The Hague Responds to ALS Patient’s Search for Care
The story of Dick Richard, a 56-year-old resident of the Hague living with ALS, has prompted responses from local authorities and the Ministry of Health, Welfare and Sport regarding the challenges of accessing specialized care for ALS patients requiring ventilation. Richard’s situation highlights a gap in local provision, forcing him to seek care outside of The Hague.
Several care organizations in the region confirmed the limited availability of complex ventilation care. Basalt, Florence, HWW Zorg, and Residential care centers Haaglanden (WZH) all stated they are unable to provide the intensive, specialized care required for ALS patients needing ventilation support. Basalt explained this type of care is only offered in a limited number of South Holland nursing homes in collaboration with the Center for Home Awarching.
The Ministry of Health, Welfare and Sport acknowledged the poignant nature of Richard’s case, emphasizing the importance of allowing individuals to live and die in their preferred location whenever possible. However, the Ministry conceded that specialist intensive care, like that needed for ventilation, isn’t always available locally. As a result, Richard is currently seeking placement in Leiderdorp or Rotterdam. The Ministry has engaged the Palliative Care Practice Team to explore potential support options for Richard.
For patients with a life expectancy of three months or less, the Ministry suggested High Care Hospices as a potential solution, offering 24-hour nursing care and facilities for those reliant on medical equipment. health insurers can assist in locating suitable hospice placements. The Ministry also stressed the importance of early conversations between patients, families, and care providers regarding end-of-life wishes to facilitate timely and appropriate care.
The Municipality of The Hague affirmed its commitment to supporting residents facing difficult circumstances, including those nearing the end of life. They stated they aim to provide customized support through the Social Support Act (WMO), assisting residents and their families in navigating the complex Dutch care system. While acknowledging limitations – such as instances where modifications like stairlifts are not feasible due to safety regulations – the municipality pledged to collaborate on finding alternative solutions and offering peace of mind during challenging times.
