Motor Neurone Disease and the NSF for long-term neurological conditions

2005 ◽  
Vol 15 (9) ◽  
pp. 27-31 ◽  
Author(s):  
Tricia Holmes

There are several hundred neurological conditions, some more commonly occurring than others. NHS England categorizes them into sudden-onset conditions resulting from an acquired or traumatic brain or spinal cord injury; progressive deteriorating conditions such as Alzheimer’s disease, dementia, and motor neurone disease; and other conditions that might have a more fluctuating pathway such as epilepsy, Parkinson’s disease, or multiple sclerosis. Most of these conditions result in varying degrees of disability that demand considerable personal and NHS resources to improve independence and the quality of life for these people.


Multiple sclerosis, Motor neurone disease, Parkinson’s disease, Alzheimer’s disease, Ketogenic therapy for epilepsy


1993 ◽  
Vol 7 (4_suppl) ◽  
pp. 21-30 ◽  
Author(s):  
Louise Earll ◽  
Marie Johnston ◽  
Elspeth Mitchell

Medicine and environmental changes have had tremendous success in controlling the infectious diseases that were the major causes of death in the last century. However, the consequential extension of life has been accompanied by an increase in the number of persons living with and dying of chronic illness.1 Despite these changes and their implications, the means by which people cope with such illnesses has only recently begun to receive the attention the subject warrants. 2,3 Such diseases have a high prevalence in the population and self-detection and self-management are critical to the treatment and control of chronic disease and disability.4 This paper examines how people cope with motor neurone disease and sets this in the context of earlier research on psychological aspects of chronic disease and current theoretical approaches to coping with long-term ill health.


1993 ◽  
Vol 7 (4_suppl) ◽  
pp. 73-76 ◽  
Author(s):  
David Oliver ◽  
Nan McMurray

Bereavement care begins during the terminal phase of motor neurone disease as the family prepare for the death. Due to the long-term nature of the illness there is a need to allow the expression of painful feelings and to ensure that the family is adequately supported. The responsibility for care in bereavement lies not only with the family but with the health care professions, bereavement support groups and the whole community.


2020 ◽  
Vol 6 (4) ◽  
pp. 00223-2020
Author(s):  
Petra Kotanen ◽  
Hanna-Riikka Kreivi ◽  
Aki Vainionpää ◽  
Hannu Laaksovirta ◽  
Pirkko Brander ◽  
...  

IntroductionThe prevalence of long-term invasive mechanical ventilation via tracheostomy in chronic respiratory insufficiency is largely unknown. We aimed to clarify prevalence and aetiology of the use of home invasive mechanical ventilation (HIMV) in Finland in 2015–2019.MethodsInformation on HIMV patients was collected yearly from all Finnish Hospital District patient registries between 1 January 2015 and 1 January 2019. Data included underlying diagnosis, time from diagnosis to HIMV initiation, treatment length, mortality and basic sociodemographic data.ResultsIn 2015, we had 107 HIMV patients. During the follow-up we received 34 new patients (24.1%) and 46 patients (32.6%) died. In 2019, we had 95 HIMV patients and the prevalence in Finland was 2.0 in 100 000. The most common diagnoses were motor neurone disease (29.1%) and spinal cord injuries (19.9%). Mean duration of HIMV among all patients on 1 January 2019 was 12.3 years and among deceased patients, 11.2 years. Treatment durations ranged from 7.7 years for motor neurone disease patients to 47.3 years for post-polio syndrome patients. Most patients (81.6%) used HIMV 24 h·day−1.ConclusionsHIMV is a rare, long-lasting treatment, most often used in chronic hypoventilation caused by chronic neurological disease. Based on our 4 year follow-up the prevalence of HIMV seems to be diminishing in Finland. Treatment duration and survival vary greatly depending on the underlying diagnosis. Most of the patients were totally dependent on HIMV, requiring 24-h care.


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