Jump to content

Search the hub

Showing results for tags 'Learning disorders'.


More search options

  • Search By Tags

    Start to type the tag you want to use, then select from the list.

  • Search By Author

Content Type


Forums

  • All
    • Commissioning, service provision and innovation in health and care
    • Coronavirus (COVID-19)
    • Culture
    • Improving patient safety
    • Investigations, risk management and legal issues
    • Leadership for patient safety
    • Organisations linked to patient safety (UK and beyond)
    • Patient engagement
    • Patient safety in health and care
    • Patient Safety Learning
    • Professionalising patient safety
    • Research, data and insight
    • Miscellaneous

Categories

  • Commissioning, service provision and innovation in health and care
    • Commissioning and funding patient safety
    • Digital health and care service provision
    • Health records and plans
    • Innovation programmes in health and care
  • Coronavirus (COVID-19)
    • Blogs
    • Data, research and statistics
    • Frontline insights during the pandemic
    • Good practice and useful resources
    • Guidance
    • Mental health
    • Exit strategies
    • Patient recovery
  • Culture
    • Bullying and fear
    • Good practice
    • Safety culture programmes
    • Second victim
    • Speak Up Guardians
    • Whistle blowing
  • Improving patient safety
    • Design for safety
    • Disasters averted/near misses
    • Equipment and facilities
    • Human factors (improving human performance in care delivery)
    • Improving systems of care
    • Implementation of improvements
    • Safety stories
    • Stories from the front line
    • Workforce and resources
  • Investigations, risk management and legal issues
    • Investigations and complaints
    • Risk management and legal issues
  • Leadership for patient safety
  • Organisations linked to patient safety (UK and beyond)
  • Patient engagement
  • Patient safety in health and care
  • Patient Safety Learning
  • Professionalising patient safety
  • Research, data and insight
  • Miscellaneous

News

  • News

Find results in...

Find results that contain...


Date Created

  • Start
    End

Last updated

  • Start
    End

Filter by number of...

Joined

  • Start

    End


Group


First name


Last name


Country


About me


Organisation


Role

Found 18 results
  1. News Article
    NHS England and NHS Improvement have ordered urgent reviews into the deaths of people with a learning disability and autism during the pandemic, HSJ has learned. In May, the regulators said the COVID-19 death rates among this population were broadly in line with the rest of the population. But in early June, the Care Quality Commission published data which suggested death rates of people with learning disabilities and/or autism had doubled during the pandemic. In an announcement posted on a social media group for Royal College of Nursing members last week, NHSE/I said they were “urgently seeking clinical reviewers with experience in learning disability”. The message to the private Facebook group, seen by HSJ, added: “The effects of coronavirus are having a far-reaching impact on all our lives. As we learn more about the virus, we are taking steps to make changes to safeguard our well-being. “For people with a learning disability, the number of deaths has doubled during the covid pandemic. (compared to data on the number of deaths recorded during the same period last year). As a result, we have a large number of deaths of people with a learning disability who have died during the pandemic whose deaths we want to review.” Read full story (paywalled) Source: HSJ, 1 July 2020
  2. News Article
    Police in Bristol have launched investigations into the circumstances that led to the death of a teenager with autism and learning disabilities. Avon and Somerset Police told HSJ they are investigating the circumstances behind the death of Oliver McGowan in 2016, at North Bristol Trust. They said: “As part of the enquiry [officers] will interview a number of individuals as they seek to establish the circumstances around Oliver’s death before seeking advice from the Crown Prosecution Service.” Oliver died in 2016 at Bristol’s Southmead Hospital after being admitted following a seizure. He had mild autism, epilepsy and learning difficulties. During previous hospital spells he experienced very bad reactions to antipsychotic medications, prompting warnings in his medical records that he had an intolerance to these drugs. Despite this Oliver was given anti-psychotic medication by doctors at Southmead against his own and his parents’ wishes. This led him to suffer a severe brain swelling which led to his death. His death has since prompted a national training programme for NHS staff on the care of people with autism and learning disabilities. Read full story (paywalled) Source: HSJ, 1 July 2020
  3. Content Article
    The outpatient appointment Attending an outpatient appointment, in my experience, is daunting at the best of times. First, there is the appointment date. Often you have had to wait an exceptionally long time for this appointment (providing the referral letter hasn’t been lost). The date and time are chosen by the Trust. There are some Trusts and specialities that will allow you to choose a time and place, but more often than not you are not able to choose and changing the date and time can prove tricky. There are many reasons for a patient not to turn up for an appointment. These reasons and how to mitigate them are looked at by Trusts. The 'Did not attend' (DNA) rate is looked at by Trusts. DNAs have an enormous impact on the healthcare system in terms of increasing both costs and waiting times. Trusts often want to reduce these to: reduce costs improve clinic or service efficiency enable more effective booking of slots reduce mismatch between demand and capacity increase productivity. Then there is getting there. Getting time off work or college, making childcare arrangements, getting transport… finding parking! Before patients even get to the appointment, they have often been up a while planning this trip. Imagine what this must be like for a patient with learning disabilities. This poses even more planning. What medication might we meed to take with us? Are there changing facilities for adults? Can we get access? Is there space to wait? Will anyone understand me? How long will we be there for? Do they have all my information? Services need to be designed with patients' needs at the forefront: the ability to change appointment dates, the location in where the appointment is held, parking facilities, length of appointment, type of appointment, is a virtual appointment or telephone appointment more appropriate? If you have a learning disability, you may have a family member or carer with you. If you have transitioned out of children’s services you will be seeing someone new, in a new environment. You may not have had the time to discuss the fine nuances to your care that is really important to you. You have now left the comfort bubble of paediatrics where you and your family had built up trust with the previous consultant and care team, and you are now having to build up new relationships. What is in place for you to feel comfortable? Has anyone asked what would help? The consultation Reasonable adjustments such as a double-length consultation is a great way of ensuring people with learning disabilities have enough time to process information and are given time to answer questions. Extra time is only one of many reasonable adjustments that can be made. An example... I would like to reflect on a recent time when I cared for a patient with autism and I didn’t have all the information to enable me to plan care for them at this particular time. This patient had spinal surgery and spent a very brief period on the intensive care unit. As part of my role as a critical care outreach nurse, I see patients who have been in the intensive care unit to check that they are doing well, that ongoing plans of care are in place and that they understand what has happened to them. I read that this patient had autism, but I had no other information. I was unaware of how the autism affected her, if she needed a carer, what she likes, dislikes, how to approach conversations or anything that was important to her. There is a health passport that can be used to aid exactly this information, this is filled out by the patient with their family or carer. Unfortunately, I could not locate the passport. I read the medical notes and went in armed with my usual questions and proforma that we use for all patients. Usual visits like this last from around 10 minutes (for a quick check) to an hour if they are a complex long stay. With the operation that this patient had, I was expecting to be with the patient for around 20 minutes. After introducing myself to the patient, it was clear that the proforma I was going to use wasn’t going to work. Tick boxes and quick fire questions were not the right way of going about this consultation. This patient was scared. More scared than a patient without autism. Their usual routine was gone, they were unable to ask as many questions as they normally would as the nurses and doctors were busy, their surroundings were different, the food was different, new medications, new faces everyday – there was no consistency. The ward round had just happened, the patient had a good plan in place and was due to go home the following day. Normally, this would mean that my visit would be a quick one as the clinical needs of the patient are less complex. This visit took me 90 minutes. Not only did I not have the care passport to hand, due to the coronavirus pandemic I had a face mask on. I felt completely ill-equipped for this consultation. I knew I was missing vital pieces of information which would help me communicate with this patent more effectively. So much of our communication is from facial expressions. A smile for reassurance makes a huge difference. I now have yet another barrier to overcome to communicate with my patient in a way that they can understand and feel comfortable. This particular patient asked many questions. This I had not factored into my day. I have a list of 12 patients to see, in between answering calls from staff on wards who have unwell patients for me to review. It’s too late to abandon the consultation or leave it for a less busy time. I’m at the patient’s bedside and I’m already committed to giving this patient my full attention. After we spent around 20 minutes discussing why I had to wear a mask, what the mask was made of, how many I had to wear in a day, why patients were not wearing masks, we then got onto the subject of food. Where the food is made, how does it get here, who heats it up? Then it came to the other patients in the bay. She knew all of them by name and proceeded to tell me the goings on that happened during the night. I’m clearly not going to get my proforma completed here. This is because my proforma is not important to my patient. "What matters to you?" During my Darzi Fellowship I had the opportunity to visit the Royal Free. Here I met an amazing physiotherapist called Karen Turner. She introduced me to asking the question ‘What matters to you?’ Simple – but so very effective and empowering for your patient to be asked this. The food, my mask and the people around her were of greatest importance to my patient at this time – not what she thought of her stay or if she wanted me to go through the intensive care unit steps booklet; these were important for me to know, these were questions that gave the Trust insight of what is important to them. It dawned on me that we had designed our follow-up service to suit us and not involved families or the patient. I feel a quality improvement project coming on! Reasonable adjustments take planning, as clinicians we need to know about them. We need to factor them into our work. The NHS has just enough capacity to run if all patients followed the NHS pathways, if all patients grasped everything and followed all instructions, took their medications on time, turned up for their appointments – there wouldn’t be a problem. It takes me back to the clip from the BBC programme ‘Yes Minister’ of the fully functioning hospital with no patients and that services run very well without patients! Currently systems within the NHS are designed around the building, the staff within it and the targets that are set out by NHS England and the Department of Health and Social Care. If we started designing care and access around patient need and ask them what would make it easier – what helps? what matters to you? – what would healthcare look like? During this time of uncertainty and change, I see exciting opportunities to take stock and see what’s working and what isn’t – and lets start involving patients at every stage. Call to action What are you doing to ensure reasonable adjustments are made for people with learning disabilities where you work? What more needs to be done to ensure that people with learning disabilities feel part of the conversation and play an active role in their care? Are you a patient, carer or relative? What has your experience been like? Have you any experiences in designing services with patients? Perhaps you are a patient and have been a part of the process. Add your comments below, start a conversation in the Community area or contact us. We'd love to hear your thoughts and experiences.
  4. News Article
    Unlawful 'do not resuscitate' orders are being placed on patients with a learning disability during the coronavirus pandemic without families being consulted. National charities have successfully challenged more than a dozen unlawful do not resuscitate orders (DNRs) that were put in place because of the patient’s disability rather than due to any serious underlying health risk. Turning Point said it had learned of 19 inappropriate DNRs from families while Learning Disability England said almost one-fifth of its members had reported DNRs placed in people’s medical records without consultation during March and April. In one example, a man in his fifties with sight loss was admitted to hospital after a choking episode and was incorrectly diagnosed with coronavirus. He was discharged the next day with a DNR form giving the reason as his “blindness and severe learning disabilities”. Marie-Anne Peters, whose brother Alistair has epilepsy but no other health conditions, overturned a DNR on her brother which included instructions for him not to be taken to hospital. Both charities fear other people with learning disabilities who are vulnerable could be wrongly denied life-saving treatment. They have now launched a new checklist for families and care workers to challenge illegal DNRs. Read full story Source: The Independent, 13 June 2020
  5. News Article
    Young people with learning disabilities are being driven to self-harm after being prevented from seeing their families during the coronavirus lockdown in breach of their human rights, a new report finds. The Joint Committee on Human Rights warned that the situation for children and young people in mental health hospitals had reached the point of “severe crisis” during the pandemic due to unlawful blanket bans on visits, the suspension of routine inspections and the increased use of restraint and solitary confinement. The report concluded that while young inpatients' human rights were already being breached before the pandemic, the coronavirus lockdown has put them at greater risk – and called on the NHS to instruct mental health hospitals to resume visits. It highlighted cases in which young people had been driven to self-harm, including Eddie, a young man with a learning disability whose mother, Adele Green, had not been able to visit him since 14 March. “When the lockdown came, it was quite quick in the sense that the hospital placed a blanket ban on anybody going in and anybody going out,” said Ms Green. “Within a week, with the fear and anxiety, he tried to take his own life, which really blew us away. We were mortified.” The Committee is urging NHS England to write to all hospitals, including private ones, stating they must allow visits unless there is a specific reason relating to an individual case why it would not be safe, and said the Care Quality Commission (CQC) should be responsible for ensuring national guidance is followed. Read full story Source: The Independent, 12 June 2020
  6. News Article
    The Care Quality Commission (CQC) have looked at how the number of people who have died during the coronavirus outbreak this year compares to the number of people who died at the same time last year. They looked at information about services that support people with a learning disability or autism in the 5 weeks between 10 April to 15 May in 2019 and 2020. These services can support around 30,000 people. They found that in that 5 weeks this year, 386 people with a learning disability, who may also be autistic, died. Data for the same 5 weeks last year found that 165 people with a learning disability, who may also be autistic, died. This information shows that well over twice as many people in these services died this year compared to last year. This is a 134% increase in the number of death notifications this year. This new data should be considered when decisions are being made about the prioritisation of testing at a national and local level. Kate Terroni, Chief Inspector of Adult Social Care at the Care Quality Commission (CQC) said: "Every death in today's figures represents an individual tragedy for those who have lost a loved one." "While we know this data has its limitations what it does show is a significant increase in deaths of people with a learning disability as a result of COVID-19. We already know that people with a learning disability are at an increased risk of respiratory illnesses, meaning that access to testing could be key to reducing infection and saving lives." "These figures also show that the impact on this group of people is being felt at a younger age range than in the wider population – something that should be considered in decisions on testing of people of working age with a learning disability." Read full story Source: Care Quality Commission, 2 June 2020
  7. News Article
    NHS England has said disabled and vulnerable patients must not be denied personalised care during the coronavirus pandemic and repeated its warning that blanket do not resuscitate orders should not be happening. In a joint statement with disabled rights campaigner and member of the House of Lords, Baroness Jane Campbell, NHS England said the COVID-19 virus and its impact on the NHS did not change the position for vulnerable patients that decisions must be made on an individualised basis. It said: “This means people making active and informed judgements about their own care and treatment, at all stages of their life, and recognises people’s autonomy, as well as their preferences, aspirations, needs and abilities. This also means ensuring reasonable adjustments are supported where necessary and reinforces that the blanket application of do not attempt resuscitation orders is totally unacceptable and must not happen.” Read full story Source: The Independent, 26 May 2020
  8. News Article
    More than 460 people with a learning disability have died from coronavirus in just eight weeks since the start of the outbreak in England. New data shows between the 16 March and 10 May 1,029 people with a learning disability died in England, with 45 per cent, 467, linked to coronavirus.Overall the number of deaths during the eight weeks is 550 more than would be expected when compared to the same period last year. The charity Mencap warned people with a learning disability were “being forgotten in this crisis” and called for action to tackle what it said could be “potentially discriminatory practice.” It highlighted the percentage of Covid-19 related deaths among learning disabled people was higher than those in care homes, where the proportion of Covid-19 deaths was 31 per cent for the same period. The data has been published after an outcry over the lack of transparency about the impact of Covid-19 on mental health patients and people with a learning disability or autism. Read full story Source: The Independent, 19 May 2020
  9. News Article
    The NHS will this week begin to publish the numbers of people who are dying from coronavirus in mental health and learning disability units, the government has announced. England's national medical director Stephen Powis told the Downing Street daily press briefing that the figures would be published on an "ongoing basis" after calls to paint a clearer picture of the problem. It comes as figures from the Care Quality Commission showed a sharp increase in deaths among mental health patients compared to last year. Asked by The Independent whether the numbers could be made public, he replied: "Yes, I can commit that we will publish that data. "We've been looking at how we can do that; we publish deaths daily, we're looking at how we can report on those groups and I can commit that from next week we'll be publishing data on learning disabilities, autism, and mental health patients who have died in acute hospitals and we will do that on an ongoing basis." Read full story Source: The Independent, 9 May 2020
  10. News Article
    Deaths of those with learning disabilities and autism fromCOVID-19 are to be analysed by Public Health England (PHE), HSJ can reveal. Several senior sources have confirmed PHE has put together a group, which includes independent experts, to analyse mortality data. They had previously not been included in the government’s inquiry into the over-representation of some groups among covid fatalities. The news comes amid mounting concerns from major charities over the of lack transparency in data collected centrally on the deaths of people from these these groups during the pandemic. In a letter yesterday , seen by HSJ, Labour’s shadow secretary for social care Liz Kendall, urged Department of Health and Social Care minister Helen Whately to publish data on deaths reported to the Learning Disabilities Mortality Review Programme (LeDer). Earlier this week NHS England and NHS Improvement told HSJ the weekly data it is receiving from the national learning disability morality review programme (LeDer) on suspected and confirmed deaths of those with learning disabilities and autism from COVID-19 would not be published until next year. In her letter Ms Liz Kendall said the Government should “immediately” release the deaths notifications being provided by LeDer along with a “retrospective” analysis from the beginning of the pandemic. Read full story Source: HSJ, 7 May 2020
  11. News Article
    New guidelines for assessing people with coronavirus who go to hospital were amended after an outcry from parents of children with special needs. The emergency guidelines published by the National Institute for Health and Care Excellence (NICE) are designed to help determine how much treatment a patient will receive. Those deemed "completely dependent for personal care for whatever reason" will be offered end-of-life care rather than restorative treatment. This now excludes people with learning difficulties or cerebral palsy. In a statement NICE said the system was "not perfect" but was designed to support hospital medics "during this very difficult period of intense pressure". "We welcome the recent clarification that the Clinical Frailty Score should not be used in certain groups," it said. The updated guidelines now state that it "may not perform as well in people with stable long-term disability" and suggests that it is not used in those cases. Read full story Source: BBC News, 26 March 2020
  12. Content Article
    The investigation identified: There is an opportunity to clarify the consent requirements for diagnostic imaging facilitated by a general anaesthetic. There is variation in the information given to patients regarding anaesthesia at the point of referral for an MRI scan under general anaesthetic. The observations and examinations to be routinely performed in pre-anaesthetic assessment are not defined nationally. The investigation found variation in the hospitals it visited. Children coming into hospital for an MRI scan who had been assessed as fit for anaesthetic were perceived as “well” by ward staff. Children with autism, learning disabilities and/or learning difficulties often find clinical environments distressing, which may be reflected in their physiological observations. This may result in diagnostic overshadowing, where problems such as autism (or a medical condition) are attributed as the cause of other new problems, rather than considering other underlying causes, thereby leaving other co-existing conditions potentially undiagnosed. Children with autism, learning disabilities or learning difficulties may benefit from reasonable adjustments being made when attending hospital. Electronic flagging systems can help staff identify patients who may benefit from reasonable adjustments. Hospital passports provide valuable information to assist with implementation of these adjustments. The model of care for learning disability nursing teams is not standardised nationally. There is an opportunity to enhance the existing published guidance available to assist clinicians involved in general anaesthetics to prepare for adverse events in the MRI scanning environment. Professional networks for anaesthetists provide the opportunity for shared learning and consensus regarding best practice. It is challenging to comply fully with the existing published standards for anaesthetic equipment used in MRI environments.
  13. News Article
    Sir Norman Lamb, chair of South London and Maudsley Foundation Trust and a former Liberal Democrat MP, has suggested the government would lose a legal challenge over its national programme for patients with learning disabilities and said the national Transforming Care programme was at the “very least a partial failure”. “I regard this as a human rights issue. We’re locking people up when we don’t need to lock them up. We’re subjecting them to force, when we shouldn’t do so, and this is how I think we need to frame it. If the government were challenged in court on this, I think there’s a very good chance, as an ex-lawyer, that they would lose.” Transforming Care was launched in 2011 following the Winterborne View scandal and aimed to discharge patients with learning disabilities and autism out of institutional inpatient units into the community. However, the most recent figures, from NHS Digital, show there were still more than 2,000 patients within inpatient units, ahead of the national programme’s expiration this month. Kevin Cleary, deputy chief inspector for hospitals and lead for learning disability and mental health services for the CQC, said: “We have allowed our patients to be placed within places like Whorlton Hall. I think the NHS provides very few services of this type, it has withdrawn from providing these services, and has become comfortable with providing that service, within the independent sector, several hundred miles away and that’s not right… absolutely not right." “We cannot say we are providing patient centred care or say we are placing the patient at the heart of everything we do and have that response from the system. We are all responsible for that.” Read full story (paywalled) Source: HSJ, 10 March 2020
  14. News Article
    The Equality and Human Rights Commission have launched a legal challenge against the Secretary of State for Health and Social Care over the repeated failure to move people with learning disabilities and autism into appropriate accommodation. Their concerns are about the rights of more than 2,000 people with learning disabilities and autism being detained in secure hospitals, often far away from home and for many years. These concerns increased significantly following the BBC’s exposure of the shocking violation of patients’ human rights at Whorlton Hall, where patients suffered horrific physical and psychological abuse. The Equality and Human Rights Commission have sent a pre-action letter to the Secretary of State for Health and Social Care, arguing that the Department of Health and Social Care (DHSC) has breached the European Convention of Human Rights (ECHR) for failing to meet the targets set in the Transforming Care program and Building the Right Support program. These targets included moving patients from inappropriate inpatient care to community-based settings, and reducing the reliance on inpatient care for people with learning disabilities and autism. Rebecca Hilsenrath, Chief Executive of the Equality and Human Rights Commission, said: 'We cannot afford to miss more deadlines. We cannot afford any more Winterbourne Views or Whorlton Halls. We cannot afford to risk further abuse being inflicted on even a single more person at the distressing and horrific levels we have seen. We need the DHSC to act now." "These are people who deserve our support and compassion, not abuse and brutality. Inhumane and degrading treatment in place of adequate healthcare cannot be the hallmark of our society. One scandal should have been one too many." Read full story Souce: Equality and Human Rights Commission, 12 February 2020
  15. News Article
    The Care Quality Commission (CQC) missed multiple opportunities to identify abuse of patients at a privately run hospital and did not act on the concerns of its own members, an independent review has found. Bosses at the CQC have been criticised in an independent report by David Noble into why the regulator buried a critical report into Whorlton Hall hospital, in County Durham, in 2015. His report published today said the CQC was wrong not to make public concerns from one of its inspection teams in 2015. “The decision not to publish was wrong,” his report said, adding: “This was a missed opportunity to record a poorly performing independent mental health institution which CQC as the regulator, with the information available to it, should have identified at that time.” Read full story Source: The Independent, 22 January 2020
  16. News Article
    NHS England asked an “inadequate” hospital for people with learning disabilities and autism to admit a patient, despite the service having a “voluntary” ban on admissions in place — and shortly before inspectors decided to impose a legal restriction. The provider said it was an “exceptional case”, where the individual “had several failed placements”, and had stayed at the hospital — Jeesal Cawston Park in Norfolk — “in the past”. However, it appears to highlight the shortage of good quality accommodation and placements available and pressure on commissioners to make use of “inadequate” facilities. Read full story (paywalled) Source: HSJ, 21 January 2020
  17. News Article
    A backlog of thousands of deaths of people with learning disabilities awaiting official review has grown further, despite NHS England committing in spring last year to “address” the buildup. Information obtained by HSJ shows the number of incomplete reviews increased slightly between May and November last year – from 3,699 to 3,802. The “national learning disabilities mortality review” programme – known as LeDeR – was launched in 2016 and is meant to review all deaths of people aged four and over. Mencap head of policy and public affairs, Dan Scorer, said: “It is unacceptable that thousands of deaths have still not been reviewed despite NHS England announcing further funding to make sure all reviews were carried out quickly and thoroughly. These latest figures show that little progress has been made; the programme is still failing to address outstanding reviews as well as keep pace with incoming referrals." “Behind these figures are families whose loved ones’ deaths may have been potentially avoidable and they have a right to know that health and care services are learning and acting on LeDeR reviews’ recommendations.” Read full story (paywalled) Source: HSJ, 8 January 2020
  18. Community Post
    Hi All, I was looking through a recent coroners case ( https://www.judiciary.uk/wp-content/uploads/2020/01/Julie-Taylor-2019-0454.pdf ) Where a learning disability patient deteriorated while in an acute care setting. One of the recommendations was that the Trust should have used a 'reasonable adjustment care plan'. I haven't heard or seen one of these before. So I had a quick look on the internet and found this. http://www.bristol.ac.uk/sps/media/cipold_presentations/workshop3presentation1-linda-swann.pdf Does anyone else use a care plan that they wouldn't mind sharing? Thanks - Claire
×