This Gastroenterology Blog will keep track of all the activity undertaken by the Gastroenterology Specialty Group, noting and reporting insights along the way, and will be a shared point of contact for anyone who wished to keep up to date on the groups progress or contribute to the ongoing work. If you have any enquires about the project or any of the blog posts, please go to the Scottish Access Collaborative contact page and email us direct.
Gastroenterology Workshop One
On Wednesday the 25th of July, the Scottish Access Collaborative team met Consultant Gastroenterologist John Thomson and Operational Manager Vanessa Sandison at Aberdeen Royal Infirmary. This first event aimed at identifying the most common Gastroenterology outpatient symptoms and to start to map out the current pathways for these symptoms.
The meeting, supported by the Digital Health and Care Institute (DHI) design team, was the first of a series of design led workshops aimed at mapping and understanding the current state of clinical pathways for Gastroenterology. A prioritised list of key challenge areas and corresponding actions which help to improve bring down patient waiting times, and contribute to the key principles of the Scottish Access Collaborative can be identified.
Before defining the key challenges within the current gastroenterology services, it was vital to understand the current state. In order to break down the system into manageable elements, individual symptoms were chosen and profiled. This approach, once an agreed set of symptom profiles had been established, enables the pathways to be visualised based on these individual symptom profiles and their journey through services, making the task of mapping the current state more practicable.
The first action, was to discuss and define the most common Gastroenterology symptom profiles. A list of symptoms was formed based on the conversation with our two experts and their insights based on their experience. This resulted in a list of five symptoms, defined by their volume of presentation, as well as the reasons ‘why’ each symptom would be of interest to The Collaborative. This led to the following symptom profiles:
Change of bowel habit split into either diarrhoea or constipation, chosen because it has a large volume of presentations with more than 50 % of Gastroenterology presentations in secondary care. It is an anxiety inducing symptom that impacts on patient wellbeing, if blood is detected in diarrhoea it usually causes a significant alarm with patients, due to the possibility of cancer. There is variation in the journey for this symptom, resulting in a lack of consistency of the pathway route from GP referral.
Reflux/ dyspepsia (Heart burn indigestion) this symptom was chosen because it has a medium volume of presentation (approximately 10%), and it has a possibility of cancer so it requires urgent investigation. In the majority of cases (not cancer) the symptom is influenced by lifestyle and the patient’s weight is a factor, therefore there are treatment options for the patient that can be managed in primary care. For many patients, the care they need to receive is reassurance that they are not seriously ill, rather than any clinical action.
Abdominal pain (flank pain) was chosen due to the relatively high number of repeat GP appointments for reassuring the patient. Also, the symptom has a medium volume of initial presentation at approximately 15 %.
Non-specific weight loss is a symptom currently counting for approximately 10% of presentation, but it is increasing. In itself it is not a big issue but combined with other symptoms it can be critical. A big issue is a lack of knowledge of the options and pathways that are available in primary care, this leading to unnecessary hospital appointments.
(Incidental) Abnormal liver function test from GP is when a patient is referred to secondary care due to an abnormal liver function test, normally carried out at the GP surgery. This may be caused by the patient being overweight or drinking too much. The symptom represents a medium to large volume of presentations and so is a relatively significant number of cases. It was discussed that there is currently a discussion between primary and secondary and opportunities for more to be done in primary care.
After the symptoms had been defined, we collectively sketched an initial draft of the current state pathway for the Change of Bowel Habit symptom, as this was the largest volume of presentations and had significant potential for improvement. The aim of ‘mapping’ in this way was to develop an understanding of the current service blueprint, and focus in on a typical patient journey. It was agreed that the pathway starts with the patient going into a GP surgery for consultation, after examination the patient would be referred into secondary care where the referral is vetted and directed to the correct pathway. The patient would come into hospital and would undergo testing (endoscopy) at the Gastroenterology clinic. Once tests have been reported the patient would have a return appointment with the consultant.
In order to develop this initial understanding of gastroenterology services, capture a diverse picture of the current pathways including national differences, and to add more detail to the ‘map’, the wider gastroenterology specialty group will be asked to contribute and share their thoughts on this mapping of change in bowel habit symptom, as well as, the remaining symptoms defined at a workshop scheduled for the 4th of September.
Furthermore, the group will highlight and current opportunities where services could see some positive change, and will be working on some suggestions for such improvements.
Gastroenterology Workshop Two
On Tuesday 4th September, the Digital Health and Care Institute (DHI) design team, along with partners from the Scottish Access Collaborative, met with the whole Gastroenterology Specialty Group for the first time to look carefully at the current state for Gastroenterology services in Scotland. Following an initial scoping workshop, this second workshop aimed to: collaboratively define some of the most significant symptoms this specialty deal with, focusing on the motivation for choosing each symptom and creating a basic ‘symptom profile’ to work on; map the current service blueprint typical for each symptom as it moves through the service, including the people, places and technologies involved; map the experiences from different perspectives of current services, from a broad range of relevant stakeholders; and finally, find some opportunities for innovation in the current services and locate them on our maps.
A Multi-Perspective Approach
Key to the work of the Access Collaborative is viewing current NHS services through the lens of multiple stakeholders, ensuring that opportunities are defined with a whole system perspective in mind. Therefore, the Gastroenterology Specialty Group includes patients, GP, nurses, dieticians, managers, consultants, and surgeons, all with the aim of sharing the knowledge and experiences to ultimately improve services for everyone.
In the scoping workshop, some key Gastroenterology symptoms were identified as areas for focus. The first task in this second workshop was to feedback the scoping work to the group, ‘sense check’ the symptoms with the whole group, and then add details to each profile. By the end of this first task the group had defined five key symptoms:
Reflux and Dyspepsia
First the group talked about reflux and dyspepsia. Dyspepsia (indigestion) is a common problem of impaired digestion. Reflux, also known as Acid Reflux, is a condition where contents of the stomach come back up into the oesophagus. This symptom is problematic because it has a high volume of referrals and, critically, the current guidelines for the two symptoms result in a lot of referrals that often lead to no diagnosis after diagnostic testing, typically an endoscopy. Meaning many patients make unnecessary journeys to hospital for a fairly invasive test.
Incidental Abnormal Liver Function (from GP test)
The next symptom discussed was abnormal liver function, flagged by a liver function test by a GP. Abnormal liver function refers to abnormal liver enzyme test results, which can be a marker for other conditions, but often it is something that can be managed by the patient through lifestyle and diet changes. Abnormal results from Liver Function Tests (LFTs) are very common in primary care, and they are often found co-incidentally in patients who are not showing any symptoms. This symptom was chosen because there are a significant number of presentations in primary care who return abnormal LFTs, but few are referred to secondary. Yet, new guidelines will mean that more patients will present to secondary. Liver function is a complicated case, and liver function related issues can result in long periods of investigation with no added value to the patients.
Chronic abdominal Pain
Chronic Abdominal Pain is a broad term that deals with any long-term unexplained pain in the abdominal area, where there is no change in bowel habits of the patients. There is a medium volume of these cases referred to secondary, so it represents a significant number of patients who are dealt with. Referrals for this symptom can be variable. There are a large number of patients who are referred more than once after testing which produced a negative result. This symptom pathway can be variable depending on the region.
Unintentional Weight Loss (non-specific)
This symptom refers to patients who have started to show signs of clinical significant weight loss without intent, i.e. a significant change to their diet or lifestyle. It is a small to medium volume of presentations, however it poses a very difficult decision in primary with various pathway options. It is not always a gastroenterology issue, but knowing what is the appropriate referral is problematic.
Change of Bowel Habit
Finally change of bowel habit was discussed, primarily because lots of ‘things’ fall into this definition, it can mean either diarrhoea, constipation, change in frequency, etc. It represents a large volume of presentations and crucially a lot of presentations are deemed to be inappropriate for gastroenterology consultation as there is little that can be done that could not be managed by the patient, community, or primary care.
Current State Mapping
Once the symptoms had been discussed the group prioritized the five symptoms down to four, and began to look at the current patient journeys and service blue prints for each, highlighting opportunities for innovation. The four symptoms for focus were:
- Unintentional Weight Loss
- Change of Bowel Habit
- Chronic Abdominal Pain
For the remainder of the workshop the group broke away into four groups, each with one of the four symptoms to focus on, and mapped current pathways for their symptom, highlighting the people, places, and technologies involved. Plus, insights into the impact and experiences of each part of the pathway for the perspective of each of the stakeholders. The group uncovered lots of great insight into the current states of services and highlighted the potential areas for future innovations The key findings include:
For REFLUX the big opportunity is in the diagnostics. Our research indicates that the majority of cases are referred, one way or another, for an endoscopy and that the overwhelming majority of those tests find nothing, putting strain on the demand for this test. It doesn’t confirm reflux, and patients end up back on medication they were on before the scope. The patient ends up in a loop of treatment, test, treatment. The question is how can this cycle be broken?
For CHRONIC ABDOMINAL PAIN, many patients would be better served with a dietetic service than
a hospital visits to see a consultant. Currently they can end up in a ‘revolving door’ situation where they get lots of inconclusive tests, putting demands on them and the service. The question is how to support and properly resource primary and community services to ‘screen’ and triage those patients who do not need a hospital visit?
The symptom CHANGE IN BOWEL HABITS is a problematic symptom, It is a difficult symptom for primary care to deal with in terms of appropriate referral, therefore patients presenting in Gastroenterology clinics are often not Gastroenterology cases. Efficient, appropriate, and timely treatment this symptom relies on a good patient profile, but currently there is not the resource to do this adequately. So, the questions are; is the term right, can it better nuanced? How can the conversation between patient and clinical staff be improved? Could there be an engagement with patients before their GP appointment to help frame the GP questions and history taking? What additional role could Dieticians play in patient engagement and vetting?
Finally, for UNINTENTIONAL WEIGHT LOSS, patients falling into a diagnostic loop between specialties without any resolution is a big opportunity for improvement. The cause of this symptom is ambiguous, and can be the result of dentistry issues, psychological factors, infection, and more, so patients can be passed around before a cause is resolved and treated. The question is how more can be done, perhaps pre-primary care, to support appropriate patients to try self-management strategies and be supported to ‘navigate’ the various care options available to them.
The next steps will be for the DHI design team to develop the insights from this phase of the Gastroenterology work into some key challenges, ready for the group to come back together early in October in a third workshop, and collaboratively develop some ideas to address them.
Gastroenterology Three Blog
In early October, 2018, the Gastroenterology specialty group met for the third time with the Digital Health and Care Institute design team as part of their ongoing work with the Scottish Access Collaborative. In two previous meetings, the group have mapped out the current gastroenterology services available in Scotland, shared examples of national best practice, and critically identified areas in the current provision that could be innovated to improve the service experience for staff and patients. For this third workshop the DHI team had collated the group’s insights into a set of key challenges. Four of these challenges were picked up by the group and worked on collectively during the workshop, the outcomes being four themed recommendations for innovation and improvements in current gastroenterology services.
Multi Discipline Teams
Each challenge was addressed by a multi-discipline team, with any recommendations presented back to the whole group for validation and wider input. These recommendations will now be put forward as priority areas of focus for gastroenterology and candidates for further development and scaling through either existing national programs of work, or as specific discreet pieces of work.
The following outlines the four key challenge areas and the recommendations made by the group.
Challenges and Suggestions
- Theme: Patient Self-Management
The first challenge was how to encourage more patient self-management, supported by community services, for a range of conditions such as reflux, weight loss, and change in bowel habit.
Currently there is an extremely varied state of services nationally and thus a varied patient experience. Generally, the patient expectation is that they will always be seen by a member of medical staff even though this, from the clinical perspective, is not always the most appropriate person. There is a lack of knowledge and awareness currently about local community supports, such as community pharmacy support which is a good first line person to see. There is a gap in health literacy that prevents uptake of community services, and a need for more well designed promotion and public health awareness to access more local services. Due to these issues, there is currently a big demand on secondary care because of the referral rate of patients who have these symptoms like reflux and change in bowel habit.
In response to this challenge the group recognised that there is a lack of standardised measures across the service, that more IT could be used to support patients to self-manage, and that there needs to be better public health messaging. They asked themselves how AHPs can be used better in community service provision, and why some diagnostics are not directly accessed from AHPs, something that could cut be changed to out the ‘secondary step’.
To address the challenges and opportunities in self-management the group had the following recommendations.
Better use of IT: This focussed on access to appropriate health tests, information, and supports via a smart app. A centralised patient ‘mega app’ would give more access to first line support, rather than patients relying “doctor Google”. More of the population have smart technology now and gastroenterology needs to “tap into that”. The recommendation is for a centralised high quality NHS resources linking with charitable organisations locally. The services are out there but we “need to work better with our third sector”.
Public Awareness Campaign: Any IT application must be aligned to a public awareness campaign to show the options in first line community care, and raise awareness that some of these symptoms can be dealt with at the “first line” before going to secondary care. This is about giving patients and GPs access to healthcare professionals in the community, local self-help groups, and other primary services. The call was for more use of things like community pharmacy and GP rather than refer to secondary care. More education for the public on where to go and when to go, currently “people just don’t know”. The recommendation was supported by the idea that any patient information could use digital multi-modal forms of communication. For example, the use of videos or animations to replace letters to patients. Crohns and Colitis UK are already doing this using video and new technology to get information across. Patients can then engage with their condition in multiple formats, balancing the potential for increased health inequalities that is the risk of more patient self-management.
Multi-discipline Working: The recommendation is for more multi-disciplinary teams, GP, consultants, dieticians and other health professionals working together to share information and support holistic care for patients. This would be especially impactful for dieticians and pharmacists to work together.
Refer to Therapist: The recommendation was a national agreement to shift from the current protocol of refer to clinic first to one where the first referral from a GP should be to another service. This could be done with constipation, dyspepsia, etc. A new approach would see referrals direct to dietician or physiotherapist rather than refer direct to consultant. There will need to be national agreement on the approach. Therapy first and then secondary care after first line treatment is tried, supported by better multi-discipline working in the community linked with better public health information.
“Should we be going for refer to therapist first rather than refer to hospital?”
Care navigation: care navigators currently are individuals in GP practice who can point patients to care in community options. The national approach to care navigation is varied and the recommendation is to get consistency in the provision. The balance of knowledgeable people who have the local knowledge that you can’t get a national level linked into the national standard approach, but local level knowledge. The question was raised: what are the ‘other’ options for care navigation? Does it have to be physical, can it be digital, what other modes and forms can modern navigation take?
- Theme: Dynamic Primary Secondary Relationship
The second challenge was to create a more dynamic relationship between primary and secondary care allowing mutual feedback especially during vetting.
Currently there is a lot of variation in terms of how the two sides (primary and secondary) of care are communicating. The modality of communication is variable, and can differ depending on the particular practice from posting letters, to telephone calls, or commonly using SCI Gateway. Also, the content of communication is variable ranging from educational feedback to simplistic refusal, often relying on reference to embed guidelines that are time consuming to access and digest.
“education, or scolding”
To change the current situation, we need easy access to advice, through a variety of modality, with easily available guidelines with some stratification of risk, embracing the use of apps on mobile devices.
Enhanced vetting: the vetting process should be ‘ramped up’ to avoid people just being brought to clinic because it is the easiest thing to do. In future triage, there should be the opportunity to book a short phone call or virtual consultation to speak with a patient just to let them know the options rather than bring them into clinic. Involve patients in their care, and empower them to make decisions about their own journey.
Single on-call gastroenterology consultant: a single on call for all of Scotland covering a limited number of virtual sessions a month.
Quality of correspondence: there needs to be some standardisation and improvement in the quality of correspondence from secondary back to primary. When a referral is rejected by secondary care the response back the GP should be more information and educational to prevent the same referral repeating and building capacity in primary practice. There are system improvements that can support this. need standardised protocols and time allocated to send the letters back to the GP
“Gateway doesn’t make it easy for you to feedback. Your choice is you accept it or reject it and there is no middle ground.”
Dedicated Vetting Time: the key to all of the communication between primary and secondary care is the time allocated to actually correspond. Making vetting a part of planned activity and having time to dedicate to it, supported by better systems of communication.
“if you allocate the time you can significantly reduce the number of people who come through to clinic”
“We need an option in the system to recognise that the advice has been given”
- Theme: Reflux Pathways
The next challenge relates to the current pathways for reflux.
Approximately 20% of the population will have reflux. Many of these people seek treatment themselves through medication available through pharmacies and supermarkets. Some will present to their local practice where they can be treated by their GP or referred to secondary care. Currently there is variation in the patient experience once the enter the health care system. At one end, some will be encouraged to continue self-managing their symptom, at the other they will be referred for endoscopy. The issue is that many of the endoscopies are not adding any value to the understanding of the patient’s condition, and the challenge is how to recue this number and improve the patient experience.
National consistency: a new pathway for reflux that is more consistent nationally, can reduce the number of patients needing secondary services, and relieve the pressure on endoscopy services. The national protocol should foreground self-management and lifestyle advice in line with realistic medicine. The consistent protocol should include lifestyle measures, including referrals to, for example, diet services and weight management before diagnostic testing is considered. It should include a ‘trail of treatment’ and only those who do not respond to treatment or insist on referral are referred to secondary.
Quality Patient Information: delivered in two parts. Once at the GP and again at the point of an appropriate referral. This information should advise patients to continue on treatments, and give good general lifestyle advice.
The information pack available through a GP should encourage escalating management of care, trying a low dose medication first and increasing until the symptom is managed. This helps patients understand what level of medication manages their condition.
Information made available at the point of referral should reiterate initial advice with a realistic account of what secondary care can do. This can be linked to a Patient Led Opt in option (see below)
Options for other modalities of patient information other than a letter should be considered (videos, animations, etc.). It will be important to ensure that multi model information can be understood by patients to avoid increase health inequalities.
Patient Led Opt In: in addition to good quality patient information given in primary care and at the point of referral, a patient led opt in option to self-refer to secondary care for those who are very concerned. Advice to patients should contain ‘triggers’ they should look for that should cause them to come to clinic, a recommendation to have symptoms reviewed by a GP if they persist, and transparent information on what secondary care can do for them if they do self-refer, in line with realistic medicine.
“Opt in can work if you give good quality balanced information”
- Theme: Support better use of community dietetics
The final challenge was to enhance use of community dietetics.
Currently patients with functional conditions like IBS are referred to gastroenterology clinics after a GP has concluded all that can be done in the primary setting by them, including tests and treatments. It is at this point, either before or after diagnostic tests in secondary care, that dietetics are often brought into the pathway in a secondary care setting when the patient has not responded to ‘clinical’ intervention. The challenge was how to bring dietetics into the pathway sooner for the appropriate patients.
First Line Dietetics: once all red flag signals have been considered and significant chance of worrying pathology eliminated by primary care the recommendation is that patients are directed to first line advice and treatment rather than refer to secondary care. This is not necessarily a dietician led service. The advice can be given by a non-medically trained person or through a digital device based environment. The advice will be general, about diet and lifestyle and transparency about the realistic options patients have. In the old model the patient may have waited over a year to see the dietician and had lots of appointments and tests in the meantime.
Group Dietetics: patients who are unresponsive to first line advice and have continuing symptoms are referred for second line advice and treatment for their condition. Patients are seen twice by a dietician in eight weeks. Both consultations are in groups of ideally around 10 people, the first gives a diet plan and other self-management activities, the follow up check progress and re-evaluates the patient. In the case that the patient has no response and is requesting a clinic appointment then they are referred back the GP by the dietician with any relevant referral advice.
Direct Referral from dietetics: the recommendation is that dieticians directly refer appropriate patients to gastroenterology with a detailed account of what has been tried already and the patient profile. Currently, after a patient has used dietetics services but there has been no response the patient is referred back to their GP by dietetics so the GP can refer the patient on to the appropriate clinic.
Patient Led Opt in Referral: similarly to the recommendation for the reflux pathway, the recommendation for community dietetics pathway is that patients are given an opt in referral enabling the patient to play an active role in their care. At the point of referral for a functional condition like IBS, a patient would be given quality information about the realistic options and outcomes from any dietetic service they chose to engage with and a contact they can go to in order to access the service.
Dietetic Referrals for the over 45s: Currently offered for under 45s. Could expand this to the over 45s who have the negative colonoscopy to prevent them coming back for lots of repeat appointments and scopes and reallocate that resource saving to the dietetics services.
Over the past twenty years in Scotland there has been an alarming rise in the number of hospital admissions as a result of chronic liver disease. There were 75 per 100 000 population in 1992/93 compared with 204 per 100 000 in 2016/17. Although there has been an overall decrease in the mortality from chronic liver disease in the last decade, there are signs that this may be rising again. Death from liver disease remains the 5th commonest cause of death and in Scotland is more than 50% higher than elsewhere in the United Kingdom. A third of the patients admitted with previously unknown End Stage Liver Disease die during their first hospital admission. Many of these patients had abnormal LFTs in their file with inadequate investigation.
The morbidity and mortality from liver disease are predominantly as a result of three conditions, non-alcohol related fatty liver disease, alcohol related liver disease and viral hepatitis. The liver damage occurring as a result of all of these conditions is reversible if identified at an early stage and action taken.
Liver enzymes are requested for many different reasons and have largely become part of a general screen when patient present with non-specific symptoms. What may not be apparent to the clinician ordering LFTs is the significance of deranged liver enzymes that may require further investigation and intervention. Individuals may have significant underlying liver disease with near normal LFTs. Therefore although LFTs are often checked, appropriate action may not occur in time to prevent the long-term sequelae such as decompensated liver disease or hepatocellular carcinoma. Conversely a number of individuals with what may appear to be significantly abnormal liver enzymes may have trivial or indeed no discernible underlying liver disease. It is therefore important to identify which patients require further investigation and intervention and those that can be safely managed in Primary Care. It was with this in mind that a multidisciplinary group lead from NHS Tayside and the University of Dundee developed an automated system to identify those at risk of significant liver disease.
Initially a set of criteria for the diagnosis and staging of liver conditions was proposed. It was felt that in addition to the blood parameters available, it would be important to have the alcohol consumption, BMI and presence of features of the metabolic syndrome which would be used in combination with the age and sex from the CHI number. It was important that this was safe, reliable, only required at most minimal additional information from the referrer and preferably only relied on routinely available tests.
An algorithm was developed that once abnormalities in the liver enzymes were identified on the initial screen, automated, reflex testing of further blood parameters occurred in the laboratory without the need for further manual intervention or venepuncture. The algorithm was validated against a cohort of patients referred to Secondary Care in Glasgow, Aberdeen and Dundee before being piloted in Primary Care in 6 practices in Tayside. Over 30 different combinations of diagnosis and staging of liver disease along with suggested initial management plans were developed and these formed the output that the GP would receive in addition to the routine LFTs.
In practice the GP would select iLFTs in ICE and complete the drop down menus for alcohol consumption, BMI and presence of features of the metabolic syndrome. Once the samples reach the lab there is an initial screen for abnormal liver enzymes and if present, the cascade of other investigations is performed. As there is reflex testing, the same sample can be used for different tests and 3 blood tubes are required. The results are automatically entered into the previously validated algorithms and relevant diagnosis and treatment plans produced. The output is made available to Primary Care thorough weblinks.
In the pilot study, the implementation of iLFT reduced the number of avoidable GP visits by 85%, increased the documentation of a hepato-biliary diagnosis in Primary Care from 16% to 56% and appropriate escalation of care following abnormal LFTs from 41% to 100%. As patients are more likely to have a diagnosis and be identified for preventative measures and intervention at an appropriate stage, it is envisaged that the implementation of iLFTs will result in healthcare costs as a result of decreased unnecessary repeat testing but more importantly reduction in the progression to End Stage Liver Disease.
Authored by Dr Andrew Fraser, Consultant Hepatologist