Air and light and time and space: how successful academics write (a book review)

Given I am about to begin writing my dissertation the process of ‘how’ to write, as in, finding the time, space, company, motivation and craft to write are of interest to me. Writing has always been an agonising, if increasingly more rewarding process, as I find my own style and confidence in the feedback that I receive.

Academically I know that I produce good work; well-referenced, analysed and synthesised arguments, but it is always answering someone else’s questions. At undergrad’ level, it is just regurgitating someone else’s work but now I have hit master’s level and I’m beginning to define my own interests, ideas and research the writing process is changing. It is taking on a life of its own, like my research itself.

The book I am reviewing is a great introduction to the art of writing. It divides itself into four subsections that approach writing from different perspectives that I hadn’t really thought of as the novice researcher than I still consider myself to be; behavioural artisanal, social and emotional, The author, Helen Sword, herself a seasoned writer, based the book on a comprehensive piece of qualitative research that included interviewing one hundred academics from around the world about their writing practice; its ebbs and flows, the benefits and challenges, with forays into pure abstraction such as exploring the metaphors academics used for their relationship with their writing. This was complemented with a further body of questionnaires that expanded out the data set to encompass a considerably wider scope of writers in terms of their professional status and career state.

I found the tone of the book to be light-hearted. It bestowed upon me a sense of comradery as a new recruit joining the ranks of academic authorship. It was heartening to see battle-scarred veterans still describing some of the struggles I have whenever an essay deadline looms.

Some of the perspectives were different to anything I had considered before. The struggles of those academics working within English as a second language shone a light on the inherent language bias that still exists in so many aspects of our global life as human beings. In some ways, the struggles of those coming to their work from very different cultural origins seemed to echo those I feel when thinking about how much of my own lived experience to seed into my writing. I struggled whether to use ‘I’ or not for weeks in my research essay. It was only the support of a very knowledgable and experienced tutor, who both has oodles of academic as well as lived experience of mental health distress to reassure me that it was the right thing to do.

The different experiences of writing that I can bring to bear on my current development as an academic were also things that I had not considered before. Working as a graphic designer, copywriter and web designer has developed a skill set in me that I draw upon regularly in my own writing. Being autistic is a blessing and a curse. I am able to zoom down into the detail to an infinitesimal scale, and my proofreading is also pretty damn good after working as an account manager. But I struggle terribly with anxiety and cannot often summarise what I am going to do, or even know where I am headed in my writing because I don’t have the structure and context to know the destination. I have just learned to trust my instincts that the end result will usually be pretty good, and ultimately enjoy the journey on the way.

If I were to sum up Air and Light and Time and Space, my best attempt would be to describe it as a book about the philosophy of writing that ultimately has many gems for living as well. the habits of ‘lucky’ writers and academics; noticing opportunities and building networks, trusting their instincts persevering in the face of rejection and criticism and seeing the positivity in challenging or difficult circumstances. These are habits I have cultivated myself in the last six years of being mentally ill and which I am finding also serving me as I recovery and carve out a new professional niche for myself. Similarly, the advice to do something creative or expansive before writing as a means of opening the mind rung true when I considered it in relation to the time I have spent on my allotment and riding my bike in the countryside. Not all the advice was as relevant, but this is the beauty of this book. I suspect that there really is something for everyone.

Overall I loved it (and have decided to write this review about 15 pages from the end). The organisation of the sections, together with the author reviews, very personal, and sometimes vulnerable, author contributions, with practical ‘try this’ sections and a brilliant list of further reading that is interspersed into the text rather than being lumped together as the end, weave together into a lively and colourful consideration of academic writing.

Mindtech MinD workshop – 8th March 2018

Dementia is an area of mental health that I have not had so much awareness of, and so the chance to co-facilitate a group specifically designing for the memory problems associated with dementia was a really positive opportunity. The brief for the MinD project worked across several areas that I have professional interest and experience in. Firstly, digital technology (I worked in digital marketing for nearly 8 years) as a solution to aiding with memory and other executive functioning challenges. Secondly, the products and devices that use this technology and how they can be best designed to aid with memory issues for those with dementia (I also have a degree in 3D design).

The day was well organised and facilitated by Julie, including a last-minute panic when my car broke down – a taxi was efficiently ordered and paid for the project, which was hugely appreciated as I have difficulties travelling on public transport. It made me feel like my participation was really valued. Comprehensive information in writing was presented in good time which helps me manage my own anxieties around not knowing what is going to happen.

Recording thoughts from the MinD workshop,
The event itself was friendly, intimate and personal. I had the chance to speak to a number of individuals like Nancy and Norman that reminded me of the importance of intergenerational contact as a source of comfort and knowledge. My own nanna died last year and talking to Nancy, who was only seven years younger than she was, about how she met her husband, reminded me so much of how much I missed my grandparents. They were such a source of strength and humour in my own life that I am going to try to make some time to do some befriending work.

Julie ran the day itself with a light touch, just enough guidance about what she needed and expected from the day, but with plenty of leeways for us to let our personalities shine through and connect with the Experts by Experience. Coffee and cake were plentiful and everyone was very relaxed, both to look and listen to.

Learning more about patient and public involvement at the Institute of Mental Health
The ideation work was emotional but guided by direction. Julie helping people to sum up their own thoughts and let everyone take a turn. I was happy taking notes and drawing prompts in response to individual contributions, but Julie asked me the same questions, demonstrating a commitment to hearing every voice. I am able to empathise with those with memory problems as I experience difficulties with memory and other EF relating to being on the autistic spectrum, so hoped that some of my comments would be of use.

The day finished with an insightful talk by Institute of Mental Health staff on the MinD project and participatory research more generally. Lunch was provided and unfortunately, I had to leave early and so miss the afternoon session, but hope to be able to take part in future events and also to read any outcomes from the day itself.

A very interesting, thoughtful and insightful experience.

Sexual Health & Disability Alliance – 12th March 2018.

Today I was invited to speak at the the first SHADA event of 2018, which has a specific focus on the autism spectrum and sexuality intersection. This is of growing interest to me, but the original invitation was extended last summer in June. The timing was auspicious to say the least.

The event was attended by a range of professionals with an interest in disability and sexual health  / expression, from Occupational Therapists, to educators and those working for advocacy and information services like Brooke.

The event was hosted by Tuppy Owens (a huge starstruck moment for me as I have owned one of Tuppy’s books since I was 17) who is a sex therapist and educator and  Claire de Than, a human rights expert and self-confessed disruptor. I had met Claire the previous year at a conference hosted by the Royal College of Obstetricians and Gynecologists when she spoke about the importance of fun [code word for SEX] in the everyday life of a human – disabled or not.

The SHADA event had a really informal feel. Speakers didn’t mind interruptions and conversation flowed freely between them and the audience on a number of occasions. This is great for me, as my processing means that I struggle to hold a question until the end and trying to do so affects my ability to concentrate in the meanwhile.

Mary Doyle, of rocket girl coaching spoke of the importance of coaching for disabled people, and her mission to dispel the myth that coaching is for male, white executives only, a point-of-view I wholeheartedly agree with after my own fabulous coaching with Lizzie Paish this time last year. Mary has cerebral palsy, but spoke from the heart about her achievements and hopes to spread some of the confidence she has gained over the course of her life and career. Mary is also training in supporting individuals with neurodivergency, which I am really excited to learn more about.

“Jenn is a natural speaker who engages with the audience and conducts herself in a relaxed, friendly way, with lots of interesting insights up her sleeve.”

Dr. Tuppy Owen

I spoke with jointly with Tuppy, from my own perspective as an autistic woman and the effect this has had on my sex [uality] and relationships. The short answer is ‘profound’, but that is another and much longer blog post.Tuppy herself spoke from her experience of supporting men on the spectrum with some really practical and considered suggestions that I was able to elaborate on in a little more detail. We were joined by Sue Newsome, a sex worker and surrogate who has worked with autistic individuals, whose accounts of the work she has done were sad, but highly illustrative of the kind of batting back and forth between services autistic individuals face every day.

After lunch Helen Dunman, a drama teacher working at the Chaley Heritage School in Brighton described the experiential stories that she has created to explain and develop understanding of sex relationship and bodies to young people and adolescents. The highly graphic nature of some of the narratives, such as sanitary towels with blood, or rubber penises on dolls with ‘semen’ on may be shocking to some, and deemed inappropriate by others, but the account of a group of young men in their twenties who all believed that masturbation would make you go blind demonstrated the desperate need for some honest and forthright conversation on the subject of our bodies and just how exactly they work.

It has been a fascinating day. I love the chance to hear about different, alternatives expressions of humanity – the idea of sexual surrogacy was not one I had encountered before. The idea of a direct expression of sexuality and intimate practice between a client and therapist makes so much sense if the expression of psychological trauma is enacted through the physical realm of the body – why should this not also be the direct medium via which to offer hope and healing as well.

As I know very well, words or lack of them, can only take you so far. Sometimes the direct experience of touch has no substitute.

“Having been impressed by Jenn’s persuasive advocacy skills,  I was delighted that she was available as a speaker at our recent meeting. She commands an audience effortlessly.”

Claire de Than

 

Derbyshire D’Links library logo

 

I have become fairly well acquainted with the library staff at Derbyshire Healthcare Foundation Trust, who are fabulous to say the least. Nothing is too much trouble and the team have been so supportive, so when the Library Manager asked me to help design the logo for the new joint venture between the clinical libraries on Derbyshire I jumped at the chance.

There are three clinical libraries in the county, one in Chesterfield with DCFT, one at Derby Royal Hospital and the third at Kingsway run by DHCFT. The staff at the Community Foundation Trust are spread widely over the whole county and so the three sites are working together to offer library and information services to DCFT staff at every site. This shared venture, the Derbyshire NHS Libraries and Knowledge Service, was what I need to pull something creaitve out the hat for.

The logo needed to represent the different strands of the libraries as well are create a unique feel that was seperate from all three of the member organisations. I pulled designer and creative Guy Evans to work on the project with me.

We initially organised an ideation session with three library managers, during which we discussed colours, shape and layout. First designs were the sent out and refined over email as we were all too widely dispersed to meet regularly. There was a requirement for a high resolution version of the logo for printing as well as those for web and a greyscale version for black and white alternatives.

Researching colour schemes that were representative of Derbyshire led us to the country flag which consists of three contrasting colours; green, blue and gold, which of course also fitted well with the need to accommodate the three organisations.

Together we explored different visual representations that the logo might use. The Venn diagram concept, representing logic and the relationship between parts integrared well with the mission of all libraries,  of developing knowledge and understanding, as well as demonstrating both the convergence of resources in the co-working arrangement. When combined with the three colourway we pulled from the flag, the basis for the final design was decided. At this point it was just a matter of finalising the last details – would colour be graduated or solid, or transparent for example.

The final design included versions with the full service title and its ancronym. I’ll look forward to seeing the design included in the final webpage later in the year.

Coming up for breath.

The last few weeks have been completely crazy and I’ve barely had enough time to sleep, let alone take stock and write.

I have been involved in so many things, so many amazing pieces of work that it’s a bit tricky to know where to begin, so I’m going to start with a few highlights.

Today was spent working with the small but perfectly formed mental health team working within the newly formed Personalised Care Group at NHS England. The group was formed in the summer, conglomerating numerous programs that all have generally aligned goals and values to coordinate and raise the profile of personalised care by increasing volume. This was the first time I really understood the range and capacity of working being undertaken, and the fact that it is so embryonic and new makes it so exciting to participate in. We are still very much in the early stages of scoping and discussions so there isn’t too much concrete to talk about yet, but if you want to stay abreast of the conversation follow the #personalisedcare hashtag on Twitter.

Yesterday, (4th December at the time of writing) I was lucky enough to contribute a lived experience perspective on what it is like to live with high functioning autism and also use NHS services. Finding the balance between the big picture and the (sometimes distressing) detail is a skill that I am still mastering. Luckily, I had some amazing support from Luke O’Shea, the organiser of the event, as well as my co-speaker Will Mandy, a clinical psychologist at UCL who is doing some long overdue work on the needs of different cohorts who have autism, as well as the different presentations across the lifespan.

In the last two weeks, I have spent several days working to examine and redefine the ‘books on prescription’ adult mental health reading list. ‘Reading well’ is a hugely valuable resource that can assist those experiencing mental distress understand and manage their symptoms and conditions. The adult mental health list is one of the oldest and did need a lot of updating. The cohort of lived experience advisors that C4CC and The Reading Agency has assembled was diverse and articulated an amazing range of opinions and viewpoints. Work like this expands your perspective on mental health as well as allowing you to reflect on your own experiences and refine your perspective, so the opportunity for personal growth as well as the chance to contribute to something to help others in incredibly rewarding.

Last week, in addition to everything else, was the IPC residential in Liverpool. This is a semi-annual event that brings together all the Integrated Personal Commissioning sites across England to knowledge share and network.  To see the scale of what is being undertaken is truly breathtaking. There is a quiet revolution going on in healthcare at the moment, and from what I can see outside the demonstrator sites there is a huge gap in understanding and reality. The interative work cycle that NHS England is optimising personalised care through is disruptive on a grand scale. Quite a few people in commissioning and provider organisations seem quite sceptical but I have hope.

This sense of hope has been reinforced this week by a very quick visit to the mother and baby unit that treated me with my son five years ago, nearly to the day of my admission. There has been a big push in maternity provision since then which has also filtered through into perinatal mental health. The service I saw this week was transformed and improved at nearly every level of provision from the inpatient sleeping environment up to the total pathway delivery. I was so pleased to be able to see how some of the concerns that I raised have turned into small seeds that have blossomed into big and positive changes. The real difference has been the receptiveness of the staff. Like in most things, the professionals working with people experiencing distress are the linchpins that can make or break a service concept.

I have been slowly plugging away at understanding the situation for health and wellbeing for autistic individuals living in Derbyshire. I am passionate about my local area and community and ensuring that we are at least aiming for somewhere near a reasonable service seems a long way away. There are a number of constraints that bind us, and working out just what is causing them is quite complicated, and therefore requires a lot of consideration before a course of action might become clear.

 

Peer Leadership Academy – Days 5 and 6 (and some other thoughts)

My cohort spent the last 2 days of the Peer Leadership Academy together on the 19th and 20th July.   I was feeling quite nervous because I was presenting my personal story and having been pretty busy, only got it finished the morning of the same day.

Luckily for me, with all the presenting I had done in previous careers, once I was up the front I dropped into it quite naturally. It was still nerve-wracking as a number of the audience were people I hadn’t met before. I’ve always found a smaller group harder than a larger one, as you can see all the individual faces and it feels more personal. Despite rushing a bit towards the end I managed to fit everything in, and overall was pleased with the feedback that I got; fair comments all round.

I don’t really want to write too much about the Academy beyond what I have spoken about so far. One of the lessons that I have learned this year is that things happen for a reason, and it’s really best to roll with them rather than try and analyse too much. I have come so far in the last six months and still have a little way to go.

We found out yesterday that we have to move house; stressful, upsetting and an added difficulty with my studies and health. It was really hard to deal with at first. Just like being in hospital though, there was a good side (we have negated an extremely large cost and rid ourselves of some baggage from the past) but the downside is that we have to sell our house and move and we don’t really want to.

This is the house my son had grown up in, His measurements are on the wall with his drawings next to them. Some things we can take with us, the memories, each other and our love, but you always leave something behind. Reflecting, I think that maybe in the same way that I am finally getting better, perhaps the move into a new house not associated with sickness and distress and all the conflict that came with it, is a positive step forwards again. God knows, Mark and I have come through some shit in the last 5 years and have somehow stayed together.

When we moved to this house it wasn’t through choice, but we made the best of a bad situation. The alternative was bankruptcy.  We have made it our home since then and I will be sad to go, but now is the right time to let go, say goodbye and see where else we end up. From the Peer Academy, from our current house in Derby, and from sickness towards wellness.

For anyone thinking of applying for the next Academy I would say that it has been one of the most rewarding things I have done since making a baby. I have met some amazing individuals, from the participants, as well as the organisers from Peoplehub, the fabulous Jo, Rita and Steph. You have to be open, aware and welcome challenges. I can’t tell you what you might get our personally, but if it’s as much as me it will be a great deal.

The end of an experience and the beginning of a journey.

 

 

Royal College of Obstetricians and Gynecologists – access to reproductive services for disabled women

The venue was the college itself in London, a building lined with rather magisterial portraits of former alumni and professors.

The conference covered all aspects of sexual and reproductive health, from sex education in schools, through to family planning and contraceptives, via pregnancy, labour and birth, with some stop-offs around the menopause and also sex workers for disabled peoples’ personal fulfilment.

I received the original invitation via the RCOG’s Women’s Voices Network, a collaborative alliance between the college and women who use relevant services to ensure the work and training provided by the college is appropriate and useful.

The range of speakers was excellent, the content equally thought provoking and exciting.

First up was equality and human rights lawyer Claire de Than whose fascinating work, supporting individuals to their right to sexual expression, or ‘fun’ as it was coined for the sake of blushes, was extremely funny as Claire is such a great speaker and sad in equal measures, given the indignities disabled and vulnerable people suffer to achieve personal intimate fulfilment.

Claire’s ability to translate complex law into humane and engaging narrative riveted me to the spot for the entire duration of her talk.

We all take the Declaration of Human Rights and the advantage bestowed by the European Court of Justice for granted. The work outlined by Claire really expressed just how far we have come in the last thirty years. It is easy to forget when you see how far much we still have to achieve.

Dr Jane Dickson (such a great twitter handle), up next, works as a Sexual and Reproductive Health Community Gynecologist. She had a great warm personal approach and made a dry subject, that of the choice of contraceptives available,  funny whilst staying on-topic. The choice and innovation possible in family planning stunned even me. Have you ever heard of a nuvaring? What a great idea!

The speaker that was especially pleasing for me to see what Alison Lapper, the artist with no arms or legs, whose naked pregnant body was created into a thirty foot high marble sculpture for the fourth plinth in Trafalgar Square. Alison was also featured as a disabled single parent in the BBC series ‘Child of our Times‘, first broadcast in the late nineties.

Alison’s disability and being a parent were hugely controversial at the time.

The bias and ignorance she encountered from health and social care staff about her ability to care for her son Parys were almost beyond belief. When I was really struggling with Mylo, I used to read chapter of the book based on the television series as there were some fantastic stories and images of the challenges that Alison had overcome in her quest towards successful parenting. It kept me going a lot of the time, as positive role models of disabled parents don’t really exist anywhere.

At the end of the individual sessions a panel formed with several other women, including some of the current leadership of the college itself. Questions from the audience were answered, the only audience participation until this moment, I put a question to the whole room at this point, rather than just the speakers about if anyone had any knowledge or experience of the needs of neurodivergent women in relation to their disability and accessing sexual health or reproductive services.

You could have heard a pin drop.

One of the speakers had an Autistic women speak at her own event previously (I forget the detail) however this was much more broad in its application, including her experience of sexuality and disability as well as lived experience of autism.

Given the invitation was extended via the women’s network I was expecting more of an open forum approach to the event.I was a little surprised that there was less audience contribution and participation. That being said, the quality of the speakers was absolutely excellent. The closing comments, given by the event’s partner organisation, the British Pregnancy Advisory Service, acknowledged the event was just the start of quite a long neglected area for the RCOG. They have made an excellent start in rectifying this, and I hope and look forward to any other opportunities I might have to visit and learn more again in the future.

Peer Leadership Academy, days three and four.

It seems like the last month has passed by in a flash and I found myself travelling back to Loughborough to participate in the second installment of the Peer Leadership Academy co-produced by the lovely PeopleHub and NHS England.

Considering how surprised I was by the first session I had less expectation and more anticipation about what might take place this time around. We had a broad outline, but given the unique nature of the experience, shaped very much by the contributions of my fellow cohortees, it was not possible to guess just what could unfold.

We settled down more quickly this time as everyone knew each other and dynamics in the group has been previously established. In the first two days in May the focus had been on introductions, knowledge sharing and really understanding just what Personal Health Budgets and Integrated Personal Commissioning were from a bird’s eye point-of-view.

This time around, much was given to individuals telling their own stories to the group, firstly as a means of receiving feedback on how we all did and also for us to understand more about each other’s own experiences. The diversity of the conditions my fellow participants deal with is vast, encompassing a range of progressive diseases, different accidental injuries, as well as those who care and advocate for family with similar conditions.

The overall aim of the academy was beginning to become clear to me, and also to each one of us who was taking part. We were beginning to ‘get’ just how powerful a change the personalisation of care and health was going to be. This was both in the differences it had made to us individually, in terms of control and wellbeing in our own lives and also how transformative and potent it would eventually become in the NHS when embedded.

Sam Bennett, the Deputy Director Personalisation & Choice, Head of Integrated Personal Commissioning & Personal Health Budgets for NHS England devoted a couple of hours of his time to present and answer some pointed questions about his team’s work in relation to our own lived experiences on the coalface. I thought he answered them well and took feedback in good grace. It is a shame that other officials in many of our organisations are less willing to be placed in the limelight as Sam was by us.

The last afternoon was particularly emotional for me. I was very tired, having slept badly the night before.

Witnessing the stories of two others in the group, who frankly dealt with more daily challenges than I do because of the physical nature of their conditions, made me realise that there was in fact hope to be held.

For much of the last five years, life has been about a day-to-day existence, with so little ability to make plans that there becomes no point in trying to reach for anything beyond getting past the next 24 hours. Seeing the pictures of others who have lived with their conditions for far longer than me; who had set up companies and charities, travelled and developed relationships had a profound effect. The emotion I had been carrying welled up, and I broke down. The experience was very cathartic and shared by many of us in the room as we carried similar burdens. They are heavy but their constant presence anaesthetises you to them. A reminder can be like letting the dam go, and I had a bloody good cry. I think that we bonded in a way that was quite unique through this.

Living with a long term condition which affects every area of your quality of life is something you cannot comprehend until you have it. Despite the diversity, the similarities in the challenges we had faced and had overcome or were working on, were startling.

We realised collectively the importance of our contribution as peer leaders. Many in the room had overcome personal challenges and has been pathfinders for others; forging ahead when what we needed or wanted was not available. Others of us were still finding our feet. Despite being something to be proud of, being an innovator can add to the isolation and loneliness that is already present with a long term health condition.

IPC focusses on the need for peer support networking, and that afternoon showed me how often peer support can be poorly aligned along geographical proximity, or diagnoses for example. The real difference is made when peer support is less contrived and people who have deeply personal, shared experiences are brought together with sensitivity.  I am so pleased to have been able to connect with my peers in such a way. It was a deeply moving experience, and one that touched me in many ways. I am still much further behind others whose story I heard that afternoon, and finding the strength to keep going when you don’t know what the end point might be is hard. Seeing others being where I wanted to be, and hearing the insight they gained along the way reminded me, first to keep positive and second to enjoy what I am learning as I travel to wherever it is I am going to end up.

Peer Leadership Academy – NHS England and People Hub

This week I attended the first two of six days of a personal development programme run jointly between NHS England and People Hub after I was successful in my application to take part in the Peer Leadership Academy.

The Derbyshire PHB Network leader Tina Brown was kind enough to forward me the applicant’s information which I found intriguing and so I made an application, and was offered a place on the final cohort of participants.

People Hub is an incredible organisation, set up by several co-founders who have direct lived experience of personal health budgets and of working to develop them. One of these, an amazing individual, Jo Fitzgerald, who pioneered the model for the son Mitchell after realising just how much more beneficial his care could be if it was modelled around his needs rather than those of the provider. Sadly, Mitchell died several years ago, but his memory lives on in the work undertaken by People Hub and Jo continues to share her own story to instigate change for others living with long term condition as well as working for the NHS England team.

Every contact I had with People Hub prior to attending the event was brilliant. They were accommodating of and interested in any adjustments they could make to help each participant get the most from the event – a pretty large undertaking considering the wide range of conditions we all had. My first contact with PeopleHub was with Rita Brewis was very positive and her passion was infectious, a great ice breaker when undertaking something new.

The Leadership Academy itself was held at the fabulous Burleigh Court Hotel in Loughborough, just down the road from where I live in Derby. I stayed the night between the two days personal development programme to minimise travel for me. The accommodation was second to none, and we were all made to feel very comfortable.

The Academy itself was way beyond my expectations. The first big surprise was that the several members of the Strategy Teams for Personal Health Budgets and Integrated Personal Commissioning were working along side us as well as presenting to us, which was fabulous. So often you attend events such as these and can feel like a vanity project, where you are rolled out for media opportunities and little else.  One person I felt an immediate connection with was Alison Austin who is the Head of Policy for Personal Health Budgets. Not only was she the only other person staying at the hotel who had food intolerances but her personal style was open and direct which I can only embrace. Her nursing background and the people skills she had acquired working in Glasgow’s A&E are still apparent and her barely detectable Scottish accent which lapses back into broad Glaswegian when she is ‘off duty’ is great.

The amount of time that had gone into planning the Academy was evident from the start. The course content was well planning and thoughtfully delivered. The balance between conversation and presentations was well made and I felt far more comfortable about meeting my sensory needs, like walking in my bare feet than I had at other sessions. I received a much better overview of just what Personal Health Budgets aspired to be, as well as exactly what Integrated Personal Commissioning is.  My understanding of the health system as a whole, and simply how disjointed it is between NHS England and the service the patient receives greatly increased. Overall I now understand just why things take as long as they do to filter through, but the two days has essentially reignited my hope that the NHS can provide a more personalised service. These changes might take four to five years to filter through to Foundation Trust service providers, but it will happen because this is essential if the NHS is to survive and adapt to the current disruption it is being subjected to. We are all consumers who are used to increasing levels of personalisation. We switch out insurance or banking provider if we get a crappy service but of course have no other options if our health is poor, or have conditions requiring treatment.

A huge amount of the work involved was around developing those participants with lived experience to be able to contribute and speak about their stories to develop PHBs and IPC. Everyone undertook a Myers Briggs profile and Steph Carson, who is a trained MBTI facilitator, worked with us all over half a day to allow each of us to understand how our profiles and personal style could affect our communication and storytelling. My profile was a little unclear as I wavered on the Introvert / Extrovert scale. I took the two profiles relating to where I might be an decided I was clearly Introvert when reading about how this group can focus on details in the environment when under stress, like cleaning or organising cupboards, which I had done not three days before. Apparently when laughter erupts upon a profile read it is pretty conclusive, so INTJ it was.

When the People Hub team elaborated on just how we might contribute in the future towards developing the concept there was a tangible buzz in the room. Opportunities included the chance to speak to clinical professionals, take part in working groups and perhaps even eventually find employment with NHS England in the team!

Overall I absolutely loved the time I spent with both the NHS England team and their People Hub partners. The course content vastly over-delivered on my expectations and I learned so much. The Leadership Academy, like my MSc seems to have come at just the right time to forward my new goal of helping others on the Spectrum get a better deal wherever and whatever their circumstances. I’m really looking forward to the next session in June and can’t wait to see what opportunities might come about because I’ve taken part.

 

 

 

Introduction to Autism – Derbyshire NHS Foundation Trust

On the 22nd May I attended the first of several days training to be delivered by Derbyshire Healthcare NHS Foundation Trust. I had approached the county’s Clinical Lead for Adult Autism, Gaynor Ward, a while ago to see if there was anything I could do to help progress awareness in the organisation. Gaynor, who is a fabulous individual as well as being shit hot on Autism Spectrum, welcomed my input and we organised for me to attend over several one day courses as an opportunity to see what exactly was going on, as well as feedback and prepare for the intensive three days I am presenting at later in the summer.

I have to admit that I was feeling a little trepidacious about going into professional development as a patient. In the last five years I have had a huge amount of contact with many professionals in the organisation and have at times been quite critical of the service I have received. Initially when I first sat down I simply introduced myself as I didn’t want to draw attention to the fact I was still a service-user. I did however, run into two Crisis Team nurses who have attended to me when I have been struggling. One of them was the first contact I had ever made with this team and completed my first ever assessment (one of many). She had been a brilliant support over the months I had worked with her and I had a lot of respect for her professionalism. It was lovely to be able to update her on just how well things are going at the moment, and how my lived experience is becoming a driving force in my recovery.

The training was delivered by Gaynor and two of the Trust’s new assessors, Rosa and Anna. The format was fairly standard powerpoint most of the time, with some interesting diversionary exercises that included a Glen Campbell record and a word-search. Gaynor is also a self-diagnosed Aspie, and the ‘unique’ nature of some of the work we did shone with her alternative approach to engagement. Topics covered included the clinical side of the diagnosis and traits, presentation and challenges, as well as adjustments that could be helpful when working with Spectrum Adults. It was also heartening to see a lengthy discussion and specific mention of the different, and often misunderstood, presentation of women.

The team of three split the training well between the topics and their specialities of Clinical/Nursing, Psychology and Speech and Language Therapy complemented one another well. Despite the pace being steady, the content delivery was intense and although seven hours were given over to the exercise there was still a large amount of content that needed to be skipped over because there simply wasn’t enough time to cover everything off.

The best bits by far for me were when the trainers and participants recalled personal experiences.

Anyone on the Autistic Spectrum is likely to be unique and the old adage of having met one Aspie means you have met one Aspie rings very true. Without mentioning names and dealing with the subject sensitively, real life examples expanded out the quite dry subject matter of Autistic presentation into something living and breathing; the reality of nursing practice as I understand it. Most people in the room had lots to say about people they had worked with in the course of their careers and there were also a number of lightbulb moments when realisation erupted at just what had often been baffling was it fact someone with Autism.

The room’s engagement was highest at these points and during the feedback session I contributed to afterwards I reflected back these times were when people had the most to say. Unfortunately the political correctness fairy made an appearance and discomfort was expressed at knowing how people might feel when asked to discuss this kind of thing. I certainly can’t speak for everyone on the Spectrum, but I do know that given how direct and forthright was mostly are, I would be perfectly happy for anyone of the professionals I have worked with to share their experiences of me if it meant that colleagues of theirs would gain greater understanding into my experiences and for others to benefit as a result. There was so many people on the Spectrum with comorbid anxiety and stress that anything that can be done to forward our cause is a bonus for me.

The three trainers were a great team to interact with, mainly because the breath of fresh air of their understanding is so welcome. One of the chairs behind me was squeaking loudly and repeatedly halfway through the day and I ended up having to nip out and have a few minutes flap (see here for stimming if you are unfamiliar) in the toilets because it got too much to deal with. I told them about this and the whole situation was met with some mirth, which was lovely. I felt comfortable enough to share something that has become intensely private because of the humiliation I was subjected to as a child when i did this in public. Overall, despite having just met Anne and Rosa I quickly felt very comfortable with them, even though my social anxiety spiked at feeding back directly on their work when we had only just met.

As a group we spoke at length about where and how I thought the content and delivery might be tweaked.

Gaynor, Anne and Rosa were all very receptive, and much scribbling indicated (at least I hope) that my ideas held some merit for consideration. As the one day training is going to be conducted by different people across each iteration I am going along to all three days to see how everything develops. There is also a chance it seems that there audience type might be made up of different staff disciplines, so seeing just how each might respond, as well as the content change is going to be fascinating. I also had some quite silly ideas about audience participation that could be used to increase the understanding of some of the very real challenges Spectrum individuals face on a daily basis. These should be included in the intensive training and seeing how they impact is something I’m really looking forward to.

The most insightful and valuable thing that I took away from the day was the chance to listen unobtrusively to the staff point of view. Autistic rights are something I feel very passionate about and I know that I can at times become confrontational, especially in a crisis, if my individual differences are poorly understood. This is simply because things could be so much easier for everyone with a few small changes. I try not to, but can get caught up in my own world-view and keeping in mind that mental health nursing  is highly stressful, you can forget that people who work with you are doing the best they can in a system that is poorly funded and not very fit for its current purpose.

Despite the 2009 Autism Act, the commissioning of services and development of staff for Spectrum individuals is really still in its infancy. There is a huge strain on all areas of the health service in this capacity, with waiting times in Derby topping three years recently, something that is now at last being positively addressed.

The chance to hear and see the genuine concern by the teams and individuals who attended reaffirmed my faith in the work that they do and was a very needed reminder that each and everyone was a human being just like me. As much as I dislike being treated as a diagnosis, I have at times forgotten the humanity of the people who work with me, just as mine has been temporarily mislaid.