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Long-Term Conditions

Long-Term Conditions Programme update, November 2008


Welcome to the Ministry of Health's Long-Term Conditions Programme November update.

The privilege of directing the Long-Term Conditions Programme is that it involves listening, observing and carefully considering the expert views of people from all walks of life and professional backgrounds. I am committed to ensuring that the Long-Term Conditions Framework for New Zealand/Aotearoa, currently being developed, will reflect the sum of all the expertise that New Zealanders and others are so generously sharing with us.

To all those who are part of this movement for improved long-term conditions management, thank you.

Any comments, suggestions or feedback please let us know.

Kind regards,

Jane O'Hallahan
Long-Term Conditions Programme Director
Ministry of Health
Sector Capability & Innovation Directorate

Overview from the Director’s Desk


Like the vast majority of people working in health, whether they studied nursing, medicine, management, pharmacy, physiotherapy or in any other allied or complementary field, I became a doctor to help people get and stay well.

The Long-Term Conditions Programme is about exactly that – preventing people getting long-term conditions and for those who do, supporting them to live as well as possible with the condition or conditions.

To create the environment for this to happen there will need to be change and evolution in our health system, in the services we provide, and in all our behaviour towards our own and others’ health.

There appears to be many interrelated factors converging to build a solid platform for this change.

There is undoubtedly unprecedented demand bearing down on the health system. Statistics New Zealand estimates by 2051, 1 in 4 New Zealanders will be over 65 years old. The number of centenarians is projected to climb from 300 in 1999 to 12,000 in 2051 and 18,000 by 2101. These demographics will force change.

Simultaneously people, be they the public, carers, or health professionals are changing and seeking further change.

The public has new access to information and heightened expectations. The British Medical Journal editorial on November 8 says: ‘Patients are ready for partnership’ (www.bmj.com).

Sitting at home people book a holiday on-line and ask why they can’t book their mammogram. They have a little piece of plastic stuck to their cellphone that allows them to go directly to boarding for a flight without waiting in a queue at check-in. They can’t understand why, as a regular oncology patient, they are forced to wait in a crowded emergency department for five hours. They watch a television drama and see advanced medical procedures and want the same for their sick friend or relative.

They’ve accepted the on-line security provisions for their private financial information and, at a click of the mouse, track their life’s savings or last $50. They want the same access to their health information.

At the same time many health professionals are feeling the demands on the system are sapping the satisfaction from their work and distancing them from the way they want to practice. They remember having more time with patients and their families.

People-centered care is not new. It is what most heath professionals do naturally if the systems and services design allows.

In the community and voluntary sector, organisations are building partnerships with other government agencies and want the same level of engagement from government health sector agencies. They want better recognition of the value they bring to the relationship. And recognition that they are often closer to the community and nimbler at innovating to meet the needs of the people they serve. They are asking to be involved in developing and planning services as well as getting a fair deal in competing to be the provider.

Finally amongst the general public, there is a growing awareness of the need to take action to be healthy. The multitude of campaigns about not smoking, being sun smart, practicing safe sex, the benefits of healthy eating, exercise, screenings, health checks, immunisation and the destigmatising of mental illness, and education about disability are helping to build health literacy. It is not universal, is easily undermined and is failing some population groups. There is certainly much more to be done and done differently to engage with those that the messages and campaigns have failed to engage with. However, there is a foundation of knowledge to build upon.

The first national Framework for Long-Term Conditions is currently being developed and is attempting to capture the wisdom of the many people who have spoken to us in this important area. A draft framework has been peer reviewed by many. I expect it will be read by many more expert eyes before it is completed in 2009.

Thank you all for your generous contribution of time and energy as you talk with us and share your experience and expertise.


Visit to Bay of Plenty DHB


I visited the Bay of Plenty DHB in October for a day and was fortunate to meet staff from the DHB, PHOs and providers. There is a great deal of activity happening across the DHB. However, a highlight was listening to two nurses working in Nurse-Led Kaupapa Māori Community Based Services. I felt I was glimpsing an exciting future.

They were both undertaking post graduate study to achieve nurse practitioner status alongside service delivery. The aim is to enable local communities to support and foster Māori nurses to become nurse practitioners.

Support is provided to the services through Māori Nursing Services for collegial support via nursing forums, clinical and field supervision. BOP DHB supports with advice on academic career pathways.

The nurses talked of the importance of establishing relationships and trust. One quote epitomized this, when referring to a visit to a Māori whānau: “Without trust, they will politely open the door and let me come in. But the door will be tightly shut to what I have to say.”

However, once trust is established the nurses had wonderful examples of being able to work with people and address some of non health-related issues that were often holding people back from following their medication and other healthy practices.


Peak Body Representative Group for Chronic Disease Prevention Meeting


The Long-Term Conditions Programme team met with the Peak Group representatives: Tony Duncan, CEO The National Heart Foundation; Sarah Thomson CEO Diabetes New Zealand; and Mark Vivian CEO The Stroke Foundation. The discussion reiterated feedback from other Community and Voluntary Sector groups including:

  • the pivotal role of the NGO sector in the future of long-term conditions management in New Zealand
  • the need to formalise the relationship and have a structure that works
  • that NGOs experience and thinking needs to be incorporated in funding and planning at every level, nationally, regionally and locally
  • that NGOs are not just service providers and have a valuable role in transfering knowledge
  • NGOs already put people first as they have an underlying value of respect for the individual
  • the need for a philosophy shift to more of a partnership.

INNOV'08


Professor of Integrated Care and Medicine at the University of Auckland Harry Rea invited Jane O’Hallahan to present at the INNOV’08 Conference with the Alleviating the Burden of Chronic Conditions (ABCC) research project.

Professor Rea chaired the session which had presentations on the Alleviating the Burden of Chronic Conditions (ABCC) Research Project by Freemasons’ Professor of Geriatric Medicine Martin Connolly at the University of Auckland and Dr Peter Carswell, School of Population Health University of Auckland. Dr Jane O’Hallahan presented on the work of the Long-Term Conditions Programme.

Professor Rea set the scene for the importance of a concerted effort to address long-term conditions management by talking about the critical imperative for change. He compared his practice over 40 years in clinical medicine. He talked about a typical patient in the 1970s who might have been a 70 year-old who had suffered a heart attack and who would be likely to die in two to three years. This was contrasted with a patient of today who might be a 35 year-old woman who was obese, was the family bread winner supporting four children, and who would live for many years with complex health needs including heart disease.

The session generated an enthusiastic discussion on the future of long-term conditions management for New Zealand.

Also at the INNOV’08 Conference were the finalists in the 2008 Innovations Awards. Many of the finalists in both the Innovation and Whānau Ora Awards are making a real difference to long-term condition management.

View more information on the following websites:


Nurse Maude


I had head from a number of quarters that I should visit Nurse Maude, so it was fortuitous that I met Sharee East over afternoon tea at the Counties Manukau Building Tomorrow’s Health Services Conference. I arranged to spend an afternoon with Sharee at their beautiful headquarters in Christchurch. I was not disappointed.

Nurse Maude’s philosophy is attention to quality: quality of services delivery; valuing and investing in the workforce; adapting their services and workforce to meet the needs of patients with multiple long-term conditions; and quality of facilities. We talked about the critical role of nursing in the future and models of care.

I came away thinking if in my old age there was no alternative to residential care, I would consider Nurse Maude.


Community and Voluntary Sector Advisory Group


Following the eight hui with the Community and Voluntary Sector mid year, the Long-Term Conditions Programme has set up a Community and Voluntary Advisory Group. The group is brought together for its expertise and interest in long-term conditions.

The purpose of the group is to advise the Programme and its first meeting will on 20 November 2008.


Consumer Focus Groups


The draft Long-Term Conditions Framework takes a very people-centred approach to the future development and provision of health services. Consumers have been involved in many ways throughout the development of the draft framework. Dedicated focus groups are being undertaken in October and November to provide a forum to capture specific consumer voices from groups of Māori, Pacific peoples, Asian peoples and people with rare disorders.

New Zealand Pain Society


For those interested in chronic pain management the New Zealand Pain Society president, Lorna Fox, recommends the following reading: the Chronic Pain Policy Coalition - a new pain manifesto:

The manifesto says that an effective approach to the management of chronic pain requires:

  • Education: so that pain is an integral part of all professional training
  • Empowerment: to support people to make decisions about their condition
  • Collaboration: so that all stakeholders share in a joined up patient strategy
  • Early Access: to prevent acute pain becoming chronic pain
  • Measurement: of pain as the 5th Vital Sign
View the manifesto on the Chronic Pain Policy Coalition website - A new pain manifesto (www.paincoalition.org.uk).

NGO-Ministry of Health Forum


All presentations from the day are on the Health and Disability NGO Working Group website: www.ngo.health.govt.nz.

Jane O’Hallahan led a session on long-term conditions. Participants worked in groups with the following feedback on ways to improve the relationship between health and NGOs. Examples of the feedback included:

Older people


Recognising:

  • spirituality is often part of older people’s lives
  • equipment can enable people to live independently
  • making transport available and accessible can reduce social isolation
  • the value of encouraging more older people into planning and implementation
  • the role of employment in reducing depression
  • the need to promote mental health of older people particularly aimed at improving self-esteem, self confidence and recognition of their own value to their community and their country

Mental Health


  • the need to build trusting partnerships with mutual benefits between providers and Health funders
  • use of support workers as navigator
  • NGOs can bring imaginative and creative solutions and they provide consumers with greater choice
  • need more flexible service specifications
  • acknowledge and support for developing the NGO workforce competency and capacity
  • recognise that major restructuring dis-empowers the sector as providers can lose significant relationships with people in the restructured organisation

Other


  • NGOs can be in a vulnerable financial situation and the expected financial downturn could impact badly on some who rely on their investments to help fund their services.
If anyone is interested in receiving email updates from the Ministry of Health’s NGO Desk, please email: Caroline_Speight@moh.govt.nz.

A consumer's view - Kathy Torpie


Psychologist and former multi trauma patient, Kathy Torpie met with the Long-Term Conditions Programme team and talked about her experience as a long-term patient after a car accident when she was hit head-on by a drunk driver. Kathy combined her professional knowledge with her experience as a patient to provide insights into what happens to a person when they have a long-term condition.

Kathy has a special interest in the therapeutic value of the clinician/patient relationship. Her unique perspective of the patient journey, based on both professional and personal experience, offers important distinctions between ‘physician centered’, ‘patient centered’ and ‘relationship centered’ healthcare.

She has written a book of her experiences, ‘Losing Face: A Memoir of Lost Identity and Self Discover ' that offers a deeply intimate view of the patient experience - one that is often hidden by more visible physical symptoms. Kathy is also available as a speaker, consultant, and trainer. She can be reached at ktorpie@yahoo.com.

Ministry of Social Development - PATHS programme


Ministry of Social Development Health/Welfare Services Manager Peter Reynolds explained the PATHS – Providing Access to Health Solutions to the Long-Term Conditions Programme team and the Cross-Ministry Long-Term Conditions Working Group.

The PATHS programme aims to help people on Sickness and Invalid's Benefits return to work. The initiative was started in Counties Manukau in 2004 and has since expanded to 10 DHB regions throughout the country. In every region, the key feature of PATHS is that it is a partnership between Work and Income, DHBs, PHOs and community mental health non-government organisations, thus providing a unique collaborative approach to meet client's needs.

An evaluation of PATHS was undertaken between July 2006 and June 2007 and found that in the Bay of Plenty PATHS helped more than 550 people overcome health barriers and get off benefits with 350 returning to work. PATHS offers an intensive case management approach designed to help clients identify their barriers or obstacles preventing them from working, the options that may be available to help minimise or remove those barriers and where MSD funding may be needed to pay. PATHS is able to be truly innovative in its approach, with the ability to facilitate access to services or pay for them privately.

The people who voluntarily join the PATHS programme may get help with access to surgery and health treatments, counselling, dietary packages, physical rehabilitation and psychological services amongst a wide variety of other options.

Significantly, PATHS was awarded the "Excellence in Rehabilitation" at the 2008 New Zealand Health Innovation Awards earlier this month.


Other meetings


In September and October the Long-Term Conditions Programme team has also engaged with a range of health organisations and groups including:

  • DHB Directors of Nursing
  • ACC
  • Some Māori and Pacific health experts
  • Independent Practitioners Association Council of New Zealand (IPAC)
  • Ministry of Health set up Primary Health Care Expert Nurses Group.
  • South Island Shared Services Agency (SISSAL)
  • McKessons Ltd (telephone-based services).

Interesting reading for those new to the area


Here is some useful reading if you are new to the area of long-term conditions. These articles are mostly recommended by NZ experts we have been talking to. We plan to add more as we come across them or as they are suggested by others. Please let us know of articles you believe are worth recommending.

Chronic condition models


1. Wagner EH, Austin BT, Von Korff M. Organizing care for patients with chronic illness. The Millbank Quarterly 1996;74(4):511-544.

2. Barr VJ, Robinson S, Marin-Link B, Underhill L, Dotts A, Ravensdale D, et al. The expanded chronic care model: an integration of concepts and strategies from population health promotion and the chronic care model. Hospital Quarterly 2003;7(1):73-82.

3. Singh D, Ham C. Improving care for people with long-term conditions. A review of UK and international frameworks: University of Birmingham and NHS Institute for Innovation and Improvement, 2006:1-35.

4. Wagner EH. Chronic disease management: what will it take to improve care for chronic illness? Effective Clinical Practice 1998;1:2-4.

5. Epping-Jordan JE, Pruitt SD, Bengoa R, Wagner EH. Improving the quality of health care for chronic conditions. Quality and Safety in Health Care 2004;13:299-305.

6. Bodenheimer T. Helping patients improve their health-related behaviors: what system changes do we need. Disease Management 2005;8(5):319-330.

New Zealand literature


7. Rea H, Kenealy T, Wellingham J, Moffitt A, Sinclair G, McAuley S, et al. Chronic care management evolves towards integrated care in Counties Manukau, New Zealand. New Zealand Medical Journal 2007;120(1252):http://www.nzma.org.nz/journal/120-1252/2489/.

8. Nixon D, Smith M, Chamberlain S. Delivering improved chronic disease outcomes in primary care: an affordable, achievable and sustainable pragmatic approach from primary care - The Foundation Program. New Zealand Family Physician 2006;33(2):108-114.

9. Doolan-Noble F, Tracey J. Chronic care management within a rural primary health organisation. New Zealand Family Physician 2007;34(5):339-344.

10. McKinlay E. Thinking beyond Care Plus: the work of primary health care nurses in chronic conditions prorgrammes. New Zealand Family Physician 2007;34(5):322-327.

11. Bycroft J, Tracey J. Self-management support: a win-win solution for the 21st century. New Zealand Family Physician 2006;33(4):243-248.

12. Wellingham J. Simplicity on the other side of complexity: a commentary on the challenge posed by chronic conditions in the general practice setting. New Zealand Family Physician 2007;34(5):312-316.

Reviews


13. Singh D. Transforming chronic care: evidence about improving care for people with long-term conditions. Birmingham: University of Birmingham and Surry and Sussex PCT Alliance, 2005:1-73.

14. Bodenheimer T, Wagner EH, Grumbach K. Improving primary care for patients with chronic illness. The chronic care model, part 2. Journal of the American Medical Association 2002;288(15):1909-1914.

15. Warm EJ. Diabetes and the Chronic Care Model: a review. Current Diabetes Reviews 2007;3:219-225.

Self-management and patient centred care


16. Wilson H. Becoming 'patient-centred': a review. New Zealand Family Physician 2008;35(3):164-170.

17. Newbold J, Taylor D, Bury M. Lay-led self-management in chronic illness: a review of the evidence. Chronic Illness 2006;2:249-261.

18. Bodenheimer T, Lorig K, Holman H, Grumbach K. Patient self-management of chronic disease in primary care. Journal of the American Medical Association 2002;288(19):2469-2475.

19. Holman H, Lorig K. Patients as partners in managing chronic disease. British Medical Journal 2000;320:526-527.

20. Fisher E, Brownson C, O'Toole M, Shetty G, Anwuri V, Glasgow RE. Ecological approaches to self-management: the case of diabetes. American Journal of Public Health 2005;95(9):1523-1535.

Implementation of changes in chronic care


21. Siminerio LM, Zgibor JC, Solano FX. Implementing the Chronic Care Model for improvements in diabetes practice and outcomes in primary care: the University of Pittsburgh Medical Center Experience. Clinical Diabetes 2004;22(2):54-58.

22. Von Korff M, Gruman J, Schaefer J, Curry S, Wagner EH. Collaborative management of chronic illness. Annals of Internal Medicine 1997;127(12):1097-1102.

23. Glasgow RE, Davis CL, Funnell MM, Beck A. Implementing practical interventions to support chronic illness self-management. The Joint Commission Journal on Quality and Safety 2003;29(11):563-574.

24. Jerant AF, Von Friederichs-Fitzwater M, Moore M. Patients' perceived barriers to active self-management of chronic conditions. Patient Education and Counseling 2005;57:300-307.

25. Coleman MT, Newton KS. Supporting self-management in patients with chronic illness. American Family Physician 2005;72(8):1503-1510.

26. Anderson D, Horton C, O'Toole M, Brownson C, Fazzone P, Fisher E. Integrating depression care with diabetes care in real-world settings: lessons from the Robert Wood Johnson Foundation Diabetes Initiative. Diabetes Spectrum 2007;20(1):10-16.

27. McEvoy P, Barnes P. Using the chronic care model to tackle depresssion among older adults who have long-term physical conditions. Journal of Psychiatric and Mental Health Nursing 2007;14:233-238.

Other useful links


Office of Community and Voluntary Sector newsletter is available online at the OCVS website www.ocvs.govt.nz.

Contact us


Email:
LTCP@moh.govt.nz

Mail:
Long-term Conditions Programme
Sector Capability and Innovation Directorate
Ministry of Health
P.O Box 5013
WELLINGTON

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Page last updated: 14 November 2008


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