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Found 153 results
  1. Content Article
    Each year, Carers UK carries out a survey of carers to understand the state of caring in the UK, and this is the largest State of Caring survey carried out by Carers UK to date. Over 8,500 carers and former carers shared their experiences.
  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. Event
    Panelists will provide a robust overview of the challenges that accompany medical care and propose actionable recommendations for patients, family members, and carers to balance life demands for patients with complex medical needs. Register
  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. 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
  6. 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.
  7. 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.
  8. 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
  9. 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.
  10. 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
  11. Content Article
    Government guidance on the changes to care home visits.
  12. Event
    until
    We all need care at some point in our lives. And as many as 8.8 million of us are already carers. Despite that, in just two years, the number of older people living with an unmet care need has risen by 19%. Why is our care system so neglected? Our care system was in crisis before the pandemic and remains in crisis now. It'll continue to be in crisis long after we're vaccinated against COVID-19. A system under stress, carers under pressure and those in need of care facing neglect. This is our new normal. Can nothing be done about this? Join our host, Claret Press publisher Katie Isbester PhD, and our three guests, as they grapple with the big issues that affect us all. They will talk with Professor of Sociology Dr Emma Dowling and the Director of UNICARE at UNI Global Union Mark Bergfeld, as well as acclaimed writer, with lived experience of care, Sarah Gray. Register
  13. Content Article
    In this blog, published on the Alzheimer's Society website, Sue Hansard reflects on the lessons she learnt from living with and caring for her mum who had Alzheimer's disease and passed away two years ago. She shares her perspective to honour her mum, celebrate their relationship, and help others affected by dementia.
  14. Content Article
    Technical developments tend to grab the headlines in health care. Predictive analytics, telemedicine, electronic health records — technology is rightly seen as a transformative force in health delivery. But it’s not the only one. At Rotterdam Eye Hospital, hospital administrators have found that through their ongoing design-thinking program, lower-tech measures can also improve health care. Simple measures such as building a more intuitive website, replacing harsh fluorescent lighting and cold linoleum floors with softer lighting and wood parquet, and giving children and pediatric ophthalmologists matching T-shirts have reduced patient fears. Addressing patients’ fears is important because fear can make an eye operation difficult or even impossible. Moreover, less fear translates into greater patient satisfaction. Now, Rotterdam Eye Hospital has integrated a measure that is even lower-tech: better conversations.
  15. 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.
  16. Content Article
    If you have a relative with a learning disability who is at risk of behaviour that challenges, you may want to find out more about Positive Behavioural Support (PBS). PBS provides support for a person, their family and friends to help people lead a meaningful life and learn new skills without unnecessary and harmful restrictions. It is not simply about getting rid of challenging behaviour, but with the right support at the right time the likelihood of behaviour that challenges is reduced. The Positive Behavioural Support Resource for Family Carers has been developed with The Challenging Behaviour Foundation.
  17. Content Article
    Positive Behavioural Support is a way of helping people with learning disabilities who are at risk of behaviour that challenges to have the best quality of life they can. If you have a learning disability and behaviour which others may call challenging behaviour, these booklets have been designed to help you think about what having a good life means for you.
  18. Content Article
    Care provided by families valued at £135 billion over course of the pandemic so far. Carers UK calls on Government to recognise contribution of millions of carers and protect their health and wellbeing Research, released for Carers Rights Day, estimates that the care provided by people looking after older, disabled and seriously ill relatives and friends during the pandemic stands at £135 billion so far, after just eight months. Previous research by the charity found that the majority (81%) of carers have been taking on more care since the start of the pandemic and nearly two thirds (63%) are worried about how they will continue to manage over winter. Carers UK is calling on the Government to provide additional support for carers over winter and ensure those caring for more than 50 hours a week get access to a funded break. With many crucial face-to-face support services such as day centres and support groups significantly reduced – or in many cases closed – because of costly infection and control measures, Carers UK is warning that people caring round the clock are going to break down after months of caring without respite.
  19. Content Article
    The minutes from the most recent Liberty Protection Safeguards (LPS) National Steering Group make for interesting reading for all those in the care home sector. We learn from these that the Government has decided that “now is not the right time” to introduce the care home manager role in England that was previously envisioned under LPS. It had recently been confirmed that the public consultation on the draft regulations and Code of Practice for LPS will be taking place in Spring 2021 and implementation of the LPS is some way off, anticipated to be in April 2022. In the meantime Bevan Brittan provide an update for care home providers that gives the sector some clarity at this earlier stage.
  20. Content Article
    In this Episode of the 'This Is Nursing' podcast series, Gavin Portier speaks to Amanda McKie, Matron -for Learning Disabilities & Complex Needs Coordinator at Calderdale & Huddersfield NHS Foundation Trust. In this episode Amanda talks about health inequalities, mental capacity, advocacy and high profile key documents such as Death by Indifference, the LeDer Mortality programme and the current case of Oliver McGowan. Learning disabilities is a life long condition and they can present in any areas of health care. In this podcast we discover how important it is to have an understanding an appreciation and insight into the care experience of a person with a learning disability and their parents or carers.
  21. 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
  22. 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
  23. Content Article
    An open letter has been published in the Nursing Times from infection prevention and control experts, together with interested and concerned individuals and organisations, about the restrictions enforced in nursing, care and residential homes. Restrictions are being imposed in relation to COVID-19 across too many nursing, care and residential homes in the UK and beyond, in the name of infection prevention and control. A number of experts in this field, led by Jules Storr, independent global health consultant and former Infection Prevention Society (IPS) president, summarise in an open letter why infection prevention and control should be an enabler not a barrier to safe, compassionate human interaction in nursing, care and residential homes. By adding their voice their intention is to accelerate action to end this uncompassionate treatment of people in homes as well as for their families and other loved ones.
  24. Content Article
    This report sets out the progress and learning from the first phase of the COVID-19 pandemic in informing advice and recommendations to government and the social care sector. The Social Care Sector COVID-19 Support Taskforce was commissioned in June 2020, with this report seeing the completion of its work in August 2020. The taskforce was set up to oversee the delivery of two packages of support that the government had put in place for the care sector: the Social Care Action Plan and the Care Home Support Plan. In addition, the taskforce was asked to support the government's work on community outbreaks – areas of the country that needed particular help and intervention to deal with higher rates of infection – and advising and supporting local places to consider and respond to reducing the risk of infection in care homes and the wider social care sector. Its further remit was to provide advice on the requirements for the response to COVID-19 in the next few months, ahead of and into winter.
  25. Content Article
    A large sample of non-hospitalised COVID-19 patients still experience multiple symptoms months after being infected. These persistent symptoms are associated with many clinically relevant outcomes, including poor health status and impaired functional status. To date, no information is available about care dependency. The authors of this study, published in the Journal of Clinical Medicine, aimed to explore the level of care dependency and the need for assistance with personal care in non-hospitalised COVID-19 patients. 
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