This Respiratory Blog will keep track of all the activity undertaken by the Respiratory 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.
Respiratory Pathways: early insights
Earlier this month the Scottish Access Collaborative design team met with consultant physician in respiratory and general internal medicine at NHS Tayside, Dr. Tom Fardon. The aim of this initial meeting was to discuss the current state of respiratory pathways from a consultant perspective, to surface any current stories of change that highlight practice improvements from within Dr Fardon’s clinic, and to finally start a broader conversation around opportunities for respiratory service improvements in the future.
As with all the clinical groups the Access Collaborative will work with, our joint aim is to uncover the most common or pressing symptom cases that the specialism deals with, before mapping some common pathways, highlighting areas of best practice, and flagging areas with the most potential for improvement.
Symptoms common to respiratory cases were split into two distinct categories: those that are known and relatively ‘straightforward to deal with; and those that are present more difficulty for clinicians in this field to provide a diagnosis, or treatment plan.
Within in the relatively un-complex symptom category we discussed: shortness of breath; chronic dry cough; frequent chest infection; wheezing; and coughing up blood as the most common symptoms. For the more difficult cases there were: chest pain; tiredness and breathlessness; somnolence; and abnormal breathing. Breaking down the landscape of services this way allows up to look in detail for current opportunities for improvement, as well as the ‘bigger picture’ view of services as a whole.
Key Areas for Focus
The initial key areas for focus regarding respiratory the design team and Dr Fardon, highlighted include:
Improved guidelines for GPs regarding Chronic Dry Cough and Unexplained Breathlessness: existing changes to practice and potential new protocols for these two symptoms could be adopted and adapted to improve patient journeys, freeing up hospital appointments for more complex cases, and potentially bringing down waiting times.
Frontloading empirical treatments for Chronic Cough and diagnostic tests for Breathlessness, bringing them further forward in the patient journey.
GPs directly requesting diagnostics testing for a number of potential diagnoses would save appointments for patients, impacting on travel time, waiting times, and could free up time in clinic for more complex cases.
Scheduled Pulmonary Function tests: frequently PF tests are requested on the day of a patient’s appointment, this can lead to delayed appointments in hospital while waiting for tests – the variability in demand leads to over and under usage of resources, delays at clinic, and limitation of available testing modalities. Scheduling tests prior to appointment is a small change that would mitigate waiting time in hospital and could improve patient experience.
Stories of Change
One of the key aims of the Access Collaborative is to find positive stories of change within NHS services so that they can be shared across the whole service and examples of best practice. These ‘pieces of the puzzle’ can be small changes that could replicate with one or two service providers across Scotland, or something that could scale and have a much bigger impact across the national service.
One such story was the chronic cough protocol developed at Ninewells by Dr Fardon and the Ninewells team. Chronic cough, it was discovered, represented around 20% of referrals to the Ninewells clinic, and invariably the cough was benign. Patients would be given a chest x-ray and, in the cases where tests showed a potential cancer, the patient would be placed on a cancer pathway. If the chest x-ray was clear, then the patient simply has chronic cough which is commonly either down to reflux (a more common condition today), asthma and rhinitis, or it is habitual. In the original state patients without cancer were referred to hospital to see a specialist at which point they would normally be put on a treatment for reflux. This may take up to 18 weeks. The new protocol aimed to reduce the number of patients who travelled to hospital, and to start patients on treatment sooner. The main change in this scenario is the guideline. The new guideline advises that under certain conditions, detailed in the protocol, a patient at the GP should be started on 12 weeks of reflux treatment, with the understanding that if it doesn’t work then the patient can be referred to hospital. The impact from this new protocol was that it dropped the chronic cough referral to less than 5% of referrals from what was just over 20%, reducing unnecessary travel for patients, freeing up clinical time for more complex cases, and improving quality of care.
The success of the protocol led to the potential drafting of another new protocol for breathlessness. This is by far the biggest symptom the team at Ninewells see. A lot of the time the cause is down to someone’s weight, level of fitness or lifestyle, however, there could be presence of a lung disease and so the responsibility is to test for anything severe to rule out the possibility. Currently patients who present in this way at their GP are referred to hospital where they will normally be seen and then they are sent for a suite of diagnostic tests very common to this symptom. After the tests are done, after approximately six weeks, the patient will be brought back to hospital to discuss the results. What the new breathlessness protocol would aim to do is to reduce the number of hospital appointments for patients, and reduce their waiting time to get a diagnosis. The advice is that under certain conditions, a patient who present as breathless is sent directly by the GP to get the tests they would be sent for by a consultant at hospital. The effect is that the patient saves up to 18 weeks of waiting and has one less appointment at hospital, reducing patient travel and freeing up hospital appointments. There may be as a consequence some unnecessary tests, yet the benefits will be with the majority of patients who have a better quality of care, the doctors who have more time for more complex cases, and those patients with the more complex care needs who could see waiting times come down.
The Access Collaborative aim to find ways for NHS services to improve nationally, yet sometimes there are more ‘local’ changes that are not necessarily part of the national picture, but could still impact on patient experience and clinical efficiency. The ‘frontloading’ of some tests is an area of potential improvement that has been discussed for many conditions. Within the area of Respiratory medicine, the example of Idiopathic Pulmonary Fibrosis (IPF) diagnosis was discussed. Currently, patients are seen by GP, referred to hospital where, if the vetting process does not pick it up, they see the consultant and are then sent for diagnostic testing, before coming back to see the consultant. In this scenario, the patient has four separate appointments, to be potentially told that IPF is not the cause of their symptom. An improvement to this patient journey would be, under a detailed and agreed protocol, for tests to be order by the GP, who can then either: manage the patient in the event of a diagnostic scan that doesn’t show IPF; where there is a positive diagnosis of IPF the patient can be given advice, and referred to hospital with a diagnosis; or in the case of ‘something else’ GPs can seek advice from the secondary care team and refer the patient for an appointment if indicated. The impact is that for some patients they are not referred to hospital at all, for the rest they save at least one appointment, reducing their travel and freeing up hospital appointments.
The DHI design team will now take these initial interesting insights and examples to the Access Collaborative Respiratory specialty group for a wider debate and discussion around potential service improvements.
On Thursday September 13th, the Scottish Access Collaborative Respiratory Specialty Group met for the first time with the Digital Health and Care Institute (DHI) design team for their first design led workshop. Prior to the workshop the DHI team had conducted initial scoping interviews with NHS staff, aimed at gathering some early insight into the current state of respiratory services, key areas for development, and examples of best practice. These insights were brought into the workshop to present to the rest of the group to sense check our findings, and add insights and opinions from the different perspectives of respiratory services in the NHS.
This second workshop aimed to collaboratively define and prioritise some of the most significant symptoms this specialty deal with, unpicking the motivation for focussing on each symptom and creating a basic ‘symptom profile’ to work on. For each symptom profile, we dug deeper into the current pathways and services a typical patient journey would follow, highlighting what is positive and what could be innovated to improve the service in the future for staff and patients. The reason we work at the symptom level is down to the complexity of whole service ecologies for specialisms such as respiratory. Looking at multiple individual symptoms allows us to break down the system into manageable elements, while still keeping a whole service view, ensuing we cover specific symptom based improvements and cross cutting themes that could impact the service as a whole.
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, like all the collaborative sub groups the Respiratory Specialty Group includes patient representation, GP, nurses, managers, consultants, and surgeons, all with the aim of sharing their knowledge and experiences to ultimately improve services for everyone.
The main aim in this first group workshop was to feedback the scoping work to the respiratory group, ‘sense check’ the symptoms with the whole group, and then add some detail to each symptom profile. By the end of this first task the group had defined six key symptoms and added some detailed information about the current pathways and services for each. The following lists the symptoms and summarises the discussions:
Somnolence (Daytime Sleepiness)
The group first discussed the case of somnolence. This equates to a large number of presentations into respiratory services in secondary care, in some cases sleep related referral represents 50% of all referrals into clinic. It was noted that there is variation in the service patients receive depending on where they are in the country. In some places, there can be over100 referrals a week for sleep related issues, but on average around only 8 will need treated to avoid serious repercussion, the example discussed was a potential road accident. So, there is a significant social risk if the 8 are missed, and a potential significant economic impact, the example discussed was a £1.5m cost per serious road accident. It was agreed that there is great potential for streamlining this service in terms of screening what comes in, and joining services by “doing it all together”. It was also agreed that there probably could be a national ‘solution’ to this to improve the service.
Next up for discussion was Chest Pain. This is seen as a relatively small number of referrals, however, for the majority of respiratory referred chest pain, there is currently little that can really be done to help the patient. The group agreed that the majority are probably inappropriate referrals for respiratory and “they are coming to the wrong person”. Generally, the referrals are young people with some pain that comes and goes and for the majority, it is nothing serious after examination and diagnostics. The group concluded that this is a small but difficult group of cases.
Haemoptysis (coughing up blood) represents a medium to small number of referrals for respiratory. Currently, there is variation in the service nationally, mostly in terms of what happens at the GP. It was discussed that there is variation in terms of following guidelines for this symptom from primary care, so there can be a high number of inappropriate referrals, which can end in unnecessary hospital appointments. The group recognise that haemoptysis is a very worrying symptom for a patient, if tests show no serious issue (there is a 95% chance of there being nothing wrong if a CT scan is ok for example) then the patient just needs reassurance. However, this does not currently happen everywhere so there is potential to improve the patient experience. One area the group agreed would benefit from innovation are the guidelines, currently problematic (for example they don’t include patient age, whether they are a smoker or not, etc..) and they could be reviewed.
Frequent Chest Infection
The group agreed that this symptom is a “big problem”. In some regions, this represents potentially the biggest growth in referrals, so there is an increasing demand on resources related to it. A key issue highlighted by the group is in working out what is meant by ‘chest infection’, something not currently agreed. The group also established that this symptom could benefit from streamlining and presents a good opportunity to develop a screening process to pick up on early stage problems and treat them now rather than later when they have worsened.
Shortness of Breath
Shortness of breath represents a medium number of referrals into respiratory secondary care services and so amount to a significant number of patients. The symptom is one that is ‘shared’ with cardiology who also see patients suffering shortness of breath and so it was agreed that this is a good candidate for a joint clinical pathway between cardiology, respiratory, and potentially physiotherapy. It is currently a disjointed service, suffering from ‘sequential referrals’ (going from one speciality to another as things are ruled out) which adds waiting time for patients as they move back and forward between secondary and primary care. Therefore, it was seen as having great potential to innovate the current service arrangement to reduce appointments and significantly improve patient experience. An example of how this is already working in some regions, missing out the unnecessary step of re-referral from cardiology into respiratory via a GP, was put forward by two of the group and is something that could be picked up in the groups next workshop.
Finally, the group discussed the symptom Chronic Cough. For respiratory services, Chronic Cough represents a “huge number of referrals”, in some clinics this can be up to 20% of the remaining referrals once sleep related referrals are removed. It’s a symptom that can cause great anxiety for patients, yet there is very little that can be done currently in clinics to improve the cough where there is no worrying pathology, but it is recognised that it still a significant issue for a patient and so there is opportunity for improving patient experience. It was identified that there is variation in the services and there is an opportunity for nationally agreed approach to this. To address the current patient experience, specifically the number of referrals into secondary care, the group discussed the opportunity for more support and advice available for primary care about other options. At the end of the discussion the group moved on to talk about the definition for Chronic Cough and the opportunity to address what is actually meant by Chronic Cough, can this be changed in the guidelines, and would this kind of change improve the service.
The next steps will be for the DHI design team to develop the insights from this phase of the Respiratory work into some key challenges, ready for the group to come back together in October in the next workshop, agree the areas for focus, and collaboratively develop some ideas to address them.
Respiratory Workshop Three
In October 2018, the Scottish Access Collaborative respiratory specialty group met for the third time with the Digital Health and Care Institute (DHI) research and design team as part of their ongoing work to innovate respiratory services in Scotland. From two previous workshops with the respiratory group, the team of expert stakeholders have mapped out the current respiratory services available in Scotland, shared some examples of national best practice and more localised regional innovation, 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 collective insights into a set of key challenges for respiratory. Four of these challenges were selected by the group and worked on collectively during the workshop in a multi-discipline team, the outcomes being a set of suggestions for innovation and improvements in current respiratory services.
Each challenge was addressed by the respiratory multi-discipline team, with any suggestions discussed and debated by the whole group for validation and wider input. These suggestions will now be put forward through the SAC Respiratory Report as priority areas of focus for respiratory and candidates for further development and scaling through either existing national programs of work, or as specific pieces of work within the Access Collaborative. The wider group of stakeholders who have been involved in previous workshops and who have particular perspectives on and expertise in respiratory services, will have the opportunity to comment on suggestions made through the report. The result will be an agreed direction for respiratory services for the future.
Summary of Suggestions
The following outlines the four key challenge areas and the suggestions made by the group.
1. Challenge: Non-value adding appointments for haemoptysis
One key issue for this challenge currently is that there are a number of unnecessary appointments in secondary care clinics. At present, there is variation in what a patient can expect when they present to their GP with this symptom. This is not a ‘postcode lottery’ and is contingent on many interdependent factors. For example, what a GP puts on a referral to secondary care influences what the next steps can be, the particular health board may have different protocols and cultures, and the clinician who picks up the referral has a subjective role to play. All combined these permutations result in a multitude of options and experiences.
Suggestions for this pathway that would build from current best practice and/or suggest new approaches include:
- One suggestion was for GP requests for CT scans for appropriate patients. This would need national discussion involving radiologists and solid guidance for GPs if it is to be nationally adopted.
- The symptom has a specific link to suspected cancer. The suggestion was that the national guidelines for referral and vetting for cancer needs clarification and agreement as currently this is not clear.
- ‘Active Management’ was suggested as an underlying approach to patient care. Pathways should involve shared decision making where it is appropriate. The recommendation was that clinical staff need to develop ways to keep patients ‘in the loop’ about their care as it progresses and also involve them in decisions about their choice of care. For example, if an urgent suspected cancer, after investigation, is found to be ILD, the patient should be consulted about their options, preferably with their GP, rather than automatically being put on a pre-defined pathway.
- One final suggestion was for enhanced vetting for secondary care recognised in job planning. The aim would be to help screen out the low risk haemoptysis leaving more room for urgent suspected cases.
2. Challenge: How might we improve the chronic infection pathway
The current situation is that patients are referred to clinics with recurrent chest infections. However, there is variation in the definition of what constitutes a chest ‘infection’, variation in the definition of what constitutes ‘recurrent’, and variation in levels of investigation prior to the referral. This leads to some patients attending appointments unnecessarily and clinics, and they may arrive without a full history of the condition.
In response to this the suggestions were that:
- there needs to be defined and agreed definition of what is meant by ‘chest infection’
- there needs to be defined and agreed definition of ‘recurrent’ or ‘frequent’ in terms of chest infection
- these would form the basis for ‘an agreed minimum criterion’ for referral
- these definitions and criteria are clearly stated and easily available to GPs
3. Challenge: Reduce return / follow up appointments
There is in some cases follow up care taking place in secondary care which could take place in a primary or community setting. Where follow up and ongoing care appointments do take place outside secondary care, there is variation in what happens in these follow ups.
In response to this the group felt that the service could:
- Agree national guidance for follow up appointments for bronchiectasis and ILD. In terms of when it should happen in the patient journey, and what should happen in the appointments.
- Enable more follow up in primary care while allowing for speedy access to secondary care when it is needed. An ‘open return’ system was discussed.
- Change the protocol to one of diagnosis, followed by referral to specialist service in primary for follow up and review and monitoring.
- Secure more consistent ring-fenced long term funding for specialist primary nurse led services. This was not recommended this as blanket suggestion for all respiratory but the aim would, be to cover long term community service for these respiratory conditions (bronchiectasis and ILD).
- Provide the training in primary care specialist nurses to support the demand for primary follow up and care services for bronchiectasis and ILD.
- Arrange direct access to quality spirometry through the GP by special trained nurses. If this is taken forwards and delivered it will need good quality guidelines that are national and agreed and enforced. Spirometry is crucial for both diagnosis of COPD and follow up monitoring.
4. Challenge: How might we improve current obstructive sleep apnoea clinics so that only appropriate patients are seen?
Currently there are a proportion of patients who are referred in this area. A Sleep clinic is set up to deal with obstructive sleep apnoea and should only treat those patients with this diagnosis. A patient is currently referred by a GP to a sleep clinic where they take part in the sleep study to diagnose sleep apnoea before the treatment can start.
In response to the current challenge around the sleep service the group suggested that:
- Secondary care could put in place a protocol where by at the point of vetting and under certain criteria the first advice given back to the GP is that patients do not drive. This measure is put in place as a safety measure. However, it was recognised that preventing someone from driving has a significant impact on a patient’s livelihood and social situation. Therefore, quick diagnosis and treatment are imperative.
- Primary care clinicians need good consistent guidance including treatment and driving along with advice for patients on their condition.
- Guidance and adoption of levels of investigation in primary care before a secondary care referral could be agreed.
The next steps will be for the DHI team to review and collate the suggestions made by the respiratory team and record them into the draft respiratory report. The draft report will then be circulated among the team of experts for review before publication.