Medically complex children, Children’s Continuing Care, and Children’s Social Care: dispatches from no-man’s land
A guest posting by Lisa Ballesteros.
Background
My son, T, wasn’t expected to survive the night. Born at 26 weeks gestation with an alphabet soup of medical conditions, he spent his first year in hospital. He was eventually discharged home, on a ventilator, with a package of waking night care funded by NHS Continuing Care (CC).
Now nine years old, he has developed into a magnificent being with an extraordinary capacity for love and a mind-boggling flair for words and drawing. He also remains dependent on a vast array of medical technology to stay alive. Silicone tubes deliver machine-distilled nourishment and air. More tubes evacuate and drain him and stop the excess fluid in his brain swelling up and killing him.
Over the years, T’s CC package has grown to include in-school and school-holiday care hours. This support allows T’s dad and I to sleep, work, and have the occasional break. It also means we can parent both our children, rather than nursing one at the expense of the other. As a result, T’s physical and cognitive capabilities and relationships with those around him are now far beyond what doctors predicted.
However, T also spent key developmental stages attached to enormous machines. He has lived with years of daily, invasive (i.e., painful) medical interventions, often by clumsy strangers. Combined with major life changes aged four – longer periods off daytime ventilation; a city move; a baby sister; a new care agency’s bad thought out decisions around training; the pandemic – these experiences have left their mark. Specifically, on how T regulates himself and how he engages with his environment. Keeping him – and those around him – safe is now our biggest challenge.
I suspect T is far from unique. In terms of data though, he is invisible. As a cohort, medically complex children are still so new that we don’t even know how many there are, let alone their long-term outcomes. Anecdotally, CC professionals estimate their caseloads to have increased six-fold in the last fifteen years. This increase is significant, as the criteria to qualify for NHS CC are notoriously strict – children must (in the NHS area where we live) score at least three ‘high’, two ‘severe’, or one ‘priority’ across ten health and wellbeing domains. These domains are assessed and scored on a six-point scale from ‘no additional needs’ to ‘priority’.
Twenty-four-hour ventilation via tracheostomy meant baby T was an immediate ‘priority’ in the breathing domain. Aged two, he also scored ‘high’ in continence, feeding, and mobility. Aged five, emotional/psychological needs and challenging behaviour domains were added.
Until this year, eligibility for T’s NHS-funded CC package has never been an issue. Tubes have been removed; new ones added. T’s disabilities are life-long and there is no long-term literature on anyone with his set of conditions. He remains complex and dependent on high levels of clinical intervention and supervision to function and stay safe.
The 2024 Continuing Care review.
Continuing Care eligibility is reviewed annually. After our March 2024 review the nurse-assessor shared her decision-support tool with us before going to the CC panel at our local Integrated Care Board (ICB). Like last year, she’d scored breathing, continence, and challenging behaviour as ‘high’. Feeding and psychological/emotional needs were now ‘moderate’.
These last two domains seemed under-scored to me. T’s blended diet and lack of survival instinct/emotional regulation skills are what most prevent him accessing universal experiences like travel and friendships. However, three ‘highs’ was enough to keep the care package, which was finally working for us after three years of managing it ourselves via a PHB[1].
Then, in June 2024, the nurse-assessor emailed to say panel had decided T’s challenging behaviour needs were now ‘moderate’ and the care package would be withdrawn with immediate effect. She agreed to speak on the phone about how the decision had been taken. The panel had already been postponed twice so she could gather additional evidence on this very domain. What evidence had she gathered? An uncomfortable silence, then:
“I asked the school to write a report, but they didn’t reply in time for today’s panel”.
She had the grace to sound embarrassed when admitting she had only contacted school the morning of the panel. We agreed she would find out about re-submitting to the following month’s panel.
A few days later, another email: regardless of further evidence, health commissioners had decided:
“Changes will be made to the care package as the level of care currently offered (7 nights a week & 5 days a week in school) is a level only offered to fully ventilated children and young people”.
The proposed changes involved total withdrawal of overnight and school-based care.
I immediately challenged this decision. National guidelines show the level of care provided by a CC care package should only be decided once eligibility is confirmed. The panel were skipping several steps and I suspected that cutting the package altogether – probably as a cost-saving measure – was their overall priority.
Six months later, December 2024, the challenge is ongoing – although highlighting the ICB’s legal obligations[2] during dispute resolution means we still have our care package. Our dispute boils down to our local ICB deciding it is no longer their responsibility to meet T’s ongoing, significant health and wellbeing needs. This dispute has two strands:
- The ICB’s reasoning for their eligibility decision, which we consider flawed.
- The ICB’s neglecting to consider and plan for its impact and therefore failing in a basic principle of public law:
“neither an ICB nor a local authority should unilaterally withdraw from an existing funding arrangement without a joint reassessment of the individual, and without first consulting one another and the individual about the proposed change of arrangement. Therefore, if there is a change in eligibility, it is essential that alternative funding arrangements are agreed and put into effect before any withdrawal of existing funding, in order to ensure continuity of care.”[3]
There is a lack of precedent for what should happen to children with complex medical needs and technological dependence in terms of ongoing support. This is exacerbated by the siloed nature of statutory services at a time of diminishing national resources. Although the integrated care system (ICS) framework is supposed to facilitate health, social care, and other local partners working together, the infrastructure to do so does not exist – at least, not in our area. The experiences I describe next will illustrate this in painful detail.
For families in our situation, the law is our best and only weapon. In sharing our experiences and how we have fought back – with the support of Luke Clements and resources from peoplehub – I aim to offer hope to others facing the same.
Dispute strand 1: challenging the Continuing Care domain decision
The decision support tool used by CC funding panels describes a ‘high’ challenging behaviour need as the presence of:
“regular challenging behaviours such as aggression (e.g. hitting, kicking, biting, hair-pulling), destruction (e.g. ripping clothes, breaking windows, throwing objects), self-injury (e.g. head banging, self-biting, skin picking), or other behaviours (e.g. running away, eating inedible objects), despite specialist health intervention and which have a negative impact on the child and their family / everyday life.”
Our CC panel’s first argument of a ‘moderate’ score focused on the nature of T’s behavioural presentation. I.e., that challenging incidents were no longer ‘regular’ but ‘occasional’. Their evidence for this was (1) his draft EHCP, which described improvements in focus and (2) the fact he had been receiving sensory integration (SI) therapy funded by the Local Authority (LA).
We were indeed six months into weekly SI sessions. T’s autism assessor, a consultant paediatrician, had recommended SI the year before. She had never met anyone like T, but agreed he was on the autistic spectrum and that a confirmed diagnosis would help us get him the help he needed. His deregulation episodes were our biggest challenge and we’d been trying to get an initial SI assessment funded through T’s EHCP for two years. Our families eventually helped us pay the £1600 fee privately.
The ensuing SI report laid out the complexity of T’s sensory profile and showed how it linked to his structural brain differences – visible on MRI – and long-term invasive medical interventions. The LA finally agreed to fund ongoing SI sessions from September 2023 as part of T’s EHCP provision.
Progress was slow, but by this year’s EHCP annual review, also in March 2024, he was starting to wake up to the world around him. Following the EHCP review (which CC didn’t attend), the LA agreed to one more year of funding for SI therapy. T’s CC-funded school carers (now also his TAs) had received SI training and agreed to stay on for another year. We finally had hope for the future – the next 12 months were crucial.
I updated the nurse-assessor on this during our annual CC review, emphasising there was still a long way to go. Daily challenging incidents continued to mark our lives and were more acute because of T’s increasing size and strength. When the letter promised by T’s school arrived, it backed this up. More extreme aggressive incidents occurred once or twice a week. Throwing things out of windows/into toilets/at people, destroying work, shouting, self-injury, and running away remained daily occurrences. These daily incidents, the letter added, were likely to escalate without the current high level of support.
In response, the ICB/CC representatives switched their argument to the definition of “specialist intervention”, saying:
“[T] has not had any behavioural management intervention from either the Child and Adolescent Mental Health Services (CAMHS) or [the local learning disability service], which would be expected to score a high. The reason T has not scored a high is that the domain clearly says “despite specialist health intervention” and as far as the panel could see, there has been no specialist intervention.”
We had the opportunity to discuss this further with them during mediation. We asked:
- Why the panel first downgraded the behavioural domain to ‘moderate’ based on the fact T has been receiving SI therapy. Did this count as ‘specialist’ when they wanted to downgrade, but not when we wanted to maintain?
- Why the panel were saying SI therapy was not ‘specialist’, given the local learning disability (LD) service had rejected T’s referral, nor had he been referred to (or even recommended) CAMHS when we asked for help after this rejection?
- Where children who qualified for neither service could go for ‘specialist intervention’?
The response to all these questions was that only the LD service or CAMHS counted as ‘specialist’. My request to see their policy documenting this definition was ignored[4].
The CC national framework recognises the difficulties in proving challenging behaviour is a health need:
“some health commissioners may consider that the support a child with challenging behaviour requires, is predominantly special educational needs. Equally, where the support needed is to ensure the wellbeing and health of a child with challenging behaviour, a case can be made that a health intervention is needed. It is essential that in such cases, there is a clear process agreed between commissioners for resolving issues relating to who pays[5]”.
The actions of our health commissioning panel show they have no such process in place. This was confirmed when I reminded them that they had scored ‘behaviour’ as high the previous year, despite lack of any intervention at all, ‘specialist’ or otherwise. The panel response was that:
“Ascribing a high to the behaviour domain in 2023 was probably incorrect…[because] in 2023 the focus was on his other clinical needs as these were significant and therefore less scrutiny was applied to this domain.”
This confirms my suspicion that the ICB’s priority is to save money by absolving themselves of continuing to meet T’s needs altogether and that they have focused on the most nebulous domain to achieve this.
This leads us onto the next point – the ICB’s lack of planning and process to mitigate the impact of their decision.
Dispute strand 2: inter-agency assessment and commissioning: legal frameworks
As already mentioned, it is a core principle of public law that:
“Neither an ICB nor a local authority should unilaterally withdraw from an existing funding arrangement without a joint reassessment of the individual, and without first consulting one another and the individual about the proposed change of arrangement. Therefore, if there is a change in eligibility, it is essential that alternative funding arrangements are agreed and put into effect before any withdrawal of existing funding, in order to ensure continuity of care” [6].
When our ICB first attempted to withdraw T’s care package without interacting with the LA, I pointed this out to them. Their response was that:
“T’s Continuing Care Nurse discussed you making a self-referral to social care. On reflection, with your permission, the team could have done this on your behalf. If you agree, the ICB will do this now. It is worth noting that the multi-disciplinary continuing care eligibility panel includes representation from health, social care and education…[however]…it is not possible to predict the outcome of any such referral.”
Stating that they are not able to “predict the outcome of any such referral” encapsulates the core issue our case has brought to light. We were not asking to be passed onto social care. We were asking for a joint reassessment towards an integrated commissioned package of support that ensures continuity of care. In highlighting their lack of infrastructure to integrate services for people and families, the ICB’s answer confirms the extent to which they (and the LA) are failing to meet their legal duties in supporting medically complex children. These duties are underpinned by the NHS Act 2006, section 82, the Health and Care Act 2022, which formalised Integrated Care Systems, and the SEND Code of Practice. The latter specifically says that:
“Local authorities must work to integrate educational provision and training provision with health and social care provision where they think that this would promote the wellbeing of children and young people with SEN or disabilities, or improve the quality of special educational provision.
Local partners must co-operate with the local authority in this. The NHS Mandate, NHS Act 2006 and Health and Social Care Act 2012 make clear that NHS England, CCGs and Health and Wellbeing Boards must promote the integration of services”[7]
The NHSE Guidance on direct payments for healthcare, which supports ICBs in carrying out their duties as described in the Health and Care Act 2022, is particularly relevant to our case:
“Personal health budgets are flexible. They can be used to meet a variety of needs, [including]…to support children and young people with education, health and care plans aligned to expectations in the SEND Code of Practice…And they can be…integrated with social care and/or education personal budgets”[8].
The guidance also makes it clear that, regardless of how a personal budget is organised, what is important is that provision required by the child/young person is secured through the integration of services and joint commissioning arrangements. Given the CC panel’s proposal to discontinue daytime care hours, which currently provide in-school, extra-curricular, and holiday-time support, this point is particularly pertinent.
Our interactions with the ICB are only a symptom of a region-wide lack of integration infrastructure. This was apparent even before our current dispute. I have tried to self-refer to the LA’s Children with Disabilities (CWD) social work team several times over the years. This is because CC packages in our area – according to our nurse assessor – are “not meant to provide respite for other members of the family or for parents to work”. The referrals have never been accepted.
My hope that a direct referral between statutory partners would be different was short-lived. A phone call from the CWD team in October 2024 communicated that T “does not meet their criteria”. The lady on the phone wasn’t sure what the criteria were, but it was possibly “because he is not at a special school”.
We were passed onto the Children’s Advice and Duty Service (CADS), who told us a family support worker (FSW) assessment would enable us to be referred to the CWD team. When the CADS FSW arrived, he immediately said he didn’t understand why he was there, as we were “clearly a case for the CWD team and way outside our remit”. He saw no point in doing an assessment and we agreed, now he had met us, that he would go back to the head of CADS for advice.
A week later, another phone call – the CADS team were going to discharge us. The head of the service had said T was too complex for them and it was the CWD team’s responsibility to see us. There was an illuminating moment during this process – a policy exists somewhere (although no-one I spoke to has ever seen it) saying children with CC packages are not eligible for involvement from the CWD team, as care hours (to meet their needs only) are already provided by the ICB. As needs assessments for parent-carers and sibling (young) carers are offered through the CWD team where we live, this leaves family-carers with nowhere else to turn.
Regardless of the outcome of our dispute, the future is uncertain. If we are found still eligible for CC, the package will likely be reduced because T’s clinical needs have evolved – even though he still needs 24-hour supervision. Under the current rules, we would not be eligible for any extra help as carers to mitigate the impact of this.
If we are not found eligible for CC, the LA’s policy means we cannot be seen until after care is withdrawn. The inevitable wait to be assessed will mean our current team, who know T well but need to make a living, will likely no longer be available to work with him. Continuity of care is not possible under these circumstances (the current crisis in recruiting care staff is a whole other blog). Our dispute with the ICB is as much about the lack of system readiness for complex children like T as it is about the nature of T’s needs and whether he qualifies for CC or not.
Dispute strand 2: lack of system readiness – educating medically complex children
T’s first year in formal education was cut short by the pandemic – possibly to the relief of his mainstream primary school, who had not yet adjusted to managing a ventilator-dependent child who would occasionally turn blue and pass out before recovering to headbutt passing children. The school, like us, were dependent on agency staff to keep T safe overnight (us) and during the day (school).
We had decided on mainstream rather than specialist school as T was still very fragile and we wanted him close by. We also wanted to at least try mainstream – I nurtured (and still nurture) a hope for T to grow up in a community that knows him and accepts and celebrates his differences.
This hope was enabled by T’s legal right to a mainstream education under the Children and Families Act (CAFA) 2014, Section 33(2), which is currently sustained by the provision of CC-funded PAs at his (mainstream) school. One has supported him since 2019 and the other since 2020. Both TAs/PAs are part-funded through our direct-payment PHB, meaning the school and I are both their employer – an unusual situation the ICB have long been unhappy with but neglected to notice until it was too late.
Upon the news of the proposed withdrawal of school-support, I requested the ICB’s latest CC policy to back up their claim that “the only support continuing care provides in school is when children have either very complex, intravenous feeding regimes or tracheostomies”. Nothing in the version I was provided with confirms this.
Whilst the ICB agree that “T has an absolute right to education”, they maintained that:
“T’s behaviour does not warrant clinical intervention.”
This brings us back to the issue of eligibility for ‘high’ needs in the behaviour domain. We have provided evidence (letters from T’s neurologist and community paediatrician, the SI report) of the health-based nature of T’s behavioural profile. Legal precedence says it is now on health commissioners to prove otherwise[9], which they have not done.
Once again, the problem boils down to the ICB not having a process over who pays when different agencies are disputing the origin of behavioural issues. This aspect of their decision takes my breath away with its short-sightedness. T’s school-hours PA costs the ICB around £20,000 a year. The school have said they will struggle to recruit and train a replacement within their available LA-funded SEND budget, which has been cut this year amidst spiralling demand. This means his current school will no longer be able to meet his needs and we will have to look for a special school sooner than we thought. Specialist provision can cost up to £0.3 million per child per annum.
Dispute strand 2: lack of system readiness – the assumption that parents are willing and ‘able’ to take over overnight, waking care.
T sleeps with oxygen administered via nasal cannula. Because of his sensory issues, these frequently dislodge and/or wrap around his neck. A piercing alarm sounds when this happens. This means he continues to need supervision overnight – currently provided by his CC package.
The ICB want to withdraw this care, as not being ventilated via tracheostomy means the short-term effect of any tubes coming out is no longer acute, as in previous years (immediate lung collapse). Without care T’s dad and I have two options.
- To take turns supervising and intervening 10-30 times a night to replace the cannula.
- To leave the alarm off and [try to] sleep in our own bed (a) hoping he doesn’t strangle himself and (b) accepting the oxygen will be off most of the night. For T, the short-term effects of oxygen deprivation are slow-burning but personally devastating — chronic sleep deprivation impacting behaviour, learning, and growth. The long-term ones are organ failure.
The response the ICB gave when questioned about this was that they said they would refer us to the LA for a carers assessment. This would “address your concerns” but, again:
“It is not possible to predict the outcome of any such referral.”
This comment summarises, again, the extent to which the relevant statutory agencies are failing to engage in joint integrated care planning so they can meet the needs of a vulnerable child and his unpaid carers. This falls across both their remit.
Failures on the ICB side:
- The 2016 Kent Ombudsman report makes clear that it must not be assumed carers are willing and able to provide care. The ICB did not seek to clarify this, nor to assess whether we are willing/able to attend to T’s breathing needs throughout the night.
- By referring us to the LA (and only when pushed), the ICB show they are unaware of the former’s policies around not providing support to families also eligible for CC.
- In maintaining that CC packages are only to support the needs of a child and not seeking to confirm that family-carers’ needs can be met elsewhere, the ICB are enabling the LA to continue not meeting their statutory duties.
Failures on the LA side are around their policy that (1) children under CC are not eligible for a CWD assessment and (2) family-carers of disabled children can only access carer-needs assessments through CWD. This contravenes their duties laid out in the Children Act 1989[10], which states that LAs must carry out:
“an assessment of whether it is appropriate for the parent carer to provide, or continue to provide, care for the disabled child, in the light of the parent carer’s needs for support, other needs and wishes”.
Subsection 10 also states that this assessment must also have regard to:
- the well-being of the parent carer[11]
- the need to safeguard / promote the welfare of the disabled child and any other child for whom the parent carer has parental responsibility.
This obligation replicates and broadens the pre-Care Act duty in the Carers (Recognition & Services) Act 1995, section 1(2C) to consider whether the carer works/wishes to work or is undertaking/wishes to undertake, education, training or any leisure activity.
This whole torturous experience could have been avoided if someone from the LA and ICB had thought to sit down together and come up with a shared plan around how to deal with families like ours. They could even have invited a parent-carer to sit down with them.
Conclusion
At the time of writing, we are awaiting the results of an independent review into T’s March 2024 CC annual review. In the meantime, we cannot access a disabled child, young carer, or carer’s assessment to try and ensure continuity of care. The only professionals to have acknowledged the delicate balance required to keep T – and all of us – well and happy are unable to do anything about it.
Children like T – technology dependent and medically complex – are surviving longer and in greater numbers. Like T, they can give and receive much joy if their needs are met. To do this, it is essential that those who care for them are supported as early and as much as possible. Unpaid carers are an essential workforce that saves the government £184 billion a year. But we cannot continue to do this under a broken system.
We are no different to any other parents who want to help their children thrive. But our children are different – they are only alive because of the promethean heights of human progress. This means they need more help to reach their potential. If we, as a society, are not prepared to care for those whose lives are sustained by advanced medical technology, why invent it in the first place? It must be matched by equally advanced social technology, otherwise we are no better than machines ourselves.
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Contact details: lisavictoriaballesteros@gmail.com
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[1] Already flailing under the weight of the pandemic, the care agency commissioned to provide and manage our CC package had collapsed in February 2021. Unable to face yet another cohort of strangers, we’d decided to employ T’s redundant care team ourselves via direct payments for healthcare, a type of Personal Health Budget (PHB). PHBs can be challenging to run, but the benefits of consistency for T (and us all) were immediate.
[2] Children’s Continuing Care National Framework Page 19, paragraph 92: “CCGs and local authorities should agree a local dispute resolution process to resolve cases …arrangements should be clear on how funding will be provided pending resolution of the dispute and arrangements for reimbursement to the agencies involved once the dispute is resolved.”
[3] This can be found in the section on disputes between Local Authorities and ICBs in the National Framework for NHS Continuing Healthcare (2022), Page 73 paragraph 210. This principle is echoed in the Children’s Continuing Care National Framework (2016) Page 7-9. Paragraph 33 particularly highlights that: “Commissioners should be sensitive to the needs of ensuring continuity and stability of support, and transition to different providers, or different types of care, must be planned, and carefully managed, fully involving the child or young person and their family.” It is further confirmed in the SEND Code of Practice, section 3.19 (page 42): “under Section 14Z2 of the NHS Act 2006 each CCG must exercise its functions to secure that individuals to whom the services are being, or may be, provided, are involved in in planning commissioning arrangements, in the development and consideration of proposals for change, and in decisions affecting the operation of commissioning arrangements where implementation would have an impact on the manner in which services are delivered or the range of services available.”
[4] Whilst there is no standard definition of “specialist intervention” when it comes to challenging behaviour, NHS guidelines suggest it is when universal, developmentally appropriate practice and learning principles do not provide enough support for a child’s learning and additional psychological and environmental interventions are required. Ayres Sensory Integration (ASI) is a specialist training, postgraduate at university (MSc level) which provides neurological treatment using suspended equipment and can provide school sensory motor classroom strategies for environmental changes. As most NHS or LA statutory services do not provide this locally, services for SI are outsourced as an external specialist service. Our LA followed this principle when they agreed to fund ongoing sessions.
[5] Children’s Continuing Care National Framework, paragraph 29
[6] Found in the section on disputes between Local Authorities and ICBs in the National Framework for NHS Continuing Healthcare (2022), Page 73 paragraph 210 and echoed in the Children’s Continuing Care National Framework (2016) Page 7-9. Paragraph 33 particularly highlights that: “Commissioners should be sensitive to the needs of ensuring continuity and stability of support, and transition to different providers, or different types of care, must be planned, and carefully managed, fully involving the child or young person and their family.”
[7] page 41, section 3.13. Section 3.15 (page 41) adds that: “Working Together to Safeguard Children (2013) includes requirements for local agencies to work together to assess the social care needs of individual children and young people who may benefit from early help, and for local authorities and their partners to have a clear line of accountability for the commissioning and/or provision of services designed to safeguard and promote the welfare of children and young people.”
[8] page 4
[9] if an NHS body considers that a person is no longer eligible for Continuing Care funding, the onus is on it to establish that this is the case (ie the individual / their family does not have to prove that they are still eligible). This proposition comes from the Grogan judgment (https://www.bailii.org/ew/cases/EWHC/Admin/2006/44.html) at para 76.
[10] section 17ZD, subsection 9
[11] ‘Well-being’ has the same meaning as the Care Act 2014 section 1. The requirement to consider ‘well-being’ brings with it the duty of the authority to consider (among other things) the parent carers’: personal dignity, physical and mental health and emotional wellbeing, protection from abuse and neglect, control by the individual over day-to-day life (including over care and support, or support, provided to the individual and the way in which it is provided), participation in work, education, training or recreation, social and economic well-being, domestic, family and personal relationships, suitability of living accommodation, the individual’s contribution to society.
Posted 8 December 2024