Our Campaign: Prevention Through Education

Our social care services flex and bend under the weight of increasing care demands. More people need care and their care needs are more complex. People need to think on their feet, learn to adapt and work in ways that can impact powerfully on people’s lives. Our social care services are over stretched and mostly underpaid. Increased challenges in workforce development has meant that technology is being used in creative ways to stimulate learning and conversations in busy environments.

We are a social enterprise and we have been self-funding the development of educational resources which we share freely to organisations to start conversations about important topics. Funding training can be difficult and care services are often focusing on just having enough people to do the job. The environments are busy and the job is demanding and complex yet requires a great set of skills.

Our learning resources are designed to work in busy environments, to chunk learning in bite size, and to be easily shared. The aims of our resources are to encourage people to think differently and to develop the skills to provide care and support that is empowering, proactive, connected and compassionate. We aim to change hearts and minds and to tackle ignorance and discrimination by engaging people through visually eye-catching resources.

Developing and funding these resources is not easy. Because care is complex often the development of resources requires great collaboration, across different people and services so can be costly. Lack of public funding, a highly competitive industry and a general lack of trust and a sense of togetherness can put obstacles in the way of collaboration and developing good quality learning resources.

We need to work creatively and collaborate broadly to tackle some of these challenges. One of the ways that we do this is by “sharing to create”. In the development of our resources we collaborate broadly. We consider our role as a catalyst as we aim to bring practical solutions to diverse work settings.

To date we have produced over 100 different resources which are shared around the world across social media. Some of the topics have included:

  • Autism
  • Safeguarding
  • Dementia
  • Culture of care
  • Working with Challenge
  • Hearing and Sight Loss
  • Health and Safety
  • Learning Disabilities
  • Loneliness
  • LGBTQi
  • Mental health
  • Emergency First Aid
  • Person centred planning
  • Social Work

However, our work is not done yet! We need your help to continue to make a difference through our work. When designing our resources, we aim to promote human rights, encourage inclusivity and challenge oppression. We are delighted to learn that our resources are now not only used by the social care sector but also by individuals wanting to make more informed decisions about their own lives.

Our resources make a difference in people’s lives. We have had an amazing response to our resources. Here are some of the things that people have said:

  • They have inspired me.
  • I share the infographics via Twitter and have received many positive comments about the wonderful information that is provided. In addition, they make my job as a Memory Care Program Facilitator much easier as the infographics are the written form of what I teach!
  • I am a care home manager. It has not only aided me in supporting the individuals within the home but also my staff team in giving them guidance and support. My team also benefits from them individually and as a group in improving understanding and the quality of care they deliver.
  • Helping me to overcome and manage my feelings of frustration and anger and guilt as observed through your advice on how to better modify my reactions and behaviour to cope with my mum’s dementia.
  • They are easy to read & understand and when shown to members of the public (not involved in the care industry) the message is easily relayed.
  • I deliver dementia awareness training in my trust and find they have a positive impact in training as they are so visual.
  • I have helped raise awareness in my child’s school and friends and family.
  • Reminding people that dementia affects all communities.
  • Often very useful if talking to a carer of a person with dementia, to be able to show them a visual representation of what’s being discussed. This can make it easier for them to retain the information.
  • The information is very simple, very clear and easy to understand. I don’t have to read pages and pages just to find out about one thing.

Each of our resources costs over £200 to create which we have funded independently over the years. We would like to crowd source a further £5,000 so that we can make a further 25 on these topics:

  • Older people and autism
  • Mental health and autism
  • Mental health and learning disability
  • Positive interventions in dementia care
  • Loss and dementia
  • Diabetes
  • Risk reduction in dementia
  • Support staff (looking after yourself)
  • Strength based approaches to support
  • Mental Capacity and Liberty Protection Safeguards
  • LGBTQIA+
  • Well-being in the workplace
  • Safeguarding
  • Care partners (looking after yourself)
  • Links between physical and mental well-being
  • Mental health and substance misuse

If you have used our resources in the past and found them useful, please contribute to our project so that we can continue doing what we do. These resources will be made freely available at the end of the project to anyone that would like to access them. They can be shared easily across social media and contain lots of embedded links to further information.

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Autism & Friendship

I have been mulling over what to say in this blog for a few weeks now. If ever there was an emotionally difficult subject for me to write about, friendship is it.

I will start off by saying that my childhood was very painful, but things did get better in the end. There is a happy ending, I promise!

From a very early age, it was very obvious that I couldn’t fit in with any friendship groups. This didn’t stop me wanting desperately to fit in though. It is only now, following my diagnosis at the age of 50, that I am able to look back and understand why I was struggling and what I was doing. I had no idea, and still don’t really, of how to act in that kind of social situation. It was all a great mystery to me so I started observing and copying behaviours, phrases, speech, remembering jokes that made people laugh. Of course, a joke is only funny if the situation is right and the right inflection is put on the right words. Not good if you have a monotonic voice and can’t read social situations. In retrospect, I was trying too hard and through all that social masking my own identity was lost, to the point I didn’t even know who I was. Consequently, the reactions to me ranged from strange looks, raised eyebrows to social exclusion. This led to me being more desperate to fit in. And when I couldn’t read the body language and verbal brush offs it would often lead to violence.

I lost count of the times I was beaten up or chased home from school by some mob or other. Of course my knack for saying the wrong thing, sometimes deep and hurtful, without realising, didn’t help matters. This social exclusion and bullying still remains to this day. What has changed though is the way I deal with it.

Because people don’t always understand me, my problems with understanding verbal instructions and that I am not good at explaining things, they also seem to get the impression that I am not very bright.

I catch myself social masking sometimes and trying to be too nice to people who aren’t nice to me. They seem to take this as a sign of weakness or subservience. I try my best not to let it bother me.

Of course with co-morbid anxiety issues despite my best efforts it does hurt. I wish I could dismiss it as what it is, a reflection of who they are and their issues rather than mine. However, I promised you a happy ending. Here it is;

Being so open and honest about my Autism diagnosis led to a shift in my friendships. Some people I thought were good friends turned out not to be so. They couldn’t handle what I was saying, although being fair I did obsess over it for a year while I sorted it all out in my head. Some said some really hurtful things and I also learned that quite a few friends only wanted to be around me for what they gained.

I started investing my time in people who accept me exactly as I am and who are willing to allow me to be Autistic in their company.

I now have some wonderful and loyal friends. We don’t see each other for months, but pick up like we haven’t been apart immediately. I don’t invest time in people who don’t get me anymore. Life is too short to do so. They soon fade away. Those who stick with you are the ones who deserve your time.

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Fellow of the Royal Society of Arts (FRSA)

It is an honour to be invited to become a member of the Royal Society of Arts (RSA). The RSA do really cool initiatives like bringing likeminded people together to harness power for social good. A network of people who are great thinkers, innovators and social reformers. I will become a fellow alongside some of the greatest thinkers in our sector. I will also get to have the letters “FRSA” added after my name, which stand for a “Fellow of the Royal Society of Arts” (in comparison to my doctorate studies, these seem like easy stripes to earn).

However, looking back on the last few years, it has been far from easy, and far from an individual effort. Since starting the 3 Spirit collective, I have been joined by many ‘free spirits’, and in all those years not one person has left the collaborative which is testament to me, of the strength of our bonds, and of our service. Even those who retire remain part of the 3 Spirit family. I am grateful that we continually learn from their wisdom.

It has always been important to us that the people and businesses that we work with are committed to human rights, have a value-based approach to their work and are creative and compassionate – something easier said than done in the current sector climate. Increasingly, we are seeing local authorities focus on cost disproportionately to quality. We are increasingly being called into services on a reactive basis (following CQC inspections) to carry out our remedial training when we should be investing in developing skills for prevention.

It takes staunch commitment and vision sometimes to keep walking up, what seems to be a very steep hill. Lack of public funding, a highly competitive industry and a general lack of trust and a sense of togetherness can put obstacles in the way of developing good quality training. I believe that we ought to think creatively and collaborate on a wider scale to tackle some of these challenges. One of the ways that we do this is by “sharing to create”. We have an active knowledge management strategy that keeps us learning, often in the most unusual of places. Over the past few years, we have invested heavily in each other, and in each other’s learning, developing a ‘collective consciousness’. We have shared our work openly and at no cost and have generally enjoyed the feedback and comments we get from the wider community. We delight in the feedback on the impact our resources have had on individuals’ lives. However, at times, we are still insensitively challenged. We value research, but use this to engage with practice to create new knowledge. We consider ourselves catalysts, bringing practical solutions to diverse work settings. To put our work out there is to harness the power of many, and to listen to those voices which are largely marginalised and all those that have interesting things to say.

It’s been almost 3 years since we turned the company into a social enterprise. When we did this, we started to have much more of a focus on the impact of our work. Out of 100 people we surveyed last year 70 gave us 10 / 10 for the quality of our training and 30 gave us 9/10. However, whilst we are delighted at this, the true measure of our work is in our social impact.

Our Social Impact Survey showed that we are making the following impacts in our community:

Our Social Impact Survey shows that our infographics are used for:

These are some of the comments that we got from our Social Impact Survey:

Can you give any specific examples about how our infographics have impacted positively?

  • They have inspired me.
  • I share the infographics via Twitter and have received many positive comments about the wonderful information that is provided. In addition, they make my job as a Memory Care Program Facilitator much easier as the infographics are the written form of what I teach!
  • They are easy to read & understand and when shown to members of the public (not involved in the care industry) the message is easily relayed.
  • Spreading knowledge to others.
  • They give great advice, better understanding and knowledge. Increases confidence for care staff.
  • By gaining further knowledge assists me to carry out my role with added confidence and efficiency.
  • Impacted my awareness.
  • Demonstrating the impact of caring.
  • Positive informative, visually stimulating.
  • I have helped raise awareness in my child’s school and friends and family.
  • Reminding people that dementia affects all communities.
  • Helped me to think of activities to use with clients.
  • Helping moving grandma.
  • I am a care home manager. It has not only aided me in supporting the individuals within the home but also my staff team in giving them guidance and support. My team also benefits from them individually and as a group in improving understanding and the quality of care they deliver.
  • Often very useful if talking to a carer of a person with dementia, to be able to show them a visual
    representation of what’s being discussed. This can make it easier for them to retain the information.
  • Helps to reinforce in house training topics in a fun way.
  • Used for delirium package, used to help fellow colleagues access key issues or structure their work or thinking. Saved me time constructing my own.
  • Helping me to overcome and manage my feelings of frustration and anger and guilt as observed through your advice on how to better modify my reactions and behaviour to cope with my mum’s dementia.
  • Used to capture complexity in a succinct way.
  • Getting conversations going about the language we use when talking about BPSD and helping staff generate new positive approaches.
  • Staff training, both in their professional and private lives
  • Negative vs positive language – have used the infographic to support carers to communicate more effectively and change views on negative labelling.
  • Simple and clear graphics support staff understanding and help me to focus on what is important to and for a person.
  • The feedback and sharing of your info graphics is always great when I put one on social media.
  • Students benefit enormously from all of the infographics especially those relating to person centred care in
    dementia- makes it easier for them to grasp a holistic view.
  • I deliver dementia awareness training in my trust and find they have a positive impact in training as they are so visual.
  • I use the infographics to develop my understanding of some subjects and I share this with my wider community.
  • They stimulated conversation and questions when I displayed several of the infographics During Dementia Action Week at the Acute Hospital Trust.
  • Shared some with families such as communication and dementia carers and dementia.
  • Your infographics are clear and eye-catching, and they are meaningful – many of my audience respond well to them. Personally, I find them to be very informative and I hope that my audience will learn from them as the share them too.
  • They are all so easy to understand & visually beautiful. They set your work apart from others Thank you.
  • The information is very simple, very clear and easy to understand. I don’t have to read pages and pages just to find out about one thing.
  • I share your infographics through social media. Reliably, yours are among those receiving the most re-
    tweets/shares and positive comments.

If you have received training from our organisation what difference has this made to your practice?

  • I received my education from Indiana University. I can state that your Infographics have a positive effect with the caregivers and also PLWD.
  • I feel I have a much better understanding of Dementia and I am confident to educate others of what I have learnt in a more detailed and informative manner.
  • It’s really helped. As the dementia champion I feel more knowledgeable and feel more confident in providing the best care for people with dementia.
  • Made a huge impact in the best possible way! I now have so much knowledge and understanding that people will approach me for advice.
  • Confident, competent, knowledgeable, engaged staff.
  • It has improved the quality of care we deliver. The training is always great, and the IDEAS team do an amazing job in identifying training/ areas of awareness needing to be highlighted.
  • A much greater understanding resulting in a more compassionate relationship with clients.
  • Enhances and maintain safe practice and empower staff to challenge poor practices.
  • My view about caring changed into good, and made me wants to study nursing to progress my career to helping people in the community and also at home.
  • Improving language used to communicate about Dementia, better skills of recognizing warning signs of distress and managing behaviour that challenges.
  • I’ve learnt a lot of new skills from how to progress in my work place and succeed as a care supervisor.
  • Your autism course was one of the best courses I have attended and having Andy (autistic individual) in to explain his story made things a lot clearer.
  • The training was very useful and the trainer was excellent.
  • The last bit when the autistic person told us about his experience with autism was great.
  • I found the training like a revelation. The presentation by the autistic person was eye opening and very beneficial.
  • I have felt the training very useful as I learn well visually. The trainers have always made me feel very comfortable and the atmosphere is relaxed. I love the ways in which questions can be easily introduced into the learning session and if not always relevant for the particular matter it will still be addressed even if it is later in the course. No one is made to feel silly or lack skills as most of the coursed have a diverse mix of people attending. I have enjoyed the learning session as it has given me more confidence in which i am able to carry out my work.
  • Following equality & diversity- it has allowed me to integrate and discuss current discrimination issues and able to ensure I am inclusive with activity planning for our community groups for people living with dementia.
  • Have made a list and handed to the home manager so that we get an outstanding in our next CQC inspection. This list is what is missing at the home.
  • We have found that going on most of your course’s we are able to cascade all the information to our other staff members. We have been able to share all the Nutrition information with the staff and residents here at XXX to educate and support them. The Dementia course was great to look out for sign and symptoms.
  • The trainers are so engaging and knowledgeable I am always so keen to sign up to the next available course. Trish delivered my Safeguarding training which was so enjoyable and very engaging. Therefore when I saw she was delivering the learning disability course I had to get on to it.
  • We have improved our practise a lot by reducing admission to hospital, reducing antipsychotic, reducing falls. Therefore we have improved communication with staff.
  • It was extremely useful to attend training delivered by someone who understood the political climate and could debate how changes to the policies and procedures had come about rather than just delivering an overview.
  • There were times when I was bullied, this training has helped me get my confidence back and to deal with situations myself.
  • It really did open my eyes to the whole dementia topic. Tricia was great at delivering the session. Entertaining and informative. Thoroughly enjoyed.
  • This Course has personally supplied me with tools to cope when assessing the level of care necessary for these very vulnerable people. I have a husband who sadly has very aggressive Alzheimer’s disease so for me the study day with Caroline has been hugely helpful.
  • Was able to put some useful information and techniques I learned into practice immediately. Great course.
  • I wish all trainers could deliver learning so effectively and enjoyably. Best trainer I’ve ever had in my career.
  • Even better than day before loved it, so interesting I learned so much could have stayed longer. Went so quick.

And Finally, this is what people had to say:

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Andy Rotherham’s Autism Blog – The Gifts of Autism

For this edition of my blog I will be exploring and explaining the ‘gift’ side of Autism. This is something that is sadly overlooked by many employers, resulting in the full potential of the Autistic workforce being undervalued and under-utilised.

My own story very much fits this pattern. But more about me later. First some background;

Background

Autistic people often feel invisible in society and as such are ignored or dismissed. Our skills and intelligence are very rarely recognised because we don’t communicate in a Neurotypical way. 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 himself said, “It seems that for success in science or art, a dash of autism is essential.”

Personal Experience with Autism

I was diagnosed as Autistic almost 6 years ago, at the age of 50. As one who slipped through the proverbial net and who struggled to understand both myself and the reactions of other people to me, the diagnosis was quite a revelation. Once I had come to terms with what it meant, researched it to the “nth” degree and dealt with the co-morbid anxiety I had been living with my entire life to that point, I made a decision: To hell with what had gone before and all the people who hadn’t recognised my talents or intellect. I was going to make my Autism work for me. I was going to take the things it gave me and use them to make my life from that point happy and fulfilling. So, what did I do?

  1. I got rid of all the things and people who made me unhappy. The first thing I did was quit working for an employer who had caused me great anguish by failing to support my sensory needs and by refusing to accept that I could even be Autistic, despite having a copy of my official diagnosis! I didn’t fit with their preconceived ideas of what Autism is.
  2. I cut communication with people who brought drama and conflict into my life.
  3. I rebuilt myself both physically and mentally to a healthy place.
  4. I then set about making myself happy.

I started looking at all the things I wanted to do as hobbies, but never had the time. I have always loved music, now I could take the time to teach myself to play to a level I was happy with.

I loved guitars and had an idea swimming around in my head for some time for a custom shaped bass guitar. A Yellow Submarine, as per The Beatles animated film. Trouble is I am the guy who was kicked out of Woodwork at school as I was told I would always be useless and never be able to make anything with my hands. It was going to be a sharp learning curve, but I believed I could do it.

Before each stage in the project, I researched thoroughly. I found that I have the ability to think through an action and rehearse the method many times before I would put tool to wood. I can carry out these rehearsals during lucid dreaming. I can go to bed thinking about the problem and wake up the next morning having ironed out all aspects of the process to the point where I can do it without any further physical preparation.

Once I had the wooden structure complete, I learnt to paint it, with a mixture of techniques from spray can to fine brush work. I taught myself how to do guitar electrics, fitting the pickups and controls. Then came the stringing of it and setting the bass up so it played easily and sounded good.

I also found that I could use this lucid dreaming technique to learn how to play songs. I found this out when I was struggling with a song and I abandoned my efforts and went to bed. I remember very well in my lucid dream that I was stood with my bass on and the song was playing. I could pause, rewind and isolate certain instruments, as if I was in front of a multi-track mixing desk. I replayed a note I was struggling with, looked down at the fretboard and moved my hand up and down until I found it. Then I moved onto the next note. I woke up in the morning and told my Wife what had happened. I couldn’t wait to find out if it would translate to actually playing it. We both went into my music room, I picked up a bass and sure enough I was able to play the song perfectly!

As people learnt of my new skills, I started getting requests from fellow musicians to work on their guitars and basses. This led onto being approached by the Guitarist of a popular band and asking me to service and set up his guitars for him. I relished the opportunity, although of course there is self-imposed pressure to be perfect in everything I do. In my work for him this is heightened. I was also asked by the band to work ad-hoc at their studio to help with the day to day running of the place when needed.

This last summer we carried out a big building and renovation project at their studio complex, which saw me build internal walls from timber and plasterboard. I learnt how to do it the evening before from a 10-minute YouTube video, most of which I fast forwarded through. And, yes, you’ve guessed, by building them many times in my sleep…

The real upside of this hard work was I could set up a workshop in one of the newly partitioned rooms. I built a guitar workbench from left over timber in one day and covered it with carpet and a large ceramic tile for soldering on. I now find myself employed for a band whose music I love. People I both like and respect, and who really value me for my skills and abilities. I am looking after the whole guitar and bass collection the band own. Each day brings its own set of challenges, but I love learning as I do them. I have found that I have a real gift for restoration particularly. I am currently bringing back to life a beautiful 1976 Rickenbacker bass. Yesterday was a Spanish/Classical guitar.

Of course, being Autistic, I am a collector and have a house full of guitars and basses of my own… Although I do need to draw this in it is a small price to pay to have discovered gifts, I never knew I had, skills I never thought I could learn and a hobby that has turned into my dream job!

Conclusion

There are reasonably common gifts that accompany Autistic individuals, like 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 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 us all however is Out of the Box thinking, the ability to think freely without the constraints of established thinking or social norms.

What society and the employers who haven’t caught on yet need to understand is that the Autistic Mind is a relatively untapped resource. Given the right environment, encouragement and tasks specifically related to the gifts they possess we are a most loyal, productive and hardworking addition to the workforce.

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

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Life in High Definition (CBD Oil & Autism)

Background

CBD oil (Cannabidiol) is a derivative of the Cannabis plant. There are two types of CBD, with or without the psychoactive substance THC (Tetrahydrocannabinol). CBD without THC is legal in the UK and can be bought at health food shops and online.

Andy is Autistic.  He was diagnosed as an adult and has embraced his Autism, as he has many strengths and talents that are significantly enhanced by his autistic experience. He gives talks to professionals as part of the Autism Training that 3 Spirit UK provide. Through this and his online activities, Andy promotes understanding of Autism from an Autistic perspective.

Recently Andy has been conducting an experiment to see if CBD can help him cope better with his more obvious signs of Autism.

Here is What Andy Discovered

“Like many Autistic people I try my best to blend in to a Neurotypical world without displaying my Autism. I stim only in private for instance…

Autism isn’t logical. It would be so much easier if it was! Here is my dichotomic dilemma;

The main problem I have in dealing with my Autism is my sensory differences. Too many sources of noise particularly screw with my ability to think, make rational decisions and with my ability to communicate effectively.

Which wouldn’t be a problem if I hid myself away from the world.

However I am a Musician and play live often…

When I first started gigging regularly I used to really struggle. The close proximity of the audience, the pressure of playing well, a particularly unsupportive band and the raucous reaction of the audience to the energetic music we played. It all added up to make me a tight wound ball of nerves throughout the gig.

I have learnt over time to use certain coping methods to get me through and towards the end of the gig. I am sometimes comfortable enough to join the audience on the dance floor as I play!

However there is one aspect that I couldn’t change. The day after a gig I would be zombie-like. Unable to communicate properly with my family and needing peace and solitude to recharge my ‘Social Battery’. After a particularly stressful gig it could take me 48 hours to recover to my ‘normal’ state. It is at these times when I would be visibly and more obviously Autistic.

There is a lot of anecdotal information on the internet about the effects of CBD on various conditions. I saw a few people who had experienced a decrease in some of the features of their Autism after taking it. It became available to buy over the counter in the UK so I decided to try it out…

The first time I took it was a day when I had to attend two events in one day. An outdoor gig and ceremony to unveil a statue in the afternoon, followed by a sold-out gig at my local theatre that evening. I was in a state of extreme social anxiety that afternoon, a feeling that had been building for a few days.

As everyone was crowding around to catch a first glimpse of the statue I took myself off to the local health food store and bought some CBD oil. We left for home and I took some. 3 drops, under the tongue and leave it there for a few minutes before drinking.

By evening I felt much better. We were on the front row. I even got chatting with the people around me and became friends with 2 of them. This was quite a revelation. It was wonderful just watching the show without thinking about how close the person next to me was, how loud they were talking, did they have perfume on, had they eaten garlic???

Although it did have a profound effect that evening I found that subsequent doses didn’t have the same effect. Further research told me that the CBD I had bought is actually a really low dose.

Then, a few months later we were on a holiday and we took ourselves to Glastonbury for the day. We went in a typical Glastonbury shop, hippy clothes, juggling materials and drug paraphernalia like bongs and pipes. On the counter however was a display of CBD oil of various dose strengths. From my research I knew that the ideal strength was 500mg. I bought a bottle for £38 and looked forward to trying it.

I started taking it on the day after I play a gig and found that it removed the brain fogginess and pressure that I felt. My recovery time was cut and by afternoon or early evening was almost back to normal.

Fast forward to this weekend just gone;

I played a gig some distance from home. I arrived home in the early hours and needed something to eat and drink. I decided that it would be a good idea to take CBD at the same time. I did. I was anxious about a gathering my neighbours had invited us to the next day. It was a drop in type event for the neighbours to all meet and chat. I had pre-warned them that I may be too exhausted to attend. This relieved some of the pressure.

I got in bed after 3 am and slept the best I have slept for some time. I woke in the morning feeling quite fresh, certainly not the head crushing feeling I would normally endure. I took some more CBD with breakfast.

That afternoon I felt more than able to attend the neighbour’s house and be sociable. They have recently done some building work and they have two young children. They also had a friend visiting with her three children. Acoustically the new build is really echo-y. No soft furnishing or curtains to absorb the sound and a hard floor to reflect it. Laughing, running, screaming and crying kids being kids and trying hard to concentrate on lip-reading what people were saying to me.

This would normally be enough to see me running to the hills, to shut myself away to recover. However I was able to cope with it. It was a marked difference that was remarked on by my wife. It felt good to be ‘normal’ for once.”

Conclusion

“I have found that taking CBD oil of 500mg strength reduces my social anxiety, helps me to sleep and dramatically reduces the recovery time I need when socially exhausted.”

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Why We Need to Support Practitioners In Best Practice In Hospital Discharges

The headlines on hospital discharge make for depressing reading. Prolonged stays in hospital are associated with worse health outcomes and increased care. Ten days of bed-rest in hospital, is the equivalent of 10 years of muscle ageing for people 80+. The numbers of people waiting in hospital for support on discharge have significantly increased over the years with around £820 million a year delayed hospital stays (National Audit Office).

Levels of demand on health and social care services are rising while Adult Social Care departments have had their budgets significantly cut. There is sector wide recognition that more funding is required, and this sense of urgency has permeated government ranks. The system needs more investment but this is not a single fix. Much closer and integrated working between all organisations involved in hospital discharge will help to reduce delays and there have been some excellent initiatives nationally. Many programme managers and project managers have been recruited through Sustainability and Transformation Partnerships and Better Care Fund Plans to identify with senior managers local solutions to the complex issue of hospital discharge.

However, my experience working for many years in this area has been that information on new initiatives and knowledge around best practice in hospital discharge is not always being cascaded down to those directly responsible day to day for supporting hospital discharge, in part because of challenges to release staff from frontline practice. Often those working directly with people have no idea about the vision and plans for better integrated solutions to hospital discharge let alone are invited to be part of the conversations about best practice in hospital discharge.

My experience is that many practitioners are not made aware of some of the pilots and new services set up to support hospital discharge. Indeed, working with Adult Social Care Departments and NHS acute and community organisations over the past few years on hospital discharge it’s clear that many practitioners and their managers are still unaware, for example, of NICE guidelines and recommendations around hospital discharge, reablement and intermediate care and best practice evidenced nationally by organisations such as NHS Improvement, the Kings Fund and the Social Care Institute for Excellence.

A National Audit Office report published in May 2016 stated that “Health and social care providers have made limited progress in adopting recommended good practice”.

Basic good practice recommendations such as starting discharge planning early, identifying blocks to discharge early in the admission and making sure the person is informed and in control are still not consistently adhered to. Often those facilitating discharge are not supported to work together with their community colleagues to ascertain how people were being supported before admission or to ensure they are properly supported on discharge. Far too many assessments and decisions for long term care and whether people will benefit from reablement and rehab, for example, are still being made in an unfamiliar hospital environment despite the push for discharge to assess models.

A couple of weeks ago I was charged with delivering training on recording delayed transfers of care to front line local authority workers. They were clearly very committed and passionate about providing good hospital discharge support. What they wanted was to know about the technical aspects of the legislation, so they could “challenge” their NHS colleagues on numbers of DToCs. What they needed was to understand the impact on health and wellbeing of those people delayed in hospital while they “challenged”. They needed to be empowered to develop closer working relationships with their NHS colleagues both operationally and in understanding each other roles and remits and increasing their knowledge and skills around best practice in integrated working and hospital discharge.

Without staff being supported to develop in line with evidence-based practice, ways of working will remain static with staff from different organisations continuing to practice inconsistently and separately despite the best efforts of the senior managers and project managers to “integrate” services.
Change has to come from the bottom up as well as at a senior operational or strategic level, with health and social care front line workers being given the skills, knowledge and forums to learn together about evidence-based practice in hospital discharge and intermediate care services. Nothing will change otherwise and no matter how much money is invested and how many great initiatives are piloted, and many people will continue to experience poor hospital discharges.

Claire Collins

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Positive Risk Taking – Trish O’Hara

Most of the choices that people make in life naturally involve some element of risk. Avoiding risks altogether can limit life opportunities, and impact negatively on quality of life.  People want choice and control for themselves and safety for those they care for. This is because risk is a concept that tends to have negative connotations, but people take considered risks all the time and gain many positive benefits.

People perceive risk differently, including people who use services, practitioners, and families. This can be difficult for social care practitioners and confusing for individuals and families. Therefore, adopting a balanced approach at a practice level can be a challenge. Balance and proportionality are vital considerations in encouraging responsible decision making.

In our work streams we have been considering:

  • What skills do staff need to properly develop positive risk taking in their practice?
  • How can learning programmes be developed that inspire and motivate practitioners to take a bold approach to positive risk taking?
  • What systems need to be in place to enable a responsive approach to positive risk taking?

Getting out of bed, and all that it entails – getting washed, dressed having breakfast, and taking the bus to work – carries risk. Though, staying in bed could still involve both psychological and physical risks.

Back in the mid 80’s the social care sector often ignored risk assessments.  There were risk assessments in place for health and safety of the building and staff. However, what was lacking was person centred risk assessments to support  the people using our services to positively live their lives.

I recall us supporting  extremely complex individuals to go to Glastonbury music festival.  We did this without a risk assessment, and this was back in the day when you could speak to Martin Eavis directly to get free tickets.   They were the days of ‘try it and see’.

By the late 80’s risk assessments were firmly and quite rightly in place to ensure staff were confident to support people to try new things, and live as full as life as possible.  Managers who would start a sentence ‘Yeah,  let’s try that,  let’s do a risk assessment’ with a smile.  It was as if doing the risk assessment itself was the incentive to make it happen.   Over time, I noticed that the sentiment of risk assessment changed.  The managers started to say, ‘oh no,  you  had better risk assess that’.   It seemed like the idea that risk assessment had become  a way of limiting people. The intention changed. Risk assessment should be used as a tool to support  empowerment, and innovation. It should also be used to listen to  those that need care and support.

Finding time to embark on meaningful co-production,  ensuring the person is an equal partner in the shaping of their services is likely to mean that people will be faced with more choice. Where people are faced with more choice this is likely to lead to options that introduce more risk.

So what is stopping our services effectively undertaking positive risk assessments, what are the barriers?

People perceive risk differently.   For instance,  it you ask nurses what is the main risk for older people in care homes,  they are most likely to say,  falls.  If you ask social workers,  they are likely to be concerned with risks to adequate housing or benefits.  If you ask their family, it is likely to be that they  are concerned that their loved one is treated badly. If you ask the person themselves,  they may be more concerned with losing their identity and/or purpose.  We come to the table with a bias based on role and relationship.

Getting the balance right requires professional competence,  partnership working and understanding that safeguarding is about improving quality of life as much as safety, and can only really work if we keep it personal.

Because risk assessment is considered a skilled endeavour,  we often see managers or team leaders completing the risk assessment from beginning to end from inside of an office,  rather than inside the life of the person.   Key-workers need to be trained to understand risk assessment and be part of the process, as they are often the people who know the person best.

There is also a real fear of being accused of neglect.   Staff also struggle to understand that what may be important FOR the person may be in direct conflict with what is important TO them.   A disproportionate response that infringes the rights of individuals to make their own,  albeit at times,  unwise decisions.   Often there is a lack of a working knowledge of the Mental Capacity Act and what it means to deprive a person of their liberty. A general lack of knowledge when and where to apply the law.

Ultimately,   risk is part of life and arguably the most successful people take many of them.   It is impossible to self actualise without taking risks.  It’s the only way to face the challenge of Everest.    Many of us would make it to the top if we were given the chance to do it at our own pace (maybe years),  using our own methods,  with the right people and with the adaptations required to help us along the way.     We would find our own peak and reflect on our own troughs knowing where we are,  where we have been and where we are going.

We will continue to challenge practice in our work streams, and get practitioners to really believe that positive risk taking is a fundamental core of practice.

Trish O’Hara

 

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Whose Responsibility is It? – Risk Reduction and Dementia (Bartle and Behrens)

Whilst attending a Dementia Partnership Board Meeting (our first in this area) to review their priorities, prevention was discussed. A member raised the point we should determine what we mean by prevention and suggested in some areas the evidence base was weak. The board had a range of stakeholders, and was inclusive and committed to developing meaningful changes. However, within this local authority, like many others, there had been funding cuts to the person responsible for ‘prevention’.  Reducing funding for risk reduction may save funding in the short term, but has long-term implications; possibly higher costs to both health and social care. So, whose responsibility is it to mitigate risk reduction in dementia. The individual, public services or is it everybody?

Three years ago, we developed our first resource: Dementia and Risk Reduction – see below.

It was developed from an excellent document produced by WHO in 2014, highlighting the international priority of risk management in dementia. Since then, our organisation has addressed these priorities through our work streams: training and consultancy and in the development of resources

During this time, we have debated whether to utilize the term ‘risk reduction’ or ‘prevention’ in the messages we give, as these words are sometimes used interchangeably despite having different meanings.

Since we have been highlighting modifiable risk factors on our programmes, our role appears to have evolved from simply being educators in social care to activists in health promotion. Sharing with our participants information for them to share with their clients, and which they may choose to act upon within their own lives.

In July 2017, The Lancet published a long-awaited paper on the ‘Dementia Prevention and Care’ by Gill Livingtone and colleagues (http://www.thelancet.com/pdfs/journals/lancet/PIIS0140-6736(17)31363-6.pdf):  A comprehensive review of the current evidence on modifiable risk factors in dementia care. For anyone working in dementia care this document will prove to be valuable; It is not a paper that you can skim read, it is succinct and relevant in many domains.

Risk reduction, for dementia, may be considered on three levels:

Level 1 (primary): Interventions targeted before symptoms present

Level 2 (secondary): Interventions targeted at individuals who develop Mild Cognitive Impairment (MCI)

Level 3 (tertiary):  Interventions targeted at individuals living with dementia and their carers. These interventions aim to slow the progression of the disease and potentially alleviate some of the burden, enabling people to maximize strengths.

Level 3 is where most of our work is targeted.  We educate front line care staff on strategies supporting people to maximize their potential, which includes enabling people to stay in control. When supporting individuals, this could be making changes to the social and physical environment and considering the relationship between health and social care factors. This area of work may not be viewed as risk reduction in the traditional sense, but it plays a fundamental role.

Level 3

In the publication, many interventions are sighted ‘care’. However, these interventions may be considered as ‘risk reduction’, carrying the same level of priority as level 1 and 2. Within Level 3, we can consider risk reduction more broadly in terms of reducing the risk of increased levels of care, hospital admission or admission to care homes; all of which have a significant impact on the individual and society, including a financial impact.

 

A number of ‘evidenced based’ interventions were sighted in the recent paper including (but not limited to):

  • Timely diagnosis
  • Cognitive stimulation therapy
  • Cognitive training
  • Cognitive rehabilitation
  • Environment adaptations
  • Assistive Technologies
  • Communication, engagement and person-centred care
  • Medication (moderate effect)
  • Carer support, education, and CBT
  • Sensory stimulation
  • Optimal end of life care
  • High intensity exercise
  • Safeguarding
  • Optimising hearing and sight loss

 

We develop resources for many of these interventions and raise awareness of them within our day to day training.

However, we must be careful about framing dementia only as a condition to be ‘managed’ as it is both stigmatising and limiting; it reduces opportunities for self-management and self-determination. Rather, a ‘management’ narrative is perhaps necessary to assist systematic support to ‘managing’ the complexity of dementia.  However, we need to be aware of different perspectives: dementia is multi-dimensional.

Perhaps as part of the risk reduction agenda for level 3, we need to consider:

What does dementia bring to individuals and communities? How can we reframe ‘loss’ as an opportunity? What can we learn about the positive power of vulnerability? Do diminishing cognitive skills lead to not being ruled by reason, but instead the heart, and if so what benefits might that bring? What does living in the moment, having insights and opportunity bring?

What personal resources are available to individuals to challenge the standard paradigm in dementia? Some of the negative connotations associated with dementia stifle opportunities. If we had a more inclusive society, how could this facilitate opportunities in individuals to develop personal resources, resilience, and capacities?

 

What, then, is the role of local authorities in using this evidence effectively in their work?

Level 1

  • Incorporate risk reduction strategies into the work with services that support people over a life time, such as learning disabilities (who have an increased risk of development of dementia). This includes risk screening people in their care and ensuring that training incorporates risk reduction
  • Where children are in the LA care a strategy should be in place to stimulate a life time love of learning (to build cognitive reserve).
  • Work with allied health services to support health checks for diabetes screening, weight management and hearing checks.
  • Consider specific modifiable risk factors (vascular) to BAME communities with targeted interventions.
  • Ensure that accessible information is available to the general population on risk factors and prevention strategies. Provide information accessible information to BAME communities
  • Make funding available to tackle social isolation in dementia and develop ways of measuring how effective this has been. Enforce NICE guidelines for Home Care, that relate to measuring outcomes, however, consider tackling loneliness as part of this.
  • Develop more integrated models of work. Work which is under way – however, skills development running to catch up.

Level 2

  • Work to embed risk reduction strategies in core training. Many individuals working in care and support services are already working with individuals that have MCI. L&D commissioners should ensure this is incorporated into their training programmes.
  • Ensure appropriate opportunities are available to people with MCI for engagement and to enhance cognitive skills through day centres, luncheon clubs, and community activities
  • Develop effective integrated working between health and social care providers to identify and address health factors in a timely fashion
  • Consider multi-model interventions which enable effective, integrated working between health and social care

Level 3

  • Consider inclusion and self-determination as risk reduction enablers
  • Offer comprehensive training opportunities to services to maximize on ‘evidenced based’ interventions. We are very fortunate in Hertfordshire as our local authority has long invested in this. We have developed over 17 different educational programmes which have targeted the list of evidence based interventions, together with tackling broader social psychological factors. Over the years we have trained over 13,000 people to think more broadly and to BE proactive in their work.
  • Develop their services to better support informal carers, recognizing the benefit and value of this in both economic and moral terms.
  • For commissioners consider the services you do business with. Ask whether the services you currently work with properly understand their role within risk reduction? How many have inclusive models of work? Put funding behind front line voluntary sector services and build the social enterprise model so we can work at a primary level in our communities
  • Develop co-production, tapping into the talents and assets of individuals living with dementia. As a very smart chap (Chris Mason) living with dementia said recently ‘If we get things right for those living with dementia in the community we get things right for everyone’.
  • Develop appropriate courses, and measure the impact training has in reducing unnecessary admissions to both hospital and care homes. Some residents only require short term treatment in hospital: for example, antibiotics, fluids, or x rays, but then may become ‘stuck’ in hospital leading to increased risk of hospital acquired infections and falls.
  • In our work, we have been commissioned to work on a Vanguard project that successfully reduced admissions to A&E from care homes. The programme included training aimed at supporting practitioners to detect the early signs of delirium -perhaps from a chest or urinary infection – and consider risk factors which may lead to falls, such as visual perceptual challenges and the physical environment. The programme also explored how positive psychology may impact on wellbeing.

 

In summary, we will leave you with this thought from the Dementia, Prevention and Care Paper:

 

Dementia, especially Alzheimer’s, is a clinically silent disorder starting in mid-life, whose terminal phase is characterized by dementia

 

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Mental Health Awareness Week #MAW2017 – Read Sarah’s Story

Mental Health takes many forms and affects us in many ways, and it doesn’t discriminate between race, religion, colour or gender. It can gradually creep up on us or hit us like a truck. No 2 people will suffer the same.

 

I have struggled with mental illness for half of my life now.

I remember aged 17, being in the bath after another argument with my parents, thinking how easy it would be to just stick my head under the water and end it all.

 

Every teenager has their struggles and will say that their parents just don’t understand them, but this was especially true of mine. Even now, 15 years later, I still look back on my teenage years as a very traumatic time.

 

From the age of 18, I spent 7 years in an emotionally abuse relationship. It started with the odd accusation here and there, until eventually, it became an every day occurrence. Every time my phone pinged, he demanded to know who it was. If the person wasn’t female, then clearly I must be cheating. When I was 25, we finally separated and I was left alone with a house and all the bills to pay for.

 

My counsellor recently told me a saying that they use in her sector: “The road is full of potholes”. This was very true of this point in my life, only they weren’t potholes, they were an abyss that I was circling and about to fall into at any moment.

 

I recall driving home from work one afternoon and all I wanted to do was drive my car flat out into a brick wall. I knew then that I needed help, so I made an appointment with my doctor and was prescribed antidepressants and signed off work for 2 weeks. I will never forget my manager’s reaction to that note: “you could always just rip it up and get on with it”. Words failed me and I hurriedly left the office and didn’t return for 2 weeks.

 

Things got a little better as the tablets started to take effect but it wasn’t just the feeling low, it was the insomnia, the numbness and the anxiety that can accompany Depression. I didn’t sleep properly in weeks and this only hampered my recovery.

 

Over the following months, I became stronger and began to like living on my own, it was then that I very unexpectedly met my husband.

 

Within a few months of meeting him, I had weaned myself off the antidepressants and I felt amazing. We were married 9 months after meeting and shortly after we were posted overseas with the military. Moving away was the fresh start I needed, we made some great friends and had our two children.

 

So how can I still feel sad?

A question I have asked myself so many times. After all; I have the perfect marriage to my best friend and soul mate and we have two healthy and wonderful children.

So what can I possibly have to feel depressed about?

The answer is nothing. But Depression doesn’t need a reason.

 

My latest battle with Depression really started last year. I knew I was struggling so I went to the doctors and requested to go back on antidepressants. But as the year went on, my mental health continued to decline and after the loss of a close friend to cancer last July, things just got worse.

 

The thing with Depression though is that it doesn’t just affect you, it affects everyone around you. I became less and less tolerant with my children and I withdrew from my husband- some days feeling so angry with him just for sitting down on the sofa next to me. I wanted to scream at him, even though he’d done nothing wrong.

 

My husband thought it was all his fault that I felt this way, like he wasn’t enough to make me happy anymore. But it wasn’t anything to do with him or our children. The truth is; I still don’t know what caused it.

 

It wasn’t just my home life that was suffering, but my job too. I struggled to complete every day tasks and made so many mistakes.

I’m very fortunate to have a boss who understands and helped me to get back on my feet. I now know that if I’m having a bad day, I only have to let her know and she will support me as much as she can. This makes all the difference to my struggle.

 

By September last year, things were back at their very worst. I didn’t have the suicidal thoughts that I’d had previously because of my children, but I knew I needed more help. The doctor had doubled the dose of my antidepressants but this was not helping, so I sought a counsellor. I found her listed on the Counselling Directory website and instantly liked her from her photo.

 

I’ve lost count of how many sessions I’ve had with her, but every single one has helped to get me back on track and feel better. We’ve been through the ‘nitty gritty stuff’- the abuse etc. but I have left every session feeling a million times lighter.

I don’t have regular weekly sessions anymore, I just go when I feel like I need a bit of support or help. For me now, it’s a bit like an MOT for my brain when I need it.

 

Mental Health takes many forms and affects us in many ways, and it doesn’t discriminate between race, religion, colour or gender. It can gradually creep up on us, or hit us like a truck. No 2 people will suffer the same.

 

I’ve been lucky to make many new friends since my eldest started school last year, and I have been very surprised to learn how many of those other parents have been effected by their own mental health- some just the once, for others it’s ongoing. And it always seems to be the parents who are (sometimes rather annoyingly!) always happy. It just proves that, despite appearances, you never know what personal battle someone is fighting.

 

Don’t ever be afraid to ask for help; more people understand than you realise.

 

 

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