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Found 273 results
  1. Content Article
    NHS England has set a target that cervical cancer will be eliminated in England by 2040. Although progress has been made in detecting and treating cervical cancer, there are still many women who are reluctant to go for cervical screening, or who face barriers to accessing screening. These barriers include perceived discrimination, lack of understanding the risk of cervical cancer and unmet access needs. This contributes to persistent health inequalities amongst particular groups. Patient Safety Learning has pulled together nine useful resources shared on the hub about how to improve access and overcome barriers to cervical screening. 1. Cervical screening, my way: Women's attitudes and solutions to improve uptake of cervical screening This research by Healthwatch explored why some women are hesitant to go for cervical screening. Based on the findings of a survey of more than 2,400 women who were hesitant about screening, it makes recommendations to policymakers on how to improve uptake, including: improvements to the way data about the disability and ethnicity of people attending screening. producing an NHS-branded trauma card for affected women to bring to appointments. ensuring staff are effectively trained on accessibility and adjustments to care. looking at the possibility of home-based self-screening. 2. Exploring the inequalities of women with learning disabilities deciding to attend and then accessing cervical and breast cancer screening, using the Social Ecological Model Women with learning disabilities are less likely to access cervical and breast cancer screening when compared to the general population. In this study, the Social Ecological Model (SEM) was used to examine the inequalities faced by women with learning disabilities in accessing cervical and breast cancer screening in England. The study highlights key barriers to access for women with learning disabilities. 3. “We’re not taken seriously”: Describing the experiences of perceived discrimination in medical settings for Black women Black women continue to experience disparities in cervical cancer despite targeted efforts. One potential factor affecting screening and prevention is discrimination in medical settings. This US study in the Journal of Racial and Ethnic Health Disparities describes experiences of perceived discrimination in medical settings for Black women and explores the impact of this on cervical cancer screening and prevention. The authors suggest that future interventions should address the poor quality of medical encounters that Black women experience. 4. Top tips for healthcare professionals: Cervical screenings This article by the Royal College of Obstetricians & Gynaecologists and the My Body Back Project offers tips for healthcare professionals to make cervical cancer screening attendees feel as comfortable as possible during their appointments. Cervical screening can be very daunting for some women, and for those who have experienced sexual violence it can be triggering and cause emotional distress. The article provides tips on communication, making the environment calm and safe, sharing control and building trust with women. 5. The Eve Appeal: What adjustments can you ask for at your cervical screening? The Eve Appeal want to raise awareness of what adaptations women and people with a cervix can ask for during their screening to make the appointment more comfortable. 6. How can reframing women’s health improve outcomes? An interview with Dr Marieke Bigg Dr Marieke Bigg is the author of a 2023 book, This won’t hurt: How medicine fails women. In this interview, Marieke discusses how societal ideas about the female body have restricted the healthcare system’s approach to women’s health and describes the impact this has had on health outcomes. She also highlights areas where the health system is reframing its approach by listening to the needs of women and describes how simple changes, such as allowing women to carry out their own cervical screening at home, can make a big difference. 7. Having a smear test. What is it about? This download A4 Easy Read booklet from Jo's Cervical Cancer Trust uses simple language and pictures to talk about smear tests. It explains what a smear test is, has tips for the person having the test and has a list of words they might hear at their appointment. 8. Health Improvement Scotland: Cervical screening standards Published by Healthcare Improvement Scotland in March, the new cervical screening standards include recommendations to ensure women receive accessible letters and information about screening and healthcare professionals are trained to support women to make informed choices. 9. Cervical cancer screening in women with physical disabilities This US study explored how the cervical cancer screening experiences of women with physical disabilities (WWPD) can be improved. Interviews with WWPD indicated that access to self-sampling options would be more comfortable for cervical cancer screening participation. The authors highlight that these findings that can inform the promotion of self-sampling devices for cervical cancer screening. Have your say Are you a healthcare professional who works in women’s health or cancer services? We would love to hear your insights and share resources you have developed. Perhaps you have an experience of cervical screening or cervical cancer that you would like to share? We would love to hear from you! Comment below (register as a hub member for free first) Get in touch with us directly to share your insights
  2. Content Article
    This guidance supports trusts and community providers in enabling frontline staff to fulfil their legal requirements under the Mental Capacity Act (MCA) 2005, specifically when supporting people with a learning disability. A Health Services Safety Investigations Body Report in 2023, on the care of acute hospital inpatients with a learning disability in England, found variation in staff understanding and application of the MCA in the care of people with a learning disability. Leadership within Trusts have been asked to ensure they understand the guidance, take the actions indicated and make these resources available to all frontline staff.
  3. Event
    Recent care scandals show that the system has been failing too many people with learning disabilities and autism for too long and we need a new approach to restraint. This webinar will look at restraint, how it can be avoided - and when it can’t be avoided how it can be done safely and ethically with a human rights approach. Evidence shows that nurses are seeing more behaviours that challenge than ever before, so it's important to have the skills and knowledge to deal with situations when they arise. As well as examining issues around restraint and seclusion, our panel of experienced nurses will give you practical strategies to use restraint effectively and safely for both you and the service user. Register
  4. News Article
    A senior doctor says he is shocked at how many deaths of people with learning disabilities and autism are "potentially preventable by really basic things". Dr Andrew Kelso is a consultant neurologist and the executive medical director at the Suffolk and North East Essex Integrated Care Board (SNEE ICB). The ICB, which commissions all health services, has rolled out the Oliver McGowan Mandatory Training on Learning Disability and Autism, external to its health and social care professionals. "That's the thing that keeps me awake at night," Dr Kelso told the BBC. "How little I knew before I went and how much I knew afterwards, and what a missed opportunity that might have been for me." The mandatory training - for all NHS staff who work with the public - is named after Oliver McGowan, an 18-year-old from Bristol who died in 2016 after he was given an anti-psychotic drug he was allergic to, despite repeated warnings from his parents. His mother Paula had lobbied for mandatory training to potentially "save lives". Dr Kelso, a consultant specialising in epilepsy, said: "I thought I knew quite a lot about learning disability. "But the scales fell off my eyes when I was in the training and realised how much I didn't know - and that's in a career where I see people with learning disability all the time. "How many gaps are there in the knowledge of people that don't spend their entire career with learning disability and may just come across them every now and then?" Read full story Source: BBC News, 25 April 2025 Related reading on the hub: Video: The Oliver McGowan Mandatory Training on Learning Disability and Autism How can GP practices help improve health outcomes for people with learning disabilities? Interview with a Community Learning Disability Nurse Top picks: Breaking down the barriers faced by people with learning disabilities
  5. Event
    until
    Recent care scandals show that the system has been failing too many people with learning disabilities and autism for too long and we need a new approach to restraint. This RCNi event will look at restraint, how it can be avoided - and when it can’t be avoided how it can be done safely and ethically with a human rights approach. Evidence shows that nurses are seeing more behaviours that challenge than ever before, so it's important to have the skills and knowledge to deal with situations when they arise. As well as examining issues around restraint and seclusion, our panel of experienced nurses will give you practical strategies to use restraint effectively and safely for both you and the service user. Register
  6. Content Article
    Richard has a learning disability and has spent time in hospital. His mum shares his story through this video about their journey to find the Right Care in the Right Place.
  7. News Article
    An autistic woman with a learning disability was wrongly locked up in a mental health hospital for 45 years, starting when she was just seven years old, the BBC has learned. The woman, who is believed to be originally from Sierra Leone, and who was given the name Kasibba by the local authority to protect her identity, was also held on her own in long-term segregation for 25 years. Kasibba is non-verbal and had no family to speak up for her. A clinical psychologist told File on 4 Investigates how she had begun a nine-year battle to release her. The Department of Health and Social Care told the BBC it was unacceptable that so many disabled people were still being held in mental health hospitals and said it hoped reforms to the Mental Health Act would prevent inappropriate detention. More than 2,000 autistic people and people with learning disabilities are still detained, external in mental health hospitals in England - including about 200 children. For years, the government has pledged to move many of them into community care, because they do not have any mental illness. But all key targets in England have been missed. In the past few weeks, in its plan for 2025-26, external, NHS England said it aimed to reduce the reliance on mental health inpatient care for people with a learning disability and autistic people, delivering a minimum 10% reduction. However, Dan Scorer, head of policy and public affairs at the charity Mencap, is not impressed. "Hundreds of people are still languishing, detained, who should have been freed and should be supported in the community, because we haven't seen the progress that was promised," he said. Read full story Source: BBC News, 4 March 2025
  8. News Article
    An elderly man with swallowing difficulties died in hospital after he was wrongly fed jelly and choked. Milton Keynes Coroner's Court heard that Edward Cassin, 67 should not have been given jelly as it turns to liquid in the mouth and causes choking with people with dysphagia. Because of his dysphagia he was on a modified diet and required supervision when eating to mitigate the risk of choking. Despite this, there was evidence he was repeatedly fed jelly - highlighted as a food he should not be given - through his stay in hospital. He was not properly supervised and he aspirated. He died four days later in Milton Keynes University Hospital on 28 June 2023 as he was waiting to be discharged to a new care home. The trust said it had "made meaningful changes to policy and practice to prevent similar incidences happening in the future". Assistant Coroner Sean Cummings recorded his medical cause of death as aspiration pneumonia, chronic dysphagia and type 2 diabetes. He concluded his death was contributed to by neglect and if he had been treated for the developing aspiration pneumonia he would likely not have died at the time he did. Caron Heyes, a director at Fieldfisher representing Eddie's family, said: "We were shocked that eight years after Public Health England issued clear guidelines about the dangers of feeding inpatients with dysphagia and learning disability, they are still not recognised in a major hospital." Read full story Source: BBC News, 20 February 2025
  9. Content Article
    In 2022, the Mental Health, Learning Disability and Autism Inpatient Quality Transformation Programme was established to support cultural change and a new bold, reimagined model of care for the future across all NHS-funded mental health, learning disability and autism inpatient settings. The culture of care standards for mental health inpatient care set out in this guidance support all providers to realise the culture of care within inpatient settings everyone wants to experience – people who need this care and their families, and the staff who provide this care. They apply across the life course to all NHS-funded mental health inpatient service types, including those for people with a learning disability and autistic people, as well as specialised mental health inpatient services such as mother and baby units, secure services, and children and young people’s mental health inpatient services.
  10. News Article
    Disjointed, delayed, and substandard care for people with both mental illness and additional needs are highlighted throughout reports sent to integrated care boards on the deaths of 24 people, HSJ has found. A lack of inpatient beds, poor communication, staff shortages, and care fragmentation were common concerns raised with 18 ICBs in relation to 24 deaths linked to mental health care since the boards’ creation in July 2022, HSJ analysis reveals. Of a total of 53 “prevention of future death reports” addressed to ICBs, 24 focused primarily on mental health – the most common theme of the reports. Many of those who died were young, and many had additional needs, such as autism, ADHD or learning disabilities. They often endured long delays because of poorly-connected physical and mental health services. Some were refused multiple referrals because of the complexity of their needs. Twenty-two of the 24 deaths were from suicide or self-harm. Read full story (paywalled) Source: HSJ, 28 January 2025
  11. Content Article
    People from ethnic minority backgrounds who have a learning disability face ‘double discrimination’ when accessing healthcare services. Culturally sensitive psychotropic deprescribing is just one way this can be improved. Health inequalities are pervasive across our healthcare system, affecting different patients in different ways and requiring an increasingly nuanced approach to tackle them. For individuals from an ethnic minority background, health inequalities are well documented. Evidence from the NHS Race and Health Observatory indicates that these individuals often receive poorer healthcare and experience worse health outcomes compared with their white counterparts. People with a learning disability also experience inequitable health outcomes. People from ethnic minority backgrounds who also have a learning disability may face ‘double discrimination’, encountering complex and significant barriers that shape their healthcare experiences. One area that has been of growing concern for this group is the overprescribing of psychotropic medicines. Psychotropic medicines are commonly prescribed to manage various mental health conditions and certain neurological disorders, such as epilepsy. People from ethnic minority backgrounds are at a greater risk of being prescribed psychotropic medicines to manage behaviours that challenge, with audits highlighting that these medicines are not reviewed as frequently as they should be. Overprescribing in this way not only exposes these individuals to unnecessary health risks, but also imposes significant burdens on them and their carers.
  12. Content Article
    Learning Disability Week is the third week of June every year. The event, organised by the charity Mencap, is an opportunity to raise awareness about different learning disabilities and challenge some of the barriers people who have learning disabilities face. According to Mencap, a learning disability is a person's reduced intellectual ability, meaning they can face difficulty with everyday activities. People with a learning disability can sometimes need extra support to learn new skills, understand complicated information or interact with other people. It can be particularly challenging for people with learning disabilities and their families when accessing healthcare services. To mark Learning Disability Week, we are sharing 14 resources, blogs and reports from the hub for patients, their families and healthcare professionals on breaking down these barriers. 1 Exploring the inequalities of women with learning disabilities deciding to attend and then accessing cervical and breast cancer screening, using the Social Ecological Model Women with learning disabilities are less likely to access cervical and breast cancer screening when compared to the general population. In this study, the Social Ecological Model was used to examine the inequalities faced by women with learning disabilities in accessing cervical and breast cancer screening in England. The authors suggest that multiple methods to reduce the inequalities faced by women with learning disabilities are needed, and that these can be achieved through reasonable adjustments. 2 Pharmacists can do more to bridge the safety gaps for people with learning disabilities People with learning disabilities are more likely to be taking multiple medicines, but labels are not designed with them in mind. This article in the Pharmaceutical Journal looks at a project run by a team at Leeds and York Partnership NHS Foundation Trust. The team ran exploratory workshops to listen to how people with learning disabilities engaged with information on medicines at home, at the doctors and at the pharmacy. The project highlighted that it is time to move away from standard labels and look towards more personalised medicine labels, actively promoting ways to support people with learning disabilities in taking their medicines. 3 Exploring deep sedation at home to support people with learning disabilities to access medical investigations with minimal distress In this blog, Mandy Anderton, a Clinical Nurse specialising in learning disability, explains how they are using shared decision making and reasonable adjustments to implement a new care pathway, where patients with a learning disability needing to undergo a medical investigation can receive deep sedation within their own home. Working with patients, carers, relatives, anaesthetists and others, the aim is to improve access to important medical investigations with minimal distress, where other avenues have been exhausted. 4 NHS England: Ask Listen Do – feedback, concerns and complaints 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, and make it easier for people, families and paid carers to give feedback, raise concerns and complain. 5 NHS England: Guidance to support implementation of the Mental Capacity Act in acute trusts for adults with a learning disability This guidance supports trusts and community providers in enabling frontline staff to fulfil their legal requirements under the Mental Capacity Act (MCA) 2005, specifically when supporting people with a learning disability. Leadership within Trusts have been asked to ensure they understand the guidance, take the actions indicated and make these resources available to all frontline staff. 6 Tommy Jessop: Why I investigated hospital care for people like me People 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. 7 How can GP practices help improve health outcomes for people with learning disabilities? In this Patient Safety Learning interview, Mandy Anderton explains some of the barriers people with a learning disability face in accessing safe care and how adjustments can be made within GP practices to improve outcomes. Mandy lists national improvements that she believes would reduce health inequalities in this area. 8 Making reasonable adjustments for patients with a learning disability is G.R.E.A.T. Developed by David Havard, this poster shows a number of ways in which reasonable adjustments can easily be made for patients with a learning disability. 9 HSSIB: Caring for adults with a learning disability in acute hospitals The aim of this investigation and report is to help improve the inpatient care of adults with a known learning disability in acute hospital settings. It focuses on people referred urgently for hospital admission from a community setting, such as a person’s home or residential home. 10 Video: The Oliver McGowan Mandatory Training on Learning Disability and Autism This animation aims to help staff and employers across health and social care understand Oliver's Training and why it is so vitally important. It was co-designed and co-produced with autistic people and people with a learning disability. Oliver McGowan died aged 18 in 2017 after being given antipsychotic medication to which he had a fatal reaction. He was given the medication despite his own and his family's assertions that he could not be given antipsychotics, and the fact that this was recorded in his medical records. The animation tells his story and highlights the increased risks facing people with learning disabilities and autism when accessing healthcare. 11 Palliative Care for People with Learning Disabilities The Palliative Care for People with Learning Disabilities (PCPLD) is a charity created to ensure that patients with learning disabilities receive the coordinated support they need throughout their life. The PCPLD Network brings together service providers, people with a learning disability and carers working for the benefit of individuals with learning disabilities who have palliative care needs. 12 Nobody left behind: Improving the health of people with learning disabilities and reducing inequalities across primary care Mandy Anderton talks in depth about the cross-system programme they launched in Salford to improve the health of people with learning disabilities and reduce inequalities across primary care. Mandy shares their award-winning poster, summarising the programme’s activities and outcomes, and gives her top tips for delivering a successful patient safety improvement project. 13 Reasonable adjustments and designing services for patients and people with learning disabilities Caring for people with learning disabilities in an acute hospital setting can be challenging, especially if that patient has transitioned from children’s services to adult services. The experience in children’s acute care differs to adult acute care; this difference in processes of care can cause great anxiety for the patient and their family and carers. The reasonable adjustments that were perhaps made and sustained in children’s services may now not exist. The purpose of this blog is to demonstrate the importance for services to be designed around patients’ needs with patients, families and carers. If we get this right, the quality of care given will be improved, patient satisfaction increases and, in turn, a reduction in patient harm. 14 Journey home to a rightful life in the community: Richard's story part 2 Richard has a learning disability and has spent time in hospital. His mum shares his story through this video about their journey to find the Right Care in the Right Place.
  13. Content Article
    This briefing paper summarises the main points of the national guidance on Learning from Deaths, published in March 2017, and how it relates to the LeDeR programme. The national guidance provides a framework for NHS Trusts and NHS Foundation Trusts to identify, report, investigate and learn from deaths that occur in their care.
  14. Content Article
    This is a 2013 progress report that follows up on the Parliamentary and Health Service Ombudsman and Local Government Ombudsman’s 2009 ‘Six Lives’ report which investigated the deaths of six people with learning disabilities, first highlighted by Mencap in their 2007 report ‘Death by Indifference’. The report covers: what has happened since the publication of the report in October 2010 in the areas the Department of Health said it would give immediate priority to. These areas include early learning from the Learning Disabilities Public Health Observatory, monitoring progress in the Confidential Inquiry into the premature deaths of people with learning disabilities, supporting improvements in the take-up of annual health checks for people with learning disabilities and promoting good practice. what the regulators – CQC, Monitor and the Equality and Human Rights Commission – have reported at the Ombudsmen’s request on what has happened in this area since 2010. progress and key developments in other areas since the 2010 report, which we believe will be very important in continuing to improve the healthcare of people with learning disabilities. These include new responsibilities for improving the healthcare of people with learning disabilities following changes to the health system since 2010. The report then looks at three other developments that will help to improve the health and wellbeing of people with a learning disability: work on identifying the determinants of good healthcare, addressed in the Health Equalities Framework for People with Learning Disabilities 2013. the development of Personal Health Budgets, including the commitment that everyone receiving Continuing Health Care will be offered a Personal Health Budget by 2014 developments on safeguarding in the Care Bill, crucial for this vulnerable group. The report includes an easy read summary.
  15. Content Article
    An NHS Trust in Yorkshire is leading the way on work to narrow inequalities in waiting lists, including clearing the backlog of people with a learning disability waiting for elective care. Evidence shows that people with a learning disability have poorer health and experience greater and persistent healthcare inequalities including premature mortality. The 2021 review, Learning from lives and deaths – people with a learning disability and autistic people (LeDeR), reported disparities in avoidable medical causes of deaths between those with a learning disability and the general population. LeDeR reports have also highlighted that a third of deaths of people with a learning disability were from treatable medical causes. To help address this gap, senior leadership at CHFT made a commitment to improving the lives of people with a learning disability and have embedded a range of initiatives to ensure equitable access, experience and outcomes for this under-served group. Dedicated sessions on all aspects of living with a learning disability were delivered to the board and an enhanced task and finish group was established to take forward learning disability priorities within the Trust with support from those with lived experience. Adopting a data driven approach, the trust developed and implemented a range of tools to identify those with a learning disability, understand their experiences and monitor the difference being made. This included a flagging system within patient records, a learning disabilities data dashboard and a data model offering comparisons against the general population. A deep dive into patient journeys, from point of referral to treatment, was also undertaken as were audits on the reasonable adjustments made by the trust, cancer data and missed appointments. The trust also looked at information on readmissions, length of stay and mortality for people with a learning disability. This enabled them to identify areas for targeted action which included prioritising people with a learning disability who were waiting for surgery. Part of this involved partnership work with a private special needs dental service to restart theatre sessions and increase capacity to reduce the backlog on waiting lists.
  16. News Article
    Just one year ago, Nicholas Thornton lay in a windowless hospital room, in a bed he could not leave on his own, unable to speak. He had spent 10 years like this, in hospital wards – as well as in unsuitable dementia care homes and psychiatric units – all because he had learning disabilities and autism. Now, 12 months on, he is finally free at the age of 29 – and in a home of his own. His incredible transformation since leaving Rochard Hospital, in Essex, means he is now able to leave his house unassisted and has even regained his speech. “It’s like I have my life back, I have my freedom back... for so long I was just stuck in the hospital. I have my freedom,” he said. But while Nicholas reaps the benefits of his new life, there are more than 2,000 people just like him, stuck in hospitals across the country because there is no suitable care for them outside. Hundreds have been trapped in hospital for more than five years, unable to be discharged into the community as local authorities struggle to come up with funding to meet their needs – and some have become so deeply institutionalised that their needs are now extremely complex. Ministers have introduced a new Mental Health Bill meaning patients with a learning disability and autism would only be sectioned under the Mental Health Act for a maximum of 28 days. But the changes to the act are unlikely to have prevented what happened to Nicholas, who ended up in inappropriate settings primarily because of a breakdown in care packages. Read full story Source: The Independent, 13 November 2024
  17. News Article
    Asenior midwife has said she is “disgusted” at the NHS care her daughter received and that she was forced to step in and tend to other patients herself during recent visits to an A&E department. Donna Ockenden, who has led government-commissioned reviews into patient safety, said Phoebe, her 20-year-old daughter who has epilepsy, was “failed” by A&E staff at one department. She said her daughter, who has learning disabilities, was left in a waiting room by staff for seven hours while still having seizures after she was transferred to hospital in an ambulance. She said: “It was Phoebe’s third attendance in A&E in the last weeks. During the first two [visits] I was with her and I was her advocate. It was still pretty rubbish … but for the third I was in Dubai on holiday and woke up to messages about Phoebe being in A&E. “Despite her learning disabilities and being known to the service she was dropped off in the waiting room on her own. She is 20 but she is really vulnerable, and was left in a chair for seven hours, still having some seizures. “Initially she was left in the waiting area on her own. It’s just unspeakable, it’s absolutely disgusting and disgraceful.” Ockenden, who led inquiries into NHS maternity scandals at Shrewsbury and Nottingham hospital trusts, said her daughter was only “just about kept safe” during her first two A&E visits because she was with her. Read full story (paywalled) Source: The Times, 31 October 2024
  18. Content Article
    In this report, Carer's UK examine the benefits of moving to paid Carer’s Leave, including the positive impact it would have for women and lower paid workers. They also outline the anticipated costs and savings this would result in for HM Treasury.
  19. Content Article
    The Independent Inquiry into Access to Healthcare for People with Learning Disabilities reported in July 2008. Based on a public consultation, a review of research and evidence and the views of witnesses and stakeholders, the Michael Inquiry concluded that there are risks inherent in the care system for people with learning disabilities and that they are largely due to a failure to make ‘reasonable adjustments’ to services, as required under the Disability Discrimination Act. The Inquiry found evidence of a significant level of avoidable suffering due to untreated ill‐health, and a high likelihood that avoidable deaths are occurring. Although the report highlights examples of good practice there are some appalling examples of discrimination, abuse and neglect. This article makes ten essential recommendations for urgent change across the whole health system and the Inquiry team report contains practical illustrations of how to implement them.
  20. Content Article
    Rebecca Bauers, Interim Director for People with a Learning Disability and Autistic People, and Chris Dzikiti, Director for Mental Health, talk about CQC’s new cross-sector policy position statement on restrictive practice, what it means for providers, and what people receiving healthcare services have the right to expect. As well as sharing the new policy, they discuss what forms restrictive practices can take, and explain how the use of blanket restrictions diminishes the therapeutic power of person-centred, trauma-informed care.
  21. Content Article
    Constipation can be a life–threatening issue for people with a learning disability who are at heightened risk from complications if it is left untreated. This campaign has been developed by NHS England to support people with a learning disability, their carers and people who work in primary care to recognise the signs of constipation. Resources have been co–created with input from the Down’s Syndrome Association, Mencap and Pathways Associates to ensure that they are fit for purpose. The resources aim to: Drive awareness of the seriousness of constipation Help people recognise the signs of constipation at an early stage Empower people to take action and ensure that people with a learning disability experiencing constipation get the right health support straight away Raise awareness of the steps which can be taken to prevent constipation.
  22. Content Article
    In her first blog as Interim Director of People with a Learning Disability and Autistic People, Rebecca Bauers talks about the importance of listening to the voices of people with lived experience; about how we have been gathering insight to shape our priorities, and how we intend to use our new powers to assess integrated care systems and local authorities.
  23. Content Article
    This policy sets out a framework describing how the Trust and its staff will respond to and learn from deaths that occur under their care.It will provide guidance for all staff involved in the mortality review process ensuring clarity on roles, responsibilities and expectations. Reviewing mortality can help make improvements to the quality of care received by patients at the Trust by identifying care related issues. This enables the identification of learning themes and provides evidence of a high standard of care. Mortality is a fundamental component of clinical effectiveness, one of the three dimensions of quality described by Lord Darzi in High Quality Care for all (2008). The Trusts aims are to: Have continuous improvement of our Hospital Standardised Mortality Ratios (HSMR) and the Trusts Standardised Hospital-Level Mortality Index (SHMI) Achieve a year-on-year reduction in avoidable mortality  Improve learning from mortality reviews Ensure robust and timely governance processes regarding mortality outcomes and reviews Provide assurance of mortality processes in the Trust.
  24. Content Article
    Rizwana Dudhia shares in the Pharmaceutical Journal how a project she initiated to prevent the prescribing of inappropriate medication improved the quality of life for patients with learning disabilities and autism.
  25. Content Article
    Mandy Anderton is a Clinical Nurse specialising in learning disability and a hub Topic Leader. In this new blog, Mandy explains how they are using shared decision making and reasonable adjustments to implement a new care pathway, where patients with a learning disability needing to undergo a medical investigation can receive deep sedation within their own home.  Working with patients, carers, relatives, anaesthetists and others, the aim is to improve access to important medical investigations with minimal distress, where other avenues have been exhausted.  Health inequalities and barriers to care People with learning disabilities experience higher levels of physical ill health, yet they face serious health inequalities and have lower life expectancy, dying on average 25 years sooner and frequently from avoidable and preventable conditions [1]. An inability to express pain or general feelings of being unwell (or this resulting in behaviour described as challenging) can lead to delays or problems with diagnosis or treatment, identifying needs and providing appropriate care. People with a learning disability might struggle to engage with medical interventions due to lack of understanding or fear, whilst uncertainty amongst medical professionals about capacity and consent can all lead to further delays. People with learning disabilities often struggle to engage with diagnostic tests like having blood taken or having a scan. This can lead to delays in care and treatment and have an impact on health outcomes. Reasonable adjustments Under the Equality Act 2010, there is a legal duty for public bodies to make reasonable adjustments for people with a learning disability. Equality is not necessarily about treating everybody the same. Rather, it is treating a person with a learning disability in such a way that the outcome for that person can be the same. Reasonable adjustments can be put in place, for example prescribing small doses of oral sedation to reduce anxiety or undertaking desensitization and preparation work on an individual basis. But these things do not work for everyone and can take time (which is no use in urgent situations). Clinical holding is also not always appropriate to every situation or individual. Bringing diagnostic tests to the home Salford Care Organisation (part of the Northern Care Alliance) has started to explore the use of deep sedation in the home to support people to have essential investigations, with the additional option of an anaesthetic if needed. Perceived benefits of these changes to practice are earlier diagnoses and treatment of medical conditions. Both of which promote equality and reduce mortality and premature death for people with a learning disability. The general idea is that when blood tests or other diagnostic tests or procedures are required (scans can be tricky for people to engage with also), GPs would be able to refer direct to a dedicated anaesthetic clinic for this support. Mental capacity Healthcare professionals need to work within the Mental Capacity Act (2005) and if the patient’s capacity is in question, a Mental Capacity Assessment is undertaken. If the person is considered to lack capacity, then decisions will be taken in their best interest. This process will include relevant medical professionals, family, and carers. If the person does not have a family member or friend to advocate on their behalf, then an Independent Mental Capacity Act Advocate will be asked to join these discussions. Best interest decision-making Least restrictive options are always considered and often tried first– this might be desensitization work, longer appointment times, giving oral sedation, working up to possible clinical holding or deep sedation or anaesthesia if needed. Legally the person proposing the procedure is always the lead for best interest and capacity but others will provide significant input. It is likely there will be on-going meetings and different best interest decisions are made as different interventions are tried and considered. The best interest decision process will consider the pros, cons of each intervention, always starting with least restrictive option and working upwards if needed. The likely consequence of doing nothing will also be considered against risk of anaesthetic and distress to the person and weighed up against the risk of not treating a possible underlying health issue. Safety considerations and risk assessment Safety is our priority. Fiona Armstrong, Consultant Anaesthetist, developed a policy around the new approach and this contains a lot of the detail around how we manage risk. The policy was approved last year, and we have attached the document at the bottom of this page for anyone interested. Fiona has also shared some of the key safety features below: The patient has to be suitable. They cannot be a predicted high anaesthetic risk. This would include certain medical problems, anticipated difficult to manage airways, high BMI or previous problems with anaesthesia. The home has to be suitable – within 30mins blue light transfer of the hospital. The ambulance team also needs to be able to safety extract the patient from the location that sedation is administered. Anaesthetist and anaesthetic assistance, trained in transfer, attend with all kit to be able to safely administer oxygen, secure IV access, give supportive medications or provide a full anaesthetic should an adverse event occur. The patient’s vital signs are monitored as soon as sedation takes effect and for the journey. Full area for immediate administration of anaesthetic is set up at the hospital. Home visit occurs prior by the ambulance team to ensure suitability and plan number of staff/extraction kit. Patient’s support team are involved in the planning process of how, when and where sedation is administered to minimise distress and improve safety whilst medication takes effect. We are at the very early stages of exploring this as a care pathway and only two people have been through the process so far, both cases have gone smoothly. Many others have managed with oral sedation to make it to the carpark and have the deep sedation administered there and others are currently undergoing planning and the best interest process. Case study - John A gentleman with severe learning disabilities and autism, John has a longstanding fear of needles, medical professionals and environments. Blood tests, an echocardiogram and ultrasound scan were needed to help identify any underlying, and potentially serious, medical cause for his swollen ankles. Opportunities for desensitization had been exhausted and attempts to take blood with the support of regular oral sedation had proved unsuccessful. Working together and within the legislation of the Mental Capacity Act (2005), John’s family, support team and health care professionals from both general health services and the Adult Learning Disability Team came together to form an individualised plan, which would enable John to have deep sedation (with the option of a general anaesthetic if needed) in his own home before being safely transported to hospital for further care and treatment. Feedback I’ve spoken to both of John’s carers (he lives in 24-hour support) and his mother. His mother couldn’t praise the support enough, saying how much re-assurance it had given her knowing that his health concerns had been taken seriously and investigated. She is more reassured for the future and thinks the pathway should be available everywhere. John’s carers also felt it suited his needs well: “Fiona, the anaesthetist, went to his home and basically just worked within John’s usual routine, which was so important as John is also autistic and has very rigid routines that he needs to adhere to. John was totally calm and does not appear to have been adversely affected in any way at all. He went straight back to his usual self, following return from hospital, as if nothing had happened”. Chris Connell, Head of service (supported living), Aspire for Health and Intelligent Care and Support Reflections so far Resources are needed to make this into a recognised referral pathway with dedicated theatre time. At the moment, it happens a little ‘ad-hoc’ and people are fitted in when our anaesthetist can find gaps on theatre lists. Funding is currently being considered. Working collaboratively has been key, with clear coordination and on-going meetings to revisit decision-making where needed and agree fresh plans. The visit to give John deep sedation in his home was very carefully planned beforehand to help ensure it ran in line with his routines and had the very best chance of success. Listening to John’s carers and family were key in gathering information about how best to support him. The service is completely personalised, which works best for people with a learning disability. Sedation can be given in the home, where a person is most comfortable and relaxed and can fit around their usual routines. So far, we have seen people get the medical investigations they needed in a timely manner with little, if any, stress to themselves. I’m not sure how we would have moved forward for John without this process as we had exhausted all other avenues. We need to continue to connect with key stakeholders such as community teams and hospital specialists. To make sure they know the service exists and to consider it for patients who need investigations, where other reasonable adjustments have failed. [1] (Learning Disability Mortality Review Programme, 2020) Share your thoughts Do you or someone you care for have a learning disability? Perhaps you work in healthcare and would like to help reduce the inequalities experiences by people with a learning disability. What do you think about the approach described in the blog? Please share your thoughts by commenting below (register for free first) or contact us at [email protected]. You can also get in touch with Mandy directly at [email protected] to find out more about this work. Related content Nobody left behind: Improving the health of people with learning disabilities and reducing inequalities across primary care How can GP practices help improve health outcomes for people with learning disabilities? Interview with a Community Learning Disability Nurse CS008 V1 Home Sedation and Transfer Service for Patients with Complex Needs requiring Hospital investigations and treatment (002) (1).pdf
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