NHS Continuing Healthcare (CHC) and transitions into adulthood

Young people who are receiving NHS Continuing Care (and their families) are inevitably anxious to know what their care and support arrangements will be once they become 18.  Not infrequently there will be concern about losing a suitable placement because of uncertainty about eligibility for adult NHS CHC funding.  In some cases it appears that families are told that nothing can be agreed until the young person becomes 18.  This is wrong.

The 2018 Adult Framework (paras 331-349) and the [truly dreadful] 2016 Children and Young People’s Framework (paras 116-117) contain clear guidance as to what should happen with transitions of this kind.

Para 341 of the 2018 Adult Framework states (for example) that as soon as practicable after the 17th birthday, eligibility for adult NHS CHC should be determined in principle by the relevant CCG, so that, wherever applicable, effective packages of care can be commissioned in time for the individual’s 18th birthday.

The 2016 Children and Young People’s Framework provides guidance on the process by which the healthcare services young people are receiving, continue as the move into adulthood.[1]  It advises that future entitlement to adult NHS CHC ‘should be clarified as early as possible in the transition planning process, especially if the young person’s needs are likely to remain at a similar level until adulthood’ and this should be done ‘at a suitable point when aged 16-17’ (para 116).  At para 117 it then provides a three stage process that should be followed:

  • At 14 years of age, the young person should be brought to the attention of the CCG as likely to need an assessment for NHS Continuing Healthcare.
  • At 16 -17 years of age, screening for NHS Continuing Healthcare should be undertaken using the adult screening tool, and an agreement in principle that the young person has a primary health need, and is therefore likely to need NHS Continuing Healthcare .
  • At 18 years of age, full transition to adult NHS Continuing Healthcare or to universal and specialist health services should have been made, except in instances where this is not appropriate.

Importantly it advises that when the young person is 16 eligibility for NHS CHC should be determined in principle ‘so that, wherever applicable, effective packages of care can be commissioned in time’ for their 18th birthday (or later, if it is agreed that it is more appropriate for responsibility to be transferred then)’ (para 120).

Although the NHS Clinical Commissioning Group (CCG) responsible for ensuring these transitional arrangements occur will generally be the one for which the young person’s GP is a member, 2012 NHS regulations[2] stipulate that this will not be the case if the young person is in accommodation commissioned by another CCG (alone or jointly with a local authority).

It follows that in every case the CCG should determine – well before the 18th birthday – whether the young person is, in principle, eligible so that effective packages of care can be commissioned in time for the 18th birthday. If a social services authority is contributing to the package of care, then there is a duty on it to undertake a transitional assessment – and the process is explained in the ‘Disabled Children: A Legal Handbook[3] at para 10.22.

Social care legislation provides for a relatively sophisticated transitional planning scheme (eg Care Act 2014 ss 58 – 59 and Children Act 1989 s17ZH).  Although this level of detail is lacking for the NHS – as a matter of ‘public law’ CCGs must have internal arrangements (and inter-authority arrangements) that ensure that the young person continues to have appropriate care when they become 18 and that they and their family do not have to endure uncertainty / anxiety in the years leading up to the 18th birthday.  If there is uncertainty as to whether the person will be eligible for NHS CHC funding when 18, then the CCG and social services should agree on what would be an appropriate package – even if they are unable to agree who should fund it.  The law requires in such cases that one of them then ‘grasps the nettle’ and secures the support, before (if necessary) entering into protracted negotiations with the other on liability for the care costs.[4]  If there is delay or a failure to act, then a joint complaint should be made.  This can be done using the precedent letter 2 of the Cerebra Accessing Public Services Toolkit page 30.[5]

A 2013 ombudsman’s complaint[6] concerned a young man in ‘transition’.  He was due to be 18 in November 2011 but the NHS transition process only started in April 2010 when he was 16.  Given the complexity of the young man’s needs, the Ombudsman considered that this was too short a period and to amount to maladministration.

Of course in any transition there will also need to be an updated parent carer assessment – both under Children Act 1989 s17ZD and under the transitional arrangements – for which see ‘Disabled Children: A Legal Handbook[7] at para 10.38.

For an earlier ‘post’ about the general approach to be taken in relation to transitions – click here.

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[1] DDCSF & DH Guidance (2008) Transition: moving on well – A good practice guide. DCSF and DH (2007) A transition guide for all services: key information for professionals about the transition process for disabled young people and see also Department for Education Special educational needs and disability code of practice: 0 to 25 years (2014) para 8.56.
[2] The National Health Service Commissioning Board and Clinical Commissioning Groups (Responsibilities and Standing Rules) Regulations 2012 SI 2996 reg 5.
[3] Accessible at https://councilfordisabledchildren.org.uk/help-resources/resources/disabled-children-legal-handbook-2nd-edition.
[4] See for example complaint no 96/C/3868 against Calderdale MBC, 24 November 1998 para 30
[5] Accessible at https://www.cerebra.org.uk/help-and-information/guides-for-parents/problem-solving-toolkit/
[6] Public Services Ombudsman for Wales Report on complaint No. 201201350 against Aneurin Bevan Health Board, 30th April 2013.
[7] Accessible at https://councilfordisabledchildren.org.uk/help-resources/resources/disabled-children-legal-handbook-2nd-edition.