'Referrals black hole’ - new findings of people’s experiences of GP referrals
GP services are the first point of call for many health issues and the gateway to NHS specialist support.
GP teams are highly skilled and may decide that treatment without specialist care is the best action. But when you need specialist support, such as hospital tests or treatment, you may need a referral from your GP team first.
Our new research highlights that it can be very hard for some people to get a GP referral to another NHS service. And for 21% of people we spoke to, even when they get referrals, they can be lost, rejected or not followed up on.**
When services don't process referrals properly, it can cause significant frustration, unnecessary anxiety, and even cause harm to patients.
It can also lead to increased demand for either more GP appointments or help from healthcare teams in other parts of the NHS, putting more pressure on already overstretched services.
‘Referrals black hole’
We heard from 1,777* adults in England between September and October last year who had an experience of getting a GP referral within the previous 12 months. Of these, 368 (21%) fell into what we have called the "referrals black hole".
One in five respondents with an experience of a GP referral had fallen into the ‘referrals black hole’.
We have defined people experiencing the referrals black hole as anyone who got a referral from their GP but then one of the following occurred:
- The person was referred to the wrong service
- The person’s referral appointment was cancelled
- The person was taken off the waiting list
- The person didn’t hear anything else about their referral
From people’s feedback, these examples may have occurred due to GP teams not sending referrals, referrals going missing between services, or referrals being either booked or rejected without any communication. As a result, the person affected went back to their GP to chase up the referral.
Lauren’s story: “I spend a lot of time chasing referrals”
Lauren, 37, is from West Sussex. The former nurse told us she spends a lot of time chasing GP referrals and puts regular reminders on her phone to contact her GP surgery and specialist wards at her local hospital.
Lauren was diagnosed with vestibular migraines and also has suffered from functional neurological disorder symptoms:
"I woke up one day and couldn't walk properly. I had a weird tingly sensation in my legs. My legs were very heavy.
Lauren's symptoms are complex, and she needed multiple referrals over the years. "Each time I get a referral from my GP it's a wait of six to eight months for my appointment."
After waiting six months, Lauren eventually had an appointment with the specialist. This led to another referral to a specialist physiotherapist. "The waiting times were unreal. I had to pay for private therapy instead. Luckily I have family who can support me to pay for treatment."
Lauren's healthcare journey has had a devastating impact on her day-to-day life and mental health. "I'm exhausted from dealing with it. I used to be a nurse, and I understand the healthcare system's pressures. But when you're living with symptoms, it's just dire.
"With the conditions I, and many others, have either the wrong type of specialist or service is selected by the GP so the referral is rejected or if accepted, an inadequate assessment and care may be provided with no ongoing treatment or review. I have experienced this with Neurology and Rheumatology and as a result am having to pay privately to access suitably knowledgeable specialists in these areas."
The bigger picture
Louise Ansari, our National Director, said:
"The NHS knows a great deal about the difficulties people face getting a GP appointment and the current challenges with hospital waiting lists. But far less is known about people's experiences of getting a referral from the GP for more specialist care.
"Thousands of people have told us that the process can be far from straightforward, with a shocking number of people telling us their referral wasn't sent, got lost, or was turned down by the hospital without anyone letting them know.
"Falling into this 'referrals black hole' is not just frustrating for patients but ultimately means people end up going back to their GP or visiting crowded A&E departments to get the help they need. This adds more burden to already stretched services, making things even harder for the doctors and nurses trying to provide care.
Extra admin support must be put in place to improve referral processes and ensure that everyone who needs treatment can access it as quickly as possible, in the right setting and in a way that meets their needs."
Dr Kieran Sharrock, BMA England GP committee acting chair, said:
“When a patient needs referring to a specialist, it’s important that this process is simple, smooth and understandable for both clinicians and the patient, with a common-sense approach that removes bureaucratic barriers and the need to jump through restrictive hoops.
“GPs and their colleagues are often frustrated by the merry-go-round of new referral forms and pathways that get introduced without warning, meaning staff can be left not knowing who to send referrals to, which form to use, and how to follow it up.
“The whole NHS is under unprecedented pressure and patients are already experiencing exceptionally long waits for care. If these are then extended further by delayed or lost referrals, it can mean conditions becoming more serious, pain getting worse, and an increased need for ongoing care from GPs and other parts of the system. Patients’ uncertainty of not knowing what has happened to their referral, or when they can expect to be seen, only adds unnecessary anxiety.
“For the good of both patients and staff, the NHS needs to develop a much more transparent system so that patients know when they have been referred, who and to which department they have been referred, and how they can track the referral.”
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 is currently no published national data collection on where patient 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:
More support should be given to help GP and hospital teams to reduce the numbers 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 should have access to the same centralised information about which stage of the referral process the person has progressed to. This includes patients, along with teams in general practice, referral management centres, hospital admissions teams and other parts of the NHS. 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). This is so patients can give feedback 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. Invest in NHS admin 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 fall into the referrals black hole, they will be able to flag these issues more quickly and access required support as soon as possible.
Next Steps
The findings above are part of a broader programme of work where Healthwatch England has been analysing the views of almost 4,000 patients and their experiences of the referrals process.
To further help the NHS understand people's experience of getting a referral, over the coming months, we will be publishing more detailed briefings looking specifically at the following:
- People who visit GP services actively seeking or expecting a referral and don't get one. In particular, exploring what their experiences can tell us about the importance of managing people's expectations.
- How long it takes those who are successful in getting a referral actually to be accepted on to waiting lists, and what could be done to improve their experience.
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
*The online survey of adults (18+) in England was commissioned by Healthwatch England and conducted by market research company Panelbase, in accordance with the Market Research Society's code of conduct. Data was collected between 29 September to 21 October 2022. All participants are opted in to take part in research and are paid an amount depending on the length and complexity of the survey. This survey was overseen and edited by the Panelbase research team, who are members of the MRS and ESOMAR.
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