interviews

Self care is for everybody

Susan Swientozielskyj, head of long term conditions in the Nursing Directorate for NHS England, and a board member of the Self Care Forum, talks to NHE about why it is imperative for people to take more control of their own health – and how NHS England can help.

Susan Swientozielskyj has more than 30 years’ experience in nursing and healthcare, across private companies and in the NHS, and is convinced that self care is one of the most important trends in the sector.

She said: “We need to ‘change the conversation’. We talk about co-production and shared decision making, which we’ve been working on over the past few years, and we’ve made a lot of good progress with advising people on the kinds of questions they might want to ask when they do come in to see their GP or nurse. It’s important the patient knows what kind of information they want to take away.

“But we need to be prepared to respond. We also need to change the way we inquire – asking what people want, what they’ve tried. You need to be able to question what a person understands by healthy eating, whether they really understand what a unit of alcohol is, or that you need to have exercise every day that’s going to get your heart beating. It’s should be really easy to have that conversation, but it’s not when you’ve not been doing it ordinarily, or when you’re pushed and your clinic’s full. But it shouldn’t just be ‘tick box’.

“Every time those interactions happen, there’s an opportunity. We want to shape what those interactions look like, and what happens in that ‘space’ between patients and professionals. Often, it might be a time thing, or you might be stuck in your historical role of ‘how you’ve always done things’: people come in, are treated, out they go. We do need to change what is happening in that conversation space.”

Giving people those preventative health messages at every opportunity – Making Every Contact Count, to give it its official branding – is the first and key step in self care. People cannot take more responsibility for their own health unless they have the knowledge and confidence to do so.

She praised the work of the Health Foundation, the Royal College of GPs, National Voices, and others committed to making this change and pushing for it, but said that ultimately it comes down to people making their own decisions.

Opportunities everywhere

Although Swientozielskyj’s role centres on long-term conditions, where self care has a big role to play and can improve outcomes too, she told us: “Self care is for everybody, no matter where you are on the continuum of health. I can’t look at any issue without looking at where the self care opportunity is – whether that’s using technology, or education, or behaviour, or professional training. There are so many opportunities.”

Giving a ‘prevention is better than cure’ message as old as medicine itself,  Swientozielskyj told us that the ultimate goal is to stop long-term conditions developing in the first place, and that changing behaviours and attitudes to health and wellbeing were at the core of that in many cases.

“We need to take responsibility for our own health and wellbeing,” she said. “It starts with us first. There’s a moral obligation; until individuals start to take more responsibility, not a great deal will change.

“The nemesis we now face is long-term conditions that are behaviour-related and lifestyle-related illnesses.

“It’s about how we behave not only as individuals but how we raise our families and act as role models, as parents or as professionals. It does matter, and if we don’t take responsibility then the problems we’re facing are not going to go away, they’re just going to get worse. We’ll see some real problems down the line. We have an ageing population – that’s great, but we want people to age well. I don’t want to be dependent and sick. We’ve got a mountain to climb!”

The role of NHS England

We asked Swientozielskyj about NHS England’s role in promoting self care, and to what extent a centralised push is appropriate versus frontline clinicians changing the conversation themselves. Clearly, people and clinicians will be resistant to the self care message if they think it is just about cutting NHS costs, rather than improving health.

She said: “We all have a part to play, and we can’t do this in isolation. We’ve been talking about self care for a long time, and it’s now got a profile at government level, with ministers behind it, our new chief executive of NHS England is behind it – but we all have a role to play.”

She said things like the Integrated Digital Care Technology Fund (Safer Hospitals, Safer Wards) and the Nursing Technology Fund will help support better care and treatment in ways that involve patients more, and added: “We also have a massive role with partnerships, linking in with the charities, the royal colleges – a professional leadership role, on top of our role as a commissioning organisation.

“One of our six priorities is citizen participation and empowerment. Our new chief executive, Simon Stevens, is really keen to unlock how we better support patients through self care; how does that translate into commissioning language? We have access to funds and technology, great partnerships, an influence on policy.”

Access to records

Technology is also needed for self care to work: Swientozielskyj sounded frustrated in our interview with the slow pace in recent years of giving people access to their own health records.

“We know that patients with long-term conditions who’ve got access to their medical record are really good at managing and gate-keeping their information. It helps them to manage their condition, their appointments and their life.

“Information is a key component of people being able to self care and self manage. Access to information, access to your own medical record – we know it’s a good thing. I would love to have it, but I haven’t got it at my practice. I will campaign at my practice to try to get it! It’s technology that’s very possible – but one that’s been very slow to get off the ground.”

Similarly with online care planning, there are pockets of really good practice and pioneering work, but the wider system has yet to catch up. Some clinicians and practices still need to be convinced, she said, even on things like ordering prescriptions online, or being able to book and cancel appointments online.

“It puts people in control, and lets them manage whatever it is they need to manage. It’s great for people and individuals but also really good for the system, whether it’s keeping people out of hospital, ensuring they’re not running out of medication, or that they have a clear care plan.”

The Self Care Continuum

The Self Care Continuum can be thought of as a “birth to death model”, Swientozielskyj told us. It starts with new parents making the right decisions on immunisation, and teaching children how to manage a minor illness, and when it’s better to go to the doctor or nurse. The Self Care Forum has lots of resources available on the self care of minor ailments, and how to spot the difference between something that needs a clinician’s attention and what can be dealt with at home or with a visit to the pharmacy.

“There’s learning to be done throughout life,” she said. “People are going to develop illness – we’re human – but they’ll also be those that are lifestyle-related. The person who has early lung disease or severe lung disease who’s still smoking 20 or 30 cigarettes a day, they need to know that the evidence base for stopping smoking even when you’ve got quite advanced lung disease is significant. Your health will improve.

“If someone’s suffering with heart disease or is overweight or developing type 2 diabetes, there are things we can do – because by then you’re involved with professionals and a care team. It becomes supported self care at that stage. How can we help you to make those lifestyle changes that will help your condition improve and help you to have a better quality of life? That will come into some of the care planning conversation.”

She said that self care and supported self care carries right on through to the end of life. On a recent visit to St Joseph’s Hospice in east London, the staff were keen to show her all the self care activities available for people approaching the end of their life.

“People were still in control of the things that they could be in control of, and have those choices,” she said. “So the continuum continues to works well to describe what the pathway is and where the self care or supported self care intervention lies.”

Evidence base

The evidence is strong, she said: self care improves outcomes for public health and for patients, while also ensuring NHS resources can be spent in the most effective way. The advice from the Self Care Forum itself has also been built on a “very strong evidence base”, she said, which although it arises from the minor ailment work, is “replicable across the continuum”. “We’ve been using it and incorporating it into the house of care model for long-term conditions,” she added.

“You can’t prescribe exactly where people will go for information – very switched-on people might want to know more about the evidence base for technology to support their diabetes, for example, and visit the NICE website. Then there’s The Health Foundation and The King’s Fund: they have information aimed at professionals but some patients might be interested in that. Others will want simpler advice. There’s information in different places and at different levels.”

‘We all have a role to play’

Swientozielskyj concluded: “We each have a unique contribution, but we can be more than the sum of our parts. We know the NHS can’t continue doing the same things it has been doing, because the demand is relentless. There’s a lot we need to do.

“Ultimately it comes down to behaviour and culture. That’s why people need to feel positive about this, and to realise that there are things we can all do, no matter how small. It doesn’t all need to be ‘big bang’. Start as individuals and professionals.” 

Tell us what you think – have your say below or email [email protected]