Consultant stroke physician, Dr Ingrid Kane, reflects on provisions for stroke survivors, and how the Stroke and Wellbeing Pilot has improved the lives of patients in Sussex.

If we go back to the first Stroke and Wellbeing Service meeting we had together – which was a long, long time ago in a hall in Brighton, it felt like it was a moment of change actually being at that meeting – because you had so many people from the community, from the hospital, everyone was there explaining how they are part of this system.

In all the time I’ve been doing stroke, I’ve never had the opportunity to be in a room with all those different people who were all involved in the Stroke and Wellbeing Service, and for us all to chat and listen to people and listen to patients, and there are so many people doing so many good things – it’s just not all joined up.

I’m involved in the care of stroke patients from when they come in to the front door, right until they leave the hospital and on into outpatients and following them up in clinic. As a workforce, we’re a big team, we’re a busy team, and we’re all trying to do different things and there’s never enough time. We don’t have enough staff to do all the work that we would like to do and that we should do.

The Stroke and Wellbeing Service has really made an impact and it’s something that I would love to see continued because it’s made such a difference to people.

I think by having these other roles, it means that it frees up a bit of our time to be able to maybe concentrate on other things and let those other conversations that need time. let them happen through a single point of contact. I know when I have the time to spend more time with patients and their relatives, they get a lot out of that – one size doesn’t fit all.

It’s so difficult knowing how, for that individual, they can best navigate the system. And you only get to know that by getting to know people a bit better and having the time with them.

And you might try one thing that doesn’t work, then you move on to something else. If you’ve got the time to do that, that’s what makes all the difference.

When we get reports of people saying they feel abandoned when they go home, that’s not unique to Sussex, that’s wherever you happen to have your stroke. So I think the people that have been part of the system, the single point of contact with a stroke support worker is important. It can be used anywhere, it can be transferred to anywhere in the stroke system. And similarly, the health builders I think they are so important within the hospital, but also in the community as well.

The stroke pathway doesn’t stop when people leave here. It continues all into the community and it can continue for many months. And that was one of the things that we talked about when we first met is how do we get that true integration from acute into community and how can we get it to continue. Health builders, you just need more of them and more of those groups, and that could again apply to anywhere in the country and to any types of community groups, any age. All of these roles could be moved into other systems.

GP and clinical lead for the Memory Assessment Service (MAS), Dr Rachel Duncan, speaks about stroke research and the particular challenges stroke survivors experience.

There isn’t really a proactive offer from primary care to stroke survivors. So really, the ball is in the court of the stroke survivor to contact primary care with a particular problem. But we also know that this can be challenging because of capacity issues and difficulties with access. And you’ve also got a group of people who have cognitive, mood and energy problems, often in that time after they’ve had their stroke.

So all those factors make it a challenge for them, possibly to engage a lot with primary care. We know there’s a gap, we feel that we should somehow be doing more, but we don’t really know what that more looks like or how you could even provide that in the current healthcare arena when everybody is so pressured, and services are struggling to meet the needs.

Out of those early discussions out of the case studies and the service mapping and identification of any gaps locally, came the idea of a stroke support worker, and the idea that people who’ve had lived experience have got so much to offer somebody who’s going through this sudden new diagnosis. A solution that isn’t completely clinically focused, but that meets those needs, to me, would make a lot of sense from a health economic point of view.

I’ve seen first-hand what difference it can make to patients coming through the service to have that support element embedded within our clinical team and how personalised and holistic that can be. Having that kind of support service really is of huge benefit to clinicians as well, because it does spare a lot of clinician time.

I think the fact that our local findings and learning really were mirrored by this larger study, the IPCAs study that I mentioned before, I think that’s got to be very powerful to hopefully, in the future, take this forward and have these kind of roles embedded across lots of different chronic illnesses. But I think stroke’s a good place to start.

“By creating a mission around health equity, we can connect our staff to a bolder vision for their work, with healthcare workers as agents of social change, making a difference to our world rather than processing an endless chain of individuals passing through.”

In 1834 Britain passed the Poor Law, an act of Parliament partially creating a safety net for all, but also enshrining a principle of deterring people from making unnecessary demands on public funds that remains present in today’s national debate.  

The infirmaries that grew from the poor house would soon be described as “a disgrace to our civilisation” (Lancet 1865) and served as inspiration for the alternative visions of Beveridge and Bevan a generation on.  

The Marmot review in 2010 and ten years on (2020), along with the desperately disproportionate impact of COVID show how slow our progress has been.

Health inequalities today

In today’s Britain, healthy life expectancy remains widely divided between rich and poor with inequities widening since 2010 English indices of deprivation 2019 – GOV.UK

Nye Bevan’s vision for the NHS was a far-reaching reform of access to healthcare, with a more dramatically socialist root than is widely spoken of.

In providing universal access to healthcare, free at the point of delivery, Bevan viewed the NHS as part of an infrastructure that would dismantle division of class and wealth.

When we talk about health inequalities today, we often think of correcting poorer health outcomes, and less about social justice.

There is a risk that we fail to recognise in real terms the need to deliver more (and different) health and social care interventions for some people, rather than just making sure there is equal access to the traditional offer.

Shifting the language from health inequalities to creating health equity

More insidiously, at times of high demand, services can pivot to the quick wins, trying to reduce overall waits or meet blunt targets. At these times, delivering care to groups with different needs can feel more challenging, ‘complex’, and bypassed on route to the ‘low hanging fruit’.

Wider than this, we know the presence of health conditions or caring responsibilities adds disadvantage over time, a vicious cycle where 54% of carers report their own health had suffered, and 44% had put off seeking health treatment because of their responsibilities. For these groups ‘equal’ access to treatment as usual will not meet their need.  

Shifting the language from health inequalities to creating health equity paints a much broader picture.

It engages our services in recognising that part of the mission of the NHS is a social justice one, that we are a part of how wealth is re-distributed, by providing safe, universal, free access to healthcare, we can balance the accident of birth. As Marmot says, “if health has stopped improving, it is a sign that society has stopped improving”. 

Healthcare workers agents of social change

By creating a mission around health equity, we can connect our staff to a bolder vision for their work, with healthcare workers as agents of social change, making a difference to our world rather than processing an endless chain of individuals passing through.

From this lens, we are stretched to consider what more we can do, taking proactive approaches to the delivery of health, seeking out places and populations who we know are disadvantaged, and playing our part in levelling the playing field.

With this focus, our task is shaped differently. No longer do we look at access data in terms of whether it is representative of our population, but whether it is representative of our population need. 

Our programs and services spend more in areas of deprivation, understand that delivery methods than may be more expensive, and focus on the value this represents in lifting the disproportionate distribution of wealth (in its widest sense).

Doing things differently for a better world

More contentiously it could mean sifting through these long waiting lists differently – to identify those who are disproportionately impacted, less advantaged, less resilient, less able to wait, in service of a fairer society.

It is as much part of our social mission as it is our commissioned services, and we want to do more. We are not alone. Despite all of the pressures within the NHS, we know there is a growing emphasis and commitment to the pursuit of a better world, a drive for health equity at every stage of our lives.  

Through our data dashboards and outreach programs (Vax and CAD), we have learned about how to deliver healthcare differently. Delivering quick, efficient healthcare to the many, and bespoke, targeted offers to the few.

We believe we’re stronger together. If you’d like to work with us to find new and innovative ways of growing health equity then we would love to hear from you.

Get in touch: collab@hereweare.org.uk