Group Advocacy News – March 2019

Group Advocacy

In January and February, patients continued to raise issues about life in the wider community beyond the hospital gates with us – issues around housing, accommodation, packages of support as well as common social and financial problems were raised frequently. Patients seem increasingly aware that the hospital is part of a wider system of support and talked about how they thought their admission could have been preventable in the first place had the right support been put in place, or about delays to their discharge because of difficulties getting support packages arranged. In the rehab wards, many patients are challenging the notion that they will have to remain in hospital for long periods of time or even for the rest of their lives. Many feel that they are in hospital for too long and that they would be able to cope with a tenancy and support in the community. These sentiments seem borne out by the new residents at St Stephen’s Court who waxed lyrical about the high build quality of their new flats and the feelings of freedom that had come with their move to the new accommodation. Even teething problems with the plumbing hadn’t been enough to take the shine off the very positive comments we heard there about the benefits of moving from hospital to community.


Another common theme over the winter months has been a perceived lack of consultant availability – patients simply aren’t seeing their doctors as much as they would like. Given that doctors currently have the ability to make key decisions in patients’ lives – about which medication they’re on and how much they have to take, about whether or not a patient’s liberty is to be restricted via a system of “passes”, about when or if a patient is to be discharged – many patients feel that the chance to have a regular, meaningful exchange of views is absolutely essential. People are often surprised to learn that it isn’t standard practice in this hospital for every doctor to see every patient on a regular basis; often patients don’t actually see their doctor face-to-face during ward rounds, with these major decisions being taken in discussions between nurses and doctors behind closed doors, without patients being present. Given the new human rights-based focus on supported decision-making and new ideas about ‘realistic medicine’, it is hard to see how this practice can continue much longer. As several patients have said to us recently, a quick five-minute meeting with a doctor once a week where they tell you what decisions they’ve reached about your care isn’t going to cut it anymore. The challenge is how to free up the time to allow for meaningful conversations and genuine supported decision-making between doctors and their patients, as this simply takes a significant investment of time and energy.


Finally, another very strong patient request has been for Wi-Fi to be made available to patients in the new hospital. It is our understanding that the infrastructure exists in the new building to allow for Wi-Fi to be switched on and made available to patients, but for reasons that we’ve asked management to explain, this hasn’t happened yet in this hospital, although it seems that other hospitals have been able to provide this service. We worry that patients aren’t going to be able to avail themselves of all the benefits that communications technology allows and that any hospital that’s fit for the 21st century will have to help its patients access Wi-Fi.