG stated Miss R needed two carers to provide support. Based on the assessments, support plan and risk assessments available to the CCG at the time it should have considered two-to-one support in the interim while it investigated further. However, it later agreed that Miss R had needs requiring two-to-one support.
  4. The National Framework says, “it is important that the services commissioned and provided for a person in receipt of NHS continuing healthcare are based on supporting the outcomes identified in a care plan jointly developed and agreed with the individual and regularly updated and reviewed. There should therefore be strong linkages between the care planning and commissioning processes in CCGs.”
  5. After the CCG agreed two-to-one support there is evidence to show that Mrs T asked the CCG to carry out a manual handling plan because she felt Miss R needed three-to-one support. The CCG commissioned a care agency to carry out a manual handling plan in March 2018. Mrs T disputed the manual handling plan completed by the agency and requested a further manual handling plan be completed based on Miss R’s unpredictable needs. Following further assessment, which included trying different slings, the care agency agreed a manual handling plan requiring three-to-one support at the end of August 2018.
  6. Mrs T and a representative from the CCG recently confirmed a ‘new’ support plan has been agreed. This plan includes support being provided by two people
    24 hours daily and a third person providing an additional 18 hours of support daily. Following review, the CCG has taken account of the manual handling plan and the need for three-to-one support. This is good practice.
  7. The Ombudsmen have considered the injustice of this situation rather than the technicalities of support planning. The CCG had a responsibility to review the care arrangements and it was appropriate for it ask a care agency to complete additional assessments. The Ombudsmen are mindful of the need to review balanced against the time taken by the CCG to complete reviews. The CCG could have agreed three-to-one support from the date the assessment was completed at the end of August 2018.
  8. When considering the payments due, the CCG should begin by considering the date when it received the referral in 2015 up to the date it agreed two-to-one support. The CCG should also consider an ex-gratia payment based on three-to-one support from the date the manual handling plan was agreed in August 2018. Should there be any gap between the payments for three-to-one support starting and the current arrangement, the CCG should also take this into consideration.
  9. The Ombudsmen seeks to remedy injustice by placing a person back into a position they would have been. On the evidence available now, it is likely that
    Mrs T and other family members lost an opportunity to receive pay for the support hours they provided to Miss R as her paid carers. It is likely the CCG would have paid for two-to-one support sooner had it not delayed.
  10. The Ombudsmen recognises the CCG cannot always meet outcomes identified in a person’s care and support plan. Miss R wishes to remain in the family home and the CCG can balance cost against Miss R’s desire. There is evidence to show the CCG has tried not to interfere with Miss R’s right to family life and it has committed to meet her outcome of remaining at home. This is good practice.
  11. Other disputed aspects of Miss R’s support plan included a desire to go on holiday abroad. When someone receives NHS CHC in their own home their benefits, for example, disability living allowance or personal independent payment, are unaffected. Disability related benefits are intended to cover some disability related costs. Essentially, the CCG needs to meet the individual’s assessed eligible health, personal care and associated social care needs rather than each outcome identified in a support plan. Mrs T should work in agreement with the CCG to ensure that Miss R needs can continue to be met in the home environment by agreeing a sustainable and manageable care and support plan.
  12. Mrs T has also spent considerable time and trouble pursuing complaints against the Council and the CCG. The Ombudsmen considers some of this could have been avoided had the Council and the CCG acted without fault.

Further update following draft decision

  1. Following further discussion between the Ombudsmen and the CCG it said the Council provided information to show the direct payments it paid on behalf of the CCG between 23 June 2015 to 31 May 2018. The CCG calculated redress and ex gratia payments minus payments made by the Council (on behalf of the CCG) as set out below:
    • For the period 23 June 2015 to 10 August 2015 a payment of £5,703.11 (redress) + £564.10 (taxable interest) – £112.82 (20% deduction from taxable interest) = £6,154.39 to pay.
    • For the period 11 August 2015 to 31 July 2016 a payment of £50,136.50 (redress) + £4,558.64 (taxable interest) – £911.73 (20% deduction from taxable interest) = £53,738.41 to pay.
    • For the period 1 August 2016 to 12 December 2017 a payment of £70,275.60 (ex-gratia) to pay.
    • For the period 13 December 2017 to 31 May 2018 the CCG has already paid £23,991.13 but deducted 20%. To account for this it will pay £4,853.99
    • For the period 1 June 2018 to 30 August 2018 the CCG confirmed it already paid £43,680 for care costs.
    • For the period 31 August 2018 to 18 November 2018 the CCG has already paid £14,400 but deducted 20%. To account for this it will pay £2,880
  2. The CCG’s says the payments will need to proceed via its governance process for approval once it receives the Ombudsmen’s final decision. The Ombudsmen find no fault in this decision.
  3. Mrs T also responded to the Ombudsmen’s draft decision and said the CCG should pay redress based on the NHS’ refreshed redress guidance. Mrs T quoted from the National Framework’s ‘Annex F: Guidance on responsibilities when a decision on NHS Continuing Healthcare eligibility is awaited or is disputed”. This says:


i) no LA has provided community care services to an individual in circumstances where the Board or a CCG has decided that the individual is not eligible for NHS continuing healthcare, and

ii) the individual has arranged and paid for such services him or herself; and

iii) the individual disputes the decision that they are not eligible for NHS continuing healthcare and the Board’s or a CCG’s decision is later revised (including where the revised decision is as a result of an IRP recommendation),

the Board or the CCG should make an ex-gratia payment directly to the individual. When the Board or a CCG has revised its decision, whether as a result of an IRP process or not, this is a recognition that the original decision, or the process leading up to the decision, was incorrect. An ex-gratia payment would be to remedy any injustice or hardship suffered by the individual as a result of the incorrect decision. The Board or a CCG should take into account the Managing Public Money guidance as explained above.”

  1. This section of the National Framework applies specifically to disputes about whether someone is eligible for NHS CHC. In this case there has been no dispute between Mrs T and the CCG about Miss R’s eligibility because the CCG decided she was eligible. The dispute between Mrs T and the CCG has been about how much support Miss R needed to keep her safe and well and meet her needs. Therefore, Annex F of the National Framework does not apply.
  2. The Ombudsmen cannot decide what level of care was appropriate and adequate for Miss R from the date the CCG accepted she had a primary health need. This was a matter of professional judgement for the CCG. Mrs T provided information to the CCG to show why she disagreed with the level of support and it was for the CCG to consider this and act on any relevant information to inform its judgement.


  1. Miss R has complex needs requiring substantial care and support which has always been provided by her family from when she was an infant. The Medical Centre and the GP Surgery made appropriate referrals to the Council when it was apparent that Miss R needed extra care and support. I do not find the Medical Centre and the GP Surgery at fault.
  2. The Council received referrals when Miss R was an infant and it is unclear how it decided her case needed no further action. It later assessed her when she was a child and provided direct payments and Miss R’s family continued to provide unpaid support. The Council failed to complete formal reviews properly when
    Miss R was under the children’s social care team and it did not complete a reassessment when Mrs T said she needed more support. Because of this it is likely that Miss R’s family experienced increased carers strain. The failure to allocate a children’s social worker contributed to poor transition planning to the Council’s adult social care team.
  3. Once Miss R transitioned to the Council’s adult’s social care team the care package increased substantially. The Council agreed family members should be paid carers in line with Miss R’s choice and the effect that ‘outside support’ had on her condition. The Council then made a referral to the CCG so it could consider whether Miss R had a primary health need.
  4. The CCG took about 13 months to assess and decide that Miss R had a primary health need and this is not in line with the National Framework which indicates multi-disciplinary assessment should be completed within 28 days. The CCG has confirmed it has changed the way eligibility decisions are considered and timeframes are now audited. Therefore, it is not necessary to make a further recommendation for improvement.
  5. The CCG agreed that Miss R’s family could be her paid carers but remained in dispute about how many hours of support Miss R needed to keep her safe and well. The CCG took too long to decide that Miss R had needs which required extra support over and above what it initially agreed to provide. It is likely that Miss R’s family provided her with the support the CCG should have paid them to deliver. Mrs T also experienced inconvenience and distress when pursuing this complaint.

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Agreed Recommendations

  1. Within four weeks of the final decision the Council and the CCG have agreed to complete the following Ombudsmen’s recommendations that the:
    • Council apologise in writing to Mrs T for the avoidable distress caused to her when it failed to allocate a social worker. It will also apologise for the impact on her caring role when it failed to reassess Miss R’s needs when Mrs T asked it to;
    • Council pay Mrs T £1,000 for the carer’s strain experienced and a further £250 for her time and trouble in pursuing this complaint;
    • CCG pay the redress and ex-gratia payments shown in paragraph 94 of this decision statement to Mrs T and on behalf of other family members for the loss of opportunity to receive payment for support they provided to Miss R during the assessment and support planning process;
    • CCG pay Mrs T £500 to acknowledge the distress experienced and time and trouble in pursuing this complaint and apologise in writing to her and the other paid family members for inconvenience.
  2. Within three months of the final decision the:
    • CCG will lead on a retrospective review to include the Council’s children and adults social care team and the education department. The review should take account of the comments made by the Ombudsmen under the sub-heading ‘Retrospective review by the CCG’ in this statement;
    • review should include the period March 2010 to (but not including) the date when the CCG received the referral in June 2015. The retrospective review should consider background information to inform any view for example, referral sent to the Council in 1998 and 2000;
    • CCG should write to the Ombudsmen within three months with a report and documentary evidence to show the findings of the review group and any recommendations made, even if the review is not completed;
    • CCG should also send a copy of the review and any documentary evidence to Mrs T once the review is completed. It should also remind Mrs T that she can ask the Ombudsmen to consider a new complaint if she remains unhappy with the findings of the retrospective review; and
    • Council and the CCG should review the findings of this investigation and any subsequent findings once the retrospective review is completed to see if any lessons can be learnt.

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Final decision

  1. The Council and the CCG have agreed to the Ombudsmen’s recommendations so I have completed the investigation.

Investigator’s decision on behalf of the Ombudsmen

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Investigator's decision on behalf of the Ombudsman

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