EPF lately released a report on the “rights and needs of older patients”. Ageing is a theme of particular importance from EPF’s perspective. The general population is ageing, many chronic diseases become more prevalent with age, and patients with chronic diseases developed at a younger age are living longer, thanks to modern medical treatments. A very specific role of EPF in the theme ‘Healthy Ageing’ should be to safeguard the interests of people with chronic diseases and their special needs when they are ageing. Here is the testimonial of Cees Smit that illustrate these specific needs.
While I’m getting older with haemophilia, my care-givers are getting younger. The same is true for EU policy makers. Where they are talking about new concepts like ‘healthy ageing’ and ‘self-management’, my personaI experience is increasing health problems and a decreasing ability to manage my own care. For EPF and also other patient groups the issue for the future will be how to incorporate the challenge of comorbidity in the ‘healthy ageing’ concept.
The quintessence of my personal story is that in more than sixty years of life, I became a person with multiple chronic diseases and with a broad range of health care contacts. It’s my belief that although this is my own personal story, it is comparable with the experiences of many other people with chronic diseases and comorbidity. Details may be different, but the general picture will remain the same.
Three problems worry me specifically with comorbidity. The first problem is the lack of coordination between medical specialists, the second is polypharmacy – the use of multiple medications – and as a consequence of these first two problems a third problem occurs which I prefer to address as the ‘fear’ factor. Like other persons with severe haemophilia I have a special type of ‘fear’. The ‘fear’ of a lack of coordination, a lack of control when you are hospitalized, when you need medical treatment from physicians who have no experience with haemophilia or when you are involved in a serious traffic accident.
In all these cases you, as a well-educated manager of your own disease, may not be able to influence or check the treatment you receive. The ambulance may take you to a hospital that has a bed available but no experience with haemophilia, and then valuable time may be lost. Part of the ‘fear’ of older people with haemophilia is that they are often not in good physical shape due to orthopaedic or viral complications. So when, for instance, minor or major surgery is proposed we not only fear the operation, but the consequences of this operation for total body functioning. To us our state of health is a delicate balance. ‘Vulnerability’ or ‘frailty’ may be better terms for this.
In the last couple of years I have regularly discussed the issue of comorbidty and its coordination of care problems. One thing I have learned is that geriatric patients have problems which are similar to those perceived by people with comorbidity; i.e. growing functional limitations, psychological symptoms and social and societal problems.
In rehabilitation, paediatric and geriatric care a holistic approach has been developed in which the patient is seen as a person in relation to his environment. Care encompasses not just the child but parents and family as well. This definitely compares with the way I grew up in the hospital setting – at a time when there was no treatment for haemophilia – where the matron regarded her patients as more than their illness. Although for haemophilia this concept already exists since the introduction of specialized comprehensive care centers, I wonder whether it is also possible to introduce a comparable hospital setting for patients with other multiple chronic diseases. This will be in sharp contrast with the way most hospitals are now organized, but its worth the effort to start a number of experiments. Of course, the approach cannot be too generalized. Comorbidity problems are often so complex that highly specialized knowledge is absolutely necessary. A special clinic and outpatient facility for people with comorbidity problems could probably be introduced.
Maybe, that in this way, EPF and other EU patient groups could contribute to the ‘Healthy ageing’discussions and could start with one or two experimental projects.