Difficult Workplace Conversations in Care

Author: Max Davies (Gender Identity, Gender Diversity and LGBTQ+ Expert)

Over the past few months, we have been working on developing our programmes to ensure that they have applicability to the workplace. Part of this involves linking up the training to the tasks that are undertaken following the training. Today, we have been working on a “Respond to Racism” programme. We are hoping that this programme provides the impetus to initiating those challenging conversations, and that learners draw on some of the practical approaches outlined here.

Racism comes in many forms, some forms rise from ignorance, and others steam from generational socilisation about people of colour which are dangerous to many people. Language is a tool in which we communicate, which comes in many different forms; words can have very different meanings depending on who you’re talking to, how things are said and the context in which the word is used. Inviting personnel to have conversations about language can be a starting point on making sure each member has their voice heard. Positive language can help change and build positive mindsets. This can lessen conflict and reduce tension. A workplace that values people benefits from stronger communication. A person does not want to feel like they are walking on eggshells with their team. Understanding the appropriateness of terminology to use regarding race clarifies our implicit bias and even covert bias by drawing attention to the potentially harmful things that could result in the experiences of microaggression by BAME (Black, Asian and Minority Ethnic) and/or BIPOC (Black, Indigenous and People of Colour) individuals on a daily basis.

Here are a few activities in which you, as an organisational leader, could do to encourage workplace conversations:

Workplace mentoring – a way of supporting multiple members of your team through the engagement of others. They are educational opportunities for personnel to share experiences, skills, and knowledge of not only work based practices but also one’s personal life and lived experience.

Reverse mentoring – This is usually a reverse hierarchical approach where a member of the board is the mentee of a member in an “early career” position. This is particularly helpful when following the experience of a person of colour who may be finding it difficult to socially mobilise within a company. By following through their lived experience, the member of the board will see what may be impacting on their success and movement within the company to be able to make changes.

Reciprocal (two-way) mentoring – This idea is where both parties become the mentor and mentee in the workplace. Engaging in specific conversations about each other’s skills, knowledge, and experiences. This is a shared process in which both can learn and develop from another member.

Feedback – Anonymous surveys and research reports. Sending out a research report through the workplace will allow your company to engage in anonymous conversations about specific topics. This could be as simple as the words and terminology people use (or may wish others to use), to how people feel valued within the workplace.

Facilitate in-house groups – In house groups can help and support minority groups to be seen, valued and heard. These groups can help facilitate discussions where a person can express themselves in a safe environment. This can be a formal morning meeting to societies and groups for specific minorities. These groups can produce and incorporate the previous suggestions.

Formal meetings/supervisions – A time to ask some employees specifically about their experience within the workplace and if they have any personal concerns that may impact their work. This should be a one–to–one process; it’s worth noting some people may feel put on the spot, and may not feel safe to speak to the other member of the team, or confident enough to do so.

Self-awareness is about consciously looking at the way we/people think, behave, or feel etc. It’s about:

  • Paying attention to what it is that really bothers people about themselves or someone else.
  • Identifying what is emotionally charging them in a situation.
  • Assessing how people give and receive feedback.
  • Making time to understand gaps in knowledge where there could be further reading or training.
  • Personnel can take time to reflect through open discussion, journaling or even asking for feedback on a situation.
  • Pick apart what happened and what we would have liked to have happened, and what could we have done better. It is the who, how, why, what and when.

Let’s be clear. These do not resolve an organisation from difficult conversations. Overt, covert and implicit bias can still happen in the workplace, but this is just a starting point. Becoming an ally and supporter of the BAME community is a lifetime process. Having difficult conversations will happen.

Here are 7 suggestions on how you can manage difficult interactions:

  1. Be clear about your objective and what it is you want to say. Already having an outline will make sure you are prepared to get your point(s) across quickly and effectively.
  2. Have notes and a script so you can keep on topic. This will make sure you do not not move onto unnecessary conversations and that the problems most important to you are heard first and foremost.
  3. Say your side of the story, allow them to say theirs – provide opportunity for discussion. Providing opportunity for discussion can allow all personnel to be heard and both members to listen to justifications and reasoning
  4. Be mindful, open, and honest. Just because things don’t happen to you does not mean it doesn’t happen to someone else. Everyone’s experience in life is personal.
  5. Have a procedure for managing emotions – deploy resolution skills. Work together to come to a resolution so that all parties are leaving the conversation knowing that the company is valuing them as a person.
  6. Company policies, procedures or leaders’ positions on a particular topic should highlight what they would do in a situation of racism. If someone is being racist, and you have a policy in place for racism, make sure you follow this through. Action speaks louder than words. If you tell someone you will do something, do it, and this will lessen conflict. If company policy represents your actions, this should move a lot more smoothly if personnel have been constantly made aware of the stance/policies of the company.
  7. Have an external note taker or person present throughout such conversations. Having an external member take notes or be present, with a non-bias point of view of the personnel in question could help one to negotiate the situation and manage emotions.

Email us at info@3spirituk.com to find out more about our “Respond to Racism” and “Constructive Conversations” training programmes. You can also purchase our “Difficult Conversations Tool” for £15 via our tool/infographic shop.

More ways to learn…

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World Aids Day 2021: Support for Gay Men and Transgender Women in Social Care

Today is World Aids Day. A day we remember all the lives lost and affected by the pandemic of the 1980s. Forty years on, many people are still living with the memories of the 80s, many still living with AIDS. But what does this mean for social care?

Many people accessing social care now lived through the AIDs pandemic and experienced the  systematic oppression of LGBTQ community. As a result, many LGBTQ people have Minority Stress conditions. Minority Stress Theory relates to the idea that people from disadvantaged or marginalised backgrounds experience long-term stress because of factors associated with such an identity. In the context of LGBT ageing, the idea is that poorer health outcomes stem from the hostile social climate that LGBTQ people have experienced in the past. In other words, the consequences of prejudice and stigma impact that manifests in worse physical and mental health. Considering 40 years on from the AIDs epidemic, many young individuals at the time are now or soon may be seeking care. Let’s consider the facts…


AIDs is not going away; it has become a manageable one. Social care providers need to take extra care and consideration when working with Gay men and Transgender women. By responding to the daily medication, they receive for AIDs, the stigma they face and the great oppression they have lived through during this time. It is about being compassionate to the lives lost; many have been partners, friends, and family. Friends who are family, considering many gay people in 1980, were stigmatised. Families rejected many people; thus, friends became the new family. Conversations in social care around friends and family need to be inclusive of the fact not many people include only “blood ties” as their immediate family. Many gay men and transgender women will not have family or traditional family types and are more likely to require support and reside in care homes more so than heterosexual couples (as they are more likely to be single, live alone and not have children). Social are providers should consider the importance of education and need to understand that…

  • Older LGBT people are more likely to engage in harmful behaviours like drug use, frequent alcohol consumption, or smoking. 
  • One study found that 18% of older LGBT people would feel uncomfortable disclosing their sexual orientation to their GP and healthcare professionals. 
  • Older LGBT people’s past experiences of negative interactions with health care providers shape how they engage with and access health services later in life.
  • Reminiscence activities with LGBTQ people may take them back to a place in which they do not want to revisit. It may be a place that is very hurtful for them. Probing too deeply could result in worsening of mental health and potentially furthering problematic behaviour.

Source: National LGBT Survey (2018) https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/722314/GEO-LGBT-Survey-Report.pdf

Remember that the interactions that social care providers have with gay men and transgender women are very much affected by the social care they may have received around the AIDs epidemic. Their trust for care providers resides in your ability to reassure them of how times have changed. How you respond to potentially harmful situations could be the realisation for many LGBTQ that they are safe, valued, and worthy of care.

Stigma can be a killer.

End Inequalities, End AIDs, End Pandemics.

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William’s Story

Central to our impact work is engaging with the staff we have trained to hear about their journey beyond the training. Over the past year, those stories have become tales of extraordinary courage.

We first met William when he completed his dementia training with us some years ago. William has over fourteen years of experience in care, which shines through his love for the role. As well as a strong passion for his work, he is qualified to a Diploma Level 3 and in Dementia Care. The most important value that he takes away from the training though, is to see a person for their person-hood and not for their dementia. Passionately, he talked about connection with people in advanced stages of dementia; he talked of how he used creative communication strategies, and the joy this gives him. 

Williams’s skills were put to the test during the pandemic, when there was a big outbreak in the care home where he worked, and over half the residents caught COVID-19. William found himself working more and more hours, often up to 50 per week, having to take on multiple roles: being a carer, nurse, friend, and family. New clinical skills had to be learned on the job such as taking blood pressure and reading someone’s pulse. The complex skills required were way above his pay grade. What helped at this time though was ‘mucking in’ all together. This togetherness – this banding together, added more strength in such a challenging time.

One of the biggest hurdles that William faced was supporting residents in the absence of family. William recalls one night when he sat with a woman who was dying, as her family could not be with her. He sat and comforted her, not leaving her side for the whole night. He recalls their conversations about the joy she had for her grandchildren. He comforted her until the moment she died.

Another resident living with dementia was also in this position, unable to see her husband who had previously come and sat with her every evening. Although she didn’t always recognise him, it was part of her routine. So, when
her husband couldn’t come and visit her anymore, there was a significant behaviour change and decline.

During this time, William worked exceptionally hard to keep himself and others emotionally and physically safe. He was vigilant about infection control, and always ensured wearing full personal protective equipment (PPE). Despite all of this, seven months ago, William caught COVID-19. He wasn’t even able to return home as he needed to keep his vulnerable partner safe. However, William was truly cared for by his organisation who provided him with an isolation room on premises, checked on him, returning the care that he had given for years.

Once William returned home, he found that he had recurring symptoms. He was diagnosed with LONG COVID, and experiences profound pain every day. At only age 38, he now takes ten tablets a day and this does not eradicate the pain. Tiredness rules most of his days and he is unable to support his family in the way he used to. He reflected that he feels frustrated as his condition isn’t improving and is looking for answers from the health team, but these are not always forthcoming.

I asked William what he wanted his main message to be. He said: We knew the risks of our job, like soldiers going to war, but we still went. However, there is very little recognition for our work – what I can’t understand is why the queen doesn’t give out MBEs to carers”.

The humanity given by these true heroes deserves a decent pay, recognition of their skills and appropriate support with the long-term impacts of COVID-19. It is a value that is continuously devalued in a system which prioritises money
over connection and care. But here we are, trying to combat this through telling stories of wonderful human beings like William, who have given so much. Whilst we are unable to name the employer in this blog, we salute the way you
have cared for William – a care and respect which we work to prioritise.

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Autism Blog In Memory of Dave Greenfield – Keyboard Player with The Stranglers, by Andy Rotherham

Photo Credit: David Boni

In this blog, I wanted to write something in memory of a personal musical hero of mine. Dave Greenfield was the keyboard player of The Stranglers from their very early days right until his untimely death from Covid 19 on the 3rd of May 2020.

The Stranglers have just released their new album Dark Matters to critical acclaim. Of the 11 tracks on the album, 8 feature the final recordings of Dave.

In a recent interview with the Guardian Newspaper, bassist JJ Burnel is quoted as saying: “We always knew Dave was special, but we didn’t realise how special. They’ve got a name for it now. Very high-functioning autistic.” He has used this descriptive of Dave in a few other interviews lately too. He mentions Dave’s eccentricities along with his unique and virtuoso musical ability. He also says that Dave would try to explain things but wouldn’t know where to edit the information, which would lead to the listener’s eyes glazing over. Although Dave wouldn’t notice and  would carry on with his explanation regardless.

Now this description probably doesn’t match with the stereotypical view the majority seem to have of Autism. In the media, certainly until recently, Autism was portrayed as two distinct polar opposites; A non-verbal person seemingly locked in their own world and unable to communicate with the world around them or that of someone who socially inept, limited in communication, yet in possession of an incredible memory for facts and figures. Think Dustin Hoffman’s ‘Rain Man’. But the truth is that Autism is all around us and varies considerably for everyone who is ‘on the spectrum’.

So what is Autism? Simply put, it is a neurological difference. It is not a disease, it is not a fault, it is a difference. The analogy I use in my teaching is that it is like comparing a Mac to a PC. PC’s are the majority and adequate for most day to day tasks. However if you want to do something more specialist in art or photography for instance, chances are you are going to prefer to use a Mac. Autism has been described as having a specialist brain, where it is exceptionally good at some tasks, but struggles with mundanity.

Autistic people often feel invisible in society and are ignored or dismissed. Autistic skills and intelligence are very rarely recognised because the way Autistic people communicate is somewhat different to the way non-autistic people (Neurotypicals) do. Yet, many great minds who have contributed significantly to the development of mankind displayed signs and symptoms of what would now be recognised as Autism.

Hans Asperger said: “It seems that for success in science or art, a dash of autism is essential.”

Temple Grandin posits, “What would happen if the autism gene was eliminated from the gene pool? You would have a bunch of people standing around in a cave, chatting and socializing and not getting anything done.”

There are many common gifts that can be shared by Autistic individuals, such as Pattern Thinking, Visual Learning, Attention to Detail, Extreme Levels of Concentration, Loyalty and Honesty and a Deep Passion and Knowledge on their Special Interest.

Less common ones include Savantism and High IQ. But if you look at people with a high IQ, you would find a disproportionally large Autistic representation.

But like all things Autism related there is no standard. Some may have many of these gifts, some one or two and some none. As Dr Stephen Shore said: “If you’ve met one person with autism, you’ve met one person with autism.”
What unites all, however, is Outside the Box thinking, the ability to think freely without the constraints of established thinking or social norms.

“Sometimes it is the people no one can imagine anything of who do the things no one can imagine,” Alan Turing.

Dave was a unique man in so many ways. I would suggest, with respect, that he was a musical savant. This fits with Guitarist Baz Warne’s description on BBC Breakfast the other day of himself watching Dave compose on the keyboard and being unable to follow Dave’s unique way of thinking. Until a point when the genius of his work was revealed. And, let’s face it, the world would be a much less colourful place if Dave hadn’t been in it and left us such a gift of his wonderful music.

About the Author

Andy Rotherham has been a Stranglers fan since buying Grip/London Lady upon its release in 1977.

He also happens to be Autistic. Diagnosed at the age of 50, he made a conscious decision to embrace his Autism, explore what gifts it gives him and use his insight to teach others about Autism.

He is a Trainer to professionals on the subject of Autism. He is a musician. He also works as a guitar builder/repairer for a well known band (Not The Stranglers).

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Vivek’s Care Assistant Story

At 3SpiritUK we enjoy hearing the stories from our excellent support staff who have received training with us, and we believe it is important to showcase all the hard work that they do. Vivek is a senior care assistant who has been working within the industry for the past 2 years, and here is his story:

“I decided to come to the UK to do a post-graduate as a career in care had always appealed to me and in my home country I enjoyed doing social activities. I started my journey as a junior care assistant and have been working within the the social care sector for the past 2 years. It is a career that has developed my characteristics including my interpersonal skills and ability to connect with others. I learnt that ‘vulnerability’ is a quality as it helps connection; my colleagues and the people I work with are like family to me. My job has also helped me to develop new qualities, including the need for patience – particularly within the recent COVID-19 pandemic. The social care industry has been extremely busy, hectic and heartbreaking the past year – I have struggled seeing many getting affected by the impacts of the coronavirus. I have found this personally very challenging but, as a team I believe we have navigated a way through

Throughout my training, I have specialised in dementia care. I have developed my understanding of dementia and am aware of the importance of treating all individuals with respect and understanding its about what matters to them not us. Although this has been challenging throughout the COVID-19 pandemic, there have been many competing demands. My management team has been especially helpful in navigating these conflicts and has supported me throughout

The training is so important as it has not only helped to develop my understanding, but also made me feel as if I am treated as a professional. Its so important to feel valued in this job. Over the past 7 months I have received a promotion and developed new skills, with the help of 3SpiritUk my dementia care training helped me to ‘think on my feet’ during the pandemic, and helped me to know that I’m doing the right thing. My training with 3SpiritUk has not only been insightful, interesting and engaging , but I have also enjoyed interacting over various platforms with new people, and developiong new digital skills which will be important for the future.

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Simon’s Health and Social Care Story

At 3SpiritUK we are passionate about showcasing all of the brilliant work those in the health and social care industry do, everyday. Simon is a deputy manager who is working towards his Level 5 Health and Social Care training with 3SpiritUK and here is his story:

“I have been working in care for 18 years, I used to be an electrical engineer but was looking for a career change after the stress of an unfulfilling job, working long hours became overpowering. My friend who was also working in care suggested that I would be a great support worker, due to my qualities. The role offered a great work-life balance meaning I could fit my career around my children. I soon gained a promotion and gradually became a manager and opened up a new home with 6 clients. I have done all relevant training alongside working towards my Level 5 in Health and Social Care and now am happy in my career as a deputy manager.

I enjoy my job as a deputy manager as it is the best of both worlds; I am able to do shifts and also work within an office environment. I enjoy the practical side of work that the care industry offers, in my previous office based role I found myself become dethatched from the job and my team, the ‘hands-on’ side of care has not only gained me respect, it has also been extremely fulfilling in my everyday tasks. Despite the fact that this can be difficult to manage sometimes due to multitasking many duties at once, particularly over the recent pandemic, I have found that I thrive under pressure and enjoy keeping busy.

Over the last 18 months with the help of training that I have received I have learnt about working with people with mental health issues and learning disabilities, moving and handling training, which is a skill I was not familiar with before, and working with different client groups including those with both with physical and emotional support needs.

I have learned so much about the care industry, including the importance of ‘thinking on my feet’. My team and myself have gone through so much during the pandemic –. I believe that this has brought myself and my colleagues together. I work for a large organisation who at the time were working from home whilst we were on the front line, which meant that we faced several challenges including illness and isolation, COVID-19 outbreaks and emotional and physical strain, which was not only extremely worrying but also frightening. However, everyone pulled together as a team, taking on extra-hours and pulling their weight so we could meet the demands of the job I believe that from my personal experience, these are some of the qualities necessary to make a good support staff member. “

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2020 Year of Transformational Change

As we go into 2021, we want to honour the lives lost, but also celebrate the heroism, determination, and resilience our sector has demonstrated time and time again.

Alongside the basic challenges of staff recruitment, there have been significant changes in working practices driven by legislation, regulation updates, and social distancing requirements. There have been substantially increased workloads, mainly through increased cleaning regimes and loss of formal and informal support. There have also been changes to core working practices such as assessment and support, which are increasingly being delivered through a remote platform. In addition, there has been rapid recruitment requirements, new challenges in maintaining staff wellbeing and managing safety and safeguarding, all of which have impacted on workforce development requirements.  

This led to a considerable rise in the demand for our services, which we had to match with the rapid development of a new digital infrastructure to enable us to offer programmes online. During this time, we have worked extensively across the sector, with a very broad range of stakeholders.  At first we were reluctant to make the change from face to face to online, and like many others in our sector, it felt a huge struggle to meet the demands of day to day whilst undergoing vast transformation. We watched in horror when many of the support services we trained were left to deal with challenging, complex situations without adequate support and equipment. We heard many stories of the personal challenges people faced balancing the need to protect their family, with protecting their community. Their stories motivating and inspiring.

Despite these challenges in 2020, our service reached and trained over seven thousand staff and volunteers and delivered over 600 programmes. However, we were not able to reach all services in our community, or at times, have the impact we aspire to. Many services experienced digital poverty and struggled with the skills to access online learning. Others struggled to understand the etiquette for online learning, leading to poor commitment and engagement. Some struggled with such huge workloads that it was impossible to undertake skills development.

It has been a huge learning curve for us, but some of the triumphs are that we are now able to reach more people, be more creative in our learning design and offer a more flexible and accessible service. In addition, we are now able to benefit from the power on many voices, access more experts by experience, made possible by the collaboratively power of technology. We have also been able to learn from and support situated practice, through better accessibility. We have been driven far more by learners dictating their own learning needs, rather than taking a top-down approach. All of this has meant that we have a far greater impact in our work.

In this period of rapid growth, we have welcomed many new team members to our team and have immersed ourselves in learning, development, and reflection during this period. Through this process  has emerged a whole set of new programmes including our higher apprenticeships which are designed for service improvement.

During the year we gathered large sets of data so we could compare performance, pre and post pandemic. The outcomes are welcome and show that moving forward, the way is truly blended.

During this period, we have continued to gather impact data on our programmes and are already starting to see some excellent results. For example, from our Advanced Care Planning programmes some of the impacts we have seen include:

  • Being able to provide appropriate and timely advice to individuals and families about legal provisions related to advance care planning
  • Being able to carry out timely conversations in advance care planning

Or in our Safeguarding Enquiry Officer Programmes, some of the impacts we have seen.

  • Being able to support the process of MSP, particularly in complex cases
  • Being able to develop productive relationships with adults, (and others) to produce multi agency safeguarding protection plans.
  • Being able to confidently apply the legislation and policy that underpins adult safeguarding.

Our Social Enterprise structure has enabled us not only to survive, but thrive during this time, and has reaffirmed for us that we must adopt different approaches in our sector that consider the collective, not just the individual.

It is with great gratitude to those individuals and organisations that have been on this journey with us through this time.

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A New Kind of Dementia Apprenticeship

Beth Britton, one of the U.K.’s leading campaigners on dementia, writes about her review of our new leadership apprenticeships in dementia care and what she loves most about these ground-breaking qualifications.

Here is what she wrote:

One of the areas of dementia care and support that I am most passionate about is education. As a former carer to my dad, I know that many of the health and social care staff who cared for him didn’t have the type of dementia education I now advocate and teach as a campaigner and consultant, and that would have made a big difference to the way my dad was supported.

Reviewing the 3 Spirit Dementia Apprenticeship Programmes

It is with my passion for dementia education in mind that I was delighted to work with 3 Spirit UK earlier this year to review their Level 4 Apprenticeship in Dementia for Lead Practitioners in Adult Care and their Level 5 Apprenticeship in Dementia for Leaders in Adult Care. I’ve known Caroline Bartle, who founded 3 Spirit, since 2014 when we met at the Alzheimer Europe Conference, and from following her work – predominately via social media – it’s clear how passionate she is about dementia education. The sheer volume of free resources 3 Spirit have created and shared over the years is testimony to that.

When Caroline approached me to review the 3 Spirit apprenticeships programme, she explained that through her doctorate she is looking at how practice can be impacted by learning interventions. This focus has become the driving force behind how the learning experience in these apprenticeships has been designed, and I was intrigued to find out more.

Why are these leadership apprenticeships so valuable?

Our experiences with my dad’s care, and my subsequent professional experiences as a consultant, have underlined to me the importance of good leadership in health and social care organisations. Investing in leaders informs the culture of care within organisations, and that directly impacts upon the people who depend on those care and support services and their wider families.

Of course the health and social care landscape is awash with training, but there are elements in the 3 Spirit apprenticeships that I find really exciting from a personal perspective. Most notably, that the Level 4 programme includes an Expert by Experience Month, which focuses heavily on meaningfully engaging with the creative arts (something my dad would undoubtedly have benefited from staff doing more with him), and that it’s intended (providing partnerships can be fostered with peer support organisations) that both Level 4 and Level 5 learners will be mentored by people living with dementia. 

I have always said that the greatest learning in dementia care comes from working with people living with dementia, and this type of mentoring is a really progressive step in dementia education. The Level 4 programme is also being delivered in partnership with the Life Story Network CIC, a connection I originally made for 3 Spirit and one that I am delighted to see has resulted in the type of joined-up working that is so important if we are to bring the best of what different organisations offer together rather than us all working in our own silos.

Making a Difference to Quality of Life

What else do I love about these apprenticeships? They have quality of life outcomes for people living with dementia and needing support at their heart, they have the aim of directly impacting the day-to-day practice of learners that will benefit those they are supporting (including each learner undertaking a service improvement project which is supported and mentored by the 3 Spirit team), they are about implementing progressive best practice that is rooted in compassionate approaches (in my view compassion is still so underrated in health and care services), and they take a holistic standpoint that supports the entire health or social care service that learners are working in.

As you’d expect, launching anything new in these unprecedented times means taking full account of how COVID-19 is impacting us all. The ongoing learning from the pandemic is included in the curriculum for apprentices, and 3 Spirit – like myself and most other training providers – are utilising digital platforms to ensure that training can be safe but also still provide that all important peer-to-peer learning.

At a time when it’s more vital than ever to retain valued practitioners and leaders within health and care services to support people living with dementia – who have been severely adversely affected by COVID-19 – these apprenticeships are, in my view, a really positive step forward for staff and service development. I also hope that they form a blueprint for training providers that means more widespread working with people living with dementia in the future.

About the author:

Beth Britton is an award-winning content creator, consultant, trainer, mentor, campaigner and speaker who is an expert in ageing, health and social care https://www.bethbritton.com

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Trauma, Anxiety and Sleep Issues in Autism

A blog on Trauma, Anxiety and Sleep Issues in Autism by Andy Rotherham

It is not uncommon for Late-Diagnosed Autistic People to present with symptoms similar to what would be expected in someone who is experiencing PTSD.

Although different in origin to PTSD the relentless piling up of anxieties and trauma that occur in an undiagnosed Autistic person’s life can still be seriously debilitating.

I speak openly and often in training sessions about incidents in my past that caused me such trauma. They all boil down to one thing though; communication.

A lifetime of being misunderstood, misinterpreted, having your morals and intentions constantly questioned. Having your intelligence incorrectly assessed because you can’t communicate it in the same way as your classmates. Being tongue tied when put on the spot, and being slow in group conversation because you are still processing all that has been said and are behind the arc.

Can you imagine the frustration of this happening to you constantly? Having to endure this? The more you try to explain they have you wrong, the worse it gets.

Some of my earliest memories are lying in bed crying myself to sleep with a painful knot of anxiety in my gut. It would be from a playground confrontation, or maybe a teacher who just didn’t get me at all. I learned from an early age not to behave in what I now know to be an Autistic way. It would only lead to punishment if I did. And of course that punishment, usually physical and brutal, added to my frustration and anxiety. This translated into poor, anxiety laden sleep. And of course even now if I am tired and sleep deprived my Autism is far more visible and obvious.

After I was diagnosed as Autistic at the age of 50 I had to deal with this Anxiety. In applying for help I was advised to ‘play down’ my Autism and specifically ask for help with Anxiety. My Autism was only mentioned as a foot note when I asked for a counsellor who would be familiar with Autism.

By adapting the way I presented my case i I managed to get some CBT (Cognitive Behavioural Therapy) sessions. For me it worked well. It gave me a way of dealing with this Anxiety which, by that time, had made me chronically ill both mentally and physically. I learned to apply pure logic, something that comes naturally to me. Did someone say Vulcan???

I was able to dispense with all the specific incidents that had traumatised me as they resurfaced in my memories.

However their indelible footprint still remains to this day and manifests itself in different ways.

My anxiety is pretty much under control, and I am careful not to let new misunderstandings that occur to linger in my head. I either try and solve it at the time, later when I can be clear, or walk away knowing I did my best.

However the thing I still haven’t got to grips with is poor sleep and nightmares. They are no longer about specific incidents from memory. They tend to be scenarios that my unconscious mind makes up that brings the anxiety back. It usually follows the pattern of being either misunderstood or finding my place, whether it is my barrack room or my office and belongings have been interfered with. Sometimes I have been replaced and no one told me, or I have retired but they don’t accept that fact and keep bringing me back. Most of these are based loosely around things that did actually happen to me.

I try my best to deal with this through lucid dreaming. Before I fall asleep each night I repeat a chant to myself that I am no longer in the services or working for my last employer and that they have no power over me. Sometimes this works, sometimes it doesn’t. Sometimes I am able to interrupt my own dream by lucidly taking control and reminding myself that I am no longer in their control.

I have been in more than my fair share of tragic events. I have witnessed the aftermath of many violent deaths. I have been in more life threatening situations than I could count. Yet none of that troubles me.

Following a major breakdown at work my employer compelled me to complete a full Psych Evaluation. The results of this test showed very high scores for both Autism and PTSD.

They then made me see a GP who worked for them via their Occupational Health Dept. He led me back through some of the incidents I mentioned above and asked me if I ever dream about these. The meeting ended up with him screaming at me that I could not have PTSD if I am not troubled by such things and that I could not possibly be Autistic if I was able to work in such a job. Which of course added to my anxiety and trauma…

I was eventually able to get my Autism diagnosis through a referral from my GP to an Autism Consultant as a Private Patient.

We need to rethink about how late diagnosis of Autism affects us. To diagnose (If you are lucky) and not offer any specific support in the aftermath is not helpful. It is the start of a journey, not the end.

It took me a year to get my head around the implications of the diagnosis and deal with the Anxiety I have spoken about.

I am in a happy place now in my life. If I can find a way to deal with these nightmares my life will be pretty much perfect. Although I find talking to my Wife about my dreams helps I am still searching for a permanent solution.

Andy Rotherham

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