The impact of waiting: the stories behind the numbers
From the moment a patient gets referred by their GP for a specialist scan, test or treatment, some individuals may face delays due to the pressures the NHS currently faces.
This month, we look at each stage of this journey to highlight the impact that delays can have and the steps that services can take to help support people facing these issues.
Getting referred
“Delays in referral for an orthopaedic assessment have left patient in [severe] pain, immobile and very frustrated.”
- Story shared by Healthwatch Cambridgeshire
Delays in referrals caused concern amongst some patients who shared their stories with us in September.
Referrals are when a practitioner has made an appointment for someone to see another specialist. This could be for a test or to see if another specialist should see them.
As this is often the first stage in a journey towards treatment, referral delays mean people can wait a long time before their concerns are addressed.
A delay is not only stressful. It can also lead to ongoing pain and sometimes make people’s condition worse than when they were originally referred.
Steps that would help
Our work on GP referrals suggests that people often must make several appointments before being referred. Our suggestions for improving people's experience of GP referrals include:
- Better access to GP appointments, including through digital telephony;
- More care navigators to ensure a smoother patient journey;
- Greater appointment flexibility; and
- Clear and regular communication between staff and patients.
Getting tested
“The liver specialist only let me go home on condition I became a regular outpatient with a full blood test every month. My monthly appointments happened until February 2023 but I have had no appointment since then. I have even been down in person to the actual hospital department and spoken to the doctor's secretary only to be told I am still on the waiting list, covid delays, lack of staff etc. I then had a blood test done at my GP surgery in April 2023 and my GP was quite shocked by my poor liver results. He said that I really need my appointment with the liver specialist but even my GP has no power or authority to make my appointment actually happen.”
- Story shared with Healthwatch England
Tests might be blood tests or other scans. These tests may relate to diseases such as cancer, which cause considerable concern for people whilst waiting.
We heard how delays for scans and diagnostic tests mean people are left waiting to know whether they have a condition or the next steps.
People often feel pressured to find out for themselves what is happening rather than wait for further contact.
Searching for answers can lead to frustration as people find different services and departments manage parts of their referral journey. What people have been told about the urgency of their condition does not seem to be acted on.
Steps that would help
Clear and timely communication is important to help patients understand what tests are being done and why.
Once tests or scans have been completed, people need to know when they can expect results and what to do if they feel there is a delay.
Getting treatment
“I have been waiting 8 months for knee replacement surgery. I had my last operation cancelled at short notice 4 weeks ago, and no one has been in touch with me since, I have now contacted PALS. My general health has deteriorated, and my mental health has significantly deteriorated due to a significant increase in pain and loss of mobility.”
- Story shared with Healthwatch England
Elective care can also take some time to receive, with waiting times described as long in several cases we heard about this month.
The waiting times we heard about ranged from weeks to several months.
People also told us about appointments being cancelled at short notice, creating further uncertainty around the expected treatment date.
The feedback shared with us highlights how people might accept waiting times for elective care whilst assuming they will be treated on that date. Life can end up on hold if waiting for procedures related to mobility.
Subsequent cancellations and delays make them feel forgotten, and the reasons for such changes to treatment plans are only sometimes clear.
Steps that would help
Over seven million people are currently waiting for referral to treatment.
Our previous polling on this area looked at the experiences of people who had their care disrupted.
We found that:
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39% of the 1,084 people had their care postponed or cancelled on two or more occasions, and
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18% of people had their care cancelled or postponed at the last minute, which the NHS defines as on the day or on arrival to the appointment.
We also found that if you are a woman, on a low income, from an ethnic minority background or have a disability, you were more likely to have a worse experience of waiting for care.
Steps that would help improve people's experience of waiting for care include:
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Being clear about why appointments and elective care need rescheduling;
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Providing a contact when care has been postponed to discuss the implications and what support is available until treatment is received for issues like pain relief or mental health; and
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Understanding why some communities face inequalities in access and taking steps to address the problem.
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