Chronic Illness Alliance

Chronic Illness Alliance Multiple Conditions Working Party

Preliminary Discussion Paper incorporating meeting notes of November 2007

1. Aim of the discussion paper: To develop the aims and objectives of the Chronic Illness Alliance Working Party based on the needs of organisational members of the Chronic Illness Alliance and their consumers.

2. Background: Members of the Chronic Illness Alliance Committee of Management are acutely aware that some people with chronic illnesses have more than one chronic illness; that some illnesses will put people at greater risk of contracting other illnesses. They have argued that these issues are poorly understood, and services such as nursing homes, don’t always meet the needs of people with multiple conditions because they are set up for the aged, while the silo nature of hospital-based specialist services may not produce quality outcomes in multiple conditions. It was decided to set up a Chronic Illness Alliance Multiple Conditions Working Party comprised of interested members of the Chronic Illness Alliance.

This workshop is for those members interested in establishing a working party, including its aims and objectives and establishing how it will work to assist all people with multiple conditions.

People who attended the inaugural meeting on 16 August had direct experience of thalassaemia, Crohn’s disease and colitis, multiple sclerosis, depression, prostate cancer, cardiomyopathy. These were the primary conditions and those present had Type 2 diabetes, musculoskeletal disease, asthma, depression, skin conditions and other conditions in combination with their primary condition.

Issues relating to the problems of living with multiple conditions were canvassed among Chronic Illness Alliance members earlier in 2007. These issues include:

 The relationship between depression and other chronic illnesses. While the relationship between depression and diabetes is well established, other people reported that there were strong relationships between other chronic illnesses and depression. Not all of these illnesses were ‘lifestyle’ illnesses. There is a correlation between illnesses such as epilepsy, cystic fibrosis, multiple sclerosis and depression.

Another factor contributing to depression was that there was little information and education given to those consumers with rarer conditions about prognosis and the effects of treatments. For example one person learned that her life- expectancy was to the mid-twenties or less from a text-book at the local library and only learnt from experience that the treatment she received for her condition inevitably caused several other illnesses. The uncertainly surrounding all these conditions contributed to depression.

 Stigma and chronic illnesses. There are a range of illnesses where people with those illnesses suffer discrimination. These illnesses may be ‘lifestyle’ ones where the person is perceived to be at fault, but they also include epilepsy, acquired brain injury and the dementias. Experience of stigma may lead people to hide their condition by not socialising, not exercising etc, so that they are more at risk of other ‘lifestyle’ illnesses.

 People who have multiple conditions are at great risk of adverse events. This may be related to the number of medications they require, some of which may lead to drug interactions. It may be due to confusion over the diagnosis (such as health professionals confusing treatment of Type 1 diabetes with treatment of Type 2 diabetes.) It may be due to the competing needs of caring for a number of different diagnoses in the one person where there is a need to prioritise which diagnosis is the most important one to concentrate on. It may be due to the difficulty of accessing medical services where the person’s entire medical situation is fully understood. A condition may be the outcome of treatment for a condition, for example treatment for a cancer may cause another cancer to develop many years later.

Many people with multiple conditions see multiple medical specialists and they or their carer, must act as their own care coordinators, especially if they have a number of rarer illnesses. Some of the meeting participants were ‘pioneers, that is they were living longer with rare conditions due to improved treatments than had previous generations, but this meant they were living with complications, that had not previously been part of their condition. Often medical specialists were no better informed than they were.

 People with multiple conditions may not be elderly. Many services for people with chronic illnesses are tailored to needs of the elderly. This may mean that younger people with multiple conditions do not qualify for some services or have to accept services better suited to elderly people (such as nursing home accommodation). Gaps in services were a problem for all people with multiple conditions. Younger people with cancer or thalassaemia are not able to receive services such as a diabetes nurse educator at a Community Health Service because their availability is related to aged care. There are only three nurses with expertise inflammatory bowel disease in Australia. Younger people disabled from their illness may not be eligible for home-help or the mobility allowance.

 People with multiple conditions are likely to be stressed, especially financially. Their ability to work may suffer; the costs of their care are likely to be far greater than others. The time spent in caring for themselves will contribute to this stress. They may be more socially isolated which contributes to stress  The problem for people with multiple conditions is that they usually have their primary condition treated; but there is a need for the ‘portfolio’ of their conditions to be recognised. Also include that the interrelation between conditions must be recognised and treated.

 Need to consider concept of ‘substitute morbidity’ or ‘substitute mortality’.

3. The necessity of a Chronic Illness Alliance Working Party The inaugural working party debated the necessity of establishing a working party. While care plans were being developed by DHS in Victoria they do not include the rarer conditions, nor are they likely to cope with the level of complexity because the relevant services are not available in the community. Additionally many people with rare and complex conditions may not see a GP for their care of the primary condition.

Participants in the working party agreed that there were no agencies or programs working with the levels of complexity represented by the Chronic Illness Alliance and its member organisations.

4. Draft working definitions of the Multiple Conditions Working Party  A cluster of conditions that create a complex relationship between the individual and the health system;  A cluster of conditions that require negotiating systemic barriers to achieve the best outcome for the individual with these conditions. OR  A cluster of conditions creating complex relationships between the individual and the health system requiring the individual to negotiate systemic barriers to achieve the best outcomes for their care and treatment.

‘Multiple conditions’ therefore is inclusive of co-morbid conditions; iatrogenic conditions and substitute morbidity or mortality.

5. Aims of the Chronic Illness Alliance Inc Multiple Conditions Working Party  Identify those health conditions that together create complexity of service management;  Identify those systemic barriers (organisational and political limitations) to optimal care for people with multiple conditions.

Establishment aims*:  Acknowledge the additional barriers for rural people who are a t greater disadvantage due to distance from specialist services; greater inequity of access;  Identify the skills shortages amongst health professionals where multiple conditions are concerned; (2)  Identify and contact partners to work with CIA for these aims e.g. Rural Health Alliance, health workforce organisations, Australian Healthcare Reform Alliance, RACP, e-health projects;  Find statistics related to multiple conditions eg UK NHS and Burden of Disease statistics; (1)  Where there is no evidence about impact of multiple conditions, then advocate for projects to produce evidence;  Argue for abandonment of condition-specific funding e.g. National Health Priorities and argue for the adoption of funding models that provide care to meet the needs of the person. (The new model of indigenous care where services are person-centred is a good model):  Argue for the removal of barriers to social welfare and community services so that a person who does not have a condition covered by the National Health Priorities can access services: (2)  Identify the ‘movers and shakers’ to assist us. Nee to address some of the policy and political ignorance in the area.  *Numbered items are those that have greatest priority.

6. Priorities for people with multiple conditions  Safety and quality issues are paramount because of the likelihood of adverse events, misdiagnosis, poor treatments and polypharmacy.  Need to enable people with multiple conditions to speak for themselves.  Need to treat depressions related to the condition itself, depressions that occur as an outcome of treatments and those that occur to the social conditions such as stress and stigma.  Need to create hope for people with multiple conditions through education and information; to address some the uncertainty they live with.

7. Next steps  Develop a working plan  Contact potential partners  Ensure all members of the CIA are aware they can contribute, either through attendance or via email.