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Improving the NHS waiting list experience

Author: Andrew Grimes
Illustration: Helen Couper

This article is based on insight collated during our service design and research work for NHS England, NHS Digital, NHS BNSSG and NHS Gloucestershire. It’s intended to be useful for anyone responsible for a health pathway with a waiting list.

Tackling the backlog is difficult but we’ve learnt there’s lots we can do to improve patient experience. Improving the experience can make the wait time feel shorter as well as reduce patient and staff anxiety.

The challenge

Tackling the backlogs, and dealing with the demand suppressed by COVID is one of the biggest challenges facing the NHS. We need to manage greater numbers of patients in worse conditions. Frontline workers are exhausted and depleted from handling the pandemic - and there are doubts about how much the independent sector can really do to increase the overall amount of care provided. Long waiting lists are a reality that will be with us for some time.

So, it’s never been more important to consider the patient (and staff) waiting list experience. We need to do all we can to meet clinical, emotional and practical needs, because not all waiting experiences are the same. Some are more tolerable than others. Some make more sense. Some feel more comfortable. Some could even feel like time well spent.

What can improve the waiting experience?

Drawing from our research on autism diagnostic services, our investigations into introducing pre-recorded video in elective care pathways, our award winning research on the 111 service (and other NHS projects) we’ve collated a list of seven principles to consider for any service that’s currently providing a waiting list:

  • Provide more information about what patients can expect
  • Cater for access needs
  • Provide guidance around things people can do while waiting
  • Provide regular reassurance on waiting list progress
  • Help patients to feel cared for while they wait
  • Provide options for immediate support 
  • Give guidance on ways to prepare for an appointment / procedure
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1. Provide more information about what patients can expect

Jamelia tries to find and interpret information about the bus route. She wonders about stops along the way, and how long it will take. 

Experience analogy 1: Jamelia tries to find and interpret information about the bus route. She wonders about stops along the way, and how long it will take. 

Why is this important?

Imagine waiting for a bus, but having no idea where it is going, what the journey will be like, or when it will arrive. Patients have told us that this is what it can feel like on elective care pathways. 

The amount that patients know about where they’re going and the steps involved has a significant impact on their perception and experiences. Conversely, the less information they have the more meaningless each wait will seem.

Things to consider

  • Patients value knowing more about the professionals that they will meet. This is the expertise they’re waiting for - a little more information here can help them to understand why the wait is worthwhile.
  • Patients have described the experience of not really knowing what a particular routine appointment was for or what it would lead to. Making sure they know is an important part of keeping patients engaged and involved. 
  • Being clearer up front can help to avoid the potential for disappointment. A two year wait for an autism diagnosis can be a painful anti-climax for parents expecting this to unlock extra provision (when there may be none).
  • We’ve seen some evidence to suggest that providing an overview of the whole process (even where this is subject to change) helps patients to understand their current reasons for waiting. 

2. Cater for access needs

Jamelia arrives at a bus stop. The information that’s been provided about the service is too complex to engage with. She wonders if she’s missing some important details, but gives up trying to read the notices.

Experience analogy 2: Jamelia arrives at a bus stop. The information that’s been provided about the service is too complex to engage with. She wonders if she’s missing some important details, but gives up trying to read the notices.

Why is this important?

Waiting feels more meaningful when patients are sure that the appointment / consultation will work for them. This means ensuring that a patient's ‘reasonable adjustment information’ is shared routinely between care systems and is acted upon. We’ve seen how hard this is to coordinate, but it’s absolutely essential. Without proper consideration of accessibility, services simply can’t deliver equitable outcomes. 

Access to information is also essential for patients to feel actively involved in their care. And yet, according to Health Literacy UK, health information in current circulation is written at too complex a level for 43% of working age adults (16-65 years); a figure that rises to 61% if the health information includes numbers.

Things to consider

  • Patients often have sensory, motor or cognitive needs that can impact their ability to access services or information. But people have many other reasons for needing more support. Some may need assistance when English is not their first language. Many patients have more temporary issues that result in needing extra attention. It may be, for example, that they’re frightened, stressed or in pain. Considering these needs as part of helping patients to feel actively involved in their care, will make waiting feel more bearable.
  • Investing in content testing, ensuring communication at a suitable comprehension level for the widest patient audience possible is vital for addressing the health literacy gap. This will mitigate against the risk of patients making poor decisions while they wait - and help them to take safer steps in the management of their own care.

3. Provide guidance around things people can do while waiting

With nothing to occupy her mind while she waits, Jamelia’s thoughts start to spiral. She worries about the journey ahead.

Experience analogy 3: With nothing to occupy her mind while she waits, Jamelia’s thoughts start to spiral. She worries about the journey ahead.

Why is this important?

Over the course of a long wait, patients can see their symptoms worsen. A poor decision, made in desperation, can make matters far worse. On the other hand, a smart early intervention or two can make a big difference to outcomes overall. 

Waiting times can be used profitably to reduce symptoms, shorten recovery times and avoid knock-on complications. 

Things to consider (based on our research)

  • Telling patients something doesn’t always encourage or enable them. What they need is to be coached and actively involved in their care. This implies a dialogue between patient and professional health care providers / service. It means being helped to feel calm and unrushed during consultations. It means being encouraged to ask questions. It means feeling knowledgeable as part of feeling in control (for example, learning how I got my condition may be an important step towards my coming to terms with a new reality - and my role in taking positive steps forward).
  • Diagnosis isn’t always necessary for determining what interventions can be tried. We heard from professionals that some interventions are safe enough to try, being broadly helpful to anyone (e.g. light exercise for back pain is always advised, even though this might feel counter-intuitive). 
  • Patients sometimes talk about feeling like they’re back in the classroom when presented with healthcare information. Ensuring that content doesn’t feel too academic / intangible will help them to engage. Catering for a range of learning styles and paces is key.
  • Our research often reveals insights from people who, for whatever reason, are not proactive. These are people who tend not to question their care, and want just to be told what to do by professionals. We therefore have to consider that many patients will not go looking for the information that could transform their outcomes. It’s not enough to make findable content on nhs.uk. Many patients need it handed to (or perhaps prescribed for) them: a well timed, up to date and relevant leaflet (or digital equivalent). 
  • We’ve also heard stories from overly proactive patients who need help avoiding bogus content - to avoid poor decisions. Prescribing content may also help these patients, stepping in before they do too much of their own research.
  • Signposting to relevant social groups can be very helpful to patients as they wait. It can help to stop their worlds getting smaller as their conditions worsen (or if they have to give up work). This’ll help to connect people with a community of shared experience - one that can provide practical advice, a sense of belonging, the knowledge that they’re not alone with their condition, and perhaps even some inspiration and hope.
  • Signposting to other online resources relating to relevant, non-medical advice, for example for financial support, can also be very helpful. Many patients want to use their waiting time as profitably as possible. Saving them research time and giving them confidence that they’re doing everything they can do will feel very welcome and worthwhile.

4. Provide regular reassurance on waiting list progress

Jamelia phones up the bus company to check if a bus is actually coming. She’s on hold for quite some time.

Experience analogy 4: Jamelia phones up the bus company to check if a bus is actually coming. She’s on hold for quite some time.

Why is this important?

NHS staff receive high volumes of enquiries from patients on elective care pathways, just to ask whether they’re still on a waiting list. Being more proactive with providing updates - even if just to say we haven’t forgotten you - will help patients to feel remembered and reassured. It’ll also free up the staff time lost to dealing with these calls and emails. 

Things to consider

  • Allowing patients to monitor progress against a plan can also help them to stay motivated with the actions they need to take.
  • Being able to keep track of the bigger picture is useful in this context. A view of what’s already been completed provides confidence that the next step is a meaningful one that builds on the last. A view of the steps ahead can provide reassurance that agreed plans are still in place. 
  • A vague idea on waiting time is better than no update at all. If these can be based on average current times so much the better. The transparency is appreciated and can make waiting much more tolerable.

5. Help patients to feel cared for while they wait

Jamelia feels lost and alone. She wonders about other options - maybe she should hitch hike?

Experience analogy 5: Jamelia feels lost and alone. She wonders about other options - maybe she should hitch hike?

Why is this important?

Patients often feel isolated and alone with their conditions. A long wait without contact can exacerbate this. They can feel neglected, lost and uncared for. When symptoms worsen they can spiral and catastrophise. 

Human contact is most effective, but an occasional email or an automated message here or there can also make a massive difference to the experience of waiting. Feeling remembered is key, as per the previous principle. But it’s also important to send patients relevant messaging and suggestions to help them feel talked to and cared for while they wait.

Things to consider

  • Messages pushed to patients are more likely to be viewed with a positive mindset - for the most part with something approaching gratitude for the additional attention. This contrasts to the moments where patients go looking for content themselves, where they’re much more likely to have been driven into action by worries, anxiety or painful symptoms.
  • Patients need to be able to control the amount of detail that they’re able to consume. It is easy to overwhelm patients with options or detail to consider. Sending them a small selection of well timed information is therefore the most helpful strategy. For example, when joining a pathway this might include overview information, ways to get in touch, and a handful of useful resources to consider. 
  • Psychosocial aspects of health are often as important to consider and cater for as the physical aspects. This means signposting to patient groups, local/national charities and carer networks. It means taking time to present stories from patients and carers to share with patients (alongside medical guidance and updates).
  • It’s really useful for patients to hear from other people with similar lived experience during these times. Healthcare professionals can tell patients about a condition, but they don’t know what it is like to live with it. Hearing patient stories or connecting with other patients / carers can do a great deal to help them to understand the day-to-day realities of living with a condition.

6. Provide options for immediate support 

Things take a turn for the worse. Jamelia gets cold and starts shivering.

Experience analogy 6: Things take a turn for the worse. Jamelia gets cold and starts shivering.

Why is this important?

Prioritisation, triage and signposting presents a demanding challenge to healthcare professionals at the best of times. With higher numbers of patients waiting for longer periods, the risks of getting this wrong increases. And a lot can change over the weeks (or even months) that you might be waiting. It’s therefore becoming increasingly important to provide ways for patients and carers to self service, escalating matters themselves if appropriate. 

Things to consider (based on our research)

  • Educating patients and carers on precise red flags to watch out for the condition they’re managing helps them identify deteriotations that could be critical to escalate. This can also help to remove ambiguity on who emergency routes are intended for.
  • Giving patients ways to let the service know if things have changed for the worse can help to reduce the burden on GPs of dealing with follow up enquiries. 
  • Our research on the 111 service highlighted the opportunity to let some patients know about quieter times of day for A&E services. It can be reassuring to patients to know that they’re not being asked to come straight down, but to come at a quieter time when they’ll likely be seen quicker.
  • Patients can also benefit from understanding the diverse range of immediate support options available to them. They often default to thinking of going to A&E when signposting to their local minor injury unit or pharmacy might provide a quicker and more effective solution. 

7. Give guidance on ways to prepare for an appointment / procedure

When the bus finally arrives, Jamelia is frustrated to find that she doesn’t have the correct money for the fare.

Experience analogy 7: When the bus finally arrives, Jamelia is frustrated to find that she doesn’t have the correct money for the fare.

Why is this important?

We spoke to a patient who went for an endoscopy without really knowing in advance what the process would involve. When he learnt that they were going to put a tube down his throat he became anxious and worried. The procedure took a long time, required additional members of staff to support him and left him feeling traumatised. Clearly he would have benefited from being better prepared.

The time immediately before an appointment or consultation can be critical, and not just for mental preparation. There are practical things that can really help to make best possible use of the time spent with healthcare professionals. Elements that can make things run more smoothly. 

Things to consider

  • Helping patients to know what they can do to prepare for an appointment should include access arrangements / logistical matters such as where to park and how to find your way.  
  • Advice on what to bring with you can really make a difference to patients. The recommendation to bring a dressing gown and slippers or a pillow from home is always welcome. 
  • Advice can also include guidance on the sorts of questions patients might usually ask during their consultation. Many patients need encouragement to talk about frightening or embarrassing matters, and can end up regretting a missed opportunity to discuss what’s been really bothering them. Normalising these questions by talking about what other patients tend to worry about can really help with this.
  • Getting patients to do specific ‘homework’ tasks (e.g. completing a survey) in advance of their appointment can help patients to feel sure that they’ve passed on a comprehensive view on their condition - saving time and reducing the pressure of getting this right during their appointments. (It’s also worth keeping in mind that patients can get fatigued by questionnaires, and if each corner of the NHS asks for similar information it can lead to the understandable feeling that they’re not being listened to).
  • Video versions of key content pieces are effective in helping patients to follow visual instructions / engage with difficult new concepts. They can also be great ways to extend the perceived time spent with professionals. Guidance can be difficult to digest in the context of a short appointment. Having a recording to refer to afterwards can greatly assist in learning a new exercise or how to use a new medical instrument at home.
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