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Found 30 results
  1. News Article
    People with learning disabilities are dying of coronavirus at more than six times the rate of the general population, according to “deeply troubling” figures that have prompted a government review. A report from Public Health England (PHE) found that 451 in every 100,000 people registered as having learning disabilities died after contracting Covid-19 in the first wave of the pandemic, when the figures were adjusted for age and sex. Because not all Covid deaths among people with learning disabilities are registered as such, the true figure is likely to be 692 in every 100,000, or 6.3 times the UK average, the report estimated. Campaigners said the figures showed the government had failed to protect the most vulnerable. The report found that Covid deaths among those with learning disabilities were also more widely spread across age groups, with far greater mortality rates among younger adults. Those aged 18-34 were 30 times more likely to die with the virus than their counterparts in the general population. The higher death rate is likely to reflect the greater prevalence of health problems such as diabetes and obesity among those with learning disabilities, the report said. It also noted that some learning disabilities, such as Down’s syndrome, can make people more vulnerable to respiratory infections. People with learning disabilities are also likely to have difficulty recognising symptoms and following advice on testing, social distancing and infection prevention, the report said. It may also be harder for those caring for them to recognise symptoms if these cannot be communicated, it added. Read full story Source: The Guardian, 12 November 2020
  2. News Article
    In late July 2019, Sara Ryan tweeted asking families with autistic or learning disabled children to share their experience of “sparkling” actions by health and social care professionals. She was writing a book about how professionals could make a difference in the lives of children and their families. "These tweets generated a visceral feeling in me, in part because of the simplicity of the actions captured. Why would you not ring someone after a particularly difficult appointment to check on them? Isn’t remembering what children like and engaging with their interests an obvious way to generate good relationships? Telling a parent their child has been a pleasure to support is commonplace, surely?" Sara's own son, Connor, was left to drown in an NHS hospital bath while nearby staff finished an online Tesco order. "Certain people, children and adults, in our society are consistently and routinely positioned outside of 'being human', leading to an erasure of love, care and thought by social and healthcare professionals. They become disposable." What has become clear to Sara is how much the treatment of people and their families remains on a failing loop, despite extensive research, legislative and policy change to make their lives better, and potentially transformative moments like the exposure of the Winterbourne View scandal. At the heart of this loop are loving families and a diverse range of allies, surrounded by a large cast of bystanders who, instead of fresh eyes, have vision clouded by ignorance and sometimes prejudice. "To rehumanise society, we need more people with guts and integrity who are prepared to step up and call out poor practice, and to look afresh at how we could do things so much better with a focus on love and brilliance." Read full story Source: The Guardian, 27 October 2020 Sara Ryan's book: Love, learning disabilities and pockets of brilliance: How practitioners can make a difference to the lives of children, families and adults
  3. News Article
    The Care Quality Commission (CQC) has called for ‘ministerial ownership’ to end the ‘inhumane’ care of patients with learning difficulties and autism in hospital – after finding some cases where people had been held in long-term segregation for more than 10 years. Following its second review into the uses of restraint and segregation on people with a learning difficulty, autism and mental health problems, the CQC has warned it “cannot be confident that their human rights are upheld, let alone be confident that they are supported to live fulfilling lives”. The review was ordered by health and social care secretary Matt Hancock in late 2018 in response to mounting concerns about the quality of care in these areas. According to the report, published today, inspectors found examples people being in long-term segregation for at least 13 years, and in hospital for up to 25 years. It also found evidence showing the proportion of children from a black or black British background subjected to prolonged seclusion on child and adolescent mental health wards was almost four times that of other ethnicities. Looking at care received in hospital the CQC found many care plans were “generic” and “meaningless” and patients did not have access to any therapeutic care. Reviewers also found people’s physical healthcare needs were overlooked. One women was left in pain for several months due to her provider failing to get medical treatment. The regulator also reviewed the use of restrictive practices within community settings. While it found higher quality care, and the use of restrictive practices was less common, it said there was no national reporting system for this sector. Read full story (paywalled) Source: HSJ, 22 October 2020
  4. Content Article
    The virtual service was implemented initially as a work-based project by the Hospital Liaison Nurse (HLN) over an 18-month period between 2017 and 2019. It was designed to keep the patient very much in the centre of their care with regular patient/carer remote contact, ongoing assessment, monitoring, clinical decision making and person-centred care planning. In a consultative capacity, the HLN was enabled to work remotely and maintain ongoing close patient/carer contact, effective case management and improved communication across multiagency professionals. This included ongoing virtual collaborative working across care providers and professionals working within primary, secondary and tertiary health and social care services. Overtime, by embedding person centred care and coordination into clinical practice; it became clear that the approach of the HLN’s role shifted from reactive to proactive care provision. This was likely due to early recognition and earlier response to the subtle signs of deterioration in the patient condition. The initial findings highlight the potential of virtual care coordination, to essentially respond to the ongoing changing health needs of adults diagnosed with an ID and comorbidities and enable timely planning for the individual’s future longer term needs. This shared learning example relates to NICE guidance and quality standards: (QS153) on Multimorbidity (Statement 3 on coordination of care and (NG56) Multi-morbidity: clinical assessment and management. In particular this project takes into account NICE recommendations in relation to equality and diversity considerations and making reasonable adjustments as follows: healthcare professionals should take into account the needs of adults who may find it difficult to fully participate in a review of medicines and other treatments (i.e. those with learning disabilities, cognitive impairment or language barriers.
  5. News Article
    The care model run by independent sector mental health and learning disability hospitals is ‘inherently risky’, a Care Quality Commission (CQC) chief inspector has warned. Speaking at the NHS Providers conference, Ted Baker, chief inspector of hospitals for the Care Quality Commission, unveiled the regulator’s plans to change how it inspects health and care services. When asked by HSJ how its new “streamlined” approach would be applied to inpatient units run by the independent sector for people with mental health and learning disability, Professor Baker said: ”One of the things we’ve been doing during the pandemic, and will continue in our transitional approach, is target risk. And one of the risks we have been targeting is exactly this, patients with learning disability and/or autism in some of these small units that have got closed cultures." “I think we do recognise that model of care is an inherently risky model of care and so we have been inspecting many of those under this risk driven model and taking action against many of them. But there is ongoing concern about that model of care and in a few weeks’ time we will be publishing a report on our assessment of that model of care and the importance of it being changed for the benefit of the people being looked after. The model of care needs to be improved but we need to make sure we are tackling the risk.” The chief’s comments come ahead of the regulator’s state of care report, which is due to be published next week. In its report published last year the CQC highlighted a concern regarding the quality and safety of independent learning disability and autism units. In particular it warned these were at a higher risk of developing closed cultures. Read full story (paywalled) Source: HSJ, 7 October 2020)
  6. Event
    until
    Supporting individuals with learning disabilities to access the care for their needs comes with a number of challenges. But could we finally put the people using services at the heart of planning and delivery with the use of technology? Join this free online event from The King's Fund to discuss concrete examples of innovative digital solutions and to consider how technology can help with personalising care for people with learning disabilities. You will hear about: practical ways of adjusting a digital tool to the individual using it, to make them feel more comfortable in their path to more independence the importance of creative and empathetic attitudes in problem-solving in order to build tailored solutions evidence for the benefits of using digital tools for people with learning disabilities and some cautionary tales, too. ways to involve the person, their family and carers at an early stage and throughout the decision-making process the role of technology in promoting better health outcomes for people from disadvantaged groups and enhancing social inclusion. Registration
  7. Content Article
  8. News Article
  9. News Article
    NHS England and Improvement have launched an independent review into the care and death of a man with learning disabilities, following concerns raised by HSJ. The regulator has appointed Beverley Dawkins to carry out an independent review of the case of Clive Treacy, as part of the learning disability mortality review programme. Clive, who died in 2017, had previously been denied a review under LeDer and, according to emails seen by HSJ, his death was never officially recorded by the programme, which is meant to record all deaths of people with a learning disability. NHS England and Improvement overturned the decision earlier this year after HSJ presented evidence of a series of failures in his care between 2012 and 2017. Today, it was confirmed to us that Ms Dawkins has been commissioned to carry out the review, and that it would review his care throughout his life, as well as his death. Read full story Source: HSJ, 23 July 2020
  10. News Article
    The latest annual report into the deaths of people with learning disabilities has criticised the “insufficient” national response to past recommendations and called for “urgent” policy changes. The national learning disabilities mortality review programme has criticised the response from national health bodies to its previous recommendations. To date, just over 7,000 deaths have been notified to the programme and reviews have been completed for just 45%. There have been four annual reports for programme to date, and in the latest published today, the authors warned: “The response to these recommendations has been insufficient and we have not seen the sea change required to reassure [families] that early deaths are being prevented." “It is long over-due that we should now have concerted national-level policy change in response to the issues raised in this report and previous others. A commitment to take forward the recommendations in a meaningful and determined way is urgently required.” The latest report also warns that black, Asian and ethnic minority children with learning disabilities die “disproportionately” younger compared to other ethnicities. It also found system problems and gaps in service provision were more likely to contribute to deaths in BAME people with learning disabilities. Read full story Source: HSJ, 16 July 2020
  11. News Article
    A low secure unit for people with learning disabilities and autism has been put into special measures after inspectors found the use of restraint and segregation affected the quality of life for some patients. Cedar House, in Barham near Canterbury, houses up to 39 people and had been rated “good” by the Care Quality Commission early last year. But at an inspection in February this year inspectors rated the service – run by the Huntercombe Group — “inadequate,” saying it was not able to meet the needs of many of the patients at the unit. It was issued with three requirement notices. One patient had been subject to prolonged restraint 65 times between September and February. Each time he was restrained by between two and 19 staff, for an average of nearly two hours. On one occasion, this restraint lasted for eight hours. But the inspectors were told that in the six months before the inspection 29 staff had been injured during these restraints, and the hospital had been trying to refer the patients to a more secure environment. “The impact of this inappropriately placed patient was considerable for both the patients and the hospital,” the report said. “The staff who were regularly involved in restraining the patient were tired and concerned about the welfare and dignity of the patient.” Read full story (paywalled) Source: HSJ, 21 July 2020
  12. News Article
    Figures released by the Office for National Statistics show that about two-thirds of fatalities from this disease during its peak from start of March to mid-May were people with disabilities. That is more than 22,000 deaths. Then dig down into the data. It indicates women under 65 with disabilities are more than 11 times more likely to die than fellow citizens, while for men the rate is more than six times higher. Even for older people the number of deaths was three times as high for women and twice as high for men. There are some explanations for such alarming figures, although they tend to reveal other profound concerns. Yet the report showed even when issues such as economic status and deprivation are taken into account, people with disabilities died at about twice the rate of their peers. So where was the fury over this obvious and deep inequality, even in death? Where was the fierce outcry over persistent failures that left many citizens and their families at risk, lacking even the most basic advice, support or protection from the state? Chris Hatton, the dedicated professor of public health and disability at Lancaster University, delved into all available data. He found people with autism and learning disabilities were in reality at least four times more likely to die at the peak of pandemic than other citizens. They also died at far younger ages. “Information released about deaths of autistic people and people with learning disabilities has been minimal, grudging and seems deliberately designed to be inaccessible,” he says. This adds up to one more shameful episode in the scandal of how Britain treats such citizens. Read full story Source: iNews, 5 July 2020
  13. 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
  14. 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
  15. 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.
  16. 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
  17. 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
  18. 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
  19. 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
  20. 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
  21. 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
  22. 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
  23. 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
  24. 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
  25. 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
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