Jane-Claire Judson launches No Life Half Lived vision

Chest Heart & Stroke Scotland (CHSS) is a charity with a history longer than the NHS itself. In 1948, when the NHS was launched, the National Association for the Prevention of Tuberculosis was already 50 years old. That year it broadened its scope to become the Chest and Heart Association, and it incorporated ‘stroke’ in 1976.

The evolution mirrors the shift in clinical focus in Scotland from infectious disease to some of today’s biggest killers – heart disease, stroke and chronic respiratory illness. Close to one in five Scots are affected by the conditions, and as people live longer with multiple conditions, the three can often be intertwined.

As well as its work supporting research, the charity has a long tradition of providing help with rehabilitation, including advice, financial support and communication support services for people who have had a stroke which has resulted in an impairment to their ability to communicate.

The evolution of Chest Heart & Stroke Scotland looks set to continue, with a new vision document unveiled by a new chief executive, Jane-Claire Judson.

Judson, who joined the charity from Diabetes Scotland in November, is already a prominent voice in health in Scotland as a board member of public health board NHS Health Scotland and a Scottish Human Rights Commissioner.

She tells Holyrood she was attracted to the role because the three conditions together span health and social care and it has a “multiplier effect” in terms of opportunities for transferring learning and good practice.

“Chest Heart & Stroke gives me the opportunity to raise some of the holistic, human rights-based and community-based approaches to health that I’m particularly interested in,” she says.
There was an appetite within the charity for it to develop and grow, she adds, in a way which reflected her own “personal and professional values”.

“We talk about being holistic and being integrated but in actual fact, we find it really hard to do. My ambition for the charity is to be bold and say we’ll put our money where our mouth is. That is very important to us because people give us their money out of their pockets.”

She points to the fact there are now at least half a million people with COPD and asthma, 240,000 with coronary heart disease, 124,000 who have a stroke and groups like 50,000 people with atrial fibrillation who don’t know they have it. 

“We’re looking at one in five of the population, so we have to grow what we do to meet that.”

Part of this growth is a new document, No Life Half Lived, which sets out an ambition to improve the quality of life for people who have one or all three conditions. Judson describes it as more than “just a strapline”, a vision, a strategy or a statement of intent, and insists it is an evolution of the charity’s DNA to demand that there should be no life half-lived in Scotland as a result of the three conditions.

“As a charity, we have over 100 years of expertise and really what we want to do is amplify that as much as we can and also create a sense of momentum around the quality of life people have in Scotland,” she says.

“We know we can’t solve health without integrating with a range of other issues. As a charity, we’ve gone from moving from a medical model to a more social model, and actually beyond. It’s almost emergent, and there’s almost not a label for it and I don’t think there should be. We have to be responding to the changes around us.”

This will involve a significant step up of rehabilitation services.

“We aim within five years that everyone in Scotland can access a rehabilitation support service from us. It will be called the ‘No Life Half Lived Service’. That’s the goal of this,” says Judson.

“There’s something about hope in there, and actually, it’s about love as well. We don’t all talk about those sorts of things. 

by Tom Freeman

Charity pledges to provide rehabilitation services to one in five Scots in five years

“A diagnosis can be really challenging but you can live well. Quite often that’s not the message, it’s about ‘here’s all the medications you can take and here’s a regime you have to follow’. There’s a huge amount of capacity in people to respond to their conditions but we feel at the moment that support isn’t there and we can deliver on that.”

Part of this expansion will include new community hubs, where specialist support can sit alongside inclusive spaces to provide holistic support to the wider community.

The idea has grown from three pilot spaces which emerged from “retail estate opportunities” and have proved so successful as a “safe space” for people that a more “strategic and focused” approach is now being pursued. New hubs will be opened in areas where “people face the most barriers”, says Judson.

The opening of a new hub in Drumchapel is particularly exciting, she says. 

“This is a community hub for people with our conditions, but actually, it’s for everybody in the community. 

“So we know the local breastfeeding group may need some space to meet, and we’d be saying you can do that in our community hub, because we understand that for this community, health across all the areas is really important. And we know that later on, that early years intervention has an impact on chest, heart and stroke.”

Judson recognises that some may see spending the charity’s money on a broader holistic approach as a risk, but insists it is necessary. 

“It’s a fundamental aspect of a human rights-based approach,” she says.

“It’s about saying we will be there all along the way, even when you are not needing us. At the time you want to access us, we will have been there for the long haul.

“We’re not going to say, ‘now you’ve had a stroke we’re interested in you as a person…’ If we’re going to tackle health problems in Scotland then we have to say we’re not just interested when you present with a clinically interesting condition to manage.”

Judson says the charity can support NHS services as “part of the care pathway” and also provide a platform for “hard conversations” where it can be the voice of people living with the condition.

“No Life Half Lived is about saying how do we do health improvement work and redesign systems so that our amazing NHS staff get to do what they are training and specialist in doing,” she says, pointing to an example where one service user described how his dream was to be able to ride a horse again after his stroke. 

“We need that to be in his care plan. Then it’s about saying that might mean the stroke specialist coming to the stable and seeing what it means for that person. Bringing the care to where the person is.”

Judson recognises that the ambition is a long-term one.

“I’m comfortable with the idea something might get achieved and I might not see it,” she says.

“I want to have contributed to it. We’ve been here for 100 years, in fact, it’s our 120th anniversary next year and there is something about saying what we would like to see in the next 50 to 100 years and be bold around that.”

Long-term cultural change includes changing the rhetoric around personal responsibility, according to Judson. This includes policies on food, public transport and other matters.

“I don’t think people live their lives thinking ‘I’d really like to land the NHS with a huge bill at some point’. A lot of the choices we make are not really choices. If you live in an area of deprivation, you don’t get to decide what supermarket opens up, your access to fresh and economically available food, that’s not something you have a direct influence over. The Food Standards Agency has been bold, sometimes controversially, but I think we do have to be bold around these issues.”

As a charity, this will mean engaging its service users with an understanding approach, she adds, rather than one “normally acceptable in health policy”. The example she gives is one where a smoker tells them they have cut down but cannot quit entirely. 

“I don’t ever want to get to that paternalistic position where we’re saying, ‘if you don’t commit to giving up smoking, we can’t help you’. It’s ‘where is that person at, and what do they want to achieve?’ not ‘where are we at?’

“If it’s running around the garden with their grandkids and having one or two cigarettes a day, then we should be there supporting that person.”

But has the first six months in the new role made Judson reflect on her own life?

“Although I knew there was a lot of people affected by the conditions, I didn’t realise how big it was,” she says.

“That means it’s a lot more likely to happen to me. I realised it is in my future. Whether it’s me, my husband, a member of my family, the chances of me getting through life without that having an impact on me is incredibly slim. That was quite a sobering moment, and it made me think about our work as a charity. What we do, in our way, can actually have a big impact. We need to maximise that as much as possible.”

This feature was sponsored by Chest Heart and Stroke Scotland