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Found 149 results
  1. 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.
  2. Content Article
    The global coronavirus (COVID-19) pandemic has taken a dramatic toll on virtually all aspects of life, from the economy, to employment, relationships, public health, and personal health.  In the United States, more than 200,000 individuals have died of the coronavirus. As of October, hundreds of thousands of Americans are filing unemployment claims each week. For all of us, the pandemic has become a time marked by uncertainty, fear, and grief.  According to a survey conducted by the Centers for Disease Control and Prevention (CDC), about 40 percent of US adults reported struggling with mental health or substance use issues.  Although much of the general population has admitted to feeling more anxious and depressed during the pandemic, those with substance use and mental health issues face unique challenges.
  3. News Article
    The government is facing criticism over its guidance on safe visits to care homes in England. Labour and a number of charities have described the suggestions, including floor-to-ceiling screens, designated visitor pods and window visits, as impractical. Alzheimer's Society has said it "completely misses the point". Justice Secretary Robert Buckland told BBC Radio 4's Today programme the guidance was "non-exhaustive". The updated government advice, which came into effect on Thursday, says care homes - especially those which have not allowed visits since March - "will be encouraged and supported to provide safe visiting opportunities". Labour's shadow care minister Liz Kendall said many care homes would not be able to comply with the government's requirements which meant "in reality thousands of families are likely to be banned from visiting their loved ones". She said instead of suggesting measures such as screens, the government should "designate a single family member as a key worker - making them a priority for weekly testing and proper PPE". Kate Lee, chief executive at Alzheimer's Society, said: "We're devastated by today's new care home visitor guidance - it completely misses the point: this attempt to protect people will kill them." She said the pandemic had left people with dementia isolated and thousands had died. The guidelines "completely ignore the vital role of family carers in providing the care for their loved ones with dementia that no one else can", she added. She said the "prison-style screens" proposed by the government with people speaking through phones were "frankly ridiculous when you consider someone with advanced dementia can often be bed-bound and struggling to speak". That view was echoed by Caroline Abrahams, charity director at Age UK, who said she was "acutely aware" that the methods being sanctioned were "unlikely to be useable by many older people with dementia, or indeed sensory loss". Read full story Source: BBC News, 5 November 2020
  4. News Article
    A woman has been arrested after attempting to take her 97-year-old mother out of a care home for lockdown. Qualified nurse Ylenia Angeli, 73, wanted to care for her mother, who has dementia, at home. But when she told staff at the care home, they called the police who then briefly arrested Ms Angeli. The family have not been able to see their elderly relative for nine months, and decided to act ahead of the second national lockdown. Assistant Chief Constable Chris Noble, from Humberside Police, said: "These are incredibly difficult circumstances and we sympathise with all families who are in this position." "We responded to a report of an assault at the care home, who are legally responsible for the woman's care and were concerned for her wellbeing. We understand that this is an emotional and difficult situation for all those involved and will continue to provide whatever support we can to both parties." The incident came to light on the day the government announced new rules for families wishing to visit their loved ones in care homes. Under the guidance, issued hours before lockdown, families can meet relatives through a window or in a secure outdoor setting. Visits will need to be booked in advance, but the Department of Health and Social Care advice said care homes "will be encouraged and supported to provide safe visiting opportunities". All care home residents are allowed to receive visits from friends and family during the second national lockdown. Read full story Source: Sky News, 5 November 2020
  5. News Article
    A senior judge has said friends and family can legally visit their loved ones in care homes, in an apparent challenge to recent government policy that has in effect banned routine visits in areas of high COVID-19 infection. Mr Justice Hayden, vice-president of the court of protection which makes decisions for people who lack mental capacity, said courts are concerned about the impact on elderly people of lockdowns. He has circulated a memo that sets out his analysis that regulations do “permit contact with relatives” and friends and visits are “lawful”. He was responding to guidance from the Department of Health and Social Care (DHSC) last month telling thousands of care homes in England that visiting should be stopped in areas with tier 2 and tier 3 lock down restrictions, apart from in exceptional circumstances such as the end of life. It triggered blanket prohibitions by some councils and sparked anguish from relatives who warn a lack of contact is leading to misery and early death in some cases. Within a week, Gloucestershire county council told care homes in its area to stop visits until next spring. With the England-wide lockdown starting on Thursday, care home providers, families and groups including Age UK and Alzheimer’s Society, have called on ministers to this time make clearer provisions for visiting. Hayden said exceptions in the existing regulations mean contact with residents staying in care homes is lawful for close family members and friends. He said the court of protection was concerned about “the impact the present arrangements may have on elderly people living in care homes,” citing their suffering. Read full story Source: The Guardian, 2 November 2020
  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
    Hospitals have been ordered to allow partners and visitors onto maternity wards so pregnant women are not forced to give birth on their own. NHS England and NHS Improvement have written to all of the directors of nursing and heads of midwifery to ask them to urgently change the rules around visiting. The letter, which is dated 19 September and seen by The Independent, says NHS guidance was released on 8 September so partners and visitors can attend maternity units now “the peak of the first wave has passed”. “We thank you and are grateful the majority of services have quickly implemented this guidance and relaxed visiting restrictions,” it reads. “To those that are still working through the guidance, this must happen now so that partners are able to attend maternity units for appointments and births.” The letter adds: “Pregnancy can be a stressful time for women and their families, and all the more so during a pandemic, so it is vital that everything possible is done to support them through this time.” Make Birth Better, a campaign group which polled 458 pregnant women for a new study they shared exclusively, said mothers-to-be have been forced to give birth without partners and have had less access to pain relief in the wake of the public health crisis. Half of those polled were forced to alter their own childbirth plans as a result of the COVID-19 outbreak – while almost half of those who were dependant on support from a specialist mental health midwife said help had stopped. Read full story Source: The Independent, 23 September 2020
  8. News Article
    A hospital trust has been fined for failing to be open and transparent with the bereaved family of a 91-year-old woman in the first prosecution of its kind. Elsie Woodfield died at Derriford hospital in Plymouth after suffering a perforated oesophagus during an endoscopy. The Care Quality Commission (CQC) took University Hospitals Plymouth NHS trust to court under duty of candour regulations, accusing it of not being open with Woodfield’s family about her death and not apologising in a timely way. Judge Joanna Matson was told Woodfield’s daughter Anna Davidson eventually received a letter apologising over her mother’s death, which happened in December 2017, but she felt it lacked remorse. Davidson said she still had many unanswered questions and found it “impossible to grieve”. The judge said: “This offence is a very good example of why these regulatory offences are very important. Not only have [the family] had to come to terms with their tragic death, but their loss has been compounded by the trust’s lack of candour.” Speaking afterwards, Nigel Acheson, the CQC’s deputy chief inspector of hospitals, said: “All care providers have a duty to be open and transparent with patients and their loved ones, particularly when something goes wrong, and this case sends a clear message that we will not hesitate to take action when that does not happen." Lenny Byrne, the trust’s chief nurse, issued a “wholehearted apology” to Woodfield’s family. “We pleaded guilty to failure to comply with the duty of candour and fully accept the court’s decision. We have made significant changes in our processes.” Read full story Source: The Guardian, 23 September 2020
  9. News Article
    Sweeping bans on visiting at thousands of care homes risk residents dying prematurely this winter as they give up hope in the absence of loved ones, experts in elderly care have warned. More than 2,700 care homes in England are either already shut or will be told to do so imminently by local public health officials, according to a Guardian analysis of new government rules announced to protect the most vulnerable from COVID-19. Care groups are calling for the government to make limited visiting possible, including by designating selected family members as key workers. Since Friday any care homes in local authority areas named by Public Health England for wider anti-Covid interventions must immediately move to stop visiting, except in exceptional circumstances such as end of life. It also halts visits to windows and gardens and follows seven months of restrictions in many care homes that closed their doors to routine visits in March. The blanket bans will result in the “raw reality of residents going downhill fast, giving up hope and ultimately dying sooner than would otherwise be the case”, warned the charity Age UK and the National Care Forum (NCF), which represents charitable care providers. Read full story Source: The Guardian, 23 September 2020
  10. News Article
    Hundreds of people believe the helpline failed their relatives. Now they are demanding their voices be heard. Families whose relatives died from COVID-19 in the early period of the pandemic are calling for an inquiry into the NHS 111 service, arguing that many critically ill people were given inadequate advice and told to stay at home. The COVID-19 Bereaved Families for Justice group says approximately a fifth of its 1,800 members – more than 350 people – believe the 111 service failed to recognise how seriously ill their relatives were and direct them to appropriate care. “We believe that in some cases it is likely these issues directly contributed to loved ones dying, due to causing a delay in receiving treatment, or a total lack of treatment leading to them passing away at home,” said the group’s co-founder Jo Goodman, whose father, Stuart Goodman, died on 2 April aged 72. Many families have said they had trouble even getting through to the 111 phone line, the designated first step, alongside 111 online, for people concerned they may have COVID-19. The service recorded a huge rise in calls to almost 3m in March, and official NHS figures show that 38.7% were abandoned after callers waited longer than 30 seconds for a response. Some families who did get through have said the call handlers worked through fixed scripts and asked for yes or no answers, which led to their relatives being told they were not in need of medical care. “Despite having very severe symptoms including skin discolouration, fainting, total lack of energy, inability to eat and breathlessness, as well as other family members explaining the level of distress they were in, this was not considered sufficient to be admitted to hospital or have an ambulance sent out,” Goodman said. Some families also say their relatives’ health risk factors, such as having diabetes, were not taken into account, and that not all the 111 questions were appropriate for black, Asian and minority ethnic people, including a question to check for breathlessness that asked if their lips had turned blue. Read full story Source: The Guardian, 21 September 2020
  11. News Article
    A dementia charity is seeking a judicial review of the government guidance on care home visits. John's Campaign says many care homes in England are still refusing regular face-to-face visits, often essential for people with severe dementia. Dr Angela McIntyre, a retired doctor backing the campaign, has not seen her 92-year-old mother since March. A Department of Health spokesman said: "We know limiting visits in care homes has been difficult for many families." He added: "Our first priority is to prevent infections in care homes, and this means that visiting policy should still be restricted with alternatives sought wherever possible. "Visiting policies should be tailored by the individual care home and take into account local risks in their area." But John's Campaign believes the guidance does not take into account how important visits from family members are for dementia patients and believes it could be in breach of the law. Read full story Source: BBC Health, 3 September 2020
  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. News Article
    Relatives of care home residents with dementia should be treated as key workers, leading charities say. In a letter to the health secretary, they write that the care given by family members is "essential" to residents' mental and physical health. They argue the current limits on visitors have had "damaging consequences" and they want visits to resume safely, with relatives given the same access to care homes and coronavirus testing as staff. Signed by the bosses of leading charities including Dementia UK and the Alzheimer's Society, the letter calls on the government to "urgently" address what it calls the "hidden catastrophe" happening in care homes. The charities say that this "enforced separation" has caused a "deterioration" in residents' mental and physical health, particularly for those living with dementia - who make up more than 70% of the population of care homes. Read full story Source: BBC News, 9 July 2020
  14. 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.
  15. Content Article
    Going through critical illness and recovery is difficult for both patients and their relatives and will be unlike anything we've experienced before. Not knowing what's normal and what might lie ahead in the journey makes coping with things that much harder, which is why honest, accurate, patient-centered information is fundamental to the work of ICUsteps. Only people who've been through it really know what matters to patients and relatives in the position we were in. This understanding is what drives ICUSteps to produce a range of information resources that can help patients and relatives make sense of what has happened and cope with the road ahead.
  16. Content Article
    "Some weeks ago my main worries were around my GCSEs. Now I hear every day about deaths from COVID-19." Teenager Zoya Aziz's parents are both doctors. In this blog in the Guardian, she gives a frank account of her life at the moment and her fears.
  17. Content Article
    This is a step-by-step evidence based guide by University of Oxford is designed to support all healthcare professionals faced with the painful task of contacting relatives by telephone to inform them that a loved one has died.
  18. News Article
    Once COVID-19 seeps into care homes, it is a monumentally difficult job to protect the residents, writes Sky's Alex Crawford. We will look back at this appalling, tragic episode in our global history, and our children and grandchildren will ask us: "Did that really happen? Did you really leave the most vulnerable of our society - the elderly, the infirm, the defenceless, the muddled, sick and weak - in care homes, shut away from their closest relatives? Did you leave them to be ravaged by a deadly virus, and do very little to help them?" Because that is what's happening right now. There are elderly people - many with Alzheimer's, many with dementia, many frail - in thousands of residential homes up and down Britain, and they are very much at risk. Read full story Source: Sky News, 11 Aril 2020
  19. Content Article

    #SharedHearts

    Claire Cox

    Claire Cox posted an article in Blogs

    The Critical Care team at Brighton and Sussex University Hospitals has begun implementing a heartwarming idea, Shared Hearts, to support loved ones of patients.
  20. 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
  21. Content Article
    This poster has been developed by Dr Antonia Field-Smith and Dr Louise Robinson from the Palliative Care Team at West Middlesex Hospital. It provides a guide for communicating with relatives with compassion during the Covid-19 pandemic.
  22. News Article
    Hospitals should allow parents to be with children who are being treated for the coronavirus, NHS England has confirmed, after a 13-year-old boy died without any family members beside him. Under its national guidance to hospitals, parents are considered essential visitors, but hospitals do have discretion to suspend visitors if it is “considered appropriate”. Anyone who has symptoms of COVID-19 should not be allowed to visit a hospital. NHS England confirmed the position after 13-year-old Ismail Mohamed Abdulwahab died at King’s College Hospital in south London in the early hours of Monday without any family members present. A statement by his family suggested he was alone because of the risk of infection. On its website the hospital repeated the guidance sent to trusts by NHS England that states children are allowed one parent or carer as a visitor, but declined to explain why his family were not with him. The end-of-life charity Marie Curie has also called on doctors to allow families to be with their loved ones, describing it as an “important part of their duty of care”. Read full story Source: The Independent, 2 April 2020
  23. Content Article
    This guide contains advice and information about intensive care. It tells you how critical illness may be treated and what recovery may be like. Not every patient will experience all of these things, but they are more likely to if they have been in intensive care for more than a few days. Most of this guide is written for patients but there is a section specifically for relatives and visitors. By reading the guide, relatives will learn what a patient's recovery may involve and it will give them the answers to some of the questions they may have.
  24. Content Article
    This coroner's case, by coroner Emma Serrano, describes the events that led up to Maureen Brown's death at University Hospital of Derby and Burton NHS Trust. Maureen had an inpatient fall and died from her injuries. Could this death been prevented? How can we ensure the voice of the carer/family is heard, documented and acted upon in clinical practice?
  25. Content Article
    Danielle, Critical Care Outreach Nurse at Southend University Hospital, share's her 'We're Listening' leaflet as part of the trust's Call for Concern service. This leaflet will be displayed in all hospital areas. This service has been developed so that patients, friends and family can alert the Critical Care Outreach team if they have concerns that need listening to and gives a telephone number to call and outlines the next steps.
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