The end game: Continuing NHS Healthcare (CHC) in Wales
The Welsh Government has finally published its revised Continuing NHS Healthcare Framework Guidance for Adults – giving just over a month for its implementation. Although it published a draft of the Guidance last year, it then decided that it needed further amendment – and for reasons it alone knows – it removed the draft from its website. It was not until the end of February 2022 that the final document was made accessible to those outside the inner circle.
It is a dreadful document that – in large measure – marks the beginning of the end of CHC in Wales. It will inevitably lead to a major reduction in eligibility in Wales and eventually to CHC’s de facto extinction. The net result for disabled people on low incomes will be experienced in local authority cut-backs, as adult social services departments redirect resources to those that the NHS will now refuse to fund. It is one of the great social care ironies that the NHS is forever highlighting the major problems it experiences in consequence of social services under-funding – while at the same time being hell bent on slashing its CHC budget and shunting these costs to social services.
Health Boards in total control
The NHS in Wales has long had the ear of the Welsh Government and it appears that it has had almost complete control over the drafting of this guidance. No doubt the NHS will say that this is only right – but we need to remember that CHC is about the limits of social care and that this restriction stems from the Social Services and Well-being (Wales) Act 2014 and not the NHS (Wales) Act 2006. Eligibility for CHC funding should be every bit as much a social services decision as it is an NHS decision. That is not, however, the case anymore.
Instead of the recommendation being made by a Multi-disciplinary Team (MDT) comprising one social services professional and one health professional, the process will now be (even more) NHS dominated. The individual assessment process will be managed by a Care Co-ordinator – an NHS employee – whose role will be to ensure that MDT assessments ‘are robust’ and evidence based in order that ‘robust expert advice’ is given to the LHB concerning entitlement for CHC. The MDT itself will now have – in general – two health professionals and a lone social worker. If the local authority disputes a decision to refuse CHC eligibility – then the new Framework requires that this be dealt with by a locally agreed disputes protocol. The fact that there is over 20 years of evidence that these have proved to be ineffectual – that what is clearly needed is a formal Welsh Government dispute process – is (again) ignored.
From the litany of failings in the revised Framework, there are two standout issues of concern.
As we have noted in earlier postings the Welsh Government has been aware for many years of the adverse impact on many disabled people of its prohibition of Direct Payments for CHC. Seven years ago it acknowledged that this was an issue to be addressed and noted that one option would be the wider use of the mechanism of Independent User Trusts (IUTs). A commitment to addressing this problem was contained in the Welsh Labour Party manifesto (p.18). In our 2021 posting on this we noted that in England:
prior to the national rollout of a right to direct payments for disabled people living in the community who were eligible for NHS CHC funding, the Department of Health issued guidance on the use of IUTs. What is needed is for the Welsh Government to issue similar – but updated – guidance and for this to include a simple template example of an IUT. It is unreasonable (and could lead to significant inequalities) to expect each LHB to develop separate templates (and guidelines for their use) – and also unlikely, since none have (so far as we are aware) notwithstanding this is a long-standing problem.
Apart from the usual platitudes in the revised Framework – eg that when individuals lose their right to Direct Payments they should not ‘lose their voice, choice and control over their daily lives’ – all that it does in relation to this long standing problem is to:
1. Explain that direct payments are available if the individual is not eligible for CHC but has a joint package of care. As we noted in our posting last year:
A Joint Package of LHB and LA care should not become the default in Wales to circumvent the lacuna in Welsh legislation or a resistance to using a legal solution like an Independent User Trust. Nor should it be used to quieten the resistance of disabled people who are at risk of losing their right to manage their care through a Direct Payment because their needs are above the legal limits of social care. This will potentially leave people without their eligible needs being met and having to pay for their social care provision when in fact they are eligible for a NHS Healthcare package which is free at the point of delivery.
2. State that (para 5.53):
Health boards could also consider providing funding to an Independent User Trust, to manage an individual’s care. This is where a relative of a patient or other interested party sets up a trust which becomes the provider of care for the individual. The LHB then contracts with the trust to provide specified health care services for the individual.
No detail, no template – nothing – apart from a statement (at para 5.55) that ‘further guidance on these measures will be published on the Welsh Government website’.
The new framework has, in the words of Samantha Stickland (a campaigner for Direct Payments and CHC reforms) left her and her colleagues ‘feeling hopeless’ and ‘unheard yet again’. The English Government ‘walked the walk’ on this issue in 2014: it is time that the Welsh Government did likewise.
A startling amendment in the guidance (or perhaps this is simply a highly ambiguous statement that solicits misinterpretation) concerns the way it seeks to define ‘nursing’.
CHC eligibility arises when an individual’s needs are above the limits of social care: at the point when these needs are (subject to certain exceptions) ‘required to be provided under a health enactment’ – for example the NHS (Wales) Act 2006. The main focus of the 2006 Act is directed at medical, nursing and dental care. A key issue in most CHC cases concerns the question as to ‘what constitutes nursing for the purposes of CHC determinations?’
In Coughlan the Court of Appeal was at pains to describe nursing in the language of an activity and not in terms of the person who provided it – explaining this in terms of the well-established quality / quantity test. Accordingly in R (T, D and B) v Haringey LBC the ‘nursing’ care required (that took the child above the limits of social care) was ‘a trained carer (not a qualified nurse): someone (like the mother) who ‘could be trained to carry out tracheal suction and would need to awaken the mother if she couldn’t quickly clear the tube’. (para 16). Likewise in R (Jutta) v. Herts Valleys CCG the ‘nursing’ care required was held to be the responsibility of the CCG notwithstanding that it could be delivered by trained social care staff . In Pointon the ‘nursing’ care that took Mr Pointon above the limits of social care was the care given to him by his wife – a former music teacher, not a nurse.
Nursing is a verb – it defines an activity not a person. Nursing existed before registered nurses were invented – and most nursing (in the OED sense of to ‘wait upon, attend to (a person who is ill))’ is done by family and friends. The fact that the NHS has deinstitutionalised its care and moved all but the most acutely ill people into the community and frequently back into their own homes – such that ‘very many ‘carers’ are doing tasks which in previous times would have been done in hospital: changing catheter bags, peg feeding, stoma care, administering intravenous medication, manual stool evacuations and so on’ – does not mean that these tasks are no longer ‘nursing’. In the 2010 WAG CHC guidance there was explicit acceptance of this point that eligibility for CHC funding ‘is not determined or influenced by the setting where the care is provided or by the characteristics of the person who delivers the care’.
In addition to their statutory obligations to fund CHC, Health Boards have a duty to pay a contribution to residents living in nursing homes , known as NHS Funded Care (FNC). This is a distinct duty and is designed to demonstrate that all nursing provided by registered nurses should be free under the NHS. The Courts have been absolutely clear that this is an additional responsibility of Health Boards and one that does not in any way dilute their CHC obligations.
Two different prohibitions
It follows that social services are prohibited from funding two distinct categories of healthcare. The first, the CHC prohibition, relates to ‘nursing’ that is above the limits of social care – regardless of the ‘characteristics of the person who delivers the care’. The second relates to FNC, ie care provided by (or under the direction of) a registered nurse.
Instead of stating this clearly, the new (2021) Framework elides these two prohibitions by selective citation of section 47 Social Services and Well-being (Wales) Act 2014, stating:
Extent of Local Authorities’ Powers
1.23 Section 47(1) of the SSWB Act provides that a LA may not meet an individual’s needs for care and support by providing or arranging for a service which is required to be provided under a health enactment, unless doing so would be incidental or ancillary to doing something else to meet those needs. Section 47(1) of the SSWB Act provides that “nursing care” means “a service which involves either the provision of care or the planning, supervision or delegation of the provision of care, but does not include a service which, by its nature and in the circumstances in which it is to be provided, does not need to be provided by a registered nurse”.
Let’s unpick this.
The first sentence (highlighted, in this text, in red) is correct. It is the CHC prohibition. The second sentence (highlighted in blue) is incorrect because: (a) section 47(1) does not say this; and (b) section 47(1) does not mention ‘nursing care’ – and so there is no need for it to be defined for CHC purposes.
The text in blue is in fact found in section 47(10) and it clearly relates to section 47(4) and (5) which relate to the FNC prohibition (the subsections that use the phrase ‘nursing care’).
Of course, this misstatement could have been neutralised by the 2021 guidance repeating the (above cited) 2010 guidance that eligibility for CHC funding ‘is not determined or influenced by … the characteristics of the person who delivers the care’. But this statement is no longer to be found in the Framework.
This is shocking guidance, and one has to ask “what have strategic leads in social service departments been doing to allow it to emerge in this form?” Have they been asleep on the job – or have they been utterly marginalised in its production?
 See for example NHS Continuing Health Care and Direct Payments in Wales 15 May 2021.
 See for example letter from the Welsh Government Director of Social Services and Integration dated 10 February 2016.
 National Health Service (Direct Payments) Regulations 2013 SI 1617.
 Section 47(2) and (3) Social Services and Well-being (Wales) Act 2014.
 R v North and East Devon Health Authority ex p Coughlan  2 WLR 622, (1999) 2 CCLR 285, CA.
  EWHC 2235 (Admin), (2006) 9 CCLR 58.
 EWHC 267 (Admin).
 Case no E.22/02/02–03 Funding for Long-Term Care (the Pointon case).
 L Clements Community Care and the Law (Legal Action 7th ed 2019) para 13.26.
 Welsh Assembly Government Continuing NHS Healthcare The National Framework for Implementation in Wales May 2010 EH/ML/018/10 Circular: 015/2010 para 4.4.
 See for example R (Grogan) v Bexley NHS Care Trust  EWHC 44 (Admin) and R (Forge Care Homes Ltd) v. Cardiff and Vale University Health Board and others  UKSC 56 where Baroness Hale explained (at para 26) that the duty on Health Boards to pay NHS Funded Care ‘was clearly intended to shift the boundary established by the Coughlan decision further in the direction of NHS funding.
Photograph of ‘Angel Porth y Nant’ by Richard Jones -@lluniaurich
Posted 9 March 2022