![]() ![]() The authors reflect on how words like ‘fight’ and ‘battle’ are associated with the process of gaining a budget and maintaining the support they need. But within these freedoms are "hidden realities". Personal budgets can give disabled people freedom from institutionalised care, as well as freedom to buy services and support to suit their own priorities. Liberation comes in the form of "self-determination over our lives". But, they say, "this comes at a cost to the individual in terms of practical and emotional labour". "For us and many disabled people", say the authors of this paper, "personal budgets are a tool for liberation". Tuesday June 27th 2023 The hidden realities of personal budgets And we’re always keen to hear from our readers, so if you know of a standout report that we should be featuring, or if you want to submit a comment piece, get in touch! ![]() As the Leadership Academy merges with NHS England, Karl makes the case for the Patient Faculty's legacy to be remembered and built on, and for the NHS to learn "with" patients, as much as "from" them.Īs always, we also bring you the latest and best patient experience research, packaged in handy summaries for busy people. He describes an approach developed by the NHS Leadership Academy's Patient Faculty, in which patient partners and staff "plan together, train together and work together". Our second contributor, Karl Roberts, picks up the theme of learning with patients. She calls for "trustful conversations" through co-production, where power dynamics between professionals and patients are actively examined, and people work together as one team, with everyone’s knowledge valuable and valued. In the summer edition of our quarterly magazine, Maddie describes the experience of being disbelieved when she tried to share her own knowledge of her own condition. So when it comes to patient experience work, should we think of patients and service users as "partners in learning"? With a growth in long term conditions, and with more and more people "self-managing" their health and wellbeing, it makes sense for clinicians and patients to work closely together. The idea of patients as "partners in care" has been gaining ground for a while. Tuesday July 4th 2023 Partners in learning The authors conclude that "Valuing family care giving will finally make unpaid care giving visible, enable families to improve patient care and outcomes, support health systems, and better prepare systems for future healthcare crises". To counter this, "government policies should formally recognise families as care givers, including paying for their labour, offering universal respite funding and services, and providing care giver benefits". "Debates within health systems about 'living with Covid-19' focus on matters such as workforce, delivery models, and funding, but not on the role of families". While visiting bans have eased, wider exclusion continues. Additionally, patients with supportive families are more likely to adhere to treatment plans, have better communication with their clinicians, and have better clinical outcomes and quality of life. In all three countries, the financial value of informal care runs into billions of dollars or pounds every year. The authors argue that the exclusion of family carers flies in the face of evidence that they bolster patient health and healthcare systems. The burden was not just physical: "Service providers experienced the moral anguish of turning families away and maintaining forced separation between people who were in clear distress". ![]() But they had unintended consequences, including poorer patient experience and a greater burden on overstretched staff. The bans were introduced as part of well-intended infection control measures. In England, the practice of blanket bans on visiting in hospital and care homes was subsequently condemned by the House of Lords. Their home countries of England, Canada and Australia all saw the swift imposition of strict visiting bans during the crisis phase of the pandemic. This paper starts with a frank statement: "Covid-19 brought radical shifts in healthcare policies and practice, including the abandonment of families as partners in care".Ĭan such a statement be justified? Yes, say the authors, who all have experience of informal or unpaid caring. ![]()
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