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Found 164 results
  1. 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.
  2. 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.
  3. 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.
  4. 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.
  5. 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.
  6. 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.
  7. 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
  8. 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
  9. 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.
  10. 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.
  11. 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. 
  12. Content Article
    The aim of the project was to introduce and evaluate a Call for Concern (C4C) service that provides patients and relatives with direct access to the Critical Care Outreach (CCO) team, to give patients and relatives more choice about who they can consult with about their care, and facilitate the early recognition of the deteriorating ward patient. The project involved two phases: a six month pilot phase to evaluate the C4C service for feasibility, and its effects on patients, relatives and the health care teams. a three month phase implementing the C4C service onto two surgical wards to test and evaluate the findings of the feasibility phase in preparation for expansion to all hospital wards. Between 1st Sept 2009 and 23rd Sept 2010, the CCO team received 37 C4C referrals representing 0.5% of total CCO activity. Critical deterioration of a patient was prevented in at least two cases, and the service received positive feedback from patients and relatives. In the words of a relative, C4C provided: ‘…a better quality of care…and…reduces the risk of death.’
  13. Content Article
    Accessing social care and social support services is key to support the well-being of people living with dementia (PLWD) and unpaid carers. COVID-19 has caused sudden closures or radical modifications of these services, and is resulting in prolonged self-isolation. The aim of this study from Giebel et al., published in Aging and Mental Health, was to explore the effects of COVID-19 related social care and support service changes and closures on the lives of PLWD and unpaid carers. Fifty semi-structured interviews were conducted with unpaid carers. The study found that PLWD and carers need to receive specific practical and psychological support during the pandemic to support their well-being, which is severely affected by public health restrictions.
  14. Content Article
    Dementia is a cause of disability and dependency associated with high demands for health services and expected to have a significant impact on resources. Care policies worldwide increasingly rely on family caregivers to contribute to service delivery for older people, and the general direction of health care policy internationally is to provide care in the community, meaning most people will receive services there. Patient safety in primary care is therefore important for future care, but not yet investigated sufficiently when services are carried out in patients’ homes. In particular, we know little about how family carers experience patient safety of older people with dementia in the community.
  15. Event
    until
    Our ICUsteps trustees and invited guests answer questions about recovery from critical illness and what patients and relatives can do to help support their recovery. Book here
  16. Content Article
    Caring for people with learning disabilities in an acute hospital setting can be challenging, especially if that patient has transitioned from children’s services to adult services. The experience in children’s acute care differs to adult acute care; this difference in processes of care can cause great anxiety for the patient and their family and carers. The reasonable adjustments that were perhaps made and sustained in children’s services may now not exist. The purpose of this blog is to demonstrate the importance for services to be designed around patients’ needs with patients, families and carers. If we get this right, the quality of care given will be improved, patient satisfaction increases and, in turn, a reduction in patient harm. It is important to note that designing services around patients is not exclusive to learning disabilities; designing services with ALL patients at the centre with their involvement is crucial for trusts to provide safe care.
  17. Content Article
    The Care Quality Commission (CQC) has published the first of what will be a regular series of insight documents intended to highlight COVID-19 related pressures on the sectors that CQC regulates.   This document draws on information gathered through direct feedback from staff and people receiving care, regular data collection from services who provide care for people in their own homes, and insight from providers and partners.   The information collected from these sources is being used to understand the wider impact of COVID-19, to share regular updates with local, regional, and national system partners and the Department of Health and Social Care, and to highlight any emerging trends and issues.
  18. Content Article
    Around 6.5 million carers in the UK are propping up the NHS by keeping loved ones safe at home. Where is their recognition? For the past eight years, Sheena and her brother have been caring for their mother, who has early onset dementia, diabetes and other health issues. In her blog to the Guardian, Sheena discusses why she wants to see affirmative action for carers, why government needs to take responsibility and why the carers themselves need to be involved in these discussions.
  19. Content Article
    Nadia Whittome, an MP, went back to work in social care when the pandemic struck but was dismissed when she spoke out about the lack of personal protective equipment (PPE) faced by workers on the frontline. She recounts her experience in a blog to the Guardian.
  20. News Article
    More than 170 carers have called a whistleblowing helpline since the start of the COVID-19 outbreak, according to a report that highlights the voices of frontline workers and lays bare a catalogue of safety concerns. Compassion in Care, which operates the helpline for care workers, says it is seeing the whistleblowing process move at “unprecedented speed” as the coronavirus crisis unfolds, with many concerns being ignored. With the coronavirus death toll mounting in care homes, the charity’s report flags the “horrendous” unsafe conditions workers are facing amid concerns over lack of personal protective equipment (PPE), as well as the impact on carers’ mental health. One whistleblower likens the situation to a “war zone” with people struggling to breathe, while another describes the pain of not having the time, because of the overwhelming workload, to even hold distressed residents’ hands. In a new report, titled When the Silence Wins, Compassion in Care’s founder, Eileen Chubb, who is herself a former care whistleblower, writes: “During this crisis I have experienced the whistleblowing process moving at unprecedented speed, at such a high-volume and involving whistleblowing issues that are without exception extremely serious." “What is emerging from these cases is a lack of action by employers in response to genuine concerns." Read full story Source: The Guardian, 6 May 2020
  21. 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.
  22. Content Article
    Carers UK's website sets out the current government guidance as it relates to carers and offers suggestions for making plans. They've also answered common questions many carers have been asking on their FAQ page and offer some tailored tips on keeping a positive frame of mind in their Wellbeing Action Plan. For recent updates to the benefits system, see their A-Z of changes to benefits, assessments and support – COVID-19. 
  23. Content Article
    Many people will be experiencing anxiety about their health and safety during this time. This page provides information about COVID-19 and how to manage your mental health during the pandemic. Guidance includes advice on accessing treatment and medication.
  24. Content Article
    BBC Radio 4's You and Yours programme discusses the impact of coronavirus on social care and asks listeners if they feel their relatives in care are being properly protected? One listener, Amanda, speaks about the recent loss of her father who had Alzheimer's Disease. Following a fall and a hospital admission, he contracted the virus. A second caller, Bill, talks about the challenges and risks associated with needing care and support at home as a disabled man. Follow the link below to hear the full programme.  This feature aired on 14 April 2020.
  25. 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
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