Understanding the moments that matter to patients

Macmillan Cancer Support has identified eight behaviours that can help staff build a positive relationship with patients and improve care. The values-based standard is already achieving results at the troubled Barts Health NHS Trust.

Macmillan Cancer Support has identified eight behaviours that can help staff build a positive relationship with patients and improve care. The values-based standard is already achieving results at the troubled Barts Health NHS Trust

Macmillan Cancer Support’s values-based standard encourages better relationships
between patients and professionals. Picture: Alamy

While clinicians may focus on diagnosis and treatment, for patients with cancer, the overall experience of care is as important as the outcome.  

Yet according to Macmillan Cancer Support, evidence suggests that almost one in five people with cancer feel as though they are treated as a set of symptoms, rather than as an individual. 

Since 2009, the charity has been promoting its own values-based standard, which concentrates on the ‘moments that matter’ to those affected by cancer. Based on eight behaviours, the standard encourages better relationships between patients and professionals, leading to improvements in the quality of care. 

‘Our research shows that patients are much more likely to tolerate issues such as peeling plasterwork if they are treated with compassion, dignity and respect,’ says Macmillan’s head of inclusion Jagtar Dhanda. ‘This outweighs everything else and has a massive effect.’ 

Putting the standard into practice has led to a variety of small but significant changes. For example, at one trust, cancer patients who told staff they were unhappy about their food options now have a much more varied menu. Another trust has set up a storytelling scheme, enabling patients to share the pros and cons of their experience with staff.   

Role models 

Although clinical nurse specialists in cancer undoubtedly play a major role in patient care, all nursing staff are critical in improving patients’ experiences. ‘It’s not just about senior nurses,’ says Mr Dhanda. ‘There are simple behaviours that any professional at any level of nursing can do.’

This includes using the name that someone prefers, and being honest when you don’t know something, but saying you’ll find out.  ‘If you get it right at the beginning, you’re more likely to have patients with a positive experience of their care,’ he says. 

Information-giving is one of the most important aspects of care, and an opportunity for nursing staff to demonstrate good practice. ‘Nurses have a lot of face time with patients, so they have a sense of when it’s best to give information and how to provide it,’ says Mr Dhanda. ‘Information can be complex, full of jargon and not very personalised, or it can be tailored, provided in digestible chunks and with the right support offered. Nurses can act as role models for other professionals, showing how to have these conversations well.’    

Experience and outcome 

These discussions should also take account of a range of contextual issues, such as whether English is the patient’s first language, or a carer needs to be present. ‘If others in the team see this interaction being handled well, it can have a positive effect,’ Mr Dhanda says. ‘Often they will be able to see a noticeable difference, where trust is visibly enhanced, the patient is much more at ease and they feel they can confidently ask other questions.’ 

In contrast, second-rate episodes of care can lead to longer-term difficulties, warns Mr Dhanda. ‘If their experience was poor, it may mean that if their symptoms return they don’t bother seeking help. They might also stop complying with their treatment.’ 

He cites reviews that show the correlation between patient experience, clinical effectiveness and outcomes, pointing to the Francis report into care failures at Mid Staffordshire NHS Foundation Trust. ‘In particular, there’s a strong connection to patient safety,’ he argues. ‘The report clearly showed the impact of not treating patients with dignity and respect.’ 

In 2014, according to the results of the national cancer patient experience survey, Barts Health NHS Trust was the worst performing in the country, and was the second-worst the year before. The trust is the largest in the country, with five London hospitals and 15,000 staff. The survey covers all 148 acute and specialist NHS trusts in England that provide adult acute cancer services. 

Front-line expertise

Ellen Sykes, who qualified as a nurse in 2005, joined Barts in March 2015 as project lead for the Macmillan values-based standard, and was funded for three years. ‘The feedback was clear that we just weren’t getting this right,’ she says. ‘What we’re taking about essentially is a culture change. Staff are focusing on their vocational motivation to improve patients’ experience.’  

Rather than target professional groups, she works within inpatient clinical areas, bringing a wide range of  people together regularly to discuss the challenges. ‘Nursing staff spend the most amount of time with patients, so other staff may think that they don’t have a role to play,’ she explains. ‘But the more we can encourage others to become involved too, the better.’ To that end, domestic and administrative staff have been asked to contribute their thoughts. 

However, nurses remain crucial to its eventual success. ‘I spent a lot of time at the beginning explaining what we were trying to do and why,’ says Ms Sykes. ‘There can be a perception that anything involving change is top down – “you will do this because I’m telling you to do it” – rather than getting people on board. But I’m saying: you’re the ones who’ll be driving this and it’s the voices of you and the patients at the centre. I believe that the expertise is at the front line – the challenges are there, but so are the solutions.’ 

 ‘Ripples in a pond’ 

In a struggling NHS, lack of time is often cited as a major obstacle. ‘Part of it is getting people to think differently about the opportunities that are there already,’ she says. ‘But you need to be able to flick that switch a little bit. For example, you have to help people wash, but that gives you the chance to spend time talking to them.’  

Giving time to this kind of interaction is sometimes wrongly dismissed as the ‘soft stuff’ says Ms Sykes. ‘In my view, this is the most important. There’s a wealth of evidence out there, not just from Macmillan, to say these are the things that matter most to patients. How relationships are built really influences someone’s experience of their care. We get this right and other things fall into place.’ 

It can also help staff to put the everyday challenges of their work into context. ‘We’ve done a lot of work finding out what patients think,’ says Ms Sykes. ‘They will say, “okay I had a long wait at the clinic. But I appreciate it’s because the professionals are taking time with other people, in the same way as I want them to take time with me”.  But what really upsets a person is the way someone spoke to them. We’re told this all the time.’ 

They are achieving results already. ‘There’s still a long way to go, but we can see that the feedback is improving now,’ says Ms Sykes. ‘It’s like ripples in a pond. You start that process and then just watch it spread. The impetus for the change comes from within the team. It’s very much patients and staff coming together, which is quite unique.’  

The Macmillan values-based standard 
  • Naming: patients are experts on themselves and the information they give helps you understand them.  
  • Private communication: patients decide if information can be shared and with whom. 
  • Communicating with more sensitivity: patients are much more than their condition. They need communication that reflects this, with support and the ability to share any concerns. 
  • Clinical treatment and decision-making: patients need to understand what will happen to them, be informed of treatment options and why particular recommendations are made. This includes how treatments might make them feel and any longer-term effects.
  • Acknowledge any urgent need of support: patients should not feel they are being ignored. 
  • Control over personal space and environment: patients should feel comfortable. 
  • Managing alone: patients should be supported to manage their own care, but know where to get help if they feel worried or need support. They shouldn’t feel they are coping alone. 
  • Getting care right: feedback should be encouraged, with concerns acted on to improve future experiences of care.  
Top tips
  • Ask patients how they want to be addressed, and make sure you act on what they say. ‘Just getting right what someone wants to be called can open up conversations about what else is important to them,’ says Mr Dhanda.
  • Make sure consultations are private and that patients are told if this isn’t possible.
  • Give patients the space and opportunity to ask questions, including those about alternative treatments.  
  • Be honest with your patients, telling them when they might need to wait patiently for care because others have more urgent needs.  
  • Be an agent for change, highlighting when the system is at odds with a patient’s legitimate needs, so that improvements can be achieved in the future. 
  • As patients prepare to go home, make sure you’ve discussed lifestyle changes and they know where to find help. ‘Transition times can be the worst for patients, leaving them feeling isolated,’ says Mr Dhanda.  
  • Actively seek feedback from patients about the quality of their care, and remember to respond positively, even if their comments are negative. ‘One of the key things is being able to take positive messages back to staff from the patients,’ says Ms Sykes. ‘Acknowledge where we need to improve but also recognise some of the amazing experiences that people have had – we don’t do enough of that.’

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Lynne Pearce is a freelance health writer

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