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.

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.

NHS England Personalisation Peer Leader videos

To promote the next Peer Leadership Academy several members of the spring academy gave short interviews about our experiences of development over the time we have spent together, as well as personal health budgets more generally.

I spent a lot of time, intensive time, with Jon, Robyn and Andrew and the other participants and have learned an immeasurable amount about myself in this process.  I hope that these videos give a small taste of the work we have done together and the positive impact we hope to create in the future

I would urge anyone with experience of health personalisation or who receives a personal health budget to apply to take part in the next academy. It really is an amazing experience.

Click here for more information.

https://www.youtube.com/watch?v=pCdDI2AjGa8

https://www.youtube.com/watch?v=LulV_pVVYLc

https://www.youtube.com/watch?v=jMM_1M_Fp98&t=21s

https://www.youtube.com/watch?v=hSAeWAPqXxM

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.