GP referrals: we need to address the ‘hidden’ waiting list
When you need specialist NHS support, like hospital tests or treatment, you may need a referral from your GP team first. There has been a lot of media coverage about GP access issues and long waits for hospital care. But what happens in between?
Before people get the specialist help they need from hospital teams, there are four stages of waiting. People wait for a GP appointment; they wait for their GP to tell them they will be referred; they wait for the hospital to confirm that referral; and then they join a hospital waiting list.
The NHS monitors only the hospital waiting list, leaving the steps between getting a GP referral and a letter confirming a hospital appointment as a dangerous 'blind spot' for the NHS and patients.
Our research aims to help NHS leaders understand this gap, and highlights ways to improve people's experience of the referral process.
About our research
We conducted a poll with over 2,000 adults in England between September and October last year to understand people's experiences getting a GP referral.
To understand the full range of people's experience with referrals, we spoke to:
- People with an experience of being told they'd be referred for tests, diagnosis, or treatment; a total of 1,518 people;
- Those who expected or requested a referral but failed to get one; a total of 626 people.
Key findings:
- The NHS has a 'referrals blind spot', as times for getting a GP referral vary considerably.
- Nearly one in five, 18%, respondents attended four or more GP appointments before getting a referral.
- Over one in 10, 11%, waited four or more months after their first GP appointment for GP to give a referral.
- Nearly one in three GP referrals don't progress directly to a hospital appointment or join a waiting list due to a lack of communication, choice, or administrative matters. This is worse for people needing mental health referrals.
- People told us that when they didn’t get a referral, their symptoms worsened, impacting their mental and physical health, their ability to work, or a loss of income.
Katie: I waited months and months for a GP referral.
Katie, 24, has struggled to get a GP referral for endometriosis treatment. She started experiencing a mix of stomach and pelvic pains five or six years ago. Sometimes the pain was so bad she would have to miss work, and on several occasions, she ended up in A&E.
She was told it was nothing to worry about when she mentioned her pains to her GP. "They'd say, 'some people just get pains' and send me on my way with painkillers."
After 'months and months' of GP appointments, Katie pushed her surgery to write a gynaecology referral specifically for endometriosis.
Katie will have surgery in early April and hopes this will lead to more treatment for her symptoms. But being unable to get treatment for so long has affected her life. She is a professional actor, but the pain from her untreated condition means she can't perform on stage.
"This dragged on for so long – having those experiences has made me super anxious to ask for help, but also taught me not take no for an answer. It's been really traumatic."
Experience of being referred
The experiences of 1,518 people who were told they would get a referral for tests, diagnosis, or treatment suggest that getting a GP referral is hard.
The 'hidden waiting list'
The NHS waiting list has been growing since the pandemic, with more patients waiting longer for hospital treatment. Official NHS data shows that 92% of people on the waiting list for non urgent treatment are currently waiting over 46 weeks for appointments.
But before even joining hospital waiting lists, people can wait months to get a GP referral.
And while the NHS monitors the number of people waiting for hospital care, it doesn't capture those who have requested or are waiting for a GP referral. The 'hidden' waiting list is unknown to healthcare leaders.
Our findings show:
- Over a third (39%) of the respondents said they were referred during their first GP appointment
- Nearly four in five got a referral within their first three visits
- But nearly one in five (18%) required four or more GP appointments to get a referral.
- And one in ten (11%) waited over four months from their first GP appointment to being referred.
How many referrals lead to a hospital appointment?
Our findings suggest that even when people get a GP referral, this only sometimes results in a hospital appointment.
Around seven in 10 GP referrals (71%) had progressed directly to a hospital appointment or people joining the NHS waiting list. However, others experienced problems along the way, such as: not hearing anything further about their appointment; finding out from the GP practice that they appointment hadn't been made; discovering the hospital/clinic had no record of the referral or the GP had no record of it; the referral was rejected; or they were referred to the wrong clinic.
Some experienced multiple problems, and findings around the progression of referrals changed based on patient conditions and other characteristics:
For instance, referrals for cancer have a higher progression rate than referrals for mental health support.
And only 66% of people aged 18-24 said their referral had progressed to a hospital appointment or joining a waiting list. For those really struggling financially, the figure was 63%, for LGBTQ+ people, 59%; and for neurodivergent people, 58%.
What helps progress a GP referral
Referrals are more likely to progress when GP practices provide people with additional information, such as information about the referral process, a copy of the referral letter, estimated timescales, or choice of location, appointment time or consultant.
For those not offered any of these options, only six in ten (59%) progressed directly to the next stage of the referral process, compared with three in four (74%) of those who received at least one piece of additional support.
Experience of expecting but failing to be referred
We spoke to 626 people who either expected or requested a referral but have yet to receive one. We found that these expectations may exist for several reasons:
- Over a third, 34%, of the respondents were told to ask their GP for a referral by another medical professional in a different medical setting.
- Nearly 73% had visited their GP multiple times about the same symptoms.
- Patients who returned to general practice after falling into a referrals black hole.
We also heard people's views on why they didn't get a referral. Some of these were the clinical reasons the GP gave, including a clinical preference to try treatment or lifestyle changes first.
However, some were non-clinical reasons. These could be against people's rights to healthcare access, as set out in the NHS Constitution for England. These included patients finding phone appointments inappropriate to their needs and feeling that GP consultants rushed their positions or didn't take their symptoms seriously.
The impact of failed referrals
People who didn’t get a referral, reported that their symptoms worsened, impacting their mental and physical health, their ability to work, or a loss of income.
Most of the respondents (82%) said they had tried alternative routes for help after failing to get a referral:
- 25% joined the queue for a new appointment
- 17% went to a different GP
- 17% contacted hospitals directly
- 11% went to a pharmacy
- Nine per cent went to A&E
- Seven per cent paid for private treatment.
Louise Ansari, our Chief Executive, said:
"Our new research shows how difficult it can be for many people to get a hospital or specialist care referral, even after a GP initiates it.
"As a result, people's health and wellbeing can suffer, and many instead go to crowded A&E departments, pay for private healthcare, or return to their GP in a worse condition.
"While the NHS monitors hospital waiting lists, the number of people who wait for a GP referral remains unknown to the health system. As well as looking at this 'hidden' waiting list, healthcare leaders need to address delays in progressing referrals, particularly for mental health support. People need to be given clear information about their referral process and be supported while they wait, with access to physiotherapy and pain management services where appropriate.
"Understanding the demand for healthcare is vital. Delaying or moving care around to different parts of the system puts more pressure on already stretched NHS services. Not only is this inefficient, but it can also put people's health at risk."
Our recommendations
We have set out actions for the government, NHS England and Integrated Care Systems (ICS) to support GP practices and hospitals with referral processes.
1. Do more to understand the referral process:
There currently needs to be published national data collection on where people referrals fail and bounce back to general practice for a new referral.
NHS England should work with Healthwatch England to add questions to the annual GP Patient Survey to understand people's experiences of the referral process.
2. Improve communication with patients:
GP and hospital teams need more support to reduce the number of people returning to general practice due to communication failures following a referral.
- Communications must be accessible. Failed referrals and missed appointments can sometimes be down to patients receiving information in the wrong format. For example, we've heard from blind patients receiving inaccessible referral letters. We recommend that adaptations are made to the e-referral system or other appropriate care record systems to ensure services record people's communication preferences at the point of referral. Services should support people to update them about their communication needs if they change.
- Communications must be transparent. All parties - patients, along with teams in general practice, referral management centres, hospital admissions teams and other parts of the NHS - should have access to the same centralised information about which stage of the referral process the person has progressed to. This could be through planned updates to the NHS App. However, information should also be available and shared with patients via other communication methods, as noted in their care records.
- Communications must be collaborative. As well as improving channels for the NHS to update patients about their referral, patients must also have access to care navigators in general practice and a single point of contact at their hospital (or another referral setting). As a result, patients can feed back about their condition while waiting for care, including whether they need to cancel or reschedule appointments or quickly chase up a referral if they have not received information about its progress
3. Give people a meaningful choice and flexibility over appointments.
Appointments which meet people's needs and preferences are vital for patients and can save staff time in the long run by reducing the likelihood of people returning to their GP in a worse condition.
- At the point of booking, give people a real choice of appointment types, appointment times, and a healthcare professional.
- Utilise care navigators to encourage the offer to patients of longer appointment slots where appropriate. People have the right to access NHS services and not be refused access on unreasonable grounds. More time during appointments ensures patients and staff have the time and space to discuss symptoms and referral decisions.
4. Invest in NHS administrative staff.
NHS England and the government should work to improve access to general practice by training and hiring more care navigators, staff who can ensure people's needs are met in the right setting the first time.
With more care navigators, the future of general practice could become one with fewer long waits on the phone and 24/7 access to online triage systems. And when people do wait for a GP referral for months, they will be able to flag these issues more quickly and access required support as soon as possible.
This online survey of adults in England was commissioned by Healthwatch England and conducted by Panelbase. Data was collected between 29 September to 20 October 2022.
Our full research findings are available online:
If you require this in a different format please email enquiries@healthwatch.co.uk or call 03000 68 3000.
For more information about the research findings, please contact research@healthwatch.co.uk.
