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Found 91 results
  1. News Article
    New restrictions are being introduced for autism assessments, with some areas now only accepting referrals for patients in crisis, HSJ has learned. Commissioners in North Yorkshire and York have become the latest to introduce new criteria for autism and attention deficit hyperactivity disorder referrals. Getting a diagnosis is key to unlocking care packages such as speech and language therapy, counselling, or special educational needs. They said the changes are due to “unprecedented demand that has exceeded supply, resulting in unacceptable wait times and the need to prioritise resources towards children and most at-risk adults”. Read full story (paywalled) Source: HSJ, 30 March 2023
  2. News Article
    Children must now be in crisis before they can be referred for an autism diagnosis, parents claim. The strict new eligibility criteria in the Bristol region comes after a 350% rise in the number waiting more than two years for assessment. Changes made by the NHS mean children will only be referred with "severe and enduring" mental health issues. The Integrated Care Board (ICB) said it meant resources could now focus on those with "the highest clinical need". Some parents have launched the campaign Assess for Autism in protest against the rule change. An Assess for Autism spokesperson said children would now have to be at crisis point before being referred, describing the policy as "deeply concerning" and "regressive". However, healthcare provider Sirona, which provides autism diagnosis services, and the Integrated Care Board (ICB), which formally approved the new policy, insist it is necessary because families are waiting too long. They said resources can now be focused on those with the "highest clinical need or are the most vulnerable". Read full story Source: BBC News, 22 March 2023
  3. Event
    The 2023 Mental Health Network Annual Conference and Exhibition will bring together over 130 senior leaders from the mental health, learning disability and autism sector for lively discussions on the future of services, to share good practice, horizon scan, and network with their peers. The next year brings a range of opportunities and challenges for mental health providers. Organisations are continuing to deliver services whilst facing unprecedented community need, workforce shortages and with the cost of living risking eroding the mental wellbeing of the wider population. Even with these challenges, 2023 presents a year of opportunities. This includes funding secured to continue to deliver the NHS Long Term Plan, a new landscape of integrated care, significant community transformation work underway, and key bills passing through parliament aimed at improving the policy environment mental health providers operate in. The Network’s members will once again come together to focus on the challenges and opportunities the mental health sector faces within the changing context. Register
  4. News Article
    An ‘outstanding’ rated acute trust has been served with a warning notice by the Care Quality Commission (CQC) and told to make ‘significant and immediate improvements’ to its mental health and learning disabilities services. The CQC said staff at Newcastle upon Tyne Hospitals Foundation Trust had not always carried out mental capacity assessments when people presented with mental health needs. And this included when decisions were made to restrain patients in the emergency department. A CQC warning notice, published alongside a report of an inspection between 30 November and 1 December last year, says the trust must make “significant and immediate improvements in the quality of care being provided” to people with mental health issues, learning disabilities or autism. The warning notice also says the trust must ensure people with a learning disability and autistic people “receive care which meets the full range of their needs”. The trust’s records “did not show evidence that staff had considered patients’ additional needs,” the regulator said. Read full story (paywalled) Source: HSJ, 24 February 2023
  5. News Article
    Nearly half of NHS patients with a learning disability or autism are still being kept inappropriately in hospitals, several years into a key programme to reduce inpatient care, a national review reveals. The newly published review by NHS England suggests 41% of inpatients, assessed over an eight-month period to May 2022, should be receiving care in the community. Reasons given for continued hospital care in the NHSE review included lack of suitable accommodation, with 19% having needs which could be delivered by community services; delays in moving individuals into the community with appropriate aftercare; legal barriers, with one region citing “ongoing concerns for public safety” as a barrier for discharge; and no clear care plans. In some cases, individuals were placed in psychiatric intensive care units on a long-term basis, because “there was nowhere else to go”, while another instance cited a 20-year stay in hospital. Other key themes included concerns about staff culture, particularly “institutionalisation” and suggestions that discharge delays were not being sufficiently addressed. The report adds: “While the process around discharge can be time consuming, staff may perpetuate this by accepting such delays as necessary or inevitable.” Read full story (paywalled) Source: HSJ, 22 February 2023
  6. Content Article
    The review found that while in many cases care and treatment were appropriate, there were a number of cases that raised specific patient safety concerns. Below is a summary of key themes from this report: Out of area placements An out of area placement occurs when a person with acute mental health needs who requires inpatient care is admitted to a unit that does not form part of the usual local network of services. This review found that there was significant variation for people who are autistic and/or have a learning disability in this regard. This was most striking in the South West of England and Midlands regions, where 73% and 68% of all placements, respectively, were out of area compared to the national average of 57%. The report notes this can have significant impacts on the person affected by this, making it more difficult for them to maintain links with family, local services, communities and clinical/social work professionals. Hospital rather than community care It found that a significant number of patients covered by SWRs did not need to be in a hospital setting to receive the right care and treatment. The national average was 41%, while in the South West of England 53% of individuals did not need to be in hospital settings. The report linked this figure to delays in discharge processes, with patients staying in hospital settings for longer than needed as a result. Concerns about the involvement of family members and carers Concerningly, the report notes that examples of poor communication with family members and carers ‘far outweighed’ examples of effective communication, including: Being excluded from planning and decisions about their loved ones. Not being provided with basic information such as how to contact family members and visiting times. Not being listened to in relation to the care and treatment of their family member, or decisions about their care and wellbeing. There was regional variation in these figures, with one particularly striking case being an Integrated Care System stating that in 39% of their safe and wellbeing reviews, family representatives either could not be contacted for the purposes of the review, they did not want to be contacted or the individual did not want them to be contacted. Advocacy Another area of concern cited was the availability and quality of advocacy for people in hospital, which the report describes as generally inconsistent. Concerns included: Family members having to step into the role of advocates in place of professional advocacy, though they are generally not trained to do so, may not know all the options available and cannot be fully independent. Some provides being resistance to creating a “culture of importance” around advocacy. Poor advocacy awareness in places, which extended to limited attempts by providers to contact advocates and proactively involve them in processes and decisions relating to individuals. Safeguarding In the 3% of cases where safeguarding concerns were raised (50 out of 1,770), serious concerns noted by the report included: Inconsistent and/or high levels of restraint, seclusion and segregation. Patients not being assessed appropriately under the Mental Capacity Act or assessments not being completed in a timely way Harms associated with weight gain during admission (increasing the likelihood of health problems and premature mortality) and long lengths of stay. Issues associated with individuals being placed in inappropriate settings (for example, mixed-gender wards), the absence of CCTV in inpatient settings, issues with staff attitudes and relationships. Low quality and inconsistent of incident reporting. Inappropriate and inconsistent use of medication. The review also said that one region noted that safeguarding referrals were not always made appropriately, and plans were not always implemented to prevent the incidents from happening again. Physical health The report notes that it found multiple references to individuals with a high body mass index and significant weight gain following people being admitted to hospital, including instances where this led to people developing diabetes. This was a key area of concern also raised in the Cawston Park safeguarding adults review. Individual wellbeing and positive mental health The report noted that in many mental health inpatient settings there were not enough activities for people to do and not enough done to help maintain social connections. It noted that meaningful activities were not consistently available and, where they were, were not always age-appropriate, co-planned and person-centred. Workforce The report noted a number of workforce issues, including: Families and advocates raised concerns about whether wards were unsafe when there were significant staff shortages on them. Staff burnout. Heavy reliance on agency and/or temporary staff which can have negative impacts on patients being able to access regular activities and on patient-staff relationships. Reports of staff not having the appropriate training or skillset to effectively meet the needs of individuals. Conclusions and next steps Throughout the report there are a number of sections detailing ‘key considerations’ for providers and Integrated Care Systems, though no specific actions. It notes towards the end of the report that following on from this, NHS England, on a national and regional footprint, working with people with lived experience, family carers, integrated care boards, providers and commissioners, will bring partners together to look at specific actions that will address the challenges and themes highlighted through this thematic review over the next 12 months.
  7. Event
    To share the learning and resources from the award-winning (The Royal Society of Public Health - Arts in Health 2022) community partnership programme between Tameside and Glossop Integrated Care NHS FT, Made By Mortals CIC (arts organisation) and over 50 patients with a broad range of lived experience- including mental ill health, learning disability, autism, English not as their first language, and people that identify as non-binary. The project used immersive audio case studies coproduced by patients, including the use of music, sound effects, and drama, together with an interactive workshop that challenged volunteers and staff at the hospital to take a walk in the patient’s shoes. The experiential community-led training raised awareness of the challenges that people with protected characteristics and additional needs face. This work supported Tameside and Glossop Integrated Care NHS FT ongoing approach to quality and diversity and supported attendees to adapt their behaviours to create an empathetic and person-centred environment. Register
  8. News Article
    Hundreds of thousands of children have been left waiting by the NHS for the developmental therapies they need, with some waiting more than two years, The Independent can reveal. The long waiting lists for services such as speech and language therapy will see a generation of children held back in their development and will “impact Britain for the long haul”, according to the head of the Royal College of Paediatrics and Child Health (RCPCH). More than 1,500 children have been left waiting for two years for NHS therapies, according to internal data obtained by The Independent, while a further 9,000 have been waiting for more than a year. The total waiting list for children’s care in the community is 209,000. Dr Camilla Kingdon, president of the RCPCH, told The Independent: “The extent of the community waiting lists is extremely alarming. Community health services such as autism services, mental health support and speech and language therapy play a vital role in a child’s development into healthy adulthood, and in helping children from all backgrounds reach their full potential. “A lack of access to community health services also has direct implications for children and families in socio-economic terms. Delays accessing these essential services can impact social development, school readiness and educational outcomes, and further drive health inequalities across the country.” She said health and care staff are working immensely hard, but that without support they will struggle to address the long delays, which will “impact Britain for the long haul”. Read full story Source: The Independent, 26 December 2022
  9. Content Article
    The four reports focused on: Silverdale Trelawney House Heightlea Carrick.
  10. News Article
    Autistic people in England who do not also have a learning disability are approximately 51% more likely to die in a single year compared to the general population, according to a leaked document which estimates the mortality rate for the first time. According to an internal NHS England document, seen by HSJ, the standardised mortality rate between April 2020 and March 2021 was 16.6 deaths per 10,000 for people with autism and no learning disability compared to 11 deaths per 10,000 for the general population. NHSE also determined life expectancy for this group to be 75 years – 5.4 years less than the general population. Dominic Slowie, former national clinical director for learning disability, told HSJ that because of the different ways autism presents itself, it can be difficult to pinpoint causes of premature mortality. “In some cases, people with autism who are severely disabled and can’t communicate their needs in a conventional way are going to have premature mortality for the same reasons that people with a learning disability do, because people do not really understand the level of their need or do not investigate their need in a reasonably adjusted way,” he said. “While, if someone is presenting atypically in their communication, we mustn’t make presumptions – we must make reasonable adjustments to ensure they are investigated and diagnosed in the same way.” Read full story (paywalled) Source: HSJ, 13 December 2022
  11. Content Article
    Key messages People have a right to expect: access to the care they need, when they need it and that appropriate reasonable adjustments are made to meet people’s individual needs. This starts from the first point of contact with a hospital. This is not just good practice – it is a legal requirement. staff to communicate with them in a way that meets their needs and involves them in decisions about their care that they are fully involved in their care and treatment. the care and treatment they receive meets all their needs, including making reasonable adjustments where necessary and taking into account any equality characteristics such as age, race and sexual orientation. that their experiences of care are not dependent on whether or not they have access to specialist teams and practitioners. However, the report highlights the following issues: People said they found it difficult to access care because reasonable adjustments weren't always made. Providers need to make sure they are making appropriate reasonable adjustments to meet people’s individual needs. There is no ‘one-size-fits-all’ solution for communication. Providers need to make sure that staff have the tools and skills to enable them to communicate effectively to meet people’s individual needs. People are not being fully involved in their care and treatment. In many cases, this is because there is not enough listening, communication and involvement. Providers need to make sure that staff have enough time and skills to listen to people and their families so they understand and can meet people’s individual needs. Equality characteristics, such as age, race and sexual orientation, risked being overshadowed by a person’s learning disability or autism because staff lacked knowledge and understanding about inequalities. Providers need to ensure that staff have appropriate training and knowledge so they can meet all of a person’s individual needs. Specialist practitioners and teams cannot hold sole responsibility for improving people’s experiences of care. Providers must make sure that all staff have up-to-date training and the right skills to care for people with a learning disability and autistic people.
  12. News Article
    Mandatory training for treating people with autism and learning disabilities is being rolled out for NHS health and care staff after a patient died. It comes after Oliver McGowan, 18, from Bristol, died following an epileptic seizure. At the time, in November 2016, he had mild autism and was given a drug he was allergic to despite repeated warnings from his parents. His mother Paula lobbied for mandatory training to potentially "save lives". A spokesman for the NHS said the training had been developed with expertise from people with a learning disability and autistic people as well as their families and carers. The first part of the Oliver McGowan Mandatory Training is being rolled out following a two-year trial involving more than 8,300 health and care staff across England. Mark Radford, chief nurse at Health Education England said: "Following the tragedy of Oliver's death, Paula McGowan has tirelessly campaigned to ensure that Oliver's legacy is that all health and care staff receive this critical training. "Paula and many others have helped with the development of the training from the beginning. "Making Oliver's training mandatory will ensure that the skills and expertise needed to provide the best care for people with a learning disability and autistic people is available right across health and care." Read full story Source: BBC News, 2 November 2022
  13. News Article
    A troubled trust’s inpatient wards for people with a learning disability or autism have been rated “inadequate”, with staff criticised for resorting to restraint too readily which sometimes injured patients. Care Quality Commission inspectors visited Lanchester Road Hospital in Durham and Bankfields Court in Middlesborough, run by Tees, Esk and Wear Valleys Foundation Trust, in May and June. They found most people were being nursed in long-term segregation and some patients had very limited interaction with staff. Among the CQC’s main criticisms was of high levels of restrictive practice used by staff, including seclusion, restraint and rapid tranquilisation. Inspectors said incidents were not always recorded and staff did not learn from them to reduce levels of restrictions in place. They also warned staff were not always able to understand how to protect people from poor care and abuse. Karen Knapton, CQC’s head of hospital inspection, said: “Three people had been injured during restraints, and 32 incidents of injury had been reported for healthcare assistants, some requiring treatment. “This is unacceptable and measures must be put in place to keep patients and staff safe.” Read full story (paywalled) Source: HSJ, 5 October 2022
  14. Content Article
    The report addresses these three key areas: Community support: reducing the number of autistic people and people with learning disabilities in inpatient facilities, and the benefits of the Trieste model The use of restrictive practices in inpatient facilities and wider concerns relating to the appropriateness and continued use of such facilities The wellbeing of and accountability for autistic people and people with learning disabilities including the creation of a new role: the Intellectual Disability Physician, and the need for independent reviews into the deaths of autistic people and people with learning disabilities
  15. Content Article
    Brooke was admitted to Chadwick Lodge on 15 April 2019 and had been diagnosed with Emotionally Unstable Personality Disorder and Autism Spectrum Disorder; she initially failed to engage and was violent to staff and self-harming. By the middle of May 2019 she had made progress. On 5th June 2019 she was found with a ligature around her neck, which was suspended from the door of her room. Following this incident consideration should have been given to a formal risk assessment to include consideration of her level of observation. The details of the incident should have been fully disclosed to the MDT meeting on 6 June and consideration given to increasing the level of observation. The incident should also have been discussed and disclosed to all members of staff caring for her. On 10 June 2019 Brooke Martin was found secretly fiddling with a bedsheet on two occasions by two different members of staff.. The bedsheet should have been removed and examined, that would have shown that a section of the sheet had been torn off. This would and should have resulted in a full risk assessment and search of her room, that would have resulted in an increase in her level of observations to 1:1 observations. Brooke Martin, if constantly observed or other safety measures put in place would not have been able to tie the ligature that caused her death and would not therefore have died on 11t June 2019. Coroner's concerns During the course of the evidence it was explained to the coroner that it had not been possible to access the notes and records from an out of area hospital because not all the health providers were using “System One”. It is a major concern that the various systems used throughout the NHS are not compatible with each other and it is not always possible for each healthcare provider to access the notes and records of the patient. This situation should be reviewed to see how access across the NHS can be gained to patient records when required. The coroner was told by one senior clinician that when a patient is referred to his specialist mental health unit it is often the case, that is 9 times out of 10, he does not receive all the information of the patient’s history. This would not be the case if he had direct access to the records.
  16. News Article
    Throughout the pandemic, people with learning disabilities and autism have consistently been let down. A lack of clear, easy-to-understand guidance, unequal access to care and illegal “do not resuscitate” instructions have exacerbated the inequalities many people have long faced. It is crucial we do not forget those who have constantly been at the back of the queue: people with learning disabilities and autism. The impact cannot be ignored: research shows that 76% of people with learning disabilities feel they do not matter to the government, compared with the general public, during the pandemic. And data shows the danger of contracting COVID-19 for people with learning disabilities and autism is much higher than for the wider population. Public Health England has said the registered COVID-19 death rate for people with learning disabilities in England is more than four times times higher than the general population. But experts estimate the true rate is likely to be even higher, since not all deaths of people with learning disabilities are registered in the databases used to collate the findings. The reasons the pandemic has impacted people with learning disabilities so disproportionately are systemic, and a result of inequalities in healthcare services experienced for generations. Yes, some individuals are more clinically vulnerable, on account of the co-morbidities and complications associated with their learning disability. For many people, however, poorer outcomes after contracting the virus are due to non-clinical issues and inequalities in accessing healthcare services. This is inexcusable. The government must prioritise vaccinations for the 1.5 million people with learning disabilities and 700,000 with autism. Putting this long-overlooked group at the top of the vaccine queue would help address the systemic health inequalities learning disabled people face. Read full story Source: The Guardian, 15 December 2020
  17. News Article
    Staff at a mental health unit missed "multiple opportunities" to realise a woman had become unwell before she died, a coroner has said. Sian Hewitt, 25, died at Milton Keynes Hospital last year after collapsing at the nearby Campbell Centre. Coroner Tom Osborne said there was "a failure to start effective CPR". A spokesman for the centre said changes have been made to how care is delivered. Ms Hewitt, who had Asperger's syndrome and bipolar disorder, was admitted to the inpatient unit on 13 March 2019. She died less than a month later on 6 April 2019 at Milton Keynes Hospital, where she was taken after collapsing on Willow Ward at the centre. An inquest concluded she died of a pulmonary embolism, caused when a blood clot travels to the lungs. In a Prevention of Future Deaths Report, Mr Osborne said the centre failed to carry out a risk assessment and there was a delay in administering a drug resulting in "her mania not being brought under control". His report said the "failure to recognise how seriously ill she had become" had "resulted in lost opportunities to treat her appropriately that may have prevented her death". He said her death suggested the NHS was "unable to provide a place of safety for those who are suffering from Asperger's syndrome" or other forms of autism "when they are also suffering additional mental health problems such as bipolar". Read full story Source: BBC News, 4 December 2020