Link workers and Realistic Medicine

My last post was a poem that really struck me. I’ve been wondering why, and I think it was because it articulates the need for help to be practical, to be real, and to have relevance and credibility for the person accessing that help. Just wanting to help, wanting to be useful, is not the full story.

What attributes would an effective link worker have? They’d have to be comfortable around people, good at connecting with professionals, community groups, officialdom and patients. They’d be able to gain trust, and then walk alongside people who may be disempowered in the face of the clinical professions, enabling communication. They’d need to be enquiring, able to find out and keep in contact with key people within organisations, to understand how to get the best from them. They would be able to understand the needs of each person that they support, and advocate for those needs to be met.

What evidence do we have that individuals need this kind of support?

% who can ask

We know there is a gap, data tells us that even though patients tell us they could raise questions in a consultation, in reality, this doesn’t always happen. For 10% of patients, they know they won’t ask if they don’t understand. For a further third, they think they could ask, but in reality they don’t. It is those with the least health literacy that need this support the most, otherwise realistic medicine is going to be beyond their grasp.

The new GP contract includes an aspiration for employing link workers so that every General Practice has access to a link worker, and that link worker can work with patients without need for a separate referral. It remains to be seen whether the people that need this support the most get the most access.

So, it seems to me that our link workers could be powerful allies for patients, decoding the language that is already building up around the concepts of Realistic Medicine, and keeping it basic, keeping it real, and keeping the patient at the heart of our consultations.

We don’t have a link worker identified in our area yet, but she or he will be on the project team.

Patients and quality in health care – co-production at scale.

If you type patients, quality and care into google, the results suggest that this is something that we do for and to patients. Discussions about change agents take me to pages about how to engage clinicians within the healthcare system, but nothing directly about patients as systematic change agents.

I want to flip this on it’s head, and inspire patients to shape the health service, seeking provision that meets what matters to them. A 180 degree revolution. Clearly, there needs to be some strategy, some oversight from health care providers, so that those with greatest need don’t lose out to those with the strongest lobby. Both parties are required to create the service.

The current term for this process is co-production. On a personal level, working as a GP, this is our bread-and-butter. An effective consultation supports the patient with diagnosis, providing information, management choices, and opportunities to meet again to discuss progress.

While I was looking for articles about patients as change agents, I came across the concept of the Patient Activation Measure, a tool to assess how ready patients were to engage in these discussions. The tool is used on an individual, case-by-case level, where the doctor-patient relationship and the problem to be managed is the scope of the co-production. How could we lift this to a more strategic level? Could we use the Patient Activation Measure to see how successful systemic change is in increasing the number of patients able to use the tools of realistic medicine, able to develop that agenda with the clinicians they meet?

As a GP partner in Scotland, I am responsible for ensuring that our practice systematically provides safe appropriate patient-centred care. We provide opportunities for patients to feed back to us about their experience of healthcare, and give us suggestions about improvements. These tend to be about small things – how comfortable our seating is, whether we should have Radio 2 or another station in the waiting area.

Nationally, Care Opinion collects patient feedback, enables organisations to respond and reply, as well as being searchable. But this doesn’t of itself, change the relationship between clinicians and the public. Much of the positive feedback includes stories about care where the principles of Realistic Medicine has been at the heart of care. Within this movement, I feel I am getting closer to system-wide patient-led quality improvement.

The place where I feel this project really sits is as part of the House of Care. I seem to be trying to create an environment in which the left-hand wall is nurtured. Imagine a house which has, at it’s centre, conversations about care, support, realistic medicine. The foundation and floor is the social context, all of the sources of support in a community. The roof, sheltering this all, is the system and processes that bring the patient and clinician together. The conversation has on one side, individuals ready to engage in a therapeutic dialogue, and on the other, clinicians who are committed to partnership working with patients.

House of care

So far, most of the Realistic Medicine discussions that I have been involved in have focused on the clinicians, the ‘right-hand wall’, and on the roof. However, we could possibly be talking only to each other, unless we have individuals and carers that are speaking the same language, individuals and carers who can start these conversations spontaneously.

This model allows for work at local, regional and national scale. The British Heart Foundation has just published a report on a three-year project that used the House of Care Model in five health communities. The report describes how patients were involved in championing this approach, how important an enabling infrastructure is, how to flex the model to fit local need, and the importance of culture before paperwork.

I’m feeling inspired.

References (accessed on 11/10/2018):

 

Hebridean glitches

Today I was going to meet up with Carmen Morrison from the Western Isles branch of the Scottish Health Council. She was also planning to get to Barra for a meeting, and because of the Autumnal Gales, the meeting didn’t happen – the Sound of Barra is not very nice in a storm.

Carmen was involved in drafting the SHC’s report on Realistic Medicine and has a lot of experience when it comes to involving the public. I shall have to pick a day when it is not stormy for our next planned meeting.

Who was Warner Slack?

Subtitle: Why communication technology matters.

I read last week’s BMJ obituaries, as I often do. (read the article HERE) The main tribute reflected on the work of Dr Warner Slack, who believed that ‘the patient is the largest and least utilised resource in healthcare’.

As I read further, I was astonished at the foresight of his vision. In the 1970s, with others, he set up the Center for Clinical Computing at Harvard, and created one of the earliest hospital information systems. He wrote much about clinicians and information technology, but the area I wish to focus on today is his vision of patient-clinician partnership, enabled by Information Technology.

Dr Slack trusted the agency of patients to use automation for their benefit decades ahead of his time. His underlying inspiration was that computing and information technology would empower clinicians and patients. He wrote about online patient communities, now a reality, with websites such as Patients like me and Smart Patients empowering patients to find out from others about the experience of their conditions, and the reality of treatment choices.

He also believed that patients should have access to their digital records, and now we have the OPEN NOTES movement.

I believe that patients need time to understand what we have told them, have the right to consider what we have recorded in their notes, and to consider the implications of their condition and the treatments that they are choosing between. This access, alongside health literacy, means that patients are on the therapeutic team for their own care.

I’ve had a look at the Primary Care Digital Services analysis of what we are working towards, and patient access to their clinical notes has been classified as High Input, Low Impact, meaning that it will be low down on the list of projects being progressed. I know that this is already part of the English GP contract, so it can be done.  This week’s mission: to find out whether this access is coming across Scotland, across the Western Isles, and on Benbecula.

Also, to link the blog to the practice website and the practice patient participation facebook page. (Done)

I’m inspired by Dr Slack, whose ideas are so relevant to Realising Realistic Medicine.