Support for Long Term Conditions

Jeanette Leech, Associate

research in practice for adults

Thursday April 24 2008, Taunton

Part One:

A growing concern for health and social care policymakers,

practitioners and researchers

What conditions are you working with?

A definition

The Department of Health defines a long term condition as one “that cannot, at present, be cured, but can be controlled by medication and other therapies”.

http://www.dh.gov.uk/en/Policyandguidance/HealthandsocialcaretopicsLongtermconditions/index.htm

The overall picture• Globally 59% of all deaths from long-term conditions• 46% of the global disease burden from long-term conditions• In the UK, 2% of people account for 30% of unplanned admissions,

60% of all admissions and 80% of GP appointments• People with long-term conditions twice as likely to be ‘intensive

users’ of healthcare: the 10% of patients who account for 55% of inpatient days

• 6 out of 10 people in the UK self-report a chronic condition• Not just older adults: 15% of under 5s and 20% of 5-15 year olds• Ageing population will only increase these pressures – every

decade the numbers of people living with a long-term condition is predicted to increase by one million

• 65% of people with a long-term condition find at least one daily activity difficult; for 17% of people six or more daily activities are difficult

Socioeconomic circumstances

• Employment• Savings• Education• Deprivation• Access problems• Unhealthy lifestyle

Who may be involved in care?

• Social worker• GP• Consultant• Community matron• Specialist nurse / healthcare professional• Pharmacist• Mental health services• Voluntary service• Informal carer

The policy context

• NSF for Long-term (Neurological) Conditions

• Focus on independent living, early discharge and avoiding hospital

• Generic rather than condition-specific NSF: a shift for the NHS

How do we measure success?

• Reduced unplanned admissions

• Reduced time spent in hospital

• Condition-specific outcomes

• Greater self-efficacy

• Greater psychological well-being

• Ability to undertake certain daily activities

Exercise: Thinking About Need

Look at the scenario and, in small groups, come up with a list of SPECIFIC NEEDS that either the person with Parkinson’s, or their carer, has.

NO universal needs

NO services

Kim’s Story

• Age at Interview: 39• Sex: Female• Age at Diagnosis: 38• Background: Kim is an

occupational therapist, married with 2 children, aged 12 and 10. Ethnic background/nationality: White British.

Kim was diagnosed with MND about a year ago. Now unable to walk she needs help with most daily tasks, but is still working as an occupational therapist and able to drive. Her speech is not affected.

Part Two:

Models of care

The Chronic Care Model - observations

• Adapted by most developed countries• Canada: added more of a pro-active /

preventative element• Four-year formal evaluation in the US:

– Delivery System changes effective– Self-management effective– Decision Support effective for processes– Information Systems ineffective

The NHS and Social Care Long Term Conditions Model

Kaiser Permanente Model

NHS Case Management

• By 2008 aim is for 3000 community matrons - but aim relaxed?

• Target to reduce unplanned admissions by 10-20%

• Case management historically unclear in the NHS

• The NHS as ‘data rich, information poor’

But….

• No hospital reductions as yet

• COPD an exception?

• Identification of at-risk groups may be difficult

• Successful identification may bring more resource use, not less

• Not ‘off the shelf’ solution

Community Matrons

• 3000 in place by 2008

• Caseload of fifty

• Most unplanned admissions are dehydration, urinary or respiration related

• Wide remit

• Generally liked by service users and carers

The Expert Patient Programme

• Introduced in 2002• Generic model• Structured six week course• Currently offers 12,000 places per year –

to rise to 100,000 by 2012• £18 million already invested• Expanding and becoming more accessible• Fits in with ‘patient-centred NHS’

The evidence behind EPP

• Based on the work of Holman & Lorig at Stanford University in 1979 – teaching arthritis self-care using lay trainers

• ‘Model patients’ rather than ‘healthy professionals’

• Also far cheaper scheme• The structure of the six weeks based on

Bandura’s social-cognitive theory of behaviour

The Expert Patient Programme – For

• It is ethical to involve the patient fully in their own care

• The public in general have a greater say in how care is organised

• Systematic independent reviews show that satisfaction with care is increased, but no real evidence that they improve health

• All trials show improvement in self-efficacy

EPP – some reservations

• Two randomised control trials 2005 & 2007 found use of healthcare services unchanged

• 2005 trial found no improvement in quality of life or psychological health

• Generic self-rated measures of health unchanged

• May promote consultation rather than reduce it• Success in the US poor indicator of success in

the UK• Studies of professionally-led condition-specific

programmes suggest a far higher success rate

Service user = virtual care manager?

• Sensitive to their own circumstances

• Services would have to be self-referring

• Missing some service user needs?

• Professional tensions

The ‘Strengths’ Model

• Focusing on the talents and capabilities of the person

• Can work with some long-term mental health conditions

• Limited evidence for physical conditions

Information & Technology models

• Many feel ill-informed about their condition and options

• Personalised information has the greatest effect• Directly helps with knowledge and understanding,

and gives confidence in shared decision-making• Indirectly may improve health and well-being• Recent policy has stressed the need for service

users to be given trustworthy information• Research indicates poor awareness of the social

care process

Information & Technology models

• Ambiguous evidence supporting technology-based approaches

• Problems of internet access

• Phone call after appointments

• No consistent evidence for phone calls replacing appointments

Condition-specific models

• Can give pointed condition-management skills

• May be dependent on the type of condition

• Service user preference split

Discussion

• What models, or elements of models, do you use in your own agency?

• What are their strengths and weaknesses?

Exercise: Application of the models

• Look again at the case study and the list of needs.

• What are the implications of one of the following in the care of Mike?– Community Matron case management– The Expert Patient Programme– Mike care managing himself– A model specific to coping with Parkinson’s

• How would each of his needs be met?• What needs might be missed?

Part Three:

Some key messages and questions

Working across health and social care

• Service users do not care where a service comes from

• Community Matrons useful here

• Often treated first as ‘patients’

• Multidisciplinary teams?

Harnessing the local community

• A structure that can harness informal and voluntary support networks is more effective

• Moving beyond formal structures and joint planning

• ‘Befriending’ schemes• Can provide peer support, advocacy, respite

care, specific information and carer support• Community pharmacists

What do stakeholders need to take into account?

• Ongoing work on service modernization

• The evidence base for Quality Requirements, including examples of service models and good practice

• Specific NICE clinical guidelines

• Previous NSFs

Source: National Service Framework for Long-Term Conditions, DH, March 2005

Service users

• “We need to be heard without scepticism”• “Even if you spend 15 hours a week going to physio, GP,

OT etc there are heaps of hours left in the week when you’re on your own”

• “I want to contact professionals to ask questions without feeling like it’s a hassle”

• “People with long term conditions don’t know what is available, don’t know who to ask, don’t know their rights”

• “Communication needs to be improved by recognising the importance of the person and not just the condition”

• “People should know what care is good quality care”• “Good social support can avoid the need for crisis

intervention”

Areas for further research

• Population with long-term conditions changing

• Peer case management?

• Transport

• Still limited evidence about ANY model of care, especially long-term

Useful resources

• Research on the effectiveness of self-care support: www.dh.gov.uk – self-care

• www.scie-socialcareonline.org.uk

• www.dipex.org

• Wagner’s Chronic Care model: www.improvingchroniccare.org

• Jeanette Leech email: JLeech.ripassociate@googlemail.com

Final Exercise

• List 3 things individually that you can take from today’s messages back to your agency

• Then discuss on your table your priorities to get other ideas!