Francesca Burfield explores whether children and young people’s continuing care is sufficient for the most vulnerable children and their families or is it falling far short.
The NHS is receiving an increasing number of referrals pursuing eligibility for funding for children with continuing care needs. Often these applications cite emotional, social and mental health needs, which fall within the ‘challenging behaviours’ domain of the decision support tool (DST).
As such, the NHS is increasingly refusing to undertake or complete assessments to establish eligibility for funding, which inevitably results in a failure to provide the vital support some children so desperately require to meet their complex needs.
Continuing Care is provided through Continuing Healthcare (CHC) for adults and Children and Young People's Continuing Care for those aged from 0-18. Eligibility for continuing care in England is decided by NHS integrated care boards (ICBs). ICB panels are responsible for planning local health and care services. In Wales, they are overseen by local health boards.
Recently, we have noticed a considerable increase in the demand for children’s continuing care training, and some reoccurring themes are emerging.
The difficulties
Nationally there seems to be a reluctance on the part of the health assessors, appointed by the ICB, to respond appropriately to referrals made for eligibility for continuing care funding by the family or other professionals, such as social care or education.
They are reluctant to undertake even the initial pre-assessment and will often refuse to undertake the full holistic assessment of the child or score appropriately on the DST to make the correct recommendation to the multidisciplinary team (MDT) panel.
There are even some accounts of the health assessors’ unilaterally making decisions around assessments and recommendations without consulting with the child, the family or other professionals involved and then the MDT panel is told by the assessor what to do.
This approach is not only at odds with the processes and procedures set out in the National Framework for Children and Young People’s Continuing Care 2016 but also builds in considerable barriers for eligibility to be determined and approved.
Even if a referral is accepted and an assessment is undertaken the health assessor (HA) will often ‘push back’ on the grounds that either ‘the package of care currently being provided by social care and the family meets the needs of the child so no additional package of care is required’ or ‘the needs of the child identified using the DST are needs that should be met by social care or Child and Adolescent Mental Health Services (CAMHS)’.
This reoccurring response by the HA on behalf of the ICBs is fundamentally flawed in that it fails to fully recognise the child’s needs, identify them as health needs and further fails to strip back the provision of care and support currently in place around the child to enable them to properly assess the child’s needs, all of which they are required to do in line with the National Framework.
Challenging behaviour
One of the most difficult domains to evidence in the DST is ‘challenging behaviour’ and yet it is these behaviours that have led to the significant increase in the number of referrals for continuing care.
Quite often the response by the HA is that these ‘challenging behaviours’ do not constitute eligibility for continuing care. Hence the greater need for those making referrals to be more robust, not only in their definition of challenging behaviour but providing cogent and compelling first hand relevant and factual evidence.
By way of example, there should be diary sheets that not only describe the behaviours in the family’s or carer’s words but also the severity, the frequency, the impact and consequences, the risks, how the behaviours are managed and by whom, and who provides the training and supervision to enable others to manage those behaviours.
Quite often where children are assessed as eligible for continuing care funding, the decisions are then reversed. Equally, NHS continuing care support can be withdrawn when a family moves from one part of England to another, creating a postcode lottery.
In summary, the attempts to secure funding for a continuing care package on behalf of a child has become a very difficult, complex and challenging pathway for many families and professionals to navigate with success. It means the prospects of a child qualifying for continuing care funding are slim.
So, the answer to the question, ‘are children with the most complex needs being adequately cared for?’ is a resounding NO.
Potential solutions
To remedy the above and ultimately improve outcomes for children the current process to determine eligibility for continuing care needs to be made easier to understand, access, apply and succeed.
There needs to be greater continuity in the ICB’s approach to referrals for continuing care for children; improved partnership working between ICB’s, the family and local authorities; a more fair and transparent process of assessment; better dialogue around the scoring within the DST and adequate and robust procedures for dispute resolution.
Francesca Burfield explores whether Continuing Care for Children and Young People is sufficient for the most vulnerable children and their families, or whether it is falling far short.
Francesca Burfield is a Bond Solon trainer, barrister, and subject matter expert in safeguarding children.