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Found 152 results
  1. Content Article
    Many people are taking on more caring responsibilities for their relatives and friends who are disabled, ill or older and who need support. For Carers Rights Day, Miriam Martin, Chief Executive of Caring Together, looks at the role carers play at hospital discharge, why poor quality discharge can put the patient at risk and discusses what more can be done to support carers when patients return home from hospital.
  2. Content Article
    Parkinson’s is the fastest growing neurological condition in the world. It affects young or old, and in the UK around 145,000 people are living with the condition. With population growth and ageing, this figure is estimated to increase by 20%, within the next ten years. Currently there is no cure for Parkinson’s, but medication plays a vital role in managing symptoms and preventing deterioration. In this blog, Laura Cockram, Head of Policy and Campaigning at Parkinson's UK, talks about: How people with Parkinson’s can prepare their medication to go into hospital. Resources that can support you.
  3. Content Article
    The National Audit of Dementia (NAD) collected feedback between June and July 2020 to examine how the pandemic has affected hospital care for people with dementia. This report presents the findings from surveys completed by patients, their carers and hospital dementia leads.
  4. Content Article
    This is the report of an inquiry conducted by the Health and Social Care Select Committee in 2020/21 which considers how the social care system is supporting those living with dementia. In the report the Committee make the case that the UK government’s plans for the health and care levy provides insufficient funding for social care over the next three years.
  5. Content Article
    If you're a carer and the person you care for fractures their hip, this guide from the Royal College of Physicians will ensure that you are equipped with the information you need to support their recovery.
  6. Content Article
    Hundreds of healthcare organisations around the world are Schwartz Center healthcare members and conduct Schwartz Rounds® to bring doctors, nurses and other caregivers together to discuss the social and emotional side of caring for patients and families. This video explains more.
  7. Content Article
    Call 4 Concern is a patient safety initiative enabling patients and families to call for immediate help and advice when they feel concerned that they are not receiving adequate clinical attention. Here is the Royal Berkshire NHS Foundation Trust's leaflets for adults and children. You may also be interested in:  NHS Mid and South Essex's 'We're Listening' leaflet
  8. Content Article
    This guide, from the Social Care Institute for Excellence, aims to support day care managers, social workers, commissioners and providers, to restart or continue activities following the COVID-19 social distancing restrictions. It is focused on community-based day services, day centres (with and without personal care), including specialised day centre environments, and those with outdoor spaces.
  9. Content Article
    Government guidance on the changes to care home visits.
  10. Content Article
    This study in the British Journal of General Practice looked at the association between continuity of GP care and potentially inappropriate prescribing in patients with dementia, as well as the incidence of adverse health outcomes. The study authors found that for patients with dementia, consulting with the same doctor consistently, resulted in: 35% less risk of delirium 58% less risk of incontinence 10% less risk in emergency admission to hospital less inappropriate prescribing. The results demonstrate that increasing continuity of care for patients with dementia could improve their treatment and outcomes.
  11. Content Article

    John's Campaign

    Sam

    Sam posted an article in Dementia

    Dr John Gerrard was a doctor and a business man, and diagnosed with Alzheimers in his mid seventies. It was a slow decline, that sped up when he was ill or upset, for ten years. Then, at the start of February 2014, he went into hospital. He had infected leg ulcers which weren’t responding to antibiotics. The hospital had a norovirus outbreak which meant visitors weren’t allowed at all. He was there for five weeks. John went in strong, mobile, smiling, able to tell stories about his past, to work in his garden and help with things round the house. He was able to feed himself, to keep clean, to have a good kind of daily life. He came out skeletal, immobile, incoherent, requiring 24-hour care and barely knowing those around him. His family are sure that if he had not spent that time alone, without them, he would not have descended into such a state of deep delirium. Having someone with you - someone who you love, who you know, whose face you know (be they your carer, your family, your friend, your lover) - helps keep you tied to reality, to life, to sanity. John died in November 2014. His story, however, is still repeated. Far too many people die cut off from the people who care for them. Far too many places have dangerously over-restrictive policies (both predating and during the present pandemic) preventing people from being with people who need them. In the wake of his death, John’s daughter, Nicci Gerrard, cofounded John’s Campaign with Julia Jones, whose mother, June, also lived well with dementia (both Alzheimer’s and vascular) for many years before her death in 2018. John’s Campaign is June’s Campaign, is Everyone’s Campaign, for none of us should be blocked from our best, most special friends, family or carers.
  12. Content Article
    University Hospitals Leicester NHS Trust has published a guide to help parents and carers know what to do when young children fall ill. It gives advice on when and where to seek treatment for children suffering from common illnesses or injuries. The guidance, written by doctors, focuses on coughs, minor head injuries, vomiting and fever. The trust said it hoped to help families avoid long waits in A&E departments. Advice in the guide aims to help people decide whether to seek help from their GP, call 111, visit A&E or treat children at home.
  13. Event
    This joint conference hosted by The Mental Health – Time for Action Foundation and Safely Held Spaces is aimed at stimulating discussion and promoting change in the way mental health services view the role of the family in the therapeutic process. Going beyond the “carer-patient” model, the conference brings into focus the broader perspective that mental health is not just an individual concern but involves the whole family system. Recognising the importance of the family system’s wellbeing promotes a more holistic approach to mental health. Our objective is to foster an environment for learning and discussion about the latest evidence-based practices across the NHS and third sector organisations. The conference will encompass a series of talks, workshops, and interactive panel discussions. You will have the opportunity to engage with a network of families experiencing mental distress, paving the way for collaborative efforts.
  14. Content Article
    This guide is intended for people caring for people living with Alzheimer’s Disease and other forms of dementia, to help facilitate conversations that can help to make health care decisions as the need arises. It has been produced as part of the Conversation Project, a public engagement initiative of the Institute for Healthcare Improvement (IHI). The Project’s goal is to help everyone talk about their wishes for care through the end of life, so those wishes can be understood and respected.
  15. Community Post
    Hello everyone, We know there is much learning to be gained from listening to patient and families. This is particularly true when it comes to patient safety. Have you had an experience that you'd like to share with us? Maybe you identified a risk or shared a concern and were listened to and unsafe care was avoided? Maybe you weren't listenied to or you didn't realise what was going on and you or your family member were harmed? How did you find out about the patient safety incident? Was information shared with you that you needed to know? Were you supported? Was there an invetsigation into the incident and were you invited to contributed to it? Were lessona learned and acted upon? Have others learned from this experience, do you know?
  16. Community Post
    Call 4 Concern is an initiative started by Critical Care Outreach Nurse Consultant, Mandy Odell. Relatives/carers know our patients best - they notice the subtle signs of deterioration in their loved one. Families and carers are now able to refer straight to the Critical care outreach team directly if they feel that care has not been escalated. Want to set up a call for concern initiative in your Trust? Need some support? Are you a relative that would like it in your Trust? Leave comments below -
  17. Content Article
    The Safe Care at Home Review is an important reminder that people with care and support needs may experience abuse and neglect, sometimes under the guise of ‘care’. Older people, or people with disabilities, may be particularly vulnerable to harm because of their dependence on others and the complexity of their care needs. They might rely on other people for physical, mental or financial support, and may face difficulties recognising or reporting harm. The review draws on a range of evidence, including the Home Office funded Vulnerability Knowledge and Practice Programme, which has highlighted that one in six domestic homicides involved people who were cared for by, or caring for, the suspect.
  18. Content Article
    Unpaid carers provide significant levels of support to family or friends–equivalent to four million paid care workers. Carers often need support with their own health and wellbeing, but they are not always able to access this. Researchers from The King's Fund interviewed commissioners and providers of support to unpaid carers, ran focus groups with unpaid carers in four areas of England, spoke to national stakeholders and reviewed existing literature and national data sets, in order to understand the current picture of local support available for unpaid carers in England.
  19. Content Article
    This article looks at the experience of Tammy Dobbs, who has cerebral palsy and requires extensive support from home carers to carry out daily tasks. In 2016, Tammy's care needs were reassessed by the state of Arkansas where she lives, and the hours of support she was eligible to receive were cut in half. The change in eligibility was due to a new state-approved algorithm that had calculated her support needs in a new way, in spite of the fact that there was no change to her level of need.  The situation caused Tammy much distress and resulted in drastic life changes. The article highlights the issues associated with the use of algorithms to determine need and allocate resources in health and social care. It also raises questions about what transparency means in an automated age and highlights concerns about people’s ability to contest decisions made by machines.
  20. News Article
    More than 167,000 children are believed to have lost parents or caregivers to Covid during the pandemic – roughly one in every 450 young people in the US under age 18. The count updates the October estimate that 140,000 minors had lost caregiving adults to the virus, and is four times more than a springtime tally that found nearly 40,000 children had experienced such loss. In a report titled Hidden Pain, researchers from the COVID Collaborative and Social Policy Analytics published the new total, which they derived by combining coronavirus death numbers with household-level data from the 2019 American Community Survey. The death toll further underscores the daunting task facing schools as they seek to help students recover not just academically, but also emotionally, from a pandemic that has already stretched 22 months and claimed more than 800,000 American lives. It’s an issue of such elevated concern that Surgeon General Vivek Murthy, on 7 December, used a rare public address to warn Americans of the pandemic’s “devastating” effects on youth mental health. An accompanying 53-page report calls out the particular difficulties experienced by young people who have lost parents or caregivers to the virus. Bereaved children have higher rates of depression and post-traumatic stress disorder than those who have not lost parents, according to a 2018 study that followed grieving children for multiple years. They are more than twice as likely to show impairments in functioning at school and at home, even seven years later, meaning these children need both immediate and long-term counseling and support to deal with such a traumatic loss. “For these children, their whole sky has fallen, and supporting them through this trauma must be a top priority.” Read full story Source: The Guardian, 22 December 2021
  21. News Article
    People are dying at home without the correct nursing support or pain relief because of staff shortages, according to the end-of-life charity Marie Curie. One in three nurses, responding to a survey by the charity and Nursing Standard, say a lack of staff is the main challenge providing quality care to dying people. More than half of the nurses said they feel the standard of care has deteriorated during the coronavirus pandemic. Some 548 nursing staff across acute and community settings in the UK completed the survey in September. They raise concerns about the increased number of people dying at home and insufficient numbers of community nurses to support these people and their families. One nurse who responded to the survey said: "If more [people] are dying at home then there is a huge pressure on local district nursing teams which struggle with staffing as it is." Julie Pearce, chief nurse and executive director of quality and caring services at Marie Curie, said: "The pandemic has accelerated change across many care settings. "More people are dying at home and staffing to support this shift isn't there. "The data shows a hidden crisis happening behind closed doors and people dying without access to pain relief or the dignity they deserve." Read full story Source: The Independent, 27 October 2021
  22. News Article
    Many unpaid carers looking after vulnerable friends or relatives during the coronavirus crisis say they are worried about how they will cope this winter. Almost 6,000 unpaid carers completed a Carers UK online questionnaire. Eight in 10 said they had been doing more, with fewer breaks, since the pandemic began - and three-quarters said they were exhausted. The government said it recognised the "vital role" of unpaid carers. In the Carers UK survey, 58% of carers said they had seen their physical health affected by caring through the pandemic, while 64% said their mental health had worsened. People also said day centres and reductions in other services meant the help they once got had reduced or disappeared, leaving many feeling worn out and isolated. Carers UK wants such services up and running again as a matter of urgency. Helen Walker, chief executive of Carers UK, said: "The majority of carers have only known worry and exhaustion throughout this pandemic. "They continue to provide extraordinary hours of care, without the usual help from family and friends, and with limited or no support from local services." "It's no surprise that carers' physical and mental health is suffering, badly. I am deeply concerned that so many carers are on the brink and desperately worried about how they will manage during the next wave of the pandemic." Read full story Source: BBC News, 20 October 2020
  23. News Article
    A group of experts in nursing and infection prevention and control (IPC) is today warning against the use of IPC measures as a “rationale” for stopping safe and compassionate visits in care homes during the Covid-19 pandemic. In a new open letter published in Nursing Times, the specialists say that preventing people from visiting loved ones in social care settings in the name of IPC is a “misinterpretation and at times even abuse” of IPC principles. The letter is the brainchild of independent global health consultant and former Infection Prevention Society (IPS) president, Jules Storr. Among the signatories are five former IPC presidents, current president Pat Cattini as well as incoming president Jennie Wilson. Dr Ron Daniels, chief executive of the UK Sepsis Trust, is also on the list, Helen Hughes, chief executive of Patient Safety Learning, as well as leading IPC nurse specialists, nurse academics, a GP and carers. Ms Storr, a nurse by background, and the hub topic lead, said she was motivated to take action after hearing “the most heart-breaking” stories from health professionals and relatives of residents about restricted visits in the UK in the wake of COVID-19. Some had not seen relatives for weeks or months, whilst others were only allowed to see their loved one once a week for 20 minutes at a distance, she said. One individual had told her how when their father had died only one family member was permitted in the home and they were not allowed to sit close enough to hold his hand. Ms Storr said these practices were “absolutely outrageous and wrong from an infection prevention point of view”. Read full story Source: Nursing Times, 16 October 2020
  24. News Article
    Unpaid carers looking after terminally ill friends and relatives during the pandemic struggled to access pain relief, with some patients dying in unnecessary pain, a survey has found. The survey of 995 unpaid carers by Marie Curie also found people had difficulties getting personal care and respite nursing for loved ones. Figures show the number of people dying at home rose by 42% in the past year. Nearly two-thirds of carers surveyed by the charity said their loved one did not get all the pain relief they needed when they were dying. Susan Lowe, from Solihull, cared for her mother Sheila before she died with bowel cancer in April last year, aged 74. She said caring for her mum during lockdown was hard as "the system was just under so much pressure that we had to manage largely on our own". The public health worker says she struggled to get the right pain relief medication for her mother in her final weeks and spent hours travelling to different chemists. Susan, 50, told the BBC: "My biggest regret is that my mum died in pain - more pain than she needed to be. She really wanted to be comfortable at the end. She knew she was dying." "What she really wanted - and this is what she was assured would happen - was to be comfortable. She was told she would get the drugs that she needed for it to be as bearable as possible... I remember breaking down in tears a couple of times in the pharmacy when I was told the medication mum needed wasn't in stock." Read full story Source: BBC News, 8 April 2021
  25. News Article
    Community and mental health service providers have warned the ongoing fuel crisis and other traffic disruption is starting to impact the care of vulnerable patients. Warnings about a HGV drivers shortage have prompted the panic-buying of fuel, with many petrol stations running out or heavily congested. Julia Winkless, a senior social worker and approved mental health professional in Suffolk, told HSJ clinical visits had to be cancelled as people were unable to get to work. Ms Winkless said: “We work over a very rural area, none of these petrol stations where [staff] live have got any fuel and we don’t know when there is going to be deliveries. Today, there were four mental capacity assessments cancelled.” There is also disruption to patient transport. A senior source at a West Midlands patient transport provider which often conveys people to mental health services told HSJ: “It’s been a bit of a nightmare in all honesty. We turned down a request this morning for a patient going to London because of the fuel and because of the [climate protesters disrupting motorways]… ultimately those patients are either at home and distressed carrying a big risk in the community or [accident and emergency] departments which [are not] the right settings.” Read full story (paywalled) Source: HSJ, 28 September 2021
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