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In the wake of the Covid-19 pandemic, the NHS continues to operate under enormous pressure. It faces the challenge of responding to ongoing Covid infections alongside addressing a growing and complex backlog of care and treatment, with an over-stretched workforce. But this backlog is not limited to the much-covered issue of hospital-based surgical waiting lists. We are also increasingly hearing that GPs are struggling to ensure patients can access outpatient services. There is growing evidence that some hospitals are systematically rejecting new GP referrals to outpatient clinics. NHS England holds no formal data on rejected referrals. However, data relating to Appointment Slot Issues (ASIs) in the NHS e-Referral system, which handles around 95% of GP referrals in England, show that the number of referrals made for which there is no slot available has risen from 238,859 in February 2020 to 441,034 March 2022–an increase of 85%.[1] While these figures show lack of slots rather than specific numbers of rejected referrals, they clearly highlight a chronic lack of capacity in outpatient services. This correlates with the picture that has come out in our conversations with GPs—of patients with complex needs being pushed back to primary care because there is simply no space in outpatient clinics. The situation varies from speciality to speciality and is reportedly worse in areas such as mental health and neurology. When outpatient services reject referrals, it leaves primary care with the burden of sourcing provision from another hospital or directly meeting patients’ needs. Many of these patients have complex issues that require urgent assessment and treatment beyond the expertise of a GP. The issue is not GPs’ unwillingness to work hard for patients, but rather a concern about the impact that shifting large amounts of complex cases to primary care will have on patient safety. As Doncaster-based GP Dr Dean Eggitt told us, "Everyone's on board with shifting care to the community - it's the right thing to do for patients. But if we don't have the capacity to deal with it, people suffer." As the NHS comes under increasing pressure, we ask whether hospitals are changing the criteria for accepting referrals from GPs, and how this is leaving patients unable to access the care and treatment they need. Following discussion with patients and GPs, we have identified six urgent patient safety issues related to rejected referrals. We are calling for NHS England and NHS Improvement to investigate and understand the scale of these risks, and to take urgent action to address them. Rejected outpatient referrals: Urgent patient safety issues 1. Outpatient waiting lists are full Where hospitals are rejecting new GP referrals to outpatient clinics and specialist services, patients are being ‘passed around the system’ and sometimes deteriorating further while waiting for treatment. Recent analysis by the Institute for Government highlighted that “GPs are responsible for the day-to-day management of many chronic conditions and when patients do not receive specialist care these generally get worse and harder to manage.”[2] Our discussions with GPs suggest a lack of clarity on what to do if a patient’s referral is rejected. If a waiting list is full, GPs are being left to work out how to get their patients the specialist treatment they need. This is creating delays in care which has an impact on patient safety; in a recent poll of their members, the Doctors Association (DAUK) found that “90% of respondents believed a patient of theirs had come to harm because of a lack of access to outpatient services.”[3] These delays and rejections are also eroding patient trust in all areas of the healthcare system. In December 2021, DAUK wrote to Sajid Javid MP, Secretary of State for Health and Social Care, about concerns over lack of access to secondary care referral pathways. They highlighted that “allowing specialists who have not assessed the patient themselves to make the decision whether a referral is justified … risks patient safety.”[3] Some GPs have also expressed concern that referrals are being rejected on minor technicalities by administrative staff, without ever being seen by clinicians. 2. Services are not being prioritised on clear and consistent criteria We believe that patients need to be prioritised according to their clinical need rather than constraints within secondary care, and that the NHS needs to be transparent with the public about referral assessment processes. GPs have also told us about difficulties in getting investigation referrals accepted. One GP told us that their Trust has recently changed ultrasound scan request criteria and these referrals are now only being accepted if the referring GP is certain the patient requires surgery. This undermines the ability of GPs to flag potential issues and diagnose patients safely, and many are resorting to workarounds that they know will get the referral accepted. Rejecting referrals based on waiting list capacity, without clear and consistent criteria, will also create a postcode lotteries in care across the country and exacerbate existing health inequalities. To ensure safety, new patients entering waiting lists need to be prioritised according to clinical need against those already on the list, rather than operating on a ‘first come, first served’ basis. In addition to this initial prioritisation, patients waiting for care need to be monitored and reprioritised as their level of need is likely to change as they wait. There is a major question as to who will be responsible for ensuring patient deterioration while waiting for care is picked up and acted upon. 3. ‘Advice and guidance’ is being used to limit waiting lists There is concern amongst GPs that they are being asked to manage patients through the ‘advice and guidance’ (A&G) system when it is not appropriate to do so. A&G aims to reduce outpatient appointments in line with ambitious NHS targets.[4] In their letter to the Secretary of State, DAUK noted, “A&G is a brilliant tool if there is a query over patient care, or some concern over whether a referral is appropriate. However, as GPs, if we have decided a referral is necessary, and the situation is outside our competency then we must refer onwards, in line with GMC advice.”[3] Since October 2021 Barts Health NHS Trust in London has closed other referral pathways across most specialties, so that GPs can only use the advice and guidance system for referrals (now called ‘advice and refer’ within the Trust).[5] NHS England has also introduced nationwide targets to reduce outpatient appointments and increase A&G.[6] While we recognise the value of trialling new approaches, we are concerned that this particular strategy presents a risk to patient safety at a time where pressures across the system mean it may be inappropriately used as a way of keeping hospital waiting lists down. 4. GPs are having to take responsibility for patients they are not qualified or supported to treat All GPs will have specific specialties in which they are less confident and therefore require additional support from secondary care. When this help is denied, patient safety is compromised. Dr Eggit told us about the risks involved in asking GPs to work on cases outside of their expertise: "GPs know what they are doing - if they refer it's because they know they need help. When they don't get the help they need to treat patients, it causes harm." With A&G being promoted as a way to reduce outpatient appointments, GPs are being asked to offer treatment pathways and prescribe medications that have not historically been dealt with in primary care, as they carry higher levels of risk. Without appropriate training and safeguards, this puts patients at potential risk and GPs in a precarious position. It also adds to the stress and decision-making burden of GPs, contributing to burnout, a problem primary care cannot afford at the moment. One GP based in North East England told us, “There is an ever-creeping transfer of management of complex conditions from secondary to primary care, without adequate training or resources to manage this safely. Locally, we have just lost our general geriatric clinic, where we would refer older patients with several serious conditions on numerous medications. As GPs, we do not have the capacity, resources or expertise to do a full geriatric assessment, and yet that is what we have been left to attempt. These patients require specialist assessment to identify the pertinent issues amongst all that complexity, and to decide how best to balance and treat these issues safely and acceptably for the patient. As a GP, this pervasive transfer of responsibility causes me significant anxiety and distress.” 5. Patient choice and shared decision making are being undermined The NHS needs to prioritise tackling the root cause of lack of capacity in secondary care to allow for true patient choice. According to the summary of the NHS England and NHS Improvement March 2022 board meeting, “increasing patient choice is at the core of the delivery plan [for tackling the backlog].”[7] However, patients are currently unable to have much input into how their care and treatment should proceed. We welcome work to improve the electronic referral system to allow patients more choice when referred to secondary care, but if appointments do not exist, this will offer no choice at all. Many patients are currently unable to have full and frank discussions about their priorities and options with a qualified specialist. They are instead having to rely on GPs’ limited knowledge of specialist areas, or guidance from a consultant, relayed by GP. There is no easy way for patients to ask a specialist about their treatment. One GP told us that the use of A&G is also damaging their relationship with patients. “When I relay that a consultant has suggested a treatment to a patient, they ask me why they aren’t seeing the consultant. I have to tell them the consultant has declined to see them, and that I will be treating them instead. It’s worrying for the patient and damages the trust they have in me and in the system.” 6. There is a lack of clarity on accountability When a patient is referred to secondary care and that referral is rejected, it is unclear who is responsible for accessing alternative advice and treatment. If a patient experiences negative outcomes such as their condition deteriorating as a result of delays, who is responsible? If they want to raise concerns or complain, should they do this with the GP that referred them, or the secondary care provider that didn’t accept the referral? There is also concern that GPs will be held legally accountable for advice given by consultants through A&G.[8] A survey of nearly 700 GPs carried out by the Medical Protection Society in 2021 demonstrates that clarity and reassurance for GPs is needed. It found that “nearly four in five GPs in the UK (77%) are concerned about facing investigation if patients come to harm as a result of delayed referrals or… services being unavailable or limited.”[9] Professor Martin Marshall, Chair of the Royal College of GPs, said: “GPs understand the pressures colleagues working in secondary care are facing and will only refer patients if they think it is in their best interests. It’s really important that when GPs refer patients to specialist services, these referrals are taken seriously and not dismissed without good reason. “The patient safety issues raised in this article that relate to unsuccessful GP referrals are concerning and require further investigation. With the health service currently facing immense pressure, it is vital that acute and primary care work together to assess and respond to these concerns.” How should the NHS respond to these issues? As these six areas illustrate, the increase in rejected outpatient referrals is placing new pressures on GPs, with concerning implications for patient safety. We believe that NHS England NHS Improvement, in partnership with the Department of Health and Social Care, should take the following action: Investigate the extent and impact of the current level of rejected outpatient referrals. There is currently no clear way to assess the number of referrals that are being rejected, and the reasons for rejection. Develop an action plan in response to this, which should include specific steps to prevent outpatient referrals being inappropriately rejected or transferred to A&G. Undertake wide patient and public engagement to ensure transparent knowledge and promote wider understanding of these issues and their impact on health services. Acknowledging the immense pressure currently facing secondary care, we also see an opportunity for Clinical Commissioning Groups and incoming Integrated Care Systems to support primary and secondary care to work together on pathways focused on keeping patients safe, prioritising according to clinical need and rebuilding patient trust in the health system. If you are a GP, have you noticed an increase in rejected referrals or changes to the referral system? What has the impact been on your own workload and wellbeing, and the safety of patients? Please share your experiences in our community discussion so that we can continue to highlight these issues. Related reading Tackling the care and treatment backlog safely: Part 1 BMA - On the edge: GPs in despair (18 March 2022) Delivery plan for tackling the COVID-19 backlog of elective care (8 February 2022) NHS England waiting times for cancer referral and treatment at record high References 1 Appointment Slot Issue reports. NHS Digital. Accessed 4 May 2022 2 Performance Tracker 2021: General practice. Institute for Government website. Last accessed 14 April 2022 3 DAUK’s joint letter to the health secretary – lack of access to secondary care referral pathways. Doctors' Association UK. 3 December 2021 4 NHS England: Advice and Guidance. NHS England website. Last accessed 14 April 2022 5 Referrals (advice and refer, formerly advice and guidance). Barts Health NHS Trust website. Last accessed 14 April 2022 6 2022/23 priorities and operational planning guidance: Version 3. NHS England and NHS Improvement. 23 February 2022 7 NHS England and NHS Improvement Board meetings held in common: Elective Recovery Programme update. NHS England and NHS Improvement. 24 March 2022 8 Costanza Potter. 'GPs could be liable for hospital specialists’ advice under A&G, MDO warns'. Pulse Today. 6 April 2022 9 'Four in five GPs fear reprisal over delayed referrals'. Medical Protection. 4 June 2021

A few weeks ago, a painful and rapidly-swelling elbow forced me to pick up the phone and ask for help. I have rheumatoid arthritis, treated by immunosuppressive biologic drugs and complicated by other health issues. In ‘normal times' I am supposed to see my consultant every six months. But due to Covid-19, I had not seen her in two years and was muddling along by myself. So I wrote myself a script, made sure I had all the information I needed and psyched myself up to fight for an appointment with whoever I reached after navigating the hospital switchboard. Amazingly, I got through to my rheumatologist’s secretary at the first attempt. I explained my situation and, if I’m honest, was shocked by the compassion and understanding she showed me. “That sounds really difficult, I’ll get you an appointment as soon as I can.” She found me a phone appointment in six weeks time, apologised for the wait and the fact that it wasn't in person, and gave me the number of the rheumatology nurse helpline in case they could offer me anything else in the meantime. I couldn’t have felt better served or more cared for. It left me wondering why I hadn’t called before. And then I remembered the reasons - and realised this pleasant interaction felt like an anomaly. Why patients don’t ask for help There are so many reasons that stop patients proactively seeking the care they know they need, including: lack of clarity about who to contact or difficulty getting through. difficult past interactions that left you feeling dismissed and belittled. lack of follow-up when you have been in touch before. believing there are others worse off, that your needs aren’t important enough. previous harm or treatment mistakes. believing you will be ‘adding to the problem’ of the Covid-19 elective care backlog. Most patients, particularly those with a long-term condition, will identify with some of these reasons. But central to most of them is the idea of damaged trust, and it is many separate experiences that contribute to this erosion of patient confidence. Trust in the NHS, or any healthcare system, is a nuanced picture for each individual patient. But it warrants attention, as lack of trust has a huge impact on patients’ ability and willingness to access the healthcare system that, after all, exists to look after them. That in turn negatively affects their health outcomes and safety.[1] Two years into this pandemic, trust is more important now that it has ever been, but I fear that with every strained conversation and cancelled appointment, it is gradually ebbing away from patients. Patients and the NHS - it’s complicated In a healthcare setting, relationships are complex as they are not just about individuals, but a whole system. When I sit on the phone to a locum GP, both of us come to the consultation with loaded preconceptions - she of the thousands of patients she has seen, and I of the many doctors I have sat opposite before. The weight of the system sits heavy. The impact this has on experiences of care should not be underestimated. Increasing trust between patients and clinicians is key to patient safety, and for patients with long-term conditions, lack of trust can have a particularly profound effect. A good example of this is the UK Government’s vaccine rollout in Spring 2021. The universal public message was “Don’t contact us, we won’t forget you.” While I understand where this message came from - the need to protect immensely stretched NHS services - I wonder whether anyone in that comms meeting considered how that would be heard by some of the people it was aimed at. People who had been told they were ‘clinically extremely vulnerable’, who in some cases had spent months at home, alone. People for whom the vaccine meant freedom. People who are more likely than most to have experienced ‘being forgotten’ by the NHS before. In the end, anxiety about this led many, myself included, to call their GP to find out if they were ‘on the list’. In my case, I was accused of trying to ‘queue-jump’ while a friend at another GP surgery was told they were being ‘a nuisance’. My purpose in sharing this is not to have a go at individual staff, who were undoubtedly under huge pressure, but to highlight the impact that even brief interactions can have on a patient’s trust in their health services. I have certainly noticed that I am more reluctant to contact my GP since that incident. It was lack of trust that the system would look after me that made me call, and the call itself that further eroded my faith in the compassion and competence of the health system. Better communication builds trust People are often at their most vulnerable and anxious in healthcare settings, meaning that interactions have a particularly profound effect on how they view their treatment and the people involved. As a patient, here are four observations about how improving NHS communication could increase patient trust in the healthcare system. None of them are novel suggestions, but the need to prioritise them feels particularly important at the moment. Increase understanding of shared decision making Patients and clinicians alike need to really understand shared decision making and the role that patients have in ensuring their treatment is right for them. Shared decision making takes longer,[2] but it has proven benefits in reducing harm and improving outcomes.[3] We need better education for all parties about shared decision making if it is to become the norm for healthcare in the UK. It is encouraging to see organisations developing tools that can help patients prepare for consultations and understand which information will be useful to share, but we need to make sure all patients can access them. Address concerns and past harm A consultation needs to be about more than just the symptoms a patient is experiencing at that moment. Doctors who take time to understand where a patient’s hesitations come from are able to instil trust and help deal with those concerns. Allowing space for patients to talk about difficult healthcare experiences and feel heard can make a huge difference. This takes time, but those additional minutes are an investment in the patient’s health and future healthcare interactions. Trust works both ways, and as a patient I feel more relaxed and able to listen to a doctor’s expertise when they take my lived experience seriously. Identify and train the gatekeepers Clinicians understandably can’t be accessible to all patients at all times, so receptionists and other staff act as the gatekeepers to treatment. That’s why it is so important that these individuals communicate well with patients. A conversation that leaves a patient feeling unimportant and dismissed, even if it is polite, results in frustration and resentment, not just towards the gatekeeper but perhaps the whole department, hospital or NHS. Their role is vital in building patient trust and confidence, as my phone call with the rheumatology secretary demonstrates. Training and good systems that allow gatekeepers to offer the right information and support will help ensure patients don’t feel they are being denied access to the care they need. Maintain contact and foster transparency Many patients recognise the limitations placed on the NHS because of the ongoing impact of Covid-19; they just want to be kept in the loop. I have heard very little about my ongoing treatment from either hospital specialty I am under since January 2020. I have no idea whether anyone is looking at my regular blood test results or whether I’m even still ‘on the books’. I don’t know what I should do if I need support, and when I’m likely to be contacted next. Contact takes a bit of time, but it means patients don’t feel forgotten and gives them license to seek help when they really need it. Perhaps it’s time to invest in systems that make it easy to contact patients and bridge the gap between now sparse appointments. A question of resources Sadly, each of these solutions require something NHS services are very short of at the moment - time. NHS staff are under immense pressure every day, with record numbers leaving the NHS under the strain of Covid-related PTSD or simply having ‘had enough’. As staff become fewer, the pressure on remaining staff builds. Patients feel this strain and sense the pressure, and doubts about whether the system really has their back can grow. The issue of trust is a complex one with no easy fixes, but the more we can facilitate positive interactions and relationships, the more confidence all parties will have in our healthcare system. If trust can be built and maintained, patients like me will feel safer and more at ease when they need to access care. Of course, whether the government sees enough value in building trust in the NHS to properly invest in it, is another question altogether. References [1] F Chipidza, Rachel Wallwork and Theodore Stern. 'Impact of the doctor-patient relationship'. Prim Care Companion CNS Disord. 2015:17(5):10 [2] S Lenzen, R Daniëls, M Amantia van Bokhoven et al. 'What makes it so difficult for nurses to coach patients in shared decision making? A process evaluation'. International Journal of Nursing Studies. 2018:80:1-11 [3] C Okoli, G Brough, B Allan et al. 'Shared decision making between patients and healthcare providers and its association with favorable health outcomes among people living with HIV'. AIDS and Behavior. 2021:25:1384–1395