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.

 

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