Co-production within Hampshire NHS Continuing Healthcare (CHC)

By Lara Blake, Senior Project Manager - and Tracey Knatt, Quality Improvement Manager, Hampshire and Isle of Wight Integrated Care Board.

The CHC Co-Production group was established in 2018 with an initial focus on Personal Health Budgets.  The group has evolved over the last four years and has been involved in a number of activities with a positive impact on both staff and individuals involved in the CHC pathway.  

The group consists of those working within the CHC service and those with expert lived experience. 

The groups aims are:

·     To support collaborative working and embed co-production within Hampshire CHC.

·     To work together to achieve more than could be achieved separately ─ sharing knowledge and information ─ improving existing and developing new services.

·     To ensure those with lived experience are involved in service design and decision making.

·     Achieve continuous improvements in the quality of the CHC service through closer working relationships between partners and those with lived experience.  

 

One of the more recent initiatives implemented by the Co-production group is monthly ‘coffee morning’ sessions.

These sessions are an opportunity for staff employed in the CHC service to meet informally with those who have direct lived experience of CHC.  The sessions are mandatory for all new starters and open to the whole workforce.

The sessions have been extremely well received by everyone involved.  Some comments below from staff demonstrate how valuable these sessions are:

“It was so good to speak to the group and really interesting and beneficial to help our practice. The hour went very quickly and it felt like we had only really touched the surface of what we could gain from them”

“Firstly, thank you for arranging these sessions.  There can be no better way to hear the person with lived experience’s voice.  I found the session very insightful and inspiring.”

It was good to hear that there has been a dramatic change in recent years with the PHB process, information sharing etc and I particularly liked the comment that having a PHB enables (them) to be ‘pro-active rather than re-active’ with (their) care and support.

“Thank you very much for sharing!!! I think you are truly amazing”

“Thank you for arranging, I REALLY enjoyed that and would love a continuation”

“Fantastic - so interesting - to hear a personal perspective has been so interesting” “What an inspiration XX is!”

 

Another workstream we are collaborating on is the NHS Continuing Healthcare review process and documentation.

We have a small working group including staff responsible for completing the reviews and two members of our co-production group.  This has given us all a real insight into how the process makes people feel and the preparation they feel they need to do.

It has been invaluable to gain their views on what the documentation means to them and explore whether in the current format; it is fit for purpose?  The answer was no it is not!

We are in the process of developing a form and process that should enable people to feel more comfortable about the process and ensure the framework requirements are met.

From a staff perspective it has been a really valuable experience working with people who use our service and really understanding the impact some processes that we ‘just do’ have on people, and it has inspired them to think differently about their own practice.

 

" As one of the lived experience members of this group, I would like to say how valuable it has been for me to work on an equal basis with a range of staff within CHC.  It is great how we have identified that there are no barriers to change, development and improvement. The only barrier is in our own minds. We have challenged strategies and changed information documents for what we believe is better, making them more effective and easier to understand. There is clearly still work to be done but everyone seems willing to continue this process. I think it would be extremely valuable if this could be duplicated right across the country."

 

Co-Production. The Care Act and the Wellbeing Principle

By John Evans, OBE, Independent Living and Disability Rights activist, and former SCIE Co-production Steering Group Chair

This is the 7th year of the SCIE Co-Production Annual Festival. I would like to draw your attention to some significant connections with Co-Production and the Care Act 2014 and its Well-Being Principle and how these have directly changed the lives of many people with lived experience for the better. 

 

It is not surprising that one of the most comprehensive pieces of disability legislation in the history of social and health care, the Care Act 2014, should be the first piece of legislation to include co-production. Co-production began to have an impact towards the end of the first decade of the new millennium. People with lived experience realised that co-production could have a beneficial effect when working together with different health and social care authorities. I personally did some work on this when I was working for the Department of Health (DH), as it was called then between 2008-2010. I was the DH Specialist on ULO’s (User Led Organisation) and we tried encouraging ULO’s in different regions to work together in partnership on an equal basis with their authorities to co-produce. 

 

This is what the Act says about the effect the individual can have on the co-production process: “when an individual influences the support and services received, or when groups of people get together to influence the way services are designed, commissioned and delivered”. This statement encapsulates everything that the disability movement have been attempting to do for decades. In the beginning when Independent Living was established in the early 1980s, one of its main principles was that “any decision made about a disabled person’s life should directly include them in the process”. This is exactly where the term “nothing about us without us” came into being. It is also where the whole concept of “person centred approach and thinking” came about. 

 

Co-production features in several parts of the guidance in the Care Act and in particular the section on Prevention. It says “in developing and delivering preventative approaches to care and support, local authorities should ensure that individuals are not seen as passive recipients of support services but are able to design care and support, based around the achievements of their goals. Local authorities should actively promote participation in providing interventions that are co-produced with individuals, families, friends and the community.” 

 

I think another important aspect which also appears in the Care Act is the connection with the well-being principle. I firmly believe that co-production has had such a positive and powerful outcome in terms of what can happen when its dynamic is used in designing services and the impact this can have for the individual. I have witnessed so many times how this positive outcome can have beneficial effects on the individuals involved. It can transform the quality of life, health and well-being of the people who are engaged in this process. Co-production can have a definite effect on the principle of well-being. We can experience and measure this by seeing the impact it has on individuals working together in partnership on an equal basis with different authorities. What can be better than this? I have also seen how this can improve the mental well-being of people who might experience mental health issues. This can be further developed and supported with peer support with people who have been through similar states of being. 

 

In conclusion, one can see how these two essential principles of the Care Act, co-production and the well-being principle, can directly enhance an individual’s experience when engaged in designing services based on their own expertise and insight into their conditions along with other like-minded people. 

 

Talking about co-production in Doncaster

In this blog for Co-production week, Valerie Wood and Bryony Shannon talk about their introduction to co-production in Doncaster. 

Bryony (left) and Valerie (Right)

Valerie Wood is a full time unpaid carer who retired from the NHS to be a care partner for her husband, who has Motor Neurone Disease  Bryony Shannon is the Strategic Lead for Practice Development in Adults, Health and Wellbeing at Doncaster Council.

Getting started 

Valerie: It just happened. It wasn’t like I knew what I was doing! I’ve been campaigning for years, and I started getting interested in the #SocialCareFuture movement on Twitter and came across Bryony’s blog about how language in health and social care can create barriers, and this really got me thinking about how I could influence change in a more ‘hands on’ way. I was already involved in the Carers Action Group in Doncaster, then Bryony asked me if I’d like to join some workshops looking at people’s experiences of access to care and support.  

Bryony: When I first got this job, I didn’t really know how to get started with embedding co-production. But our approach has evolved organically through lots of connections and conversations, and it’s become really clear to me that – as with most things in social care – co-production is all about relationships. 

Wait a minute! 

Valerie: I come across the word co-production in an awful lot of reading material. You trust when people mention co-production that it is co-production, but then the more I found out about it, the more I learnt, I realised that the word co-production was being compromised. And then you think, wait a minute! If you're saying you do co-production, then do it. If you're not doing it, fine. But don't tell me you're doing it when you’re not. 

Bryony: I remember sharing the ladder of co-production with Valerie. That’s when we realised that lots of ‘co-production’ she’d been involved in was actually consultation or engagement. Looking at the ladder of co-production together really helped. 

Valerie: I also find Think Local Act Personal’s (TLAP) Ten top tips for co-production useful. I use that regularly. Often professionals tell us they want to co-produce something, then put the pressure on us to get through things quickly. If you want us to be part of things, you have to give us time. 

Bryony: Co-production is about creating something together. Co. Production. And if you’re going to do co-production properly, you’ve got to acknowledge it takes time. But it’s time well spent, isn’t it? Because you’re getting things right and doing them in the right way.  

Valerie: Our work on the principles met all those top tips for co-production

Co-producing our practice principles  Bryony: We’d adopted the #SocialCareFuture vision and signed up to TLAP's Making it Real framework, but I was also keen to co-produce some local principles to underpin our practice. We drew together a small group of people with lived experience and people working in Adults, Health and Wellbeing to talk about what those principles could be. Valerie: We started with an idea that blossomed. Bryony ensured everybody had an equal status and an equal say. I never ever felt that anybody was more important in that group. We decided how we were going to work together and how we would make a difference. Bryony supplied the background information – you can't go into any of these workshops and be a true partner if you haven't got the background information supplied to you, then it’s up to you whether you read it or not. I did get confused sometimes though. The professionals were chatting away like nobody's business and I had to keep asking if they could explain this and that. I think you do need to consider how much information is needed and not make assumptions. I didn’t know about TLAP or the Be Human Movement then. But it was good. I liked it. I think personalised care keeps getting missed out, I really do. It’s still very much service centred, not person centred. I feel like we’re very good on paper now, we’ve got a good framework. I really do believe in it. But now it’s about making sure it gets translated into practice. That’s the really important bit. The next step for me is for the co-production to work in practice and be meaningful for people to have the social care future they hope for, and for the framework we all co-produced.to be fully supported by an excellent implementation plan.