Blog - Patient: Engaging, sharing, supporting – Part 1

Kayleigh Price is AQuA’s Improvement Lead for Safety & Mortality. In part one of her blog, she shares some of her reflections on patient experience from the recent International forum on Quality and Safety.

Kayleigh Price

Last week I was lucky enough to attend the BMJ/IHI international forum on Quality and Safety in London, with a number of colleagues from AQuA. I had the opportunity to present a poster on the Measurement and Monitoring of Safety Programme, but that is not what I wanted to write about in these blogs…

Brains at the door and bodies in the room?

The messages coming out of the forum were loud and clear. Service users want to be involved in decisions about their care. They do not want to be an afterthought. They want to be engaged at every level of their care.

In the opening keynote session, Lord Darzi and Don Berwick were lightly grilled by two patient advocates; Margaret Murphy and Anya de Longh. The pair were firmly in the driving seat, as Margaret reminded us that our service users hold down jobs, look after their families and generally make decisions all day every day.

She then asked why it is that healthcare thinks people leave their brains at the door when they come in to have their bodies treated. And this is a very good point. If we want to move towards a shared decision making approach, we need to remember that our service users have brains, opinions and feelings and that they shouldn’t be  afraid to express them.

Service users say what we are too afraid to

I then attended a session focusing on how patients were engaged with the Q programme and the importance of engaging for a reason was emphasised. To cut a long story short, they were saying that engagement cannot be a tickbox exercise and advised a 4PI model for service user involvement, which encourages us (those in health and social care in general) to think about:

• Principles
• Purpose
• Presence
• Impact

They highlighted the fact that service users can often say the things that our clinicians and other healthcare staff can’t. They don’t have the fear of repercussions that we may have, or the need to navigate the political climate of the NHS. Where we might be thinking it but too afraid to say it, our service users will likely not feel the same restraints we do. After all, they are the ones who will be affected by the decisions we make, so why should they feel they cannot speak up?

Break the focus on transition

Next was a session on the ‘Patient Centred Health Care Home’ which extolled the benefits of involving patients in planning for transitions. The speakers in this session posited that we should consider movement between services less as a transition, more as an expansion or retraction of the current health delivery team.

Basically, the idea is that the service should expand and contract around the needs of our service users. The patient, their family and the GP are the core team (or health care home) and they draft in extra support from other services as and when the patient requires it.

This represented a different way of thinking about how patients move through the system, and for me highlighted the need to ensure primary care, and our patients are fully in the loop about the services they access. Which brings me rather neatly on to session four…

Patients records - partnerships of trust

This session was called ’Twelve Years of Empowering Patients, Improving Lives and Feeling Fabulous’ with the #Empowerlution. This session was presented by one Ingrid Brindle, chair of the award winning Haughton Thornley Patient Participation Group, and her general practitioner Amir Hannan.

They spoke about the fact that healthcare likes to hold on to the information we have about patients. We don’t like to give our patients access to their medical records. Ingrid and Amir posed to us that actually the very person who should have the access to the whole medical record is the patient. They are the ones making decisions about their health and healthcare on a day by day basis. The takeaway message was that ‘health is a lifetime project for us all, and we need all of the tools to manage it’.

To be continued?

In the next part of my blog, I will talk about patient innovators, technology and then hope you’ll join the conversation as I pose some questions on my final thoughts.

Read part two of Kayleigh’s blog here.

You can also share your thoughts with Kayleigh via Twitter @kayleighprice14, or email Kayleigh.price@srft.nhs.uk.