Richard HallThe NHS waiting list is visible because it is counted. The administrative work surrounding that wait is less visible, although patients perform more of it every day.
People telephone departments, check whether referrals arrived, pursue scan results, reconcile contradictory messages and discover cancelled appointments. They are not merely waiting for healthcare; they are managing its unfinished administration.
This matters beyond inconvenience. Follow-up work consumes time, requires confidence and persistence, and often occurs when somebody is ill, frightened, financially stretched, disabled or caring for another person.
What the evidence actually covers
The strongest recent evidence concerns NHS services in England. It should not be presented as a precise estimate for Scotland, Wales or Northern Ireland, although the underlying question is UK-wide.
Taken together, these studies describe something more consequential than occasional bad administration. They suggest responsibility for detecting stalled care is being transferred, informally and unevenly, from institutions to patients.
Two-thirds reported administrative failure
In April 2026, The King’s Fund, Healthwatch England and National Voices published repeat Ipsos polling on NHS administration, using 1,908 English adults aged 18 to 75.
Fieldwork ran from 12 to 18 December 2025, repeating a 2024 survey of 1,888 adults. The comparison therefore tests whether patients’ administrative experiences improved across one year.
They did not. Among patients and carers using NHS services during the previous year, 66 percent reported at least one administrative or communication problem, statistically unchanged from 64 percent.
One-third were not updated about expected waiting times, while 32 percent chased test or scan results themselves. Another 24 percent had not been told whom to contact while waiting.
From late letters to unpaid monitoring
Nearly one-quarter received an appointment invitation after the appointment date, up three percentage points. Eighteen percent could not contact anyone to change or cancel an existing appointment.
Fifteen percent were not told or sent information they could understand, and the same proportion received an incorrect appointment date or time. These are failures of comprehension and two-way contact.
The numbers describe an unpaid monitoring function. Patients must notice silence, decide when silence becomes suspicious, identify the responsible organisation and repeatedly seek confirmation that promised actions happened.
Confidence is falling
Public confidence also deteriorated. Only 43 percent rated NHS communication about appointments and results as good in 2025, compared with 52 percent one year earlier.
The proportion rating the NHS good at keeping people informed fell from 42 to 32 percent. Ratings for ensuring somebody was available to contact dropped from 43 to 32 percent.
These declines matter because the prevalence of reported problems barely changed. Patients were not simply experiencing failures; the wider public was increasingly recognising those failures as persistent characteristics of the system.
Silence changes behaviour
Administrative failure altered behaviour. Forty-one percent of affected patients said their experience made them less likely to seek healthcare later, turning poor responsiveness into a potential access and safety problem.
Sixty percent concluded NHS money was being wasted. Fifty-seven percent believed their own time was wasted, while the same proportion thought valuable staff time was also being squandered.
Chasing therefore creates duplicated labour on both sides. Patients repeat calls and messages because ownership is unclear, while staff repeatedly reconstruct cases that a transparent, trackable process should already explain.
The burden is unequal
The burden was not evenly distributed. Seventy-seven percent of respondents from ethnic minority backgrounds reported an issue, compared with 65 percent of respondents from white ethnic backgrounds.
Among people with long-term conditions, 74 percent experienced problems, rising to 77 percent for multiple conditions, against 60 percent among people reporting no long-term condition.
Financial strain amplified exposure: 81 percent of those struggling financially reported problems, compared with 63 percent of comfortable respondents. Younger patients and carers also experienced disproportionately high exposure.
Follow-up labour is therefore regressive. The people managing more illness, less money or greater communication barriers are often being asked to contribute more unpaid administrative capacity to obtain care.
Inside the referral black hole
Healthwatch England’s December 2025 referral report examined where this labour becomes especially dangerous: the space between a GP deciding to refer and a specialist service accepting responsibility.
The research combined a representative YouGov poll of 2,622 English adults referred by a GP during the previous year with 710 responses to a separate, self-selecting qualitative survey.
Polling ran from 7 to 23 March 2025. Healthwatch placed those experiences against more than 20 million general-practice referrals made between October 2024 and October 2025.
Patients are detecting failures themselves
Fourteen percent entered what Healthwatch called a referral black hole: their referral was delayed, lost, rejected or never sent. That improved from 21 percent in comparable 2023 research.
Improvement should not obscure the central finding. Seventy-one percent of those affected learned about the problem only after chasing, meaning patients themselves remained the principal detection mechanism.
Healthwatch separately reported that 70 percent of delays and eight percent of rejections were uncovered only after patients sought updates. Undetected failures may therefore make measured prevalence an underestimate.
Fourteen percent were bounced back to their GP following a delayed or failed referral. Three-quarters reported negative effects on health or wellbeing, compared with 36 percent without referral problems.
The waiting list before the waiting list
The referral black hole also exposes a measurement problem. National waiting-time monitoring largely begins after a hospital accepts a referral, leaving the earlier journey comparatively invisible to public performance systems.
Patients can consequently wait without appearing on the waiting list they believe they joined. Their only practical audit may be a telephone call asking whether anybody received the referral.
Twelve percent were still awaiting referral confirmation, while 36 percent waited longer than one month. Fewer than one in five received confirmation within one week.
What responsiveness changes
Overall, 62 percent were satisfied with referrals and 23 percent dissatisfied. Among people experiencing a referral issue, however, overall satisfaction collapsed to only seven percent.
Acceptance within one week was associated with 88 percent satisfaction. Receiving all necessary information raised satisfaction to 83 percent, while being offered meaningful choice raised it to 77 percent.
When early referral, confirmation within one week, adequate information and patient choice were all present, satisfaction reached 98 percent. Responsiveness was not peripheral; it structured the entire experience.
Nearly half named clear communication among their three most important referral features. Regular updates mattered to 32 percent, while 31 percent prioritised knowing whom to contact with questions.
The GP front door
Unpaid follow-up begins even earlier at primary care’s front door. NHS England’s 2025 GP Patient Survey invited 2.72 million registered patients aged 16 or older across England.
It received 702,837 completed questionnaires, a 25.8 percent response rate, with results weighted towards the registered patient population. Its scale makes the access findings difficult to dismiss as anecdotal.
Among respondents who tried telephoning their practice, 52.9 percent found it easy, improving from 49.7 percent in 2024. Yet 35 percent found it difficult and 14 percent very difficult.
Uncontactability moves demand elsewhere
CQC placed those results within rising demand. Average GP registrations increased by more than 700,000 during 2024/25, while appointment volumes grew nearly ten percent across two years.
Compared with 2022/23, fully qualified GPs per 100,000 patients had fallen slightly by 2024/25. That context helps explain pressure, but it does not remove failed contact’s consequences.
Uncontactability does not eliminate demand; it redirects it. The survey found 6.6 percent went to accident and emergency when they could not reach their practice or identify the next step.
That response was twice as common in England’s most deprived areas as its least deprived areas, eight percent versus four percent. Administrative access can therefore redistribute both cost and risk.
Contactability is an accessibility right
For deaf and hard-of-hearing patients, contactability is also an accessibility right. Healthwatch’s 2024 evidence described practices insisting on telephone booking while ignoring requests for text or email communication.
Patients reported asking spouses or relatives to arrange appointments and receive sensitive information, even when communication preferences were recorded. Uncontactability consequently removed privacy, independence and control over personal health.
Healthwatch also described missing interpreters, cancelled appointments and unusable hearing loops. These accounts were qualitative rather than nationally representative, but they identify mechanisms hidden inside broad satisfaction percentages.
Deaf patients are still being ignored
More systematic evidence arrived in 2025. RNID and SignHealth surveyed 1,114 deaf people and people with hearing loss in England, alongside 404 NHS staff in patient-facing roles.
Seven in ten patients said they had never been asked about information or communication needs. Only 24 percent of surveyed staff said they could always meet those needs.
Among respondents managing another disability or long-term condition, 69 percent said unmet communication needs made that condition harder to manage. Failed contact therefore compounds existing clinical complexity.
The updated Accessible Information Standard requires services to identify, record, flag, share, meet and review communication needs. A phone-only pathway is not neutral when a patient cannot use it.
Cancer care provides a counterexample
Unresponsiveness is not inevitable across the NHS. The 2025 National Cancer Patient Experience Survey, published in July 2026, received responses from more than 64,000 people in England.
More than nine in ten, 91.4 percent, reported a main point of contact within their care team. Among those receiving advice from that person, 95.6 percent found it helpful.
Cancer care is not directly comparable with every pathway, and the survey cannot prove named contacts caused high ratings. It nevertheless demonstrates that clear communication ownership can be designed into complex care.
Digital contact is not automatically responsive
Digital tools can reduce follow-up work, but they are not a complete answer. NHS App use in the King’s Fund polling rose from 33 to 38 percent.
The same organisations warned that patients already navigate multiple applications, websites and logins. Digitisation without simplification can move administrative labour onto a screen rather than remove it.
A reliable digital pathway needs visible status, confirmation of receipt, realistic waiting information and two-way messaging. It must also preserve human contact and accessible alternatives for people excluded by technology.
Build a reply pathway
The King’s Fund, Healthwatch and National Voices proposed treating administration as a core element of patient experience, with national minimum standards, routine measurement and patient involvement in redesign.
They called for simpler digital routes, access to records, stronger administrative workforce planning and programmes sharing effective practice. Their recommendations reject the assumption that administration is merely background support.
For elective care, their essential standard is straightforward: confirm receipt promptly, estimate the likely wait, identify contacts for clinical and administrative concerns, and offer appointment choice wherever possible.
Healthwatch’s referral checklist reaches the same conclusion from another direction. Every transfer should specify who sends, who receives, who confirms and who remains accountable until the next team accepts.
Stop outsourcing follow-up to patients
The NHS needs a reply pathway alongside every clinical pathway. A referral, result, cancellation or deterioration report should generate acknowledgement, ownership, status visibility and a defined escalation route.
That would not abolish waiting lists or workforce shortages. It would prevent patients from spending those waits investigating whether the system knows they exist, and from discovering failures through persistence alone.
Patients will always participate in their care. They should not have to function as its tracing service, exception handler, appointment auditor and unpaid follow-up department simply to keep treatment moving.
YC
Footnote Zone for Patients are becoming the NHS’s unpaid follow-up department
Disclosure: The diagnostic tools referenced below were developed by NokNok, a specialist in online responsiveness tool design.
This Footnote Zone uses NokNok’s diagnostic toolkit to examine how the contactability, responsiveness and administrative failures described in this article can be identified, measured and addressed across healthcare organisations and other service providers.
- Email Finder: This article highlights how patients are frequently left without knowing who to contact while waiting for referrals, test results or appointments. In many organisations, email addresses and direct contact routes have become increasingly difficult to locate, encouraging repeated telephone calls or forcing patients through generic contact forms. Email Finder scans an organisation’s website and related public-facing materials for published email addresses and contact channels, identifying missing contact routes, inconsistencies, hidden addresses and other structural contactability gaps that leave users unable to reach the right department efficiently.
- Reply Radar: The research discussed in this article shows patients repeatedly chasing referrals, appointments and test results because responses are delayed, inconsistent or never arrive. Reply Radar deploys targeted test emails and quantitatively measures reply rates, response latency, acknowledgement behaviour, consistency of responses and other responsiveness benchmarks, enabling organisations to identify where communication delays are occurring before patients become unpaid follow-up administrators.
- Compliance Sniffer: Several studies cited in this article reveal poor communication quality, unclear ownership of cases, missing updates and uncertainty about who is responsible for responding. Compliance Sniffer analyses incoming responses against objective quality, clarity, relevance, escalation and compliance benchmarks, identifying communications that fail to provide meaningful answers, appropriate ownership or effective next steps for patients.
- Mystery Shopper: The article describes systemic breakdowns across the entire patient journey, including inaccessible contact routes, referral black holes, confusing administrative processes and failures to communicate during periods of waiting. Mystery Shopper executes a comprehensive end-to-end responsiveness UX audit, testing healthcare organisations exactly as a patient would experience them, evaluating contact channels, referral pathways, response handling, escalation processes and overall communication effectiveness from first contact through to resolution.
Disclosure: The diagnostic tools referenced in this Footnote Zone were developed by NokNok, a specialist in online responsiveness tool design. ReplyResearch may use NokNok tools, resources or analysis when preparing coverage, while retaining responsibility for its editorial decisions, including what topics to cover, what sources to cite and how stories are presented. Read the full ReplyResearch Collaborative Disclosure Policy here: https://v0jf0ntkgmf.c.updraftclone.com/collaborative-disclosure-policy/
Sources and relevant reading for Patients are becoming the NHS’s unpaid follow-up department
The following recent reports and articles provide further evidence and background to the issues discussed in this article, including NHS communication failures, referral delays, contactability, administrative burden, accessibility and patient experience.
1. Still lost in the system: The urgent need to improve NHS administration
The King’s Fund, Healthwatch England & National Voices (April 2026)
This is the principal research underpinning the article. It reports that two-thirds of NHS patients and carers experienced administrative or communication problems, including chasing results, lacking updates, and not knowing who to contact. It also documents declining public confidence in NHS communication.
2. One in four NHS patients and carers receive invitations after their appointment date
The King’s Fund (17 April 2026)
Summarises the latest King’s Fund findings and highlights specific communication failures including appointment letters arriving after appointments, inability to contact services, and the impact these problems have on patients’ willingness to seek future healthcare.
3. 10 actions government and NHS leaders should take to improve NHS administration
The King’s Fund (April 2026)
Provides practical recommendations arising from the King’s Fund research, including clearer communication standards, better administrative processes, improved digital systems and greater transparency throughout the patient journey.
4. Referrals: Improving experiences and closing black holes
Healthwatch England (December 2025)
The definitive study of NHS referral failures. It examines delayed, lost and rejected referrals, demonstrating how patients frequently discover referral problems only because they actively chase their own care.
5. One in seven patients stuck in GP referral ‘black hole’
Healthwatch England (8 December 2025)
https://www.healthwatch.co.uk/news/2025-12-08/one-seven-patients-stuck-gp-referrals-black-hole
An accessible summary of the referral research, including statistics showing patients becoming the principal mechanism for detecting referral failures and the health consequences arising from communication breakdowns.
6. GP Patient Survey 2025
NHS England (10 July 2025)
https://www.england.nhs.uk/statistics/2025/07/10/gp-patient-survey-2025
The latest national survey of more than 700,000 patients. It provides evidence on telephone access, appointment booking, patient satisfaction and access to general practice across England.
7. GP Patient Survey 2025 – National Results
Ipsos / NHS England (July 2025)
Contains the full statistical breakdown behind the GP Patient Survey, including detailed findings on contacting GP practices, appointment experiences and differences between patient groups.
8. The State of Care 2024/25 – Primary Care Access
Care Quality Commission (2025)
https://www.cqc.org.uk/publications/major-report/state-care/2024-2025/access/primary
Places GP access within the wider NHS context, explaining how difficulties contacting general practice can redirect patients towards Accident & Emergency departments, particularly in deprived communities.
9. Deaf and hard of hearing people’s healthcare experiences
Healthwatch England (10 April 2024)
https://www.healthwatch.co.uk/blog/2024-04-10/deaf-and-hard-hearing-peoples-healthcare-experiences
Explores communication barriers faced by deaf and hard-of-hearing patients, including inaccessible contact methods, reliance on relatives and failures to meet communication needs during healthcare.
10. Still ignored: The fight for accessible healthcare
RNID & SignHealth (2025)
Provides extensive survey evidence showing many deaf patients are still not asked about their communication requirements, reinforcing the article’s argument that contactability is also an accessibility issue.
11. Accessible Information Standard
NHS England (Updated 2025)
https://www.england.nhs.uk/long-read/accessible-information-standard-requirements-dapb1605
Explains the legal and operational requirements placed on NHS organisations to identify, record and meet patients’ communication needs, illustrating why inaccessible communication pathways have become an important compliance issue.
12. Cancer patients rate NHS care highly as record numbers checked and treated
NHS England (16 July 2026)
Reports the latest National Cancer Patient Experience Survey, showing that over 90% of cancer patients have a named point of contact. It provides an important counter-example demonstrating how clear ownership and communication can significantly improve patient experience.
