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The Oliver McGowan Mandatory Training: improving services for people with autism and learning disabilities

CHS Healthcare recently hosted the latest edition of our webinar series: ‘The Oliver McGowan Mandatory Training: improving services for people living with autism and learning disabilities’.

The focus of the webinar was the importance of The Oliver McGowan Mandatory Training, which aims to equip health and care staff with the skill and knowledge needed to provide safe care for people with learning disabilities or who have autism. The webinar was led by Paula McGowan, OBE and Philippa Spicer, NHS England Senior Responsible Officer for Learning Disability and Autism and Transition Director. Following the tragic and avoidable death of her youngest child Oliver, Paula has dedicated her life to campaigning and the uptake of this training.

While progress has been made, more is needed, in 2021, 49% of deaths were rated as ‘avoidable’ for people with a learning disability. This compares to 22% for the general population. This stark statistic highlights the importance of Paula’s work and her determination to use Oliver’s tragic story as a case for change.

Paula and Phillipa’s work has led to the Health and Care Act 2022 introducing a new requirement. All regulated service providers must now ensure their staff receive training on learning disability and autism which is appropriate to the person’s role. During our webinar Paula and Phillipa discussed the training in detail, and the next steps for systems, services, and staff.

Key points discussed included:

The importance of knowledge and understanding when working with vulnerable people

Deep understanding and knowledge from all staff when caring for people living with autism or learning disabilities is vital. Requirements of care are unique for every individual depending on their needs and condition. The Oliver McGowan Mandatory Training ensures that staff have the skills required to provide improved healthcare to vulnerable people that can meet their needs.

Empathy from healthcare professionals is imperative when working alongside families and caregivers. This supports a holistic approach to care and provides individuals with confidence and trust in the system.

Implementation of the Code of Practice

A Code of Practice is currently being drafted as per the requirement of the Health and Care Act 2022. This new code will provide services with information on how to implement the Oliver McGowan Mandatory Training. The code has now been published for consultation with the aim of roll out by December 2023. It will include information on the training content, delivery, evaluation and monitoring, and how it will be accredited.

Inequalities and LeDer

Avoidable deaths of people with learning disabilities are higher than those in the general population. This is a fact that must be addressed. To identify these inequalities in LeDeR, the training workforce needs to be representative of the population it serves with a focus on intersectionality. A task and finish group supporting the development of the Oliver McGowan Mandatory Training has been set up to develop and deliver this change.

At CHS, we were moved by the presentation and Paula’s commitment to making positive change, and it’s fair to say this feeling was shared amongst our viewers given the feedback we received following the live event. It has reinforced the importance of understanding patient needs and communication with families and caregivers.

One attendee stated that the webinar, “was an informative session and an eye opener for profession to continue to develop their listening skills, collaborative care and co-production of care delivery.”

Another attendee stated “It was emotive and quite an empowering that raised a lot of issues with equitable service delivery in Health and Social Care”

We must all listen to Oliver’s story. We must also ensure that this insight informs how we interact and truly listen to those people in our society who don’t always have a voice. Take action now to help change the trajectory of inequalities in LeDeR and together we can prevent the many avoidable deaths like Oliver’s from happening again.

In addition to Paula and Philippa’s astounding efforts to improve healthcare for people living with autism and learning disabilities, a petition has been created to improve the education system for neurodivergent students. Every neurodivergent student should be able to get the education they need but unfortunately many are being failed and denied the most basic support, or adjustments at school.

You can make a difference and join us in signing a petition to get the Government to pass into law that all staff in educational settings must be trained on learning disabilities and autism.

Sign the petition here

As a reminder, this webinar was not recorded for distribution however if you would like to learn more about Oliver’s story, and Paula’s fight for change you can head to The Oliver McGowan Mandatory Training

CHS Healthcare provide LeDeR reviews with an aim to address the inequalities in LeDeR.

If you would like to find out how we can support your teams, please get in touch.

The significant impact of undiagnosed Autism and ADHD

Waiting lists for autism spectrum conditions are at an all-time high and some patients with ADHD are waiting as long as four years to be diagnosed. We’ve looked at the evidence to understand the impact that such lengthy waits are having on the livelihoods of the population.

Previous research overwhelmingly shows that both autism spectrum conditions and ADHD need to be diagnosed as soon as possible, to allow people to make necessary adaptations to their lives and prevent symptoms from worsening whilst they wait for critical treatment to begin.

ADHD:

The NHS does not publish ADHD waiting times in the same way that they are published for autism, however it is estimated by The Observer through freedom of information requests sent to NHS trusts that many patients wait a minimum of a year to receive a diagnosis, and the longest wait recorded is almost four years. A 2019 study found that living with untreated ADHD is associated with an estimated 12.7 year shorter estimated life expectancy, which highlights the urgency of diagnosing and treating the condition as early as possible.

Extensive research has been conducted into the detrimental impact of untreated ADHD on health and lifestyle. Adults with ADHD have a significantly lower quality of life and have significantly more difficulties obtaining and maintaining employment compared to those who don’t. A review of existing studies found that untreated ADHD can lead to deficits in academic achievement, substance and alcohol abuse, financial and employment difficulties, higher rates of criminality and antisocial behaviour, and increased rates of comorbid mental health disorders such as anxiety and depression.

Further complexities arise when we consider how diagnosing ADHD is not simple due to common overlapping symptoms between ADHD and mood or anxiety disorders and substance use disorders. This shows us how diagnosing and treating ADHD is not a one size fits all approach and requires the complex coordination of multiple different healthcare teams to provide personalised care – a factor that no doubt contributes to the extreme delays we are seeing.

Autism:

As discussed in our earlier blog, waiting lists for autism are at a record high, and similarly to ADHD, living with undiagnosed autism has a profound effect on wellbeing. Many people with autism discuss how they go most of their lives not knowing their diagnosis and can be driven to crisis point because of this.

Due to the range and complexity of autism symptoms, it is commonly misdiagnosed due to the overlap with mental health conditions including social anxiety, eating disorders, personality disorders, obsessive compulsive disorder and psychosis.

In the most severe cases of untreated autism spectrum conditions, people can end up hospitalised in a mental health unit and subject to inappropriate treatment. Research has also found that once hospitalised, the average length of stay for an autistic person in a mental health hospital is 5 and a half years, where many patients deteriorate during this time due to the environment being unsuitable.

Patients are being failed by long waiting times that see their mental health and important aspects of their lives, such as career and social life, decline and deteriorate. Not only does this have a profound impact on the individual’s wellbeing, deterioration of psychological and lifestyle factors can lead to other issues that require medical or social intervention – putting additional burden on the already strained healthcare system. Additionally, our analysis reveals the complexity of diagnosing autism and ADHD due to overlapping symptoms with other mental health conditions, highlighting how every patient needs a personalised approach and coordination of multiple services that requires additional resource. The NHS cannot on its own deliver this level of service at the pace that is required.

To address this unmet need, the NHS can look to new ways of working and consider private sector partnerships to truly transform diagnosis and care for the better. CHS Healthcare are offering remotely delivered autistic spectrum condition and ADHD assessments to help NHS partners reduce waiting lists and add essential clinical capacity to struggling services. Contact Ellie Norman (eleanor.norman@chshealthcare.co.uk) or Sam Jordan (sam.jordan@chshealthcare.co.uk) to find out more.

Our analysis of the past five years of mental health funding and commitments in the UK

As of October 2022, provisional statistics estimate that 1.9 million people are waiting for mental health care, so it’s crucial that the resource and funding required to deliver necessary support and treatment is available. To understand the state of funding for mental health services, we’ve looked at the last five years of budgets and the various commitments that have been unable to meet demand.

In 2017, the government pledged £6.3 billion to the NHS. Whilst no specific funding for mental health was announced, the government committed to a “parity of esteem” between mental and physical health and published a green paper setting out transformation plans for children and young people’s mental health, including creating new community-based mental health support teams and appointing a mental health lead in all schools.

2018’s autumn budget saw big commitments to improve mental health care. Mental health spending was to increase by at least £2bn per year by 2023/24, in line with the overall NHSE budget. Specific commitments focused mainly on bolstering crisis support, including:

mental health support in every major A&E department and more mental health specialist ambulances

a 24/7 mental health crisis service over NHS 111

a greater number of community crisis services

A year away from the 2023/24 target to deliver on these commitments, it is currently unclear what progress has been made.

In 2019, the budget was cancelled due to the delayed Brexit vote and general election. The government did announce the expansion of personal health budgets to 200,000 people by 2024 which will provide extra funding for treatments, equipment and personal care to support people with mental health needs, autism or learning disabilities.

In 2020, £500m was dedicated to supporting mental health services. The main focus this year was to improve the mental health estate, with pledges made to get rid of outdated dormitories in mental health hospitals and provide single en-suite rooms. This year the government also provided funding to support research into the effect of the COVID-19 pandemic on mental health.

In 2021, further commitments were made around mental health, some of which reiterate commitments made in previous years, including:

  • £100m for mental health support for expectant parents
  • £95m for researching methods for treating cancer, obesity and mental health
  • £150 million to invest in NHS mental health facilities linked to A&E and to enhance patient safety in mental health units
  • £300 million to complete the programme to replace mental health dormitories with single ensuite rooms

The BMA commented that this announcement “falls significantly short of the BMA’s call for investment of at least £4.6 billion a year by 2023/24”.

2021 also saw more of a focus on boosting support for autism and learning disabilities. The government allocated £75m for a new 5 year strategy to speed up autism diagnosis, and announced that £2.6bn will be spent to provide 30,0000 new school places for children with special educational needs and disabilities (SEND). Although the National Association for Special Educational Needs said that it is unclear when these schools will be created and how they will be staffed.

Last month, mental health was missing from the 2022 autumn budget. The NHS was given an overall cash boost of £3.3bn, that will mainly be spent on improving ambulance and A&E waiting times and improving GP appointment access.

Mental health charity, Mind, raised alarms around the absence of mental health in the budget, with Sophie Corlett, Interim CEO, commenting “Now is not the time to be compromising on care. The mental health sector didn’t receive pandemic recovery money this year to tackle this backlog, and inflation means that while demand is going up, funding is going down. Despite the country facing a mental health crisis amidst the largest spike in living costs for generations, mental health services have been deprioritised – just as the nation needs them the most.”

This also comes as HSJ report that NHSE is cutting funds earmarked for cancer, maternity care, primary care, community health, mental health, learning disabilities and health inequalities to account for deficits elsewhere.

Our analysis has led us to the conclusion that these funding announcements don’t seem to have made a dent in waiting lists and standards of care. Additionally, little evaluation is done that holds the government and NHS to account against their commitments. For example, just last week the government re-announced its 2018 plans to expand mental health crisis support, suggesting that these initial commitments haven’t been met within the set timeframe. Without accountability, we risk a culture of empty promises. We also need to know who controls mental health spending and what autonomy ICSs will have. Without this knowledge, third sector and private providers are left in the dark about how they can help.

Despite large allocations of funding over the years, mental health services are in disrepair and doing more of the same doesn’t seem to be working. NHS Confederation’s recent report on their vision for mental health services in 2032 echoes this – with one of their three key calls to action being ‘a deep commitment to large scale reform, innovation and change’. We need to do things differently.

The NHS should look to new ways of working and consider private sector partnerships to truly transform care for the better. We welcome the government’s recent alliance with independent providers to tackle the elective backlog and the same approach should be considered to support mental health services.

CHS Healthcare are offering remotely delivered autistic spectrum condition assessments and ADHD assessments to help NHS partners reduce waiting lists and add essential capacity to struggling services. Contact Ellie Norman (eleanor.norman@chshealthcare.co.uk) or Sam Jordan (sam.jordan@chshealthcare.co.uk) to find out more.

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