Long-Term Conditions Long-Term Conditions Programme update, June 2008 Last month we outlined our vision of a person-centred health system that responds to the whole-needs of people and families at risk of, or affected by long-term conditions. Turning the vision into a reality begins with listening to people affected by long-term conditions. In this last month I’ve been privileged to meet New Zealanders from Northland to Otago, patients/consumers, parents and carers, whose expertise is grounded in the daily work of making a difference for someone or a group of people with long-term conditions. I have also been fortunate to meet with United States experts who have had international acclaim for work on long-term conditions. Interestingly, in all these conversations many of the same themes keep surfacing. These include the importance of: equity, fairness and access; cultural influences; sorting out funding; empowerment and support to better self manage; inter-sectoral work; aligning the workforce; simplifying navigation of services; the need to respect the dignity of patients and carers; and the incredible toll a long-term condition can have on a person and their family/whanāu. Kind regards, Jane O'Hallahan Long-Term Conditions Programme Director Community and Voluntary Sector Hui Introduction A series of hui were held with the community and voluntary sector in late May and June. The aim of the hui was to: inform the development of the national Long-Term Conditions Programme establish a dialogue between the Ministry and the community and voluntary sector on the issue of long-term conditions establish a process for collaborating with the sector as key stakeholders in the Ministry’s Long-Term Conditions Programme enable participation by the sector in the development of a national Long-Term Conditions Framework. There was also a strong focus on engaging with Māori and Pacific community and voluntary groups. Hui Format 28 May - Central Wellington 28 May - Porirua, Wellington 5 June - Epsom, Auckland 5 June - Te Atatu, Auckland 6 June - Central Christchurch (2 hui) 10 June - Central Dunedin 12 June – Central Whangarei Discussions revolved around: providing feedback on the programme overview presented by Programme Director Jane O’Hallahan defining living well with long-term conditions partnership building between the Community and Voluntary Sector and the Ministry on long-term conditions issues discussing immediate objectives and what can be achieved within the next 18 months. 350 people representing 148 different groups from the sector attended. Of these 22 groups (15% of groups represented) were either Māori or Pacific groups. Major Themes In general participants welcomed the opportunity to attend and participate in the hui. All ideas, issues and comments were captured for each hui and this information is being used to assist the programme development. While matters specific to each region were raised at each hui, there were also a number major themes which were consistent across them all. Inconsistent approaches causing inequity issues. Complex funding packages which make seeking funding difficult. Ethnicity and the need to ensure there are appropriate cultural approaches. The need for Health to work closely with other agencies such as ACC and MSD especially around socio-economic factors, transport, housing, and education. Social isolation affecting carers, whanāu/families and patient/s. Health tends to work with a medical model which doesn’ adequately take into account personal and family factors. There is a need to incorporate a social model. The need to ensure the dignity of patients and carers is preserved and they are treated with respect. A desire from the community and voluntary sector to be empowered, to have access to reliable information and quality education to ensure they can take part in the programme on an equal footing. The difficulties of navigating different health services and the need to develop a coordinated approach and integrated care. Workforce issues and a need to recognise that there is a team involved in providing care. Encouraging and working towards self-management for the patient. Continued Engagement The Long-Term Conditions Programme has already established ways in which to continue to engage going forward. These include: a generic email address to which anyone can provide comment including all participants on the distribution list for the programme’s monthly up-dates establishing an on-line forum providing the opportunity for on-going dialogue. Work is currently being undertaken to explore ways of further engaging with the community and voluntary sector. Conclusion The eight hui were well attended by representatives of a cross section of the community and voluntary sectors. There is a real desire amongst the community and voluntary sector to be involved in this programme. This was apparent in the numbers that attended, the number of different groups represented and, most importantly, the level of participation during the hui. The hui have helped the Long-Term Conditions Programme team establish a dialogue with the community and voluntary sector and the input is being used to inform the development of the Long Term Conditions Framework. Online forum Also see the hui discussion and feedback on the Long-term Conditions on-line forum. Back to top The USA Visit At the end of May I spent two days in Pasadena and three days in Seattle at the invitation of Professor Chris Ham from Birmingham University (UK). Chris had organised a ‘Learning Set’ and this was its final leg. I was invited because the trip was focused on long-term conditions. I am well aware of the arguments that we already know many of the answers to improved long-term condition management and that we have home-grown experts in New Zealand that are the equal of international experts. I agree our experts are right up there and have the added understanding of the New Zealand context. However, I did learn things in the five days, especially in Seattle at Group Health, to do with aspects of the patient-centred care and the information systems they used. I was also very impressed with the wisdom of the one of the sages of long-term conditions, Ed Wagner. Next month we will have a full report on the trip but in the meantime, for more information please refer to: Group Health Overview (www.ghc.org) The Breakthrough Series: IHI's Collaborative Model for Acheiving Breakthrough Improvement (www.ihi.org) BTS Collaborative Training and Materials (www.improvingchroniccare.org) Back to top Proposed Leaders’ Forum Planning is currently underway for a forum on August 13, in Wellington, from 3pm to 5.30pm. Invitations will be sent in early July once planning is complete. The forum is proposed as an opportunity to provide an up-date on the Long-Term Conditions Programme and hear from leaders from: DHBs; health and allied health professional organisations; other government agencies; and others organisations with an interest in long-term conditions management. Back to top Across Ministry of Health Internal Working Group The Across-Ministry Working Group has been working on its vision statement and action plan for 2008/09. Over the year the group wants to achieve: a deeper understanding of the lived experience of people with long-term conditions, their families/whanāu and communities (to this end members appreciated hearing the messages from people who attended the community and volunteer sector hui) stronger links between their different work programmes, and between the Ministry of Health and other sectors a sense of teamwork and to encourage the whole organisation of the Ministry of Health to achieve these goals. Back to top Links to Useful Websites Improving Chronic Illness Care (ICIC) Improving Chronic Illness Care (ICIC) is a national programme of the Robert Wood Johnson Foundation. It is based in The MacColl Institute for Healthcare Innovation at the Group Health Center for Health Studies, USA. This website has extensive information and specialised tools to help aid system change including combination of the Institute for Healthcare Improvement's Breakthrough Series Collaborative model with Wagner’s Chronic Care model Improving chronic illness care Institute of Health Care Improvement The Institute of Health Care Improvement, Cambridge, Massachusetts USA is an independent not for profit organisation. It includes a focus on long-term conditions and system improvement. Chronic conditions World Health Organization World Health Organization, with a wide range of resourses relevant to improving long-term condition care. Chronic diseases The World Health Organization’s expanded version of the Chronic Care model, the Innovative Care for Chronic Conditions Framework Innovative Care for Chronic Conditions framework (ICCC) Government of British Columbia, Canada The Government of British Columbia, Canada website has useful information designed for health care providers and individuals living with a chronic disease and includes latest developments in chronic disease management in British Columbia. Chronic Disease Management UK Department of Health The UK Department of Health site with comprehensive information on their long-term conditions policies. Long term conditions Health Council of Canada The Health Council of Canada is funded by the Government of Canada. It operates as a non-profit agency and reports to the Canadian public. Their on-line library includes a section on chronic conditions. Health Council of Canada Online Library Flinders Human Behaviour and Health Research Unit The Flinders Human Behaviour and Health Research Unit, Flinders University, Adelaide, Australia. This is a centre for research, evaluation and development of chronic condition management. It includes coordinated care, care planning, behavioural change, self-management and specialises in the education and training of health professionals and consumers. The 'Flinders Model' of Chronic Condition Self-Management Stanford Patient Education Research Centre The Stanford Patient Education Research Centre, Stanford University, California USA have developed, tested, and evaluated self-management programs for people with chronic health problems Stanford Self-Management Programs Expert Patient Programme, UK Expert Patient Programme, UK. The EPP is a six week course for people with chronic or long-term conditions, that is delivered by trained tutors who are also living with a long term health condition. It aims to give people the confidence to take more responsibility and self-manage their health. Expert Patients Programme Community Interest Company Health Foundation The Health Foundation is a charitable foundation working to improve the quality of healthcare across the UK and beyond, and includes a focus on self management. Patient engagement Counties Manukau District Health Board Counties Manukau District Health Board website with documents related to their chronic care management initiatives. Chronic care management Back to top Contact us Long-term Conditions Programme Sector Capability and Innovation Directorate Ministry of Health P.O Box 5013 WELLINGTON Email: LTCP@moh.govt.nz Website feedback We welcome your feedback on this page. Back to top Page last updated: 30 June 2008

In this update: Community and Voluntary Sector Hui Introduction Hui Format Major Themes Continued Engagement Conclusion Online forum The USA Visit Proposed Leaders’ Forum Across Ministry of Health Internal Working Group Links to Useful Websites Contact us