By Dr Matt Cooper, NIHR Newcastle PSRC, Safer Integrated Health and Social Care Environments Theme Research Associate.

Over the past year of the Tilly Hale Carer Research Panel, we have met on several occasions both in person and online. The sessions have been hugely beneficial to both myself and our research team. The purpose of the group was to establish a collaborative space where carers could help priorities and set the agenda for the research we are doing within the school and patient safety group. Initially I found it difficult to work out how to ensure the group made an impact and how we could become sustainable beyond the funding. I worried that the group would not have a single direction, and I wanted to ensure I brought meaning and a purpose to the group. Looking back over the past year I think the group has made more impact that I initially would have realised. 

Since the group was established, I have had the absolute honour in being able to listen and learn from the experts in what caring should be about, the challenges they face, and where we need to be doing more to research to support the development of services. The carers in the group are passionate about providing the best support for the people they care for, while providing a selfless act of giving their time and energy, despite the challenges they face or the impact on their own health and wellbeing. 

The group has informed my thinking and critical review of research more that I had accredited before, and they have made me think more holsitically about the research we can do. Within our research team we now have 7 projects in this space including, student carers, carers involvement in medication management, carers involvement in hospital at home care, carer wellbeing, and support for ethnically marginalised carers. All these projects I believe have been informed by the panel and give thanks to them and their openness to support this. 

Of course, we are also working on an art piece which has been commissioned around what it means to be a carer, and below is an intial draft of this. This piece I hope can be sent far and wide to demonstrate the vitally important role carers play in the healthcare landscape and support the research we are doing. I thank the research panel for their honest reflection when developing this piece and I hope that it does justice to their experiences. 

Our first NIHR Nrewcastle PSRC Theme Implementation Management Group meeting, thankfully shortened to TIMG, for our theme on safer, integrated care environments was great! It was a meeting that could not have better met its terms of reference. Providing input and advice on the theme direction, priorities, and strategies to investigate them.

We had stakeholders from organisations and sectors who could understand the big-picture problem being addressed in the theme and were generous with their suggestions and signposting. It helped that they were all clearly champions in their fields of work and motivated towards improving practice around integrated care and patient safety.

As a theme lead, getting a steer on the key issues in relation to the topic areas we currently have active projects was invaluable. But the most significant discussion point was about something myself and researchers in our theme had not come across; ‘Shared care’. As soon as this was mentioned as an area of possible interest from our ICB representative, other TIMG members contributed their emotive perspective. This highlighted something that was clearly causing contention in practice on multiple fronts with implications on patient safety, with seemingly little being done to resolve and/or investigate and optimise.

This piqued our interest; something under the radar and causing this much drama was worth investigating. Our first delve into literature was unsuccessful in retrieving anything. Dr Google was more fruitful with a few guidance and policy documents to describe shared care as ‘an agreement to ensure seamless prescribing and monitoring of medicines which enables patients to receive care in an integrated manner’. 

This seemed like something we could be looking into. The available documents, however, made this initiative sound quite benign and actually like something that could work out really well for patients. So, why the drama?

The following weekend, I happened to be having a social encounter with a family member, who is also a practising GP. So, over coffee and cake I asked about shared care. I was not prepared for the head-in-the-hands response. The implementation and reality of this agreement in clinical practice sounds messy, complex and potentially riddled with risks to patient care through monitoring, identifying and addressing fluctuations in chronic conditions in patients who are often experiencing multiple long-term conditions and have complex health and social care needs. Also, shared care appears to be here to stay in the NHS…at least for a while.

So, what has this meant for us within our theme; we have started to look at this problem more systematically. Given the lack of published evidence on this initiative, stakeholder engagement will be crucial to understand it better in terms of its design, delivery and implementation, work out the risks and potential benefits and investigate how patient safety is protected and consolidated. It looks like our first TMIG has flagged a potential theme priority…watch this space!