Why are we here?

NHS Continuing Healthcarefor People with Learning Disabilities

Jim Ledwidge

This Presentation• Legal context of CHC and key concepts• What the Framework requires• How does it apply to people with learning

disabilities?• Update of Framework for 2013

BACKGROUND• Closure of long stay hospital wards and development

of care in the community blurred the previously clearer distinction between health and social services responsibilities

• 1988 – 2001 NHS lost 50,600 long-term beds• 1990: Section 47 (NHS & Community Care Act)

assessments gave social services authorities gatekeeping functions

• ‘Care in the Community’ Led to misconception about funding responsibilities also moving.

• People having to fund own healthcare, which was previously being provided by NHS

Primary Legislation• NHS Act 2006, Section 3 (supersedes NHS Act 1977)– Primary statute for nursing care– Qualified target duty

• National Assistance Act 1948, Section 21– Limited power to provide some nursing care ‘in

connection with’ accommodation• Upper limit to what LAs can provide

Local Authority Limits (1)• S.21(8) National Assistance Act 1948

(accommodation)

• “Nothing in this section shall authorise or require a local authority to make any provision …authorised or required to be provided under the National Health Service Act 2006”

• In simple terms: it is unlawful for social services to provide a service that could be provided by the NHS

Local Authority Limits (2)

• S. 29(6) NAA 1948 (general welfare services)

• “Nothing in … this section shall authorise or require … the provision of any accommodation or services required to be provided under the National Health Service Act 2006”

(Note absence of “authorised or”: In simple terms: it is unlawful for social services to provide a service that must be provided by the NHS)

1994 – 1999

• Within one year of Care in Community concerns re over-restrictive policies of NHS – Leeds case ombudsman report 1994

• Flurry of Circulars and Guidance• 1995 NHS,SSI & Ministerial Concerns• over-restrictive criteria of HAs

Coughlan (1)• original High Court decision• review of history of nursing care• no change by ‘Care in Community’, Circulars

not wrong• “specialist” nursing concept criticised• ‘quality’ or ‘quantity’ of care needed may

cause it to exceed LA lawful provision

Coughlan (2)• NHS Act dominant, LA provision last resort• Sec of State cannot decline to provide just

because LAs will fill gap• LA primary role is to provide accommodation• can provide some nursing “in connection” with

it, as part social care package• must fall outside NHS obligation, having regard

to “scale” of it and “type”

Coughlan (3)

• no exact line, and may evolve with changing standards of society

• “merely incidental” or “ancillary” (quantitative test) and “of a nature” (qualitative test) social services can be expected to provide

• note very limited language used• concept of “primary health need”

Coughlan (4)• Eligibility criteria must identify at least two

categories:– those fully funded by NHS– those where LA could pay for some nursing services,

and NHS the rest• in second category, NHS to pay it all if cannot

draw a clear division• LA cannot pay for services that are not its

responsibilities• This HA’s criteria were unlawful

Coughlan (5)• health care element of her and other residents “far

beyond” LA obligations• their disabilities “beyond the scope of LA services”• her nursing care could not “lawfully be provided by the

LA under s 21”• needed services of “wholly different category” • LAC(99)30/ HSC 1999/180 – 2 year gap then• LAC(2001)18/HSC 2001/15: June 2001• Health and Social Care Act 2001: free nursing care

Post Coughlan

• Health and Social Care Act 2001: free nursing care

• free-standing, so no change to Section 21 or Section 3 (NHS Act 1977 at that time)

• Practice Guide and Workbook (August 2001) -- confusion over what is ‘nursing’

Continuing Concerns• Ombudsman Report February 2003– Criticised 2001 guidance – HAs struggling– Recommended reimbursement

• Pointon case: February 2004– Wife providing nursing care at home– Psychological needs

• Ombudsman Report December 2004– Need for clear, transparent, national criteria– Need for accredited tools and good practice guidance

• Select Committee Report April 2005– Recommended fundamental re-think of health/social care divide

Grogan (January 2006)

• PHN test accepted (LA not party)• Pamela Coughlan not someone for whom LA could

“legally provide” nursing services• potential for a gap• must consider cases against upper limit of lawful LA

provision, not just lower limit of primary health need• RNCC and Circulars arguably not Coughlan-compliant

– understandable criticisms of these

St Helen’s Case Aug 2008• Court of Appeal – Pre-dates National Framework• Referred back to Coughlan• PCT prime decision maker, but criteria can’t place

responsibility on LA beyond its legal powers under NAA • No gap is allowed• Care needs don’t become health care needs just by being

complex, intense or unpredictable.• Orthodox Judicial Review correct route for challenge• Court disapproved of two public bodies engaging in

expensive litigation over who should pay

Key Questions• What is nursing care?• What is ‘of a nature which it can be expected

that an authority whose primary responsibility is to provide social services can be expected to provide’

• What counts as merely Incidental or Ancillary?• What is a Primary Health Need?

The National Framework • One national process for all adults for

determining eligibility for NHS Continuing Healthcare

• Definition of NHS Continuing Healthcare• One set of tools to be used throughout England• National Practice Guidance• NHS and LAs required to work together

Process

Checklist Co-ordinator

MDTAssessment

DST with Recommen

dationDecision

Involvement and communication with Individual/Representative

within 28 days

EligibilityCorrect consideration of eligibility (Framework 46-49)Eligibility based on individual’s assessed needs not:– the person’s diagnosis or the setting of care;– the ability of the care provider to manage care; – the use of NHS-employed staff to provide care; – the need for ‘specialist staff ’ in care delivery; – the fact that a need is well managed; – the existence of other NHS-funded care; or – any other input-related (rather than needs-related)

rationale.

Primary Health Need (1)• (28) PHN determined by :– Nature, and/or – Intensity, and/or – Complexity, and/or – Unpredictability of need

• Characteristics above in combination or alone may indicate PHN

• PHN is not about the reason (diagnosis) why someone requires care or support, it is about their overall actual day to day care needs.

Primary Health Need (2)• Primary Health Need (PHN) is not defined in law or in the

Framework…..here is an attempt to explain…• ‘In simple terms (not a legal definition) an individual has a

primary health need if, having taken account of all their needs (following completion of the DST), it can be said that the main aspects or majority part of the care they require is focused on addressing and/or preventing health needs. (para 4.2 PG)

• PHN test to be applied so that there is no gap between the limits of LA responsibility (as given in Coughlan) and provision of NHS continuing healthcare (26).

Directions 2009 – Key PCT Requirements• Assess for CHC where it appears there may be a need for

CHC – if screen can only use Checklist.• Inform individual in writing of decision whether to assess• Ensure MDT assessment carried out and following this

that the DST is completed and is used to inform PHN decision – if PHN then CHC

• If in totality needs above LA powers must have PHN• Must accept PHN if fast track application• Consult with social services before deciding eligibility• Notify outcome in writing and explain how to appeal• Agree dispute resolution procedure with social services

How does the Framework apply to People with Learning Disabilities?

• Campus and long-stay hospital closures (110)• Otherwise Framework applies equally to

people with LD because it is a needs based not a diagnosis/client based decision-making process.

• Myths• However......

LD and CHC• Must involve right skills in assessment process• Must be person-centred• Must fully involve individual and family/carers• PCT (in future CCG) is the prime decision maker• Joint funding is legitimate below the PHN line• Whether the individual has a PHN or not they

must receive good quality personalised care that is appropriately monitored and reviewed

• LA and NHS must work together

Good Practice

Update of Framework• Parameters–Not changing policy or threshold–Only make changes in order to• Fit with new structures • Remove duplication• Remove inconsistency• Improve clarity• Fit with changes in other policy/guidance/law

• Decision to combine several documents• Awaiting legal and other checks

Proposed Clarifications (1)

• Transfer of legal responsibilities to CCGs and NCB• Sharing info when individual lacks capacity• Well managed need• Flow chart• Evidence to support DST• What if the person concerned dies during

eligibility decision-making process

Proposed Clarifications (2)• Clarification of Fast Track criteria• CCG to secure case management• How Framework applies to people with LD• Reviews (use of DST, nature of review etc)• Not necessary to redo DST if needs haven’t

changed at review• Timescales for reviews of eligibility decisions

where individual challenges

In Conclusion

• Get the process right• Work with integrity across agencies• Say yes or no to eligibility for the

right reasons• Be ‘heroes for fairness’