My United Kingdom travels

In amongst all the Brexit anxiety and heightened awareness of the climate damage that air travel causes I have tried to spend more time exploring the United Kingdom this summer, rather than relying on the old fall back of a cheap package holiday.

Time away this summer break has been particularly important. Last summer, most of 2018, was spent rectifying the abysmal state the property that Derby Homes let to us, was in. This affected nearly everything that was important in my life. My mental health, my relationship with my son and partner, and my allotment. The latter is just a case of pulling up some weeds, but my health and my family have taken more careful consideration; namely some respite and some dedicated time spent together one-on-one.

M and I spent a week together staying with friends of mine who moved to Totnes in Devon twelve months ago. The southwest really is a paradise for little boys and we spent our time peering into rockpools, crabbing off harbour sides and building sandcastles. M also seems to be developing a fondness for poking through charity shops and bought some fabulous items from a tiny antique shop located on Totnes High Street.

 

More recently I took myself off to Glasgow for a week of culture sans children. After locating an amazing Victorian tenement apartment deal on Airbnb I submerged myself into a five day extravaganza of culture, art, food and fresh air.

I had never visited Glasgow before this visit, or even Scotland. I was extremely surprised. Given the cultural stereotypes that exist about the Scottish (Glaswegians in particular) the exact opposite appeared to be the case, both of the city and its residents. Glasgow is a city with a style and beauty that is all its own. Given its association with Charles Rennie Mackintosh it is easy to say that would be the case, but walking around, the relationship between the architecture and art, and what we know as the ‘Glasgow Style’, is more symbiotic. Things that I identified as ‘Mackintosh’ existed every day in the city before he began working there, and so I think that the city influenced him as much as he eventually  influenced it.

 

I am looking forward to visiting Edinburgh inasmuch to see if my suspicion that there might be a similar relationship between it and Glasgow and Madrid and Barcelona is true. When visiting the first and second cities of Spain, Madrid felt very regal and austere. There was definitely creativity and pomp but it was also extremely regulated, with a high degree of protocol. By comparison there was a lightness of touch to Barcelona that I really appreciated.

I wonder if the same might be true of Edinburgh and Glasgow too

Patricular highlights of both trips for me were; in Devon, the ’round robin’ boat trip between Totnes and Dartmouth; crabbing in Paignton harbour, and having a coffee there thinking about my ex-partner Ian, whose birthday it was. He died last year and was the last person prior to this that I visited Paignton with. Mostly though, spending time with my boy; even the car trips were fun for that reason.

In Glasgow, cafe Zique, the Hanoi bike shop (try the ‘Feed me!’ option for lots of delicious surprises). The accomodation we stayed in; masses of character and perfectly located for walking around, the Botanical Gardens, and the Kelvingrove Musuem and Art Gallery where I learned about the Scottish Colourists and the Glasgow Boys.

I’m looking forward to exploring more of the UK in the next year or two.

The ethics of ethics

So I have to make my position very clear here.

I am in no way denying the need for an independent ethics approval process, within either the academy or the NHS. The need to ensure absolute protection for vulnerable groups and individuals is paramount. Ethics reviews also ensure research methodologies and rationale are robust. As such this process maintains and ideally improves the quality and scope of research over time as long as those reviewing submissions are up-to-date regarding the prevailing attitudes of the area of study they are examining.

Bringing me to the point that I want to make.

I am studying Mental Health Recovery at Masters level. The main values and principles of this concept are those of being person-centred, of empowering the individual, of moving away from the medical-model and avoiding labels. Instead, the philosophy of recovery is about allowing people the benefit of a self-determined identity. Most importantly, to me at least, it’s about returning to people their sense of agency and avoiding institutionalisation.

Why then, when I discuss with my supervisor my final dissertation do I find out that the fact that I am working with autistic people, automatically ensures that I have to get NHS ethics approval?

Being autistic is a difference, not a disorder, or an illness, or even a disability in itself. However, because the ‘label’ or God forbid, ‘diagnosis’ is made by a doctor this group of people that I belong to automatically classified as vulnerable.

You can be autistic and vulnerable, no doubt about it, but you can also be neurotypical and vulnerable. You don’t automatically need NHS ethics approval if you are working with neurotypical particpants.

My project was a self-selecting group of individuals who would not be sought through mental health providers because I did not wish to skew my data. Biases in medicine already exist towards a male-centred presentation and the fact that more women who receive a positive diagnosis tend to have more mental health distress and more severe traits of autism means I would not be able to explore what being autistic means to those who also identfy as women some or all of the time. Furthermore, I also wanted to include women who self identified as autistic because this is often a group that is missed in the official understanding of being autistic.

In both cases I was told I would need to seek NHS ethics approval, which usually takes six to nine months and therefore blocks my ability to carry out this research within the time constraints that I am bound by.

It makes me really angry when a whole group of people have their identity co-opted by doctors, researchers and sweeping statements made about their functioning, wellness and support networks. Surely the point to a recovery focus is that we begin to understand the different needs of the people we work within research, as well as in mental health provision and support? We need to stop assuming that everyone is going to run into trouble or conversely cope fine.

Self-identified autistic women who are struggling, who do need support, are then denied such because they don’t fit the stereotype that has been perpetuated by doctors and researchers for decades. The need to categorise people absolutely not only denies vulnerable individuals and families support but also potentially delays research that could help change this situation for the better.

Even though my masters would have been a small step along the path I hoped to tread, it would have given me a chance to commit to some exploratory research and scope out my ideas more practically for what I hope will become my PhD proposal. Instead, I have had to work within the confines of a virtual project which, although still a great chance to refine my thinking is not the same as actually testing some them.

Ethics are vital for the safety of participants and ensuring projects are of the highest quality, but in their current form, which is still governed by medical-model diagnostic assumptions we still have a long way to go before we can say our research is truly recovery-focused. Ultimately it becomes another gate kept by the say-so of psychiatrists rather than the genuine needs of the people who are intended to benefit.

DLINKS library logo

Derbyshire is a large county with a diverse spread of population and geography. Much of this is covered by the Derbyshire Community Foundation Trust, whose staff can struggle to reach a medical library in the course of their work, given commuting time.

Collaborating to solve this problem, the three library services across the different trusts in the county have joined together to create the DLINKS (Derbyshire NHS libraries and knowledge service), within which staff from DCFT can use the facilities at any of the trusts in Derby City or Chesterfield. This also presents opportunities for the sharing of expertise resources and knowledge within all three organisations, a general direction of travel within NHS Sustainability and Transformation Plans anyway.

 

 

I have regularly used the library at DHCFT since beginning my MSc and have in many respects become a regular fixture. Marie Hickman, the knowledge manager, approached me about developing the logo for the new DLINKS project, which I gladly agreed to do, calling in the help of Guy Evans another creative based in Derby.

Guy and I initially met with the three head librarians for a brainstorming session. It quickly became clear that there were a number of concepts that required inclusion:

  • The three organisations working together collectively
  • The geographical basis across Derbyshire
  • The representation of knowledge and learning
  • An abstract image that would be distinct from the branding of each individual Foundation Trust

After some sketching, the idea of a Venn diagram type logo was settled upon and we suggested the colour scheme from the Derbyshire flag of bright gold, blue and, green, reminiscent of the landscapes of the county.

Guy and I developed a number of different design iterations, working remotely given the widespread of the stakeholders. A final brand was agreed, together with the placement of the project name.

The logo design concept was taken forward into all design for the print and digital presence for the project. The website for DLINKs, including the logo, can be viewed here www.dchslibrary.co.uk.

People are more than their diagnoses.

“It was this prognosis of doom, this life sentence, this death before death that I instinctively rejected when the words “You are wrong” formed silently within me. With the wisdom of hindsight I understand why this moment in the psychiatrist’s office was a major turning point in my recovery process. When I rejected the prognosis of doom I simultaneously affirmed my worth and dignity.”

“And just as quickly as I turned away from the prophecy of doom, I found myself asking– so now what? In other words, I turned away from a hopeless path but also, at the same time, had to turn into something.”

Pat Deegan

The narrative of Pat Deegan recounting her own recovery journey from a place of deficit-based hopeless diagnosis has long inspired me, both personally and more recently, professionally.  Pat’s own recovery mission, to ‘become a doctor and make the mental health system that abused her work properly’ is similar to what I wish to achieve for autistic women who have been through a similarly negative experience with their own mental health and diagnosis. I have found a similar inspiration in taking the crappy life experiences I have had, which have nonetheless also been transformative, and delivered to me far more meaning and purpose than I could ever have found in my old life, and make something better for others out of them.

Professionally this is shaping into a PhD proposal that I hope will enable autistic women to be able to think more positively about themselves and their experiences or history. I wish to create an alternative narrative to that of a medicalised diagnosis; of which even the name makes you sound diseased. Most importantly I want this to be something that all women who identify as autistic can utilise, not just those who come to this place via a medical diagnosis. In this way, I am beginning to open out the idea of self-identification as a valid means of describing oneself as autistic as well as having the same bestowed by a doctor whose own perceptions of just what ‘autism’ is might be skewed by the research bias towards gendered male presentation anyway.

I want to focus on women because I think from what I have experienced and what others have told me about, that this is the group that gets one of the bummest deals of all bum deals. In thinking about women I have also wrestled with the concept of gender and so have had to accept that just as I find it intolerable that clinicians get to decide who is and is not autistic so it is not my place as a researcher to decide who is a woman or not. This is part of my decision to work within the participatory paradigm. Not only do I involve others with lived experience at every stage of the project, but I also have to accept that they will decide the factors of the research question itself. If someone with cis-made genitals identifies as a woman some of all of the time who am I to denigrate their primary experience?

Brown, Catana. Recovery and Wellness : Models of Hope and Empowerment for People with Mental Illness, Routledge, 2002. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/herts/detail.action?docID=1099395.

The latest…

Things have been a bit quiet on my blog for the last six months. A lot has happened, mainly positive, and with some challenges. The main change has been a house move. We still live in Derby but the house we were in had to be sold because of being owned by my partner and his ex-girlfriend who wanted the release equity, via a County Court case, which was quite stressful as you might imagine.

We were declared homeless in January and were lucky enough to secure a council house about ten minutes away from our previous home, meaning M could stay in the same school and all my support could stay in place.

Unfortunately life threw as a slight curve ball as we discovered there was still extensive work to do four days before we were due to move. When I mean extensive I am talking about rising damp throughout the ground floor, a rotten mouldy kitchen and woodwork caused by the damp as well as a whole host of other smaller jobs to complete.

Rather than my relaxed summer reading and prepping for my thesis I instead spent it trying to keep my head above water emotionally whilst project managing a major renovation and negotiating a compensation settlement. Cue another spell under the crisis team and much stress, but I am pleased to say that we got through and I am now trying to get everything else back into order whilst still playing catch up with my new uni term’s work.

On the positive side. We now have a home that noone has any claim over. We have got rid of the rather stressful ex-partner who had been causing stress since I was pregnant; over six years in total. We are no longer running a business from our home and finally have some stability to that space without multiple demands upon it and us as a family. I am getting back into my allotment and have found someone to share the plot with me, with the added advantage that they are a winemaker and novice forager too!

All-in-all it has been a tough six months but the important thing is that I, we, got through. Things that would have caused me to end up as an inpatient didn’t have anywhere near as bad an impact as it would have previously. It is good and satisfying to know that I have moved on and have healed, truly in the Buddhist sense of ‘this too shall pass’. Most importantly the last six months, despite the extra stress, seem to have cemented my primary relationship. Although I still consider myself to be polyamerous I have realised that this is enough for the moment and the forseeable future.

I am happy.

 

 

 

My mental wellbeing: a visual reminder

 

My mental wellness wheel
Capturing with imagery what was important to me when I was very ill in 2013. A great reminder of what I have overcome.

Tomorrow I facilitate a workshop in which women with perinatal mental distress will be asked to explore their health journeys visually. This caused me to remember a similar collage that I created at the request of a wonderfully supportive nurse to represent my own health and well-being needs and challenges.

it is an honour to have progressed far enough to be able to help others in a similar way along their own path.

 

 

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.

South Derbyshire CCG ‘personal health budget’ video

“Jen agreed to be filmed to talk about her lived experience of a personal health budget.  Jen not only articulated the positive outcomes of the experience, but was able to provide some valuable insight into how to make the process better.  Jen comes from a marketing background and was also able to review the film with me to arrive at a meaningful and useful end product.”

Tina Brown, Commissioning Manager

I recently completed some filming with a great team at South Derbyshire CCG who commissioned my personal health budget. The Senior Commissioning Manager, Tina Brown, asked to film my partner Mark and I following the overwhelming success of my recovery following the Sensory integration Occupational Therapy. Personal Health Budgets for mental health that have used their award innovatively are quite rare, even nationally, so any opportunity to highlight positive and successful personalisation of care must be taken.

The film was recently released on the CCG’s personal health budget landing page. I was really pleased to not only be able to speak about my experiences but also helped to create the final editing for the film. Enough footage was taken for a shorter public facing version and a longer adaptation for internal training. We also hope for it to be used more widely for NHS England in the future.

I hear voices, I just didn’t ever realise the significance of it.

Today was the section of my research module that detailed the experiences of voice hearers, via a person-centred construct that applied meaning to their experiences, moving it away from a pathologised symptom of illness. Instead, voices are expressed as a natural response to traumatic events, often appearing at times of high stress and when reframed in this way, newly understood as facets of unexpressed emotion or aspects of abusive memories too traumatic to find voice.

As I read the dimensions around which the voice constructs were created I began to perceive similarities with my own experience.

To be clear, I had experienced very obvious psychotic symptoms, sometimes as a result of sleeplessness, sometimes brought about because of recreational drug abuse and in one particularly terrifying episode brought about by taking Citalopram, a chorus of continuous chanting  ‘Kill yourself, die. Kill yourself, die. Kill yourself, die” that lasted a week and stopped me from sleeping, driving me to follow their instruction from sheer desperation. These I could very clearly identify as voices that emanated outside of myself, as there was an ‘other’ quality to them.

There were always the other voices though. The ones who had been with me since I was a child.

Multiplicitous conversations, involving people family members from my past with whom I had rocky relationships and even different aspects of myself as ages from times past, the present and projected back from the future into my present experience. In my mid-twenties I was subject to three years of domestic violence and abuse. During this period a host of voices emerged, all facets of me at different stages of my life who struggled with the life experiences they dealt with. The four-year-old bruised from her parent’s divorce. The eight-year-old struggling to come to terms with the sexual abuse she experienced from a visitor to her home. The fourteen-year-old, undiagnosed autistic girl-woman adrift in a sea of peer bullying and social distress. The seventeen-year-old with a cocaine habit, spending as much time as possible away from home because we/ she couldn’t hack the tension in the family. They were all joined by my current (then) self and future manifestations from an imagined future, where you weren’t living in daily fear of being raped, or beaten or made to feel more worthless than a piece of shit.

We got together and told each other everything would be okay in the end. My then 25 year old self would comfort the eight year old, explaining that everything would be okay and you/she would stop feeling so dirty. We all talked to our future manifestation about what being okay was like, as a life and an experience. The future self had a little girl with her, who listened and didn’t say much, but whose presence, as a loved and cherished being was obvious. Her comments frequently centred around just who all these other people, were and why the other little girls were so sad.

Mostly, my voices were familiar and friendly, supportive and provided a much-needed sense of solidarity.  Even the critical angry voices, who I often identified with family members, were just part of my inner landscape. We conversed and I listened. They helped me to process situations I needed to prepare for or explore different scenarios that might happen. They helped me to develop the social skills I needed to deal with aggressive or confrontational experiences that happened in the real world – so the next time something similar happened I had more of the right words to defend myself with.

My voices have been with me so long that I barely even think about them, but I realised with horror this afternoon that if I had a negative response to these manifestations I  would possibly have been in line for a diagnosis of psychosis, with all the joys of being filled chockfull of pills. Even reading the other accounts of individuals who reframed their own voice hearing experiences into something more positive jolted me. Their original perspective was so negative. Had I been wrong all along? Had the experiences I have had been latent expressions of mental ‘illness’ that had gone unaccounted for? Was I at risk of another relapse despite only being discharged from secondary services last month?

I guess the best way to describe it is like seeing trees or clouds every day for your life. Then one day you read that seeing trees or clouds is actually a sign of profound illness, a serious and stigmatising experience, only it never felt like that to you. Seeing them was quite nice a lot of the time, and even when it was harder like if there were thunder and lightning, it was never anything you couldn’t deal with.

Notwithstanding my total rejection of the medical model of recovery and all the self-limiting meaning it gathers around you, the power of the internalised stigma affects me still. I was worried, genuinely worried, that I was going to get ill again, and that this time I wouldn’t be able to cope. I am still feeling uneasy now, but have taken note of the narrative of fellow voice hearer Eleanor Longden, who described the initially benign voice becoming aggressive and confrontational when she began to experience their presence negatively. I have chosen to accept these emotional responses but not to allow myself to become caught up them.

I hope my voices stick around. I have thanked them on occasion for their help, genuinely and wholeheartedly. We have got through some tough times together, and I feel like my internal world would be emptier and less vibrant for their loss.

Perhaps the best realisation I had today was that the little girl I have heard was, in fact, a little boy with blue eyes and cheeky smile. He is loved and cherished, and his mummy, me, has become the women all her past selves had hoped desperately might one day come into being. I am able to hold, cherish and love each of them, as I do my own boy, and have healed or come to terms with the injuries of the past. In this way, despite their persistence, I instinctively know that they mean me no harm, because they are me in different forms.

Love is limitless, but its momentum can be stifled between and within us. As the Hearing Voices Network, and other diverse practices like the Open Dialogue Approach are beginning to conceptualise, those barriers can manifest in strange and abstract ways like voices or self-harming behaviours. Rather than administering pills we need to return to the humane qualities of empathy, respect and consideration of ourselves, our experiences and our voices.

We need to know them, if we are to know ourselves and in doing so return love to all quarters where it belongs.