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It’s time to rename the ‘visitor’: reflections from a relative
Anonymous posted an article in By patients and public
Redefining the terms ‘visitor’ and ‘visiting’ When I used to see my husband, wherever he was, I KNEW that I was NOT a ‘visitor’ – as a ‘visitor’ I would have gone out of kindness, with a drink, or fruit or whatever, but I was his wife and partner and best friend, and the one who had been caring ABOUT him for the last 7 years, until we both simply buckled. I was there to observe, to pick up on issues, to ask about medication, to hold his hand, to do a crossword, to listen to music, to ensure he was hydrated, to point out food preferences, and also to ask the staff to familiarise themselves with his life story book – an action which would help them engage better with him, because they would have starting points for conversation. I was not a ‘visitor’. I was a partner in his care, and advocate for him. Two initiatives have seen the redefining of the term ‘visitor’. John’s campaign John’s campaign is for the right to stay with people with dementia, for the right of people with dementia to be supported by their family carers. “Families are never visitors to a person with dementia; they are an integral part of that person's life and identity and often their last, best means of connection with the world.” On the 5 January 2022, Liz Saville-Roberts stood up in Parliament during Prime Ministers Questions and asked Boris Johnson if he agreed that disabled, sick and elderly people's human rights are not fair-weather luxuries, and that everyone with dementia, wherever they live, has the right to family life. For me this offered such hope for families. Organisations have signed up to John's campaign and made their own settings welcoming to families at various times, and, importantly recognised that the carer is still a partner in care, and IS a part of the therapy, the healing, the treatment – whatever you want to call it. The essential caregiver Age UK states: “guidance outlines that each resident should be able to choose an ‘essential care giver’. This is someone who provides not only companionship but also additional care and support to the person in the care home. The essential care giver should be able to visit more often, including during periods when the resident has to isolate due to coronavirus or if there’s been an outbreak in the care home.” Another welcome improvement to the situation, and again an acknowledgement of the role and of the importance of this person to the person in hospital or care. BUT, do ‘essential caregivers’ know who they are? Know what it means? Have they been consulted? And are they able to carry out their role? We need to redefine or rename the role of the ‘visitor’, particularly to clinicians and others involved in care. This can only be done through communication and co-production with those very families. We must be vigilant and ask questions, and ask for clarification and challenge when necessary whenever new ‘visiting’ regimes are in place. Sadly, I can envisage a meeting of staff (with no patients or their families present) to discuss this and we just need one person in the room to say how much “easier” it has been with no visitors, and that view would easily gain traction. This worries me… and must not be allowed to happen. -
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Content ArticleThis white paper focuses on three objectives to achieve person-centred care: People have choice, control and support to live independent lives People can access outstanding quality and tailored care and support People find adult social care fair and accessible It sets out a range of policies that the Government will implement over the next three years, working with the care sector and its users. These policies include: at least £300 million to integrate housing into local health and care strategies, with a focus on increasing the range of new supported housing options available. This will provide choice of alternative housing and support options. at least £150 million of additional funding to drive greater adoption of technology and achieve widespread digitisation across social care. Digital tools and technology can support independent living and improve the quality of care. at least £500 million so the social care workforce have the right training and qualifications, and feel recognised and valued for their skills and commitment. We want the workforce to also have their wellbeing prioritised. a new practical support service to make minor repairs and changes in people’s homes to help people remain independent and safe in their home, alongside increasing the upper limit of the Disabilities Facilities Grant for home adaptations such as stairlifts, wet rooms and home technologies. up to £25 million to work with the sector to kick-start a change in the services provided to support unpaid carers. £30 million to help local areas innovate around the support and care they provide in new and different ways, providing more options that suit people’s needs and individual circumstances. a new national website to explain the upcoming changes, and at least £5 million to pilot new ways to help people understand and access the care and support available. more than £70 million to increase the support offer across adult social care to improve the delivery of care and support services, including assisting local authorities to better plan and develop the support and care options available.
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Content ArticleFurther reading Blog by Kristin Flanary: The Quiet Place (15 November 2021)
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Content ArticleFurther reading Video: Journal of Cardiac Failure Full Length Interview with Kristin And Will Flanary
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Content ArticleWhilst there have been examples of good practice and praise from carers, the report found a number of areas of consistent concern: Patients, in some cases, were provided with very low levels of care but needed much more. This questions whether they should have been placed on a higher pathway and given an adequate level of support. Carers were not consulted about or involved in discharge. Consideration was not always given to a patient’s ability to remember or recall important information putting the patient’s and, at times, the carer’s health at risk. Some carers were given no or little information on a person’s condition and yet were expected to provide significant amounts of care. Carers were left to care without sufficient support, placing them at risk. Carers were left without contacts if there was a problem. Patients were clearly not safe to be discharged and their health was put at risk, with insufficient support. • Carers’ expert knowledge about complex conditions was not respected or utilised. Carers were not considered partners in care. Carers’ stories suggested that nutritional needs were not always being met.
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News ArticleMore 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
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News ArticlePeople 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
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‘Nightmare’ fuel shortages hit care of vulnerable patients
Patient Safety Learning posted a news article in News
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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Covid: Unpaid carers 'struggled to get pain relief' for terminally ill
Patient Safety Learning posted a news article in News
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 -
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Preventing COVID-19 infections in care homes
Patient Safety Learning posted an article in Guidance
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News ArticleMany 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
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Infection control experts issue open letter on care home visiting
Patient Safety Learning posted a news article in News
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 -
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Over 170 carers call UK whistleblower helpline during COVID-19 crisis
Patient Safety Learning posted a news article in News
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 -
News ArticleHundreds of people are dying in care homes from confirmed or suspected coronavirus without yet being officially counted, the Guardian has learned. More than 120 residents of the UK’s largest charitable provider of care homes are thought to have died from the virus in the last three weeks, while another network of care homes is reported to have recorded 88 deaths. Care England, the industry body, estimated that the death toll is likely to be close to 1,000, despite the only available official figure for care home fatalities being dramatically lower. The gulf in the figures has prompted warnings that ministers are underestimating the impact of Covid-19 on society’s most frail, and are failing to sufficiently help besieged care homes and workers. Read full story Source: The Guardian, 7 April 2020
