The National Framework for the Implementation of Continuing NHS Healthcare in Wales (2014) Advocacy Network Meeting 24 th September 2014

What is CHC? “A complete package of ongoing care arranged and funded solely by the NHS, where it has been assessed that the individual’s primary need is a health need. Continuing NHS Healthcare can be provided in any setting.”

Why we need to take a different approach…….the user & carer perspective ‘They just ticked the boxes and didn’t seem to care about my beautiful and amazing mother’ ‘I felt bullied and misled by a sick system within the National Health Service that is being deplorably used in order to save money.’ ‘ It was like watching dogs fight over scraps of meat. It was all about the money, not my Dad’ ‘I barely understood a word, there was so much jargon’ ‘Of course I took my lawyer; it’s a legal process isn’t it??’

Key Message For those people who are eligible to receive it, Continuing NHS Healthcare is an entitlement

Background Wales Audit Office Report (June 2013) publication/implement ation-national- framework- continuing-nhs- healthcare

2014 Framework hservice/chc-framework/?lang=en hservice/chc-framework/?skip=1&lang=cy Published 30 th June 2014 To be implemented from 1 st October 2014 So what’s new?

1.Underpinning Principles All guidance, however well crafted, is subject to interpretation. These underpinning principles are designed to support practitioners and managers to keep to the spirit of the Framework when applying the guidance to practical situations.

Principle 1: People first.

Principle 2: Integrity of decision-making

Principle 3: No decisions about me without me.

Principle 4: No delays in meeting an individual’s needs due to funding discussions

Principle 5: Understand diagnosis; focus on need.

Principle 6: Co-ordinated care & continuity.

Principle 7: Communicate.

Roles & Responsibilities The individual who is being assessed: Give honest information Express views Ask if you don’t understand Family/representatives Provide information Attend MDT (if individual wishes) in timely manner Co-ordinate family communication through one person.

Roles & Responsibilities (continued) The Care Co-ordinator Co-ordinate assessment & ensure evidence available (when should info be available to members of MDT? Ideally beforehand but with the caveat it should reflect current needs at MDT) ‘Back up’ CC required Person centred not service centred Make sure the individual and/or representative are informed and involved Keep the process moving Principles of managed handover Make sure the decision and rationale is recorded and QA’d

Roles & Responsibilities (continued) The multidisciplinary team Work with individual and/or representative Mature, mutually respectful MDT Honest, thorough, detailed and objective assessment/discussion Provide expert advice on eligibility to LHB- expert in the individual and expert in applying the process Provide clear rationale about decision Clearly articulate how they’ve reached decision Recommend setting & skill set for service delivery Consider disease progression Advise if can identify date where Primary Health Need became apparent.

Roles & Responsibilities (continued) The Commissioning Team Commission services required to deliver the care plan Balance individual preferences and sustainability Must be aligned with wider commissioning agenda Consider formal partnerships/pooled budgets

User and Carer involvement Not an optional extra Onus on professionals to make the process accessible Use of national public information leaflets

Advocacy 2014 Framework requires LHBs to routinely offer advocacy to anyone undergoing assessment and determination of CHC eligibility. Needs to be independent of HB’s and LA’s. Supporting/helping individuals/families understand a process which can be overwhelming. Advocates need to have comprehensive knowledge of the process in order to best support their client. Advocates to be included in training.

The Assessment Process Right Process: Robust comprehensive assessment. CHC is not a separate assessment process. Must provide the evidence to assess against the four key characteristics of a primary health need. Meetings add value but shouldn’t add delay – we can work in between!

The Assessment Process (continued) Right Place: Transfer/discharge to assess model: ‘adopt or justify’ Rehabilitation & reablement Step up/down Own home with appropriate support x

The Assessment Process (continued) Right People: Care co-ordinator role pivotal Everyone who is involved with individual - include specialists - recognise long-term relationships NB progressive disease The person themselves and/or family Advocate (if required)

New Decision Support Tool English DST now adopted but no need to duplicate paperwork: Audit trail of assessment DST summary sheet (matrix) Summary record of recommendation & rationale Equality Monitoring Form

Using the Decision Support Tool It’s not: An assessment or A substitute for professional judgement or A requirement for duplication Move away from the tick box and focus rationale on the 4 key characteristics of a primary health need

Reimbursement and Good Public Administration Legal responsibility commences at the point where MDT recommendation is accepted by LHB Principles of good public administration mean individual should be reimbursed (if they have paid for care) from date MDT determined eligibility MDT to advise LHB if they can identify date at which PHN became evident & LHB should reimburse accordingly.

Eligibility in progressive disease Use professional judgement Take deterioration and disease progression into account when considering eligibility Review more frequently if needed MDT to advise if individual’s disease pattern indicates stabilisation is likely to be short-term.

Fast Track process extended to ‘catastrophic events’ Permission granted to use common sense If someone has a ‘catastrophic event’, evidently has a primary health need, and is paying for their own care, consider fast track. Build in earlier review date if necessary.

Quality Assurance Can challenge quality of assessment but must not subject MDT to pressure to change views due to financial constraint Must not delay the provision of the services the individual requires Must be proportionate; should consider streamlining for non-contentious cases (the Framework does not require a panel process) Must identify teams or individuals who do not follow the process to expected standards and tackle root cause.

PROCESS Up to 8 weeks (can be longer if further rehabilitation is required but not due to eligibility process) TIMEFRAME 1 week max. 2 weeks Comprehensive assessment for longer-term care needs triggered. Identify the Care Co-ordinator/Lead Professional Obtain valid consent to comprehensive assessment. Transfer individual (if required) to the most appropriate environment for assessment. Deliver rehabilitation/reablement programme (unless clinically contra-indicated) Collate co-produced comprehensive assessment. Arrange the MDT meeting at which CHC eligibility will be considered. Ensure the individual and/or their representatives have the information and support they need to fully participate. At the meeting, review the comprehensive assessment and determine whether the individual has a primary health need. Ensure that a clear and agreed rationale is documented and shared with the individual and/or their representatives. Complete The quality assurance process Arrange the care package Contact individual and/or their representatives within 48 hours to answer queries etc. OVERVIEW OF STANDARD ASSESSMENT & CHC ELIGIBILITY DECISION-MAKING PROCESS

Review timescales Aligned to English Framework Requirement for initial 6 week review removed As a minimum the first review should be undertaken within 3 months unless triggered earlier by the individual their representative or the service provider. Annual as a minimum thereafter but use professional judgement If earlier review requested due to deterioration, this should be held within 2 weeks

Service Provision and Joint Working Expanded Section 4 Puts CHC firmly in the context of the continuum of care Integrated approach to support people to maintain as much independence as possible for as long as possible Promotes use of partnership and pooled budget arrangements Need to work together to identify gaps and work with providers to address them.

Direct Payments Framework reflects current legal and policy position. Welsh Government commitment to explore further For now - It is unlawful to use DPs to purchase health care - every effort should be made to maintain continuity - It may be possible to retain some element of DP for elements of package for which LA is still responsible e.g. opportunities for social inclusion Individual can refuse CHC assessment and/or package. Agencies must work together to mitigate risks as far as possible.

Personal Contributions (‘top-ups’) Guidance aligned to that given by Department of health Principle: NHS should never subsidise private care with public money. Patients should never be charged for, or pay towards NHS care. NHS funded package must be sufficient to meet the assessed need and deliver the care plan.

Personal Contributions (‘top-ups’) cont Additional Services Only if over and above care plan and purely through personal choice. See Framework for caveats ‘Premium Accommodation’ Not usually permissible May only be considered if it is possible to separately identify and deliver the NHS funded elements.

Retrospective claims Guidance now incorporated into the Framework One single process (as developed by the Powys Project) New cut-off date 31/7/2014 Annual rolling cut-off thereafter

Bits that aren’t new but here’s a reminder…

Determining eligibility for CHC The policy of Welsh Ministers on eligibility for CHC is based on whether an individual’s primary need is a health need (this is known as the “primary health need approach”). The sole criterion for determining eligibility for CHC is whether an individual’s primary need is a health need.

Primary Health Need The Framework is designed to support LHBs and their partners be compliant with the legislation Use of comprehensive assessment to apply the key characteristics of need and the impact on the care required to manage them will determine whether an individual’s primary need is a health need The totality of the overall needs and effects of the interaction of needs should be carefully considered (Section 3.59)

Nature Describes: The characteristics of an individual’s needs e.g. physical, mental health, psychological The type of need The overall effect of those needs on the individual The type (quality) of the interventions required to manage them

Intensity Describes: The extent (quantity) of need The severity (degree) of need The support required to meet the needs The need for sustained/ongoing care (continuity)

Complexity Describes: How the needs present and interact to increase the skill required to monitor, treat and manage the care The impact the individual’s response to their condition has on overall need e.g. physical condition results in development of mental health need.

Unpredictability Describes: The degree to which needs fluctuate The challenges this creates in meeting them The level of risk to health if adequate & timely care is not provided The presence of an unstable or rapidly deteriorating condition

Proposed Training Programme A modular training programme is under development and will be accessible from Autumn Will include: Priority (‘what’s new’) module CHC Foundation Course Chairing an MDT meeting The Care Co-ordinator Role Specialist modules for mental health and learning disability practitioners and children’s services (transition)

Complex Care Information & Support Site An online resource will be available from July. Checkout the Complex Care Information and Support Site (CCISS) at To be built on over time with contributions from partner agencies Fine line between preparing for MDT and pre judging the decision Skills/competence for chairing an MDT (specialist module) Clear split re eligibility decision and commissioning/finance Principles of Co-production

Work with WCVA: Scoping what advocacy services are available and where; How we can maximise coverage; Risks to existing provision; Constance Adams raising issues with Welsh Government Leadership Group.