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Showing results for tags 'Patient / family support'.
Found 285 results
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Content Article
GOSH response to error: a blog by Joanne Hughes
Claire Cox posted an article in Keeping patients safe
In this blog, Joanne Hughes, founder of Mother's Instinct and hub topic leader, gives her response to the recent news that childrens' deaths at Great Ormond Street Hospital (GOSH) have not been investigated properly. Amid claims GOSH put reputation above patient care, former health secretary, Jeremy Hunt, urged it to consider a possible "profound cultural problem". Joanne's daughter, Jasmine, died in 2011 following failures in her care. Soon after Joanne set up Mother’s Instinct with the ambition to provide a source of support specifically for families whose children die following medical error, and a platform to share their stories and experiences for learning to improve patient safety for children, patient engagement in patient safety, and care of avoidably bereaved parents. -
Content Article
ICU Steps: Patient and relative experiences of critical illness
Claire Cox posted an article in Patient stories
For many people involvement with intensive care is a daunting experience. For some it's part of the care plan after major surgery but for many others it's a sudden and unexpected event.You find yourself in an alien environment unlike any you've known before where patients are connected to all kinds of machines and drips, where you might not be able to tell day from night and where there's constant noise and activity. The people that work in the Intensive Care Unit do an amazing job, but even when patients are on the road to recovery they still have a long way to go before they're fully better. Depending on how ill the patient has been, recovery can take a year or more. Knowing what might lie ahead and also that you're not alone in what you're going through can be a great help for both patients and relatives. This webpage set up by ICU Steps, include experiences from patients and relatives as they have spent time on the intensive care unit. -
Content ArticleTo extend the ICU Steps patient information guide, they have produced a series of information sheets on issues relevant to recovering intensive care patients. These documents are exclusively available online. They're free to download in PDF format for you to print, photocopy and distribute as needed. Topics include: Acquired brain injury and intensive care Breathing and critical illness Delirium and intensive care Looking after yourself after critical illness Medical tests in intensive care Planned treatment on the intensive care Tracheostomy in intensive care.
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Content Article
Intensive care: a guide for patients and relatives
Claire Cox posted an article in Patient recovery
This guide from ICU Steps, 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. -
Content ArticleThis resource from Best Beginnings provides information about many national and local charities offering remote support for pregnant families and new paretns during COVID-19. The list includes organisations offering support and advice around: Pregnancy and birth Health conditions in pregnancy Parents of twins, triplets and more Premature Unwell babies Babies with disabilities or health conditions Breastfeeding and infant nutrition Mental health Bereavement Birth trauma.
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Content ArticleThe COVID-19: Recovery Response service has been set up by the UK Sepsis Trust and offers professional support to anyone who has been critically ill in hospital with COVID-19 and their family.
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Content ArticleThe Extensive Care Service is part of the Fylde coast Vanguard and is designed for frail elderly patients with two or more long-term conditions who are at high-risk of an emergency admission. Working closely with patients, the service aims to assist them to improve their health and wellbeing; support them to manage their own conditions and provide effective interventions when needed in order to better manage exacerbations of their conditions. One of the key components of the care model is patient activation. The service teams’ understanding of an individual’s ability to contribute to the management of their own health and wellbeing is key to ensuring the success of this approach. The model is new, different and includes the development of a unique role - a ‘wellbeing support worker’. These individuals are a consistent feature in a model which enables a fuller understanding of a patient’s ‘activation’ ability so that engagement and support can be tailored appropriately.
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Content ArticleThis report published by Carers UK looks at carers’ recent experiences of hospital discharge under the discharge to assess model. It reveals the devastating toll on carers where it is clear that they have been left with unacceptable levels of caring responsibilities which are unsafe in some situations. This has placed intolerable stress upon carers and has had negative outcomes for people needing care and support. A very clear thread from carers’ experiences shows that carers have not been involved, consulted or given the right information in order to care safely and well. If carers are considered to be partners in care, then, like health and care professionals, they need access to relevant information to help them support a person needing care safely.
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Content ArticleThis guide developed by Learn Together and Bradford Teaching Hospitals NHS Foundation Trust has been designed to help patients and families understand what to expect from patient safety investigations and how they can be involved in the process. It includes quotes and advice from patients who have been through patient safety investigations and spaces to record experiences, questions and reflections. The guide provides an outline of the investigation process, broken down into five stages: Understanding you and your needs Agreeing how you work together Giving and getting information Checking and finalising the report Next steps
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Content ArticleThis blog published by the Irish Health Service Executive (HSE) tells the story of Mark, who was diagnosed with schizophrenia 15 years ago, aged 15. It describes the issues he and his mother faced in getting him the care he needed, including being treated inappropriately and without dignity during emergency department visits, problems accessing ongoing community support and a reluctance to assist him with reducing his medication dosage. It also highlights how his family were not included in care plans and treatment decisions, and their needs as carers were rarely considered.
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Content ArticleFor some time now I've been looking to find out more about mental health services in Trieste, Italy. Then I met Vincenzo Passante Spaccapietra, co-host of the Place of Safety? podcast series. This has enabled me to learn more about the closure of the mental institutions in Trieste, Italy, and the work of Franco Basaglia. I was keen to find out what really took place, what this really means in practice and how we can adopt this model in the UK. We were delighted to have become involved and to have recorded a couple of podcasts. I recommend this resource to everyone interested in safe, compassionate, patient led mental health care.
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Content Article
Time To Talk Mental Health UK: Facebook support group
Claire Cox posted an article in Mental health
Time to Talk Mental Health UK is a fully private and confidential Facebook Community. The community is highly interactive and fully moderated. They provide a safe place for people to talk about their mental health in confidence with others who understand. In addition, they provide events, regular clubs and a library of resources. The community enables consistent support, which may otherwise be lacking in the mental health care package. -
Content Article
INQUEST Handbook
Claire Cox posted an article in Mental health
The INQUEST handbook is a free and trusted guide for bereaved families and friends affected by a sudden death that involves an inquest, available in print and online. It has been developed and shaped by the many families they work with, and helps prepare bereaved people for the inquest process in England and Wales. -
Content ArticleImproving experiences and outcomes for children and adults who are autistic or have a learning disability, their families and carers Ask Listen Do resources are designed to: support organisations to listen, learn from and improve the experiences of children and adults who are autistic or have a learning disability, their families and carers make it easier for people, families and paid carers to give feedback, raise concerns and complain.
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Content ArticleThis NICE guideline covers services for children, young people and adults with a learning disability (or autism and a learning disability) and behaviour that challenges. It aims to promote a lifelong approach to supporting people and their families and carers, focusing on prevention and early intervention and minimising inpatient admissions.
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Content ArticleThis report by the charity INQUEST, which provides expertise on state related deaths and their investigation to bereaved people, highlights that families are facing persistent challenges following the death of a loved one in mental health services. Based on conversations at one of INQUEST’s Family Consultation Days, the report shows that families face numerous hurdles during investigations and inquests into their loved ones’ deaths, and that processes are not delivering the change required. The Family Consultation Day heard from 14 family members who were bereaved by deaths in the care of mental health services or settings for people with learning disabilities and/or autism, and had faced or were going through inquests and investigations.
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Content ArticlePeople with a learning disability are more than twice as likely to die from avoidable causes than the rest of the population. Actor Tommy Jessop and BBC Panorama investigated some of the stories of families who say they were let down by their medical care.
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Content ArticleThe STOMP and STAMP programme of work is about making sure children and young people with a learning disability, autism or both are only prescribed the right medication, at the right time and for the right reason. This leaflet produced by Royal College of Paediatrics and Child Health and NHS England provides information to parents about psychotropic medicines.
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Content ArticleIf 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.
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Content ArticleIn this webinar Dr Brian McClean, Clinical Psychologist working with Acquired Brain Injury Ireland, spoke about grading behaviour support plans.
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Content Article
Angela – the importance of post-diagnosis support (dememtia)
Claire Cox posted an article in Learning disabilities
In this case study, Angela gives us a first person account of her life, detailing her family history, life with her husband, her interests and her healthcare, including her recent diagnosis of dementia. Nicola, who has supported Angela with her diagnosis, reflects on the importance of telling Angela about the diagnosis and the support needed moving forward. -
Content ArticlePeople with a learning disability must be involved in all decisions about their health, and be in control over these choices. Some of the barriers to equal access to healthcare faced by people with a learning disability are: Lack of information that is easy to understand. ‘Diagnostic overshadowing’ - when signs and symptoms are mistakenly attributed to the person’s learning disability. Family carers and others who know the person well are not listened to when they are often able to describe changes in the person in a way that will aid diagnosis. A hospital might assume that the person has 24-hour support, when in fact they only get a few hours’ support a week and will need some extra help to follow the post-discharge treatment plan.
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Content Article
MacIntyres Families Podcast: Jim, a learning disability nurse
Claire Cox posted an article in Learning disabilities
In this episode of the 'MacIntyre Families Podcast' Jim Blair, a leading Learning Disability Nurse, Health Advisor at the British Institute of Learning Disabilities and Associate Professor at Kingston and St George's Universities answers questions submitted by the people Mcintyre support, their families and staff. Jim has over two decades of experience working as a learning disability nurse and is passionate about ensuring everyone with a learning disability is heard and involved in decisions about their own lives. -
Content Article
Oliver's Campaign
Patient Safety Learning posted an article in Learning disabilities
Paula McGowan is a Multi Award-winning Activist who following the preventable death of her teenage son Oliver, has dedicated her life to campaigning for equality of Health and Social Care for Learning Disabled people and Autistic people. She is an Ambassador for several charities and organisations. Paula launched a parliamentary petition asking for all doctors and nurses to receive mandatory training in Learning disability and Autism awareness. She ferociously argued that autism must be included. On 22 October 2018, her petition was debated and gained cross party support. As a direct consequence Government announced that all NHS and Social Care Staff would receive The Oliver McGowan Mandatory Training in Learning Disability and Autism. On the Oliver's Campaign website you can find support, resources and blogs. -
Content ArticleAs parents and carers, there are ways we can support our children to give them the best chance to stay mentally healthy. Encouraging and guiding a child to think about their own mental health and wellbeing are vital skills you can teach them from a young age. Find out how you can help a child to have good mental health, including knowing how to talk to a child about their mental health, and when to spot signs they might be struggling. Plus get self-care tips for you, to help you look after your mental health while caring for others, and find out how to get more support if you, your child or your family need it.
