Continuing Healthcare: Getting it right first time

Complaints about NHS Continuing Healthcare

PHSO’s casework has been instrumental in achieving improvements in the structure and processes of NHS CHC since our first report on this subject in 1994.

Following PHSO’s 2003 report on CHC, NHS funding for long term care: 2nd report - session 2002 to 2003, the Department of Health set aside £180 million to provide redress for people who were eligible for NHS CHC but instead had to pay privately for nursing care. Our work provided a unique source of learning that was also instrumental to the Department of Health developing the National Framework, which provides guidance that all CCGs must follow when making decisions about NHS CHC. 

The National Framework has given people in need of NHS CHC and their families, CCGs, local authorities, care providers and PHSO a set of national guidelines about what people are entitled to and the responsibilities of the different organisations involved. The National Framework also makes clear that everyone faces the same eligibility criteria for NHS CHC, regardless of where they live.

Despite this, we still see many complaints about NHS CHC where CCGs have not acted in line with the National Framework.

Between April 2018 and July 2020, PHSO made decisions on 336 cases relating to NHS CHC. Of the 150 cases we investigated, we found failings in 55.

We were also able to achieve a resolution in 40 further cases without the need for a full investigation. We are increasingly working to ensure we get people the right decision at the right time when they bring a complaint to PHSO. Where we see that an organisation has made a mistake which could be resolved early on in the process, we will work with the organisation and the complainant to try and resolve the complaint without needing to undertake a lengthy investigation. This means we achieve a positive outcome for the complainant much sooner.

In this report, we focus on the two themes we have identified from reviewing these recently handled complaints:

  • Failings in care and support planning
  • Failings in reviews of previously unassessed periods of care

Failings in care and support planning

Care and support planning is vital to understanding and meeting a person’s care needs. From the CCG’s perspective, care and support planning for people eligible for NHS CHC is an essential part of commissioning a care package and meeting an individual’s assessed needs. It is mandated by the National Framework.

We have seen in several recent cases that too often care and support plans have not accurately identified a person’s needs in full. For example, a woman with significant care needs who had been receiving 24-hour NHS CHC-funded care had her overnight care removed. This was an arbitrary decision by the CCG which was not backed up by its own evidence on her care needs. As a result, her family had to pay £33,000 from their own funds for overnight care until our investigation resolved the situation.

Sometimes, we have seen that a care and support plan has not been produced at all, meaning people have faced no choice but to self-fund some of their care. For example, one man received only a 15% contribution to his care costs from a CCG who had failed to produce a care and support plan. This meant he paid out almost £250,000 for care that should have been paid for by the NHS.

Others have had to draw on additional unpaid care and support from their families. For example, one family paid for private care and provided additional care themselves as a result of the CCG not producing a plan to support a woman to live at home. This CCG’s decision to place an arbitrary cap on the level of NHS CHC-funded care meant her family paid for £187,000 of care privately and provided care worth a further £90,000.

Communication and involvement are central to a good, person-focused service. The National Framework is clear that the principle of personalised care should be followed when developing an individual’s care and support plan and commissioning their care. This is also a fundamental part of the NHS Constitution.

Some of the issues we have seen in relation to care and support planning could have been avoided with better communication about the NHS CHC process and what people should expect from a care package. People told us about the anxiety and stress they experienced as a result of the failings we have seen. NHS CHC is a complex part of the health and social care system, which people often access at a time when they are also under the stress and anxiety associated with managing their own or a loved one’s poor health. CCGs should support people to understand NHS CHC, with clear and effective communication and processes for challenge and review. Better communication and involvement, in addition to providing more information about care packages and processes, allows CCGs to better manage expectations. It also allows CCGs to actively seek feedback and resolve issues quickly and efficiently.

The cases we have included here are ones in which families have managed to fund and provide care themselves when these costs should have been met by the NHS. But failings such as these could have much more devastating consequences for people who do not have funds to draw on. People may have to give up work to care for a loved one, or sell the family home to fund care. This can have hugely detrimental impacts on families, including on their physical and mental health.

A further issue we have seen, as demonstrated in Ms F’s story below, is where NHS CHC funding and a care package have been put in place, but the care provider then agrees additional charges directly with the family without the knowledge of the CCG. The National Framework sets out that it is the CCG’s responsibility to make sure care providers are aware of the principles around additional charges. Where additional charges are proposed, the CCG should discuss this with the person using care to assure itself that the care plan and package is appropriate to meet their needs.

In Ms F’s story, the CCG was unaware of the additional charges set by the care provider. Nonetheless, CCGs should make care providers aware of their responsibilities and the processes that should be followed if additional charges are sought. CCGs should also be making people and their families aware of the processes to review charges.

What the National Framework says

The National Framework sets out that the role of CCGs is to assess a person’s eligibility for NHS CHC funding. Once eligibility is confirmed, the CCG must put in place an appropriate care plan and commission care provision. This must all be done with the involvement of the person, or their appropriate representative.

Care planning and delivery

165. Where an individual is eligible for NHS Continuing Healthcare, the CCG is responsible for care planning, commissioning services, and for case management. It is the responsibility of the CCG to plan strategically, specify outcomes and procure services, to manage demand and provider performance for all services that are required to meet the needs of all individuals who qualify for NHS Continuing Healthcare. The services commissioned must include ongoing case management for all those eligible for NHS Continuing Healthcare, including review and/or reassessment of the individual’s needs.

166. CCGs should operate a person-centred approach to all aspects of NHS Continuing Healthcare, using models that maximise personalisation and individual control and that reflect the individual’s preferences, as far as possible, including when delivering NHS Continuing Healthcare through a Personal Health Budget, where this is appropriate.

Figure 1: National Framework for Continuing Healthcare and NHS-Funded Nursing Care

The National Framework is clear that, once eligibility is established, a care package must be in place to meet all of an individual’s assessed health and social care needs as identified in the care and support plan. Personalisation is a core principle, ensuring that an individual’s preferences are reflected. The National Framework acknowledges that sometimes people might want additional voluntary services outside of the care and support plan. For example, for people living in a nursing home, this might include services like hairdressing or nail care that are provided at the same location.

The National Framework stipulates that all additional services and charges should be clearly identified. Crucially, it also says that the CCG should discuss with the person or family why they feel they require additional services, to make sure the NHS CHC package is sufficient to meet the person’s assessed care needs in full. The CCG should also ensure the care provider is aware of these principles and refers any request for additional services to the CCG for consideration.

The National Framework gives CCGs and practitioners clear roles. NHS England and NHS Improvement has also developed an NHS CHC e-learning tool to support those working at the frontline to meet their responsibilities.

What our casework tells us: failings in care and support planning

Mr S’s story

Mr S suffered severe brain damage as a result of a clinical incident in 2002. He returned home from hospital in 2005, with his care funded through NHS CHC. He pursued a clinical negligence claim and, in 2010, he was awarded a financial settlement from the hospital Trust, leading to annual payments. This settlement included private healthcare for seven hours a week.

In 2012, Mr S’s deputy (A deputy is someone who can make decisions on behalf someone who is not able to make decisions themselves, for example because of a mental or physical impairment) wrote to the CCG to forfeit his NHS CHC funding and opt for private care, paid for from his personal injury settlement. The deputy negotiated with the CCG to pay 15% towards the cost of Mr S’s care. This was a mistake by the deputy.

In 2014, Mr S changed his deputy. The new deputy asked the CCG to reinstate the NHS CHC funding. The CCG reviewed Mr S’s eligibility in 2014, finding him eligible for full NHS CHC funding. However, over the next five years, Mr S was unable to secure the NHS CHC-funded care he was entitled to, after a series of failings by the CCG.

The CCG failed to produce a care and support plan and did not put funding in place for Mr S’s care. The CCG continued to pay only the 15% contribution to Mr S’s care costs, leaving Mr S to carry on funding his own care.

Mr S’s deputy kept asking the CCG to reinstate the full NHS CHC package. As a result, the CCG reviewed Mr S’s eligibility again in 2016, once more finding him fully eligible for NHS CHC funding. The CCG again failed to prepare a care and support plan to understand his needs and did not put in place the full NHS CHC funding package, only paying the 15% contribution to his care costs.

After Mr S’s deputy made further complaints to the CCG, in November 2017 the CCG agreed to take on full responsibility for Mr S’s care package. It also agreed to reimburse him for the care he had paid for, dating back to the review in December 2016. It refused to reimburse him for the period dating back to 2014, even though the CCG itself had previously said that Mr S was eligible for NHS CHC funded care since that date.

When Mr S brought his complaint to PHSO through his deputy, it was clear to us in the early stages of looking at the case, that the CCG had not put in place a care and support plan, as mandated in the National Framework. If the CCG followed the National Framework when it found Mr S eligible for NHS CHC in 2014, it would have put in place a care and support plan and sourced an appropriate care package.

We worked with the CCG to achieve a resolution for Mr S without the need for a full investigation. Our intervention led to the CCG agreeing that it should have put in place a care and support plan and NHS CHC funding for Mr S from 2014. The CCG agreed to reimburse Mr S for the care he had paid for privately, for the full period between 2014 and 2017. This totalled approximately £250,000.

By working with Mr S and the CCG early on in PHSO’s process, we provided a positive outcome for Mr S and valuable learning for the CCG. Mr S has now finally been awarded the funding – and the care – he was entitled to.

Ms F’s story

Ms F was receiving NHS CHC-funded care at a residential nursing home. The CCG had agreed with the care provider to pay the standard fee.

The care provider subsequently agreed an additional care fee directly with the family. The contract for this additional fee explained it was not for any additional voluntary charges, such as the use of telephones, newspapers, hairdressing, private health care. The CCG was unaware of this additional charge.

It therefore appeared that the family were paying an additional charge for Ms F’s care. Although there are some types of services that a person may wish to use that would not be funded by NHS CHC, the National Framework places responsibility on the CCG to consider any ‘top-up’ services to assure itself that the care and support plan and package are appropriate for the person’s assessed care needs. This means that the CCG must consider any ‘top-up’ services first before the care provider charges someone for these additional services.

In Ms F’s case, the CCG did not have the opportunity to consider whether the additional services Ms F wanted to use should have been NHS CHC-funded. This is contrary to the National Framework. However, the CCG did not review the contract in response to the complaint made by Ms F’s family.

Following our intervention, the CCG agreed to review the contract between the care provider and the family and make sure that the NHS CHC care package met the care needs of Ms F in full.

Ms E’s story

Ms E suffered a stroke in 2016. She was assessed and found eligible for NHS CHC funding, with the assessment finding she needed the assistance of two carers at all times to support her daily living and keep her safe. The CCG found that Ms E’s needs would best be met in a 24-hour care setting.

Ms E’s family wanted her to be cared for at home. The CCG offered a care package equivalent to the cost of a nursing home placement plus 10%, which resulted in the CCG providing enough funding for one carer for seven hours a day. This meant the family had to provide additional care themselves, as well as paying privately for extra care.

The family complained about the care package. They submitted a record of the additional care costs they had incurred. The CCG reviewed Ms E’s NHS CHC eligibility two more times, both times finding she remained eligible for NHS CHC-funded care.

Despite this, the CCG did not produce a care and support plan setting out what Mrs E’s care needs were. As a result, it continued to fund only one carer for seven hours a day, even though it had said that Ms E needed support from two carers at all times.   

The CCG had a policy that it would only fund care at home up to the cost of nursing home care plus 10%. However, in this case, the policy was wrongly applied. The CCG used the arbitrary figure of a standard nursing home placement plus 10% to determine the level of care. The CCG did not compare costs of a nursing home placement with the costs of care at home to fully understand the cost of care in each potential setting and determine the funding needed to provide the level of care Ms E needed.

We found the failure of the CCG to produce a full care and support plan meant that Ms E’s care needs were not met by the care package it put in place. These failings had a profound impact of Ms E and her family. They were forced to pay for additional care, as well as provide additional care themselves.

We recommended that the CCG reimburse all the professional care costs incurred by Ms E’s family, totalling approximately £187,000. We also recommended the CCG reimburse the family for the care they provided to Ms E, totalling a further £90,000.

Ms P’s story

Ms P was provided with overnight care as part of her NHS CHC package from the start of 2017. In mid-2017, the CCG decided to remove the overnight care from the care package and instead provide additional care during the day. The CCG did not discuss this change with Ms P’s family. The CCG said it made this change because Ms P was no longer waking up during the night and she had not required any night-time care since she started using NHS CHC-funded care.

A review completed by the CCG’s NHS CHC practitioners after the removal of overnight care showed that Ms P still needed 24-hour care. Despite this evidence, the CCG decided that the overnight care was no longer needed.

We found that the CCG failed to discuss the changes in Ms P’s care provision with her family. It also failed to discuss and implement a suitable care and support plan to ensure Ms P’s care needs could continue to be met. It did not undertake a full review of Ms P’s care needs. As a result, Ms P’s family paid privately to ensure her overnight care needs were still met.

Ms P’s family told us that this experience was extremely distressing for them, as they were forced to pay privately to make sure she received the care she needed.

We recommended the CCG repay the cost of the care Ms P and her family had arranged following the removal of the night-time care. This totalled approximately £33,000.

Conclusions and recommendations

In addition to the individual cases we highlight in this report, we have examined the findings of others to understand why flaws remain in the care planning process. For example, organisations like the Continuing Healthcare Alliance (CHC Alliance) have suggested there may be a disconnect between the National Framework and frontline NHS CHC practitioners. This can mean that those at the frontline charged with care planning may struggle to bring the relevant members of a Multi-Disciplinary Team (MDT) together, or may themselves lack experience, leading to mistakes.

In 2016, the CHC Alliance also suggested a national training programme for frontline NHS CHC staff.

The NHS CHC Strategic Improvement Programme that is running from April 2017 until March 2021 has led to the development of the NHS CHC e-learning tool and the CHC Competency Framework for frontline staff in CCGs. Apprenticeships schemes and a level 7 Open University qualification (Level 7 qualifications are the equivalent of a master’s degree) are in development.

It is crucial that CCG staff undertaking care and support planning do so with the appropriate support, tools and expertise required. Not doing so risks people not receiving the care they need or families paying large sums, and potentially taking on financial risks, to ensure care needs are met. It also risks placing additional pressures on CCGs as they manage additional complaints and reviews when they do not get it right first time.

While there are CCGs who will get this right and be supporting their workforce’s skills and capability, all CCGs must assure themselves that staff involved in NHS CHC assessments, care and support planning and commissioning are appropriately skilled and experienced to deliver the quality and evidence-based actions people have the right to expect.

It is also good value for money for CCGs to make consistent and correct NHS CHC decisions and actions. NHS CHC assessments are a resource intensive process. Getting it right first time ensures workforce capacity is not impacted by unnecessary reviews and subsequent complaint handling. These take attention and resource away from making good quality assessments and care and support plans, and ensuring people get the care they need.

2020 has presented the entire NHS with unique challenges as a result of the COVID-19 emergency. New NHS CHC assessments were paused from March to 31 August, and frontline staff redeployed. This has resulted in a number of deferred NHS CHC assessments for CCGs to work through. While it is imperative for CCGs to undertake each assessment in accordance with the National Framework, it is also vitally important that the deferred assessments are dealt with efficiently so people are not left waiting for long periods of time without certainty about care provision. CCGs must not divert attention and capacity from this.

Alongside addressing the immediate challenge posed by the deferred NHS CHC assessments, NHS England and NHS Improvement and CCGs should work together to ensure the workforce is appropriately supported, skilled and experienced to conduct assessments effectively and develop accurate and comprehensive care and support plans in partnership with people using NHS CHC funded services.

The result of poor care and support planning can mean that a person’s care needs are not being fully met. In the cases we have seen, and those included here, families have paid for care outside of the CCG arranged care package. Two of the cases included here have resulted in CCGs repaying over £250,000 in redress to families that have paid out or provided care themselves to ensure their relatives received the care they needed.

Although the circumstances of each of the cases we have seen are unique, they all demonstrate the importance of effective and thorough care and support planning. Care and support planning must also be undertaken with the involvement of the person and their families or other representatives, as required by the existing guidance in the National Framework.

Mr S and Ms E’s stories both show how failure to produce a care and support plan can create situations where people are forced to pay out large sums of money to make sure their loved ones get the care they need. While the families in these case summaries have been able to find the money to pay for care, others will not be able to. This could have hugely damaging consequences.

Ms P’s story shows the importance of robust decision making in care and support planning when reviewing an individual’s care needs. This process must be inclusive, evidence based and supported by good communication with the person and their family. 

It is imperative that CCGs strive to get care and support planning and commissioning right first time. People must get the care they need and are entitled to at the time they need it, and not be forced to make the financial and emotional sacrifices experienced by many of the people and their families who complain to PHSO.

We make the following recommendations to support the frontline workforce to make quality, evidence-based and person-centred decisions:

Recommendation 1: Supporting the skills and experience of NHS CHC practitioners locally

CCGs should assure themselves that those involved in assessing care needs and developing care and support plans are appropriately skilled and experienced using the CHC Competency Framework. Regular training should be made available to frontline practitioners to ensure best practice is followed. At the least, CCGs should ensure frontline practitioners have undertaken learning from the NHS England and NHS Improvement e-learning tool to increase their knowledge and understanding.

Recommendation 2: Sharing learning nationally

In the short-term, NHS England and NHS Improvement should review the NHS CHC e-learning tool and other learning opportunities to ensure they take account of the learning from the case summaries included here and update them to ensure they provides effective support to the frontline NHS CHC workforce responsible for care and support planning and commissioning.

Recommendation 3: Putting learning into practice

In the long-term, NHS England and NHS Improvement should consider what additional support and coaching it can provide to care systems, CCGs and NHS CHC frontline staff to ensure they are appropriately supported and skilled in care and support planning and commissioning.

Recommendation 4: Supporting people and providers through the NHS CHC process

CCGs should ensure all parties to an NHS CHC-funded package of care are aware of the principles of NHS CHC funding and arrangements for additional services. CCGs should clearly explain in care and support plans what is included in the care package to meet the assessed needs, and the process that should be followed if any additional services or charges need to be considered.

Failings in reviews of previously unassessed periods of care

Sometimes, a person’s care needs can change over a long period of time and it can be difficult to ensure NHS CHC funding begins at the start of when a person becomes eligible. For example, a person may have been self-funding social care, either in a care home or in their own home. Over time, their care needs may change. They may subsequently be assessed as eligible for NHS CHC, but there is a period where their care needs had not been assessed. People can request a review of these periods, called a review of previously unassessed periods of care.

In 2012 and 2013, structural changes were made to the NHS following the Health and Social Care Act (2012).

Primary Care Trusts’ (PCTs) responsibilities for NHS CHC passed over to the newly established CCGs. As part of this change, the Department of Health set a series of deadlines for retrospective NHS CHC reviews. These deadlines meant that any claims for previously unassessed period of care relating to the period 1 April 2004 to 31 March 2011 had to be submitted by 30 September 2012. For periods of care between 1 April 2011 and 31 March 2012, they had to be submitted by 31 March 2013.

The Strategic Health Authorities (Strategic Health Authorities were regional bodies which were part of the NHS structure between 2002 and 2013. They were replaced by NHS England) jointly developed guidance to support claims for previously unassessed care in accordance with the deadlines set by the Department of Health. PHSO is still making decisions on cases relating to periods of care covered by the 2012 closedown deadlines because of the length of time it has taken for people to receive a final answer from their CCG, and then to make a complaint and receive a response. This is in part due to the high volumes of requests received and the two-stage review process as set out in legislation.

However, complaints are also coming to PHSO relating to previously unassessed periods of care dating from after 2012, which are not explicitly covered by the guidance.

For example, one family was denied a review of a previously unassessed period of care from 2012- 2014 because the CCG said it had not been specifically told it should review these periods by the Department of Health or NHS England.

The reasons for mistakes when reviewing previously unassessed periods of care are diverse and can be complicated. Included in this report are a range of cases which demonstrate where CCGs have made mistakes.

For example, in two cases included in this report, CCGs have relied on earlier flawed decisions and communications to rule out reviewing periods of care. In one case, a letter explaining a decision was sent only to the person receiving care who lacked capacity to review the decision. In another case, we saw a catalogue of errors in checklists and assessments which meant the decisions made about the person’s care were not robust.

In other cases, CCGs have put arbitrary barriers in place to providing appropriate redress for people eligible for NHS CHC. For example, one CCG did not do enough to gather evidence that the family had paid for care, meaning it was unfair in not reimbursing the family.

In some of the cases, we have either recommended a full review of a period of previously unassessed care following an investigation, or the CCG has agreed to undertake such a review following our intervention. Sometimes these reviews have not resulted in any additional eligibility for NHS CHC funding. This is just as important an outcome as a finding of eligibility and financial redress, as it gives certainty to the person or their family. For example, it can help with settling a person’s estate – one of the cases included in this report was brought to us by a company acting as an executor.

What the National Framework says

The National Framework says that anyone who may be in need of NHS CHC should be assessed. However, the National Framework does not set out how CCGs should handle a request for a previously unassessed period of care.

83. The Standing Rules require a CCG to take reasonable steps to ensure that individuals are assessed for NHS Continuing Healthcare in all cases where it appears that there may be a need for such care.

Figure 2: The National Framework for NHS Continuing Healthcare and NHS-Funded Nursing care

In 2012, the Strategic Health Authorities published additional guidance for CCGs handling requests for assessments of previously unassessed care. This guidance was intended to support local commissioners to handle reviews that were the result of the deadlines imposed by the Department of Health. It applies only to periods of care between 2004 and 2012. It has not been updated since 2012, nor has it been superseded.

This guidance sets out that reviews of previously unassessed periods of care should follow the same process as new referrals, as would have been required at the time of the care. For example, any claims relating to care before the National Framework was introduced in 2007 should follow the local criteria in place at the time. Claims for periods of care after that should be assessed according to the National Framework. Nonetheless, the guidance said that the principles of the National Framework should be regarded for all reviews regardless of the date when the period of care was being assessed.

In particular, this guidance said that the commissioner should collect all care records, GP records, any hospital records, social care records or records from other NHS services and put together a document setting out the person’s needs as the starting point for the full assessment. This should then be used by the multi-disciplinary team or panel to complete the Decision Support Tool and determine eligibility.

While this guidance only applies to periods of care between 2004 and 2012, the complaints we have seen include examples where CCGs have been advised by NHS England that they should review previously unassessed periods of care from after the 2012 closedown. The guidance for CCGs on recording data related to NHS CHC also sets out how previously unassessed periods of care from both before and after 2012 should be recorded, recognising that it is “still possible for CCGs to receive requests for ‘non-closedown’ [previously unassessed periods of care] relating to periods of care after 31 March 2012”.

What our casework tells us: failings in reviews of previously unassessed periods of care

Ms U’s story

Ms U was diagnosed with Alzheimer’s dementia in 2004. In 2008, the Primary Care Trust (PCT) completed a checklist to assess her eligibility for a full assessment for NHS CHC. Following this, the PCT wrote to Ms U to inform her she was not eligible for an NHS CHC assessment.

In 2009, the PCT reassessed Ms U and found she was eligible for NHS CHC.

In 2016, Ms U’s family requested a review of her eligibility for NHS CHC for the full period between 2004 and 2009. The CCG refused because a pre-assessment checklist had been completed in 2008 and indicated she would not be eligible. The family disputed this and requested copies of all past checklists, assessments, and correspondence for the period from 2004 to 2009. The CCG provided the checklist which showed Ms U was not eligible for a full NHS CHC assessment.

In 2017, the family requested a full review of the period from 2004 to 2008 stating that this period had not been assessed. The CCG reviewed this period and found Ms U was not eligible for NHS CHC. It also restated that as a checklist had been completed in 2008, it would not review the period from 2008 to 2009.

We found that the 2008 decision that Ms U was not eligible for a full NHS CHC assessment had only been communicated to her and not her family. This was a failing because Ms U did not have capacity to understand and challenge the decision. The National Framework states that in this case, the decision, and reasons for it, should be communicated to a carer or representative. They should also be informed about their right to challenge the decision and details of their rights under the NHS complaints procedure. This did not happen.

We found that the scores on the checklist reflecting Ms U’s condition were not supported by information in her medical records. This meant that the decision was not evidence-based or robust.

We recommended the CCG review the checklist from 8 July 2008 to determine whether Ms U required a full NHS CHC assessment. The CCG concluded that the checklist was completed incorrectly and carried out a full assessment of Ms U’s eligibility.

Mr J’s story

Mr J was awarded retrospective NHS CHC funding for a five-month period in 2011, to be paid to his estate. His niece, Ms D, was the executor of his estate and the CCG asked her to provide evidence of payments for Mr J’s care. Ms D asked Mr J’s nursing home to provide this evidence, which she in turn gave to the CCG.

The CCG decided this evidence was not sufficient, because it did not show proof of the charge for the care, or that the payments were made. The CCG told Ms D it needed bank statements as evidence of the payments. Ms D was unable to source bank statements from Mr J’s account.

The CCG’s own guidance states that where there are gaps in evidence for reviews of previously unassessed periods of care, the CCG should ask the care home or other relevant organisations for evidence, with the claimant’s permission.

For example, the CCG should have asked the local authority if it contributed towards the cost of the claimant’s care. It could also ask the claimant’s GP to verify the claimant’s address during the period in question. As a last resort, guidance states the CCG should reimburse the claimant at the rate of the CCG’s predecessor, the Primary Care Trust (PCT).

We found no evidence to show that the CCG attempted to gather evidence from any of these sources, or pay the claimant at the PCT rate, in line with its own guidance.

We recommended that the CCG obtain the necessary evidence of fees, or make a calculation based on precedent, and reimburse Mr J’s estate. The CCG subsequently paid Mr J’s estate over £6,000

Ms V’s story

Ms V was resident in a nursing home from 2008 to her death in 2010. Following her death, the company acting as executor of her estate sought a review of her NHS CHC eligibility for the period from 2008 to 2010.

The CCG wrote to the nursing home in November 2014, June 2015 and October 2015 requesting Ms V’s care records. The nursing home did not respond. The CCG closed the case in October2016.

The company acting as executor then obtained the records itself and made them available to the CCG. The CCG refused to review the care as the records had not been provided within a particular timescale.

We found the CCG did not do enough to obtain the records from the nursing home. It did not follow the 2012 guidelines for previously unassessed periods of care, which required it to collect all nursing home records. It also did not follow its own local policy, which set out the timescales and escalation process it should have followed when it did not receive a response from the nursing home.

We recommended the CCG undertake a full review of the care period in question.

Ms W’s story

Ms W died in 2015. She had been receiving care for the three years leading up to her death, which had been paid for by her family. Following her death, the CCG reviewed her care needs for the three months prior to her death and found her eligible for NHS CHC funding.

The family then requested a full review of Ms W’s care for the three years leading up to her death. The CCG only reviewed an additional three-month period prior to their earlier decision of eligibility, finding that she was not eligible. The CCG used this decision to say that a further assessment of the care from 2012 to 2014 was not needed.

We asked the CCG for an explanation why it had not assessed the full period of care. Our intervention prompted the CCG to work with the NHS England regional team to get clarity on whether to review the whole period. NHS England confirmed that the CCG should review the whole period. The CCG agreed to carry out this review.

Ms K’s story

Ms K was a resident in a nursing home from 2012 until her death in 2014. In 2016, her family requested the CCG review her eligibility for NHS CHC.

The CCG declined to review the period. It said it was not currently required to review the period of care and it was awaiting national policy and guidance on how to process requests relating to this period. Ms K’s family complained to the CCG about this decision, but the CCG reiterated its decision. It said that there was only guidance for claims for periods of care from 2004 to 2012. The CCG said it had received no policy or guidance from the Department of Health or NHS England on how to process claims for previously unassessed periods of care dating from April 2012 onwards. Ms K’s family then brought their complaint to PHSO.

We found that, although specific guidance did not exist, NHS England had told the CCG that it should undertake reviews of previously unassessed periods of care from after April 2012. We found no reason why the CCG should not have reviewed the care. We found that the CCG had denied Ms K’s family the opportunity to review Ms K’s eligibility for NHS CHC.

We recommended the CCG review the period of care. We also recommended the CCG reverse its decision not to review previously unassessed periods of care dating from after 2012.

Ms R’s story

Ms R was in a nursing home for seven years leading up to her death in 2013. Over this period, the CCG’s predecessor had either screened or assessed her needs on several occasions. There were also periods of care that had not been assessed.

Ms R’s family asked the CCG to undertake a full review of care for the whole seven-year period as they felt the proper processes had not been followed. The CCG decided not to review the period because its records showed that Ms R had been screened and assessed appropriately for the period.

We found that there were errors throughout the screenings and assessments the CCG’s predecessor conducted. Some screening checklists were not fully complete. At other times, the reviews did not consider NHS CHC. There was poor communication about decisions, which did not mention the right to appeal decisions. A period of three months, which should have been assessed for NHS CHC, was not assessed. One screening checklist should have prompted a full assessment for eligibility, but this was not carried out.

We concluded that the decision-making process was not robust and Ms R’s care needs had not been properly assessed. The CCG should have identified these mistakes. We recommended the CCG undertake this review.

Conclusions and recommendations

The cases we have seen about reviews of previously unassessed periods of care date back many years, in some cases more than a decade. The deadlines set in 2012 resulted in 63,000 requests to review a previously unassessed period of care and we are still seeing complaints reach us now from this period. The two-stage process for review, involving firstly the local CCG and then a review by NHS England, has meant people have waited many years for an answer to whether or not they or a relative were eligible for NHS CHC. Patients and families have been left with significant uncertainty about their financial situation for far too long.

CCGs should aim to be person-focused and seek to ensure people get certainty around assessment and eligibility for previously unassessed periods of care promptly. In many of the cases we have seen, the people who received care that had not been assessed for NHS CHC have died. CCGs must seek to treat them and their families with compassion and respect. They should deliver timely, evidence-based decisions, redress, and certainty.

The guidance for CCGs in reviewing previously unassessed periods of care was published in 2012 to support CCGs and their predecessor organisations. It was developed specifically to support those organisations to process previously unassessed periods of care between 2004 and 2012 in the context of the deadlines set by the then Department of Health. 

While some of the cases we have closed recently date back to the periods covered by this guidance, it is now eight years since it was published. However, as seen from the cases included here, particularly Ms K’s story, complaints to PHSO cover periods of care that come after the period covered by the guidance. The lack of clarity for previously unassessed periods of care from after April 2012 has caused CCGs to deny people the opportunity for a review.

This lack of guidance covering care since April 2012 risks frontline practice being at odds with the principles of the National Framework, and CCGs being confused about their responsibilities. The complaints we have seen include examples where CCGs have been advised by national bodies to review previously unassessed periods of care after 2012, but national guidance does not make clear whether CCGs are required to do this. The Department of Health and Social Care, and NHS England and NHS Improvement should consider the approach to previously unassessed periods of care from April 2012 onwards and publish guidance for CCGs setting out their obligations.

Recommendation 5: Developing national guidance

The Department of Health and Social Care (DHSC) and NHS England and NHS Improvement should consider the approach to previously unassessed periods of care dating from after 2012 and develop guidance to clarify CCGs’ obligations. Guidance should set out explicitly how CCGs should respond to requests to retrospectively assess people’s eligibility for NHS CHC-funded care such as Ms W’s and Ms K’s, whose requests relate to periods of time after the 2012 closedown. This guidance should make clear what CCGs’ obligations are and give clear and specific timeframes for CCGs to meet these obligations. If deadlines for requests are imposed, these should be effectively communicated by CCGs to anyone who may have been affected to ensure no one is disadvantaged.

Recommendation 6: Delivering capability in the NHS CHC system

Once this guidance is in place, CCGs should assure themselves, with support from NHS England and NHS Improvement, that they have sufficient capability to successfully meet their obligations as set out in the guidance. Where assessments of previously unassessed periods of care are required by the guidance, CCGs should ensure they can complete timely and quality reviews.

Making change happen

This report is published in extremely challenging times for the NHS as it tackles the COVID-19 pandemic. For CCGs, this has been felt acutely as frontline and administrative NHS CHC staff have been redeployed to support the national effort during these unprecedented times.

However, it is crucial the recommendations and learning set out in this report are taken forward to further improve the NHS CHC system and the service provided to some of the most vulnerable people in society. NHS CHC is there for people with complex care needs. Not getting this right can have life-changing financial, emotional and practical consequences for people and their families.

We hope the learning and recommendations we have set out in this report inspire and support CCGs to get it right first time. The recommendations are practical and achievable, but we recognise the unprecedented pressures on the NHS due to COVID-19 mean that it may take longer than usual for them to be implemented. We ask the Department of Health and Social Care, and NHS England and NHS Improvement to write to the Public Administration and Constitutional Affairs Committee and the Health and Social Care Select Committee in six months with an update on progress in planning and delivering these recommendations.