Autism Dialogue Conference 2018

This year I have participated in the Autism Dialogue programme developed by Jonny Drury, in Sheffield, based upon Bohm Dialogue principles that are widely used in business and academia. The inaugural conference took place on the 14th December 2018 and I was invited to speak about the impression that AD had on me. The process of participating in Autism Dialogue has created a lasting and positive change in me that is still working its way through.

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The cave paintings at Chauvet in France demonstrate a new development in human artistic ability around the time of the major ice ages in Europe. These incredibly beautiful, photorealistic depictions were vastly more sophisticated than the previous simpler images, which we might typically recognise if we were asked to think about such early art.

Researchers from the University of York have aligned this new ability within a cluster of others that emerged at about the same time. Namely those of being able to focus intensely on one thing when making complex flint tools, to remember large swathes of terrain in order to hunt for food  that may be under cover of snow and over a much greater area because of animals becoming scarcer, and the ability to enjoy one’s own company more, because of longer darker nights and poorer weather making going outside of your shelter risky and uncomfortable. The same researchers have examined contemporary populations and have identified autistic people as being the closest fit in our own abilities and preferences to these new iterations of humanity that prevailed about thirty thousand years ago.

So to make this point as literally as I can, it seems autistic traits developed as a result of natural selection in order to give the people with them an evolutionary advantage under very specific conditions. We, autistic people, may have been instrumental in ensuring the survival of our species, which is a pretty big deal.

Thus, both modern science and art can appreciate very vividly the contributions an autistic version of humanity has made for the benefit and advancement of all of humankind.

I reflect with sadness that the same cannot be said for many of our peers today in the 21st Century where being autistic  is negatively stereotyped, stigmatised and regarded as a burden because of the cost associated with supporting people who are disabled by their inability to live in a world that can be distressing for them but which is also convinced of it’s own inherent validity in many instances.

I, we, have experienced a plethora of emotions, both collectively and individually. All of these became contents for the vessel of exploration that Dialogical Practice revealed itself to me to be. Perhaps the thing that struck me the most was the intensity of the perception in the room. At all events, autistic people were in the majority and our monotropic concentration that was focussed on the shared dialogue was palpable in its intensity. Similarly, the gentle stimming that many autistic participants subtly engaged in was catching. Our nonautistic peers commented how they felt comfortable engaging in their own stims which they would publically pack away in the presence of others.

I feel the Autism Dialogue events enabled a space for all human participants to experience autism in their own way, This unadulterated, unmasked undiminished autistic experience allowed us to explore its nuances and limits in a very visceral way. Ultimately though I left with a greater sense of who I am, a sense that there are others like me and that there is a beauty in my difference and our differences that has the potentiality to make a difference that I hope, at some point will be recognised as universally as the cave paintings in Chauvet are today.

Autism is a construct; a descriptive word. Today people with these characteristics are widely considered disabled and often lacking. Thirty thousand years ago we may have been revered as mystics, artisans or clan hunters if current research is correct. This makes me think that little by little and using tools and experiences such as Autism Dialogue we have a chance to chip away at the negative perception ‘Autism’ creates and transform it into something powerful and positive once more. Autism Dialogue has given me hope for the future in seeing myself and my community in this way and a new understanding of autistic beauty. I would like to thank Jonny for his work in making this happen and allowing me to be a part of it.

Image: https://upload.wikimedia.org/wikipedia/commons/0/0d/Chauvet%C2%B4s_cave_horses.jpg

Moving on (written in April 2018)

The house we have lived in since we arrived in Derby in December 2012 has been sold and we are in the process of packing up to move on. We have been so lucky to secure a council property, just down the road from where we live at the moment. Although our current property and my son’s school will be a short drive away, much will remain the same and I am sure that we will adapt very quickly.

The new house is slightly smaller than our current house which was a worry, to begin with, however, given that we have run a home business and I have also been in the same space (with a young child) for much of it there has been a much bigger pressure on the space we are in. We have access to a lot more space now. My partner has a space for his business away from our home, I have an allotment which is developing into a wonderful place to be. There is much less demand upon our new home. It can be a place for my family to come together in, rather than being a sick-room, a photography studio, a warehouse and packing-space, a play-room.

Our move to Derby was not one we planned or necessarily wanted at the time. It was very difficult. We moved and renovated a property with a three-month-old baby and the stress eventually made me so distressed I became suicidal and spent four months in a mother and baby psychiatric unit. The house was made our home although it has never really ever been ours as it was jointly owned by an ex-partner who disappeared for a number of years, only to reappear waving a court order when the house was out of negative equity.

We have dealt with everything that life has thrown at us in the last six years – problem neighbours, mental and physical health issues which have included about nine hospitalisations in total. At times, the only thing keeping Mark and I together was a little boy asleep upstairs, but we have triumphed and emerged stronger as a result.

Despite making the best of our house here, we always resisted spending too much money on it, just in case what did transpire happened as we feared it might. Now I am moving, the stuff that I dislike about our current space that I stuffed down is reasserting itself and I am glad to know that we are finally moving to our forever home. I am going to enjoy making this space our own, truly ours, in a way we have not been able to here.

Most importantly I am so happy that we have met all the crap that life and the universe have thrown at us. We can quite rightfully stick our fingers up at the naysayers who guaranteed we would never make it.

I love my family so much. We have moved forwards together and can begin the next chapter of our lives far better prepared than I could ever have hoped for.

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.

NHS England ‘Act, Listen, Do’ event – March 19th 2018

Today I attended the first meeting with the wider NHS England Autism team, which I would describe as small but perfectly formed. I had already spoken to Sarah Jackson on Twitter,  and also met Aaron Oxford after speaking at Skipton House in London but this was my chance to meet the rest of their colleagues and learn more about the work that is being undertaken in NHS England from the perspectives of both awareness within the organisation and also maintaining a progressive agenda within the wider healthcare provision for those of us on the spectrum in England.

Maggie and Sarah, two of the NHS England LD and autism team
A number of points were raised. The lack of general healthcare support like is available for those with severe mental illness and also intellectual challenges. The need for a consistent marker of adjustments in healthcare records for individuals with autism and/or intellectual differences. The importance of making the process of feedback, concern raising and complaint making to be as easily as possible and to offer appropriate support or advocacy if and when required.

Three individuals, Carl, Aaron and myself contributed from a lived experience perspective to a number of different threads to the team’s work including information posters, a informational video that was being produced and also more generally about how the process of making a complaint or giving feedback could be improved, based upon our own past experiences.

More interviews about lives experiences of giving feedback
The day was really really enjoyable. We all had the chance to speak at length and individual communication styles were honoured which is so important when you are working in a mixed group. I was challenged on several points which was exciting and stimulating as these are the interactions that make me consider my worldview from the perspective of others and really refine my understanding of my own experiences.

Making contact, like I did today. with more individuals who are passionate about the work I am dedicated to makes the hardship of moving forwards when there seems little hope of success worthwhile. It gives me the chance to place my own life in the context of that of my community of fellow autistics and also understand the links within the greater disability, neurodiverse and mental health communities in which we are connected to.

The great film crew who did all the day's fiming
The construct of my life, as I understand it is moving further away from the socially according labels that I have had to organise my existence around. I don’t actually have the words to describe what I think I might be. I’m not really sure if they even exist in verbal language yet. What i do know though is the excitement of feeling I am walking on untrodden territory before. The definition of what we understand as autistic as given by those whose experience is within this remit is in a embryonic stage of development.

Although I have accepted the fact that I am unable to have more children because of the potential impact of my son’s and my health, the joy of creativity is still something that I can explore and embrace, perhaps in a more fundamentally autistic fashion by organising this around the creation of new knowledge and new ideas, rather than the production of flesh and bones.

Hilarious fake working for Twitter photos
I am not excluding the challenges and joys of parenthood as outside the desires of autistic individuals but rather suggest that the learning and knowledge might be an equally fulfilling life purpose for autistic women.

I am lucky to have the best of all my worlds.

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

 

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.

 

NHS Health Innovation Expo 2017

Lovely day last week at the NHS innovation Expo, where NHS England asked me to speak about my lived experience with personal health budgets in relation to treating my sensory processing disorder. I was one of two speakers in the session that I participated in, the second being an amazing lady called Michelle who manages the care package for her brother who was left profoundly disabled after he was attacked.

It is always nice to share stories, but it is nicer to meet friends and quite a few were here. Dom Cushnan, who works for the Horizons team at NHS England to promote social movements in the NHS using digital technologies, also attended and was able to introduce me to a number of contacts he had referred me to on twitter.

These included the fabulous Ali Cameron, a mental health activist and all round amazing person and Paula Rylatt who works to develop innovation in South Yorkshire. Far too much coffee was drunk and after getting on the wrong train on the way up from Derby I managed to arrive, breath and begin the speaker session immediately. The years of pretending to be a swan (serene on the surface…) working in agency account management still holds true even after years out the marketing industry.

The Expo itself had some interesting talks on, but as a whole it is still quite concerning to see how much permeation personalisation and the lived experience voice has yet to do. Asking the question about service user involvement in one of the event Q&As I was referred rather quickly to a forum, on a website I had never heard of and told that the innovation under discussion was enthusiastically discussed here, before the next topic was rather quickly moved to. There still seems to be an awful lot of willingness to spend money on bespoke systems that very rarely talk to one another (huge issue in the age of networked systems) when there is usually an open source version available and already doing the same job quite well thank you.

It was certainly interesting to visit such a big corporate event designer for the financial movers and shakers of the NHS. Despite the budget cuts, there is still quite a lot of budget still in flow. The stands of the exhibitors had a very high level of polish which usually means that there are some pretty large deals being cut.

Reproductive rights: what do they mean for disabled women?

I’ve just received a great write up on the Royal College of Obstetricians and Gynecologists event that I attended at the end of June. My comments in the group discussion were noted in it, and the discussion it prompted was captured far better than I was able to myself.

“Another attendee of the conference spoke about being on the autism spectrum and the way in
which for some ASD women, having children may exacerbate disability in the sense that a condition
such as sensory overload may heighten. She asked the panel about their knowledge of experiences such
as the one she described. Dr Frances Ryan responded and emphasised the need to increase awareness
about the varied birth experiences of disabled women, including those of women who are susceptible
to sensory overload and similar conditions. Women’s disabilities may deeply impact the quality of their
birth experience itself, and scholars as well as medical professionals need to be more attuned to that.

Professor Claire de Than contributed to the discussion, noting the need to re-evaluate disability
equality documents. Often, many of the assumptions in such documents need to be critically assessed
and challenged. They are written for people with disabilities by people without them, and so need to
be constantly challenged in light of that fact. Eleanor Lisney agreed with Professor de Than and
additionally noted, in response to the attendee’s comments about ASD women, that when thinking
about disabled women in the reproductive rights space there is frequently too much focus on physical
disabilities in particular, at the expense of recognizing the experiences of women with other types of
disabilities as well.”

The full PDF review is available if you would like to get a complete summary of this thought provoking event: reproductive-rights-and-disability-event-write-up-final

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.