The Partnership Forum – A Vision!!!

So back in 2016 my local trust Cambridgeshire and Peterborough NHS Foundation Trust (CPFT) started to revisit its Involvement Strategy (now called the draft “Partnership Strategy”) and as part of that we decided to go to the people and held severn listening events countywide, rather than just focusing on Cambridge or Peterborough alone.

The main thing people wanted was a forum or a more formal board they could join to influence the decisions made within CPFT.

They also wanted more involvement opportunities that went beyond ward inspections, filling in forms or other things the trust suddenly decided they needed a service user for. That often felt one sided rather than user led or proactive involvement as equal partners.

The other key message was how pleased everyone was with the trust going to them and how the events were organised and delivered locally with service users facilitating the events in collaboration with staff.

In January 2017 myself and other service users really pressed management to act on this information and it was decided we’d form the Partnership Strategy Group (PSG) that would “put meat on the bones” of the draft Partnership Strategy and “bring to fruition the aspirations within” giving the strategy a beating heart and not just a document of well meaning words, collecting dust on a shelf a year later.

We did however decide that rather than update and publish the draft Partnership Strategy ourselves, it would be much better to focus on forming a diverse forum first and have them finalise the draft Partnership Strategy with the intention of presenting both at the same launch event in the future. That way we launch the trusts newly completed Partnership Strategy along with the actual Forum showing we are already bringing to fruition the ideas within. However this is all to be decided by the Forum and we hope to have agreed upon the name as these are just recommendations from the PSG.

So we met with senior management and asked the SUN Network to come along as support and play the role of co-production arbitrator if necessary. We also felt it was important to collaborate with the SUN Network as we are all service users or people with lived experience.

We all decided that the PSG (like the proposed forum) should have third sector organisations on it and those organisations could invite interested service users also, which they did.

CPSL Mind and Lifecraft, along with SUN Network joined the PSG the day it was formed. As we move into the operational stage of the Forum we aim to ensure physical health organisations are included. However we have had leaders of each trust directorate which includes physical health, now the trust has integrated them into CPFT services.

Having such a diverse mix was great and we focused on what the people wanted and put together solutions or ideas on how we could achieve these aspirations.

The main one of those ideas we came up with was the “Partnership Forum” which would have a mix of service users, governors, staff and third sector organisations all meet every month to share what we are all working on and ensure our efforts are more coordinated, whilst working in collaboration and with transparency. This also reflects the main purpose of the Forum and avoids giving people labels such as “Service User” or “Patient” that can be contentious.

In 2016 we found pockets of great practice in the trust but no overall coordination so the Partnership Forum is all about joining this up and ensuring much more partnership working begins to spread throughout the trust and more people like myself are invested in and embraced as equal partners and leaders in their own right, rather than just passive recipients of involvement.

By having service users working within the governance structure as equal partners then we can ensure our voice and influence is embedded throughout the trust. By doing this we ensure the trust gets things right first time and services really do meet the needs of those using them. This also saves CPFT unnecessary costs they would’ve incurred otherwise and shows the organisational will to involve the public and demonstrate transparency throughout the organisation.

The PSG organised the first workshop to find out what people wanted the forum to look like on 22nd November 2017 in Huntingdon. The workshop was very successful with a packed out room and many gave their opinion on how the forum should work. We also went on to organise another workshop on 14th March 2018 in Peterborough to ensure we truly had a diverse range of opinions, which is exactly what we got!

Some felt it should be a more formal council or board and others a more informal approach without an interview process which can often become a barrier and weed out the very people we need to listen to the most! In fact a key point from the Peterborough workshop was to have as little barriers as possible.

The Pop Up Forum idea we came up with in the PSG was floated and like with the 2016 listening events everyone felt a pop up forum that went to the people was an excellent idea and ensured there was a more informal way to get involved, have a say or just to stay informed.

The “Pop Up Forum” idea was that when we had enough service users working within the trust at strategic level we could have two of them at a time to go out to various relevant community groups and share their current work and what projects they’re working on.

At the same time these community groups or charities can feedback through the pop up forum and ensure their opinions are represented by the forum and their voice is not only heard but acted upon.

By making links with key community groups we really have something very special as we align our objectives and ensure the services being designed or currently delivered actually meet the diverse and sometimes complex needs of those using them.

These Pop Up Forums would also help ensure new patients accessing services were signposted by the trust to the relevant community groups in their area as we build strong partnership working with these various groups doing some truly fantastic work.

Currently we have advertised involvement roles that require an interview stage and have had eight people apply which suggests this may have acted as a barrier for some. I know when I first started I would’ve been put off or intimidated if I had to be interviewed so this is something we may need to tweak or rethink after learning from those who went through the process.

My hope is once we all get through the interview stage and start to establish the forum we can negotiate a slightly different approach and ensure the Partnership Forum is just that!

We have had our CEO and other very senior managers passionate about this project leave and new ones come into post so it has been challenging to keep the vision intact and I sincerely hope my trust continues to work with us and not take over with all our hard work and progress we’ve made.

Often large organisations can take over these projects when they start to take off so it’s really important we establish a clear working relationship from the start that recognises this is very much a joint collaborative project.

The challenge with these projects seems to be the relationships between those in power and whether they wish to exert their power over us or be willing to actually work with us which sometimes means stepping back and empowering us to just get on with certain things and avoid micromanaging every decision.

Pop up Forum aside those of us who join the forum as Involvement roles will hopefully meet monthly in order to support each other and share our experience and expertise. I see this as slightly more formal than the Pop up Forum as we will be meeting with not just each other but with staff, governors, third sector organisations and it will be open to the public. We also plan to move the location around the county as CPFT covers a vast geographical area.

At these more formal open meetings we intend to work closely with the governors who hold more authority and powers to hold the trust to account, so it’s vital we work with them so any serious issues arising can be dealt with by the governors themselves.

We also have many staff at CPFT who are service users or have lived experience and they are often extremely passionate about improving services also and will be vital members of the proposed Partnership Forum.

Third sector organisations are continuing to take on more responsibilities as our NHS struggles financially with underfunding so again these are going to be vital members of the forum, ensuring the trust understands how far reaching some decisions can be and can often carry unintended consequences. It also makes sense to maintain and improve collaborative partnerships with colleagues in the third sector.

After meeting with our trusts new CEO (Tracy Dowling), it has filled me with renewed confidence and determination that we will achieve the above and overcome current and future challenges that will inevitably occur. Working through these challenges and differing opinions is where strong relationships are forged and this is what co-production is all about.

I often say “if it’s easy, it probably ain’t co-production!”

I’d like to dedicate this blog to Elizabeth Mitchell who was lead governor at CPFT for many years and an invaluable member of the PSG. We all had huge respect for Liz and she will be sorely missed and never forgotten. Our thoughts are with her family.

UPDATE JAN 2020:
Since first writing The Partnership Forum was established on 04/10/2018 in its inaugural meeting. The PSG has closed with key recommendations to passed onto The Partnership Forum for consideration. SUN kindly held an evaluation day and has worked with PSG members to finish these recommendations.
The Partnership Forum has two involvement roles left to fill and will be going to advert very soon. Once those positions are filled we aim to continue to work with SUN and others to ensure we continue working in partnership with all community stakeholders.
Working with senior managers we have established that The Partnership Forum and truly is user led and hosted by CPFT, maintaining a level of independence necessary to perform its function.

If you have any questions or know of other examples of good practice, please leave a comment

Depression, Leadership, Failure & Success!

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I want to tell you about how depression has effected me over the past year. I’ve experienced depression & anxiety with a good helping of agraphobia most of my life but I’m going to try to focus on the last year as much as possible.

Although I suffer from depression & anxiety I’m a walking contradiction, as when things are going well I thrive on public speaking & generally voicing my opinion to whoever will listen. You just have to follow my twitter timeline to see this.

Before all my success last year I had been in a very dark place indeed but things were improving as I’d had a full gastric bypass losing over 12 stone in weight thus regaining some of the mobility I lost due to a car crash in 2008. I went on to be nominated by my NHS Trust for the Patient Leader Program run by The Centre for Patient Leadership which opened up my mind & got me realising I had some leadership qualities that I just hadn’t realised due to my lack of self worth.

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I completely embraced this programme as it challenged my notions on what leadership is all about. It gave me new found confidence & I could see the potential in the concept of empowering patients to lead change, not be passive recipients of change.

I also saw that social media was essential if I really wanted to achieve meaningful change through connecting & working with others.

I went on to share my knowledge of social media with @JustineNHS whom I met through twitter, we founded #twitterschool hashtag to help encourage more NHS staff to embrace social media as a tool to connect them with their colleagues & patients who were already making the most of social media. Through these free classes our aim was to show the positives of collaboration through social media & provide a hashtag to introduce them to twitter. Dispelling the fear of the unknown & showing the possibilities it can bring was key, plus I like to think we made it fun too!

I went on to be asked by @VictoriaBetton to co create & deliver a presentation on social media at NHS Expo 2014 called “You Are What You Tweet” which was packed out and extremely successful.
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The whole time all this was happening my depression and mental health hadn’t miraculously vanished, it was always there, sapping me of my energy, ability to focus and continually plaguing me with negative thoughts about my ability to hold it together or succeed in general.

However, I did hold it together, but the cracks were starting to show as I was neglecting the basics. You see it completely sapped me of energy making even small tasks seem insurmountable, yet I seemed to manage to get the big things done such as writing presentations and delivering talks on my personal experiences involving leadership, patients experience, collaborative working, social media and highlighting the growing movement of Patient Leaders which I’m very passionate about.

Looking back I neglected to talk about my current mental health symptoms as I just wanted to show I had the same abilities as anyone else and was “strong”.

I felt talking about my mental health would detract from the important work I was doing. I didn’t want people’s sympathy or pity either!

After NHS Expo I applied for and was accepted to join an “Expert by Experience” group put together by The Kings Fund as part of the independent Future of Health and Social Care Commission, lead by economist Kate Barker & found on twitter with this hashtag #BarkerComm

I met some incredible fellow patients and carers in the group who bought various expertise to the table. I felt incredibly honoured to be among such talented & experienced people.

It was a very challenging process but extremely rewarding in equal measure. I found myself drawing on the leadership skills I’d learned especially the skill of listening and understanding others points of view.

I feel I was at my best when doing this work and went on to be asked to talk at the launch event of the much anticipated interim report on 24th April 2014 at The Kings Fund.

I was at my highest point when doing this work; I truly thrived on it. My talk and blog on the report went down extremely well in the room and on social media leading to me being asked by The Kings Fund to do a talk on leadership at their Change Leaders event that they were putting on for senior managers and staff in the NHS.

So all this success was extremely gratifying. I felt a new found confidence in public speaking and enjoyed talking about my experiences.
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However my depression started to really kick in again and my sleeping was becoming even worse than usual. In fact I remember at NHS Expo 2014 rushing to make day two of the conference where I sat down unbeknown to me next to one of my twitter idols @andrewspong. I soon realised who he was and intoduced myself before realising I’d arrived still wearing my PJ top, which made for interesting conversation!

So with my sleep pattern becoming increasingly erratic, I found it extremely hard to accept anymore speaking events. I feared falling apart as the lack of sleep was making me increasingly unstable and I knew it! I’d like to stress this particularly bad bout of depression wasn’t linked to what I was doing. Depression in my experience seems to rear its head with no apparent cause or reason. It almost feels like a cycle that over time I hope to manage but that only comes with more experience I suppose.

I insisted I could no longer do anymore public speaking knowing I was sacrificing something I really enjoyed doing but I knew I had to sort my sleep out so taking time out was right for me.

I got myself readmitted to mental health services and insisted on them giving me some medication so I could finally get the sleep I needed & get back to a regular sleep pattern but I was told after 3 months of waiting that no medication would work as I was already taking existing medication. All I wanted was to be seen quickly & given something to aid my sleeping difficulties but instead I found myself coming up against barriers that only delayed my treatment.

Five months on & following considerable decline in my mental health I finally got the meds I needed. It took me two referals & senior NHS staff whom I knew, to intervene so I could get the help I needed.

The new medication to my surprise worked incredibly well & I now sleep much better at night without waking up at silly o’clock. If only I could’ve had this medicine when I first asked for it months before.

The problem was that due to 5 months fighting depression and the system for treatment, I had continued to decline & although sleeping very well I was in the grip of severe depression feeling I had blown my only opportunity to be a success. I certainly no longer felt like a leader anymore. I was a failure yet again, yes I’d achieved much but I felt I just wasn’t made for this world. I hated myself again & continued to fall into a pit of despair.

I had neglected my personal hygiene & due to not even cleaning my teeth ended up needing extensive dental treatment & teeth pulled.

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When depressed, your cognitive function is completely screwed up. I kept trying to read emails but couldn’t concentrate enough to read more than a few lines. In fact just opening my email app was becoming extremely hard as I was in full avoidence mode which is part of my PD diagnosis.

Although I consider myself intelligent & enjoy academic learning I also have issues with my cognitive abilities. After my father died in 1998 when I was 17, I went from recreational drug use to full blown heroin addiction before finally becoming drug & alcohol free in 2007 so my cognitive function could well have been effected by the copious amount of drug use but when depressed my symptoms are more prevalent so whether it’s from previous drug abuse or not, my cognitive function becomes much worse when in the grips of depression, so I strongly believe depression plays a big factor in this. (Also my previous drug use was a way of coping with my MH conditions).
Examples are I get names mixed up & words too. I also find it hard to follow conversations at times.

My thought processes tend to get jumbled & as my very good friend @allyc375 will tell you it can lead to some classic lines she often reminds me of, which make us both laugh!

In fact this brings me to the final stage of my most recent recovery. After many false starts I’m communicating with my very good friends via twitter & as you can see, I’m finally able to concentrate long enough to write this blog!

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So this brings me to the end of my blog & I hope it goes some way to helping you the reader to either understand my perspective of depression or if you’re a fellow MH sufferer/survivor like myself you can identify with some bits, but I know we all experience mental health in our own way so possibly not all I’ve described.

Thanks for reading!

Dominic Stenning aka @Patient_Leader