Improving support following diagnosis of chronic conditions

Introduction

This report summarises findings from a research project exploring people's experiences of receiving diagnosis of chronic illness. It’s intended to be useful for anyone responsible for health pathways which involve diagnosing these conditions.

These diagnoses can be difficult to receive, but our research highlights ways to help patients feel empowered to make positive changes to their lifestyle that help them better manage their conditions. Patient empowerment can help improve health outcomes as well as reducing the support patients need from the NHS, saving time and money.

The challenge

Empowering patients to manage their own conditions is an important part of the NHS Long Term Plan. The moment of diagnosis and the time immediately following it is a critical moment of interaction between the patient and their healthcare team. It is an opportunity to set patients up with the best possible toolkit to make health-promoting changes.

Based on previous research experience, we know that there are significant differences in patients’ motivation and ability to make the changes needed to manage their health conditions. Recent thinking around health inequalities gives a good understanding of some of the underlying factors, but there is still a need to uncover what the NHS can practically do to help patients process diagnoses of long-term conditions and implement positive changes.

We need to consider practical, emotional and informational needs and to allow for these to differ between people.

Our primary research question:

What practical, emotional and informational support do people need when they’re diagnosed with a condition that requires them to make lifestyle changes?

Research approach

Over a period of four months, we used video ethnography to understand the experiences of three people who had been diagnosed with chronic, non-life threatening conditions within the last six months. This approach makes no claim to statistical significance, rather it generates deep insight into individual experiences. It can often be used in parallel with wider market or health research where statistical significance is carefully considered.

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We’ve condensed our findings into a list of four principles:

1. Consider patients for whom diagnosis will be a surprise.
2. Provide routes to mental health support for all patients.
3. Carefully manage the quantity and timing of any information patients receive.
4. Consider providing practical support for the trial-and-error process of making lifestyle changes.
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Why is this important?

The patients we spoke to who expected their diagnosis had very different experiences from the patient who didn’t.

Patients who expected to receive some sort of diagnosis were surrounded by experts who understood their condition and knew the next steps. They received an answer to a question that was worrying them. They praised the care they received and felt well-supported through the diagnosis process and afterwards.

James said: “Before I had the diagnosis, it was pretty horrible, life was pretty miserable… and once I got the diagnosis, [I thought] okay, that's a relief. It's not anything more hideous.”

By contrast, Isobel visited her ophthalmologist because of a problem with her eye. She received test results that indicated multiple sclerosis in a letter she didn’t fully understand and had to wait until a subsequent visit to the ophthalmologist to confirm her diagnosis. She had many questions that the ophthalmologist couldn’t answer, and faced a long wait to see a specialist after he referred her.

During this time she felt “in limbo,” and sought information from the internet. She says she’s lucky to have had the resources for a private consultation, but that her diagnosis experience has contributed to her needing to take time off from work for mental health reasons.‍

Isobel said: “I think I had a bit more of a, I don't want to say - traumatic is a strong word - but a worse diagnosis than my brother. And that's maybe why he's taken it a lot better than I have.” (Her brother was diagnosed with multiple sclerosis a month before she was.)

Things to consider

• Patients’ access to Google means they are now able to check unfamiliar terms in letters they receive. This can lead to them receiving a diagnosis outside of the safe space a professional offers. It may not always be appropriate to copy a patient into a letter from a specialist to a GP until a follow-up appointment can be scheduled.
• Healthcare professionals who are not expert in a condition may have a more negative view of it than those who are accustomed to managing and treating it. This negativity can be conveyed to the patient at the moment of diagnosis, leading to unnecessary distress.
• Offering patients specific content at key parts of the journey can help them avoid making poor decisions or arriving at a distorted view of their condition. This is particularly important but particularly tricky where the diagnosis is not part of an established pathway, such as Isobel’s.
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Meet Isobel

Isobel, 31, lives with her partner and works from home for a large financial services organisation. She was recently diagnosed with multiple sclerosis after seeing an ophthalmologist about a problem with her eye.

Here she talks about:

• Receiving her diagnosis via a letter from an unrelated appointment
• The mental health impact of her diagnosis and her difficulty reconciling that with the fact that nothing had changed for her physically
• Her approach to seeking information in the time following her diagnosis, and “biting off more than [she] could chew.”

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Why is this important?

Our participants had received diagnoses which weren’t life-threatening. Because of this, they felt that they weren’t as entitled to a strong emotional response and put off seeking the support they needed until later, if they sought it at all.

Isobel said: “If I'd have given myself that time sooner, maybe I wouldn't have had so long off work … [but] when I got the diagnosis, nothing had changed with me. The fact that I was physically able still, I didn't feel I had the right to… what am I stopping for?”

Ada said: “It sounds like I'm complaining and I'm genuinely not because there are people that have got terrible conditions or, you know, life altering, affecting the time that they've got left on this world conditions. And I haven't got that.”

For Isobel, this led to what she describes as a mental breakdown, and to her having to take time off work. She has since sought private counselling. Ada and James both describe feelings of anger, frustration and sadness. Ada told us that she’s asked her GP for a mental health referral, and is waiting to see a counsellor. She feels that she hasn’t yet accepted her condition.

Accepting that things need to change is an important precursor to actually making those changes. Ada is aware that continuing to lift heavy things will make her condition worse, but she’s continuing to lift them because being capable and strong is an important part of her identity as a mother. Some patients need support finding a way to move past anger with the changes they need to make, to find a way to peacefully care for themselves. ‍

Ada said: “I don’t want to keep asking them [to help with the housework], I want them to be children. And that's when I will kind of think, oh, I'll just bend over and I'll just pick that up. And that’s the things that I need to try and recognise [so I] don't keep doing, repeating that pattern, there's going to be another way of doing that.”
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Things to consider

• At diagnosis, the focus is often on treating the physical effects of a condition. However, even conditions which aren’t life-threatening or severely debilitating can have a significant mental health impact, which patients are left to handle alone. Providing support or signposting early in the journey could help stop these issues from escalating.
• Acceptance is an important part of the post-diagnosis journey. Consider changing the timing of information, suggestions and interventions to when they are most likely to be impactful.
• We heard from each participant that they didn’t feel they had the right to be angered or thrown off course by their diagnosis. Patients may need to be given permission to feel what they’re feeling, and actively encouraged to seek the support they need.
• Alongside physical care, patients need wrap-around care that includes support for mental health, self-care and lifestyle changes. Some are able to provide this for themselves using resources they already have or can find, but those who don’t have these resources are left behind, exacerbating health inequalities.

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Why is this important?

Information is positive and can give patients a sense of control over their condition. However, patients don’t know what they need to know. This led to our participants lacking important information about treatment pathways or medication side-effects, or over-consuming information about their condition. Both of these cause avoidable stress and anxiety.

Receiving well-timed, relevant information helped people know what to expect. They felt reassured about their treatment prospects and had hope for the future. They felt more included in their health journey and less like an observer.

James said: “So getting the diagnosis, and then being reassured by him that there's… maybe ten different things we can do before we do surgery, it gave me quite a lot of hope.”
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Things to consider

• Patients’ information needs change throughout their journey. There's an opportunity to plan for this and design a service that supports people without overloading them, for example by sending a small selection of well-timed information at intervals in patients’ journeys.
• Patients need help controlling the information they’re consuming. It’s easy to become overwhelmed with options or detail, especially for patients who are accustomed to researching things online.
• Some patients feel reassured by knowing that there are several options available for treatment and that their consultant is embarking on a process of trial and error. This helps them to feel hopeful even if they’re not responding well to the current treatment.
• Where information and support is available to patients at later points in their journey, making this clear at the beginning can stop the feeling that they need to ask all of their questions at once. This reduces the risk of information overload.
• Even patients who are able to seek out information and resources may not always know what they need to know. James gave the example of losing consciousness due to low blood sugar while taking steroids and described how frightening this was.

Meet James

James is 60, and lives with his wife. He runs a business from his home and from the office, and has two children and four grandchildren that he and his wife regularly look after. After two years of persistent chest infections, he was recently diagnosed with tracheobronchomalacia, a condition that affects his airways. He’s had to develop a ritual to manage his condition through trial and error.

Here, he talks about:

• The information that he needed throughout his journey and the impact of not receiving the right information at the right times
• How he’s experimented to find the best way of managing his condition and the need for time, support and financial resources to do this (more on practical support in the next section)
• His pathway to accepting his condition and the changes he’s had to make.

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Why is this important?

Even with support from experts, finding the right approach to manage a new condition is a process of trial and error. When people have the time, support and financial resources to work through the options, plus the resilience to bounce back from setbacks, they can find a routine that works for them, their life and their condition.

James said: "Because of the regime I've got now with the medication and the sleep machine, the C-PAP machine, I can do things now which I couldn't do before because I was too tired… also not getting the repeated chest infections, you know? Cause I do get early signs. I know when one's coming, you know, not having that is, it's just great.”

However, this is a challenging process which requires a good deal of resilience. Not all patients have those resources and some may need more help to make and sustain positive changes.

Things to consider

• Progress towards positive lifestyle changes isn’t linear. Patients need to experiment to find the changes that work for them and need to be supported through the inevitable setbacks. Some have this support available through their existing networks, but others would benefit from occasional check-ins, reassurance and a bit of hand-holding.
• Not all patients have the time or capacity to investigate and try things out. Signposting to tried-and-trusted options could help these people to identify and trial lifestyle changes they wouldn’t have the time to discover on their own.
• These changes are being made at a time when patients’ natural levels of resilience may be impacted by their diagnosis. Consider the timing of support options.
• Having a range of ways to achieve the same end result (for instance, losing weight) can help people identify the option that fits best with their current lifestyle and self-concept. Providing choices and suggestions allows patients to choose what suits them.
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Meet Ada

Ada is 47 and lives with her husband and four children. She’s a full-time carer for her family, and for an elderly family member who she visits twice a day. She was diagnosed with degenerative spondylolisthesis after visiting the GP for leg pain.

Here, she talks about:

• her diagnosis and the clarity that brought her
• her difficulty accepting her condition, and her struggle to reconcile the changes she needs to make with her priorities as a mother and carer  
• the challenges she’s had in making the lifestyle changes she needs to make
• the support she’d like to have received from the NHS.

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This project was produced by the team at Mace & Menter: Kat Thackray, Filipa Costa, Kate Strudwick, Cécile Pujol, Kyle Morris and Saskia Evans.

Thank you to Taylor Mckenzie for generously sponsoring the participant recruitment.

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