This Neurology Blog will keep track of all the activity undertaken by the Neurology Specialty Group, noting and reporting insights along the way, and will be a shared point of contact for anyone who wishes 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.
Neurology workshop one
In October 2018 the Scottish Access Collaborative Neurology specialty group met for the first time with the Digital Health and Care Institute design team. Over the coming weeks the neurology group will convene three times with the DHI team in a series of design led workshops that will map out the current landscape for neurology services in Scotland, identify areas of best practice, and opportunities for innovation. This first workshop began with a general discussion of neurology services. The aim of this open forum was to capture the different perspectives of current services from the various stakeholders and flag the key areas the group would like to focus on the subsequent workshops. This blog summarises the conversations and present the proposed direction for the remainder of this work.
One issue the group intially discussed was how, in the current system, patients are often referred to the inappropriate speciality to begin with, so they aren’t treated right for their condition from the start of their journey. This means that neurology often isn’t the first referral for the patients, they have already been to some extent around the system before they arrive at neurology care.
The group discussed the variation in current practice when it comes to direct referral to neurology, some primary care providers refer a high volume of patients to secondary care, where some do not refer many and care for the patient in a primary setting.
There is also variation in what clinics can offer across the boards. With some clinics having sub specialities to refer too, for example headaches and first symptom epilepsy, but not all have this provision. Even at the early stage of the conversation between the group, variation in practice and services was flagged as an issue and something that should be addressed in the context of the whole of neurology services.
Complexity and Demand
As the general discussion developed the group talked about the complex situation that neurology patients find themselves in, and the resulting high demand on services. It was recognised that there is a lot of associated activity around patients, with lots of diagnostics and treatments available. Patients can now be more accurately diagnosed, given treatments and then monitored for life. Yet, the greatest demand comes when patients are misdiagnosed and end on multiple inappropriate pathways. Examples given where for headaches where, once referred, patients might be sent for MRI and where there is no worrying pathology and can be referred onto many other potential pathways. For tremors, a common neurology symptom, once referred patients may be referred to another speciality, for example occupational therapy for advice on practical steps to gain back quality of life. The challenge for the entire care team is understanding the complexity of the pathways for the many conditions that present to neurology.
“higher users in neurology services are the misdiagnosed”
Third Sector Role
The conversation moved on to discuss the vital role that the third sector plays in supporting neurological disorders. The question of how third sector currently does this was raised, for example the group queried the role does community support currently plays. The group agreed that demand for services is going up and “more of the same is not enough” so new thinking about roles and services is required. This speciality more often deals with long term conditions. Therefore, patients can ‘merry-go-round’ the system, re-entering frequently as a new patient, and this is not a great experience from a person-centred perspective.
Primary Care Role
The discussion of the third sector rolled into a discussion about primary care and the changing role of the GP practice. It was recognised that there is now more work in primary general practice. For example, drug monitoring used to happen in secondary but now blood tests and assessments are conducted in many GP surgeries. Key parts of the discussion focussed on the danger of simply shifting workload without proper consideration of impact, and the referral rate from primary to secondary. There was a perception that there is “less tolerance of risk in primary care”, but also that “referrals are a pressure release valve” for them when demand is high and where patients have already ‘looped’ around the primary setting with no satisfactory result. This connected with the earlier discussion around the role of the community and third sector.
“general practice is bursting at the seams”
Two key challenges arose from this conversation. One is how to tease out the completely inappropriate GP referrals from the legitimate ones that didn’t necessarily have an outcome from clinical intervention. The second was how to address the variation in referral and general practice for neurology conditions.
Services, Roles and Access
After a short break, we continued our discussion moving onto the topics of services and access. The group recognised the aim of trying to keep patients away from secondary care where necessary, but also recognised that in order to do that other options need to be available and the people to fill those roles. Generally, the group felt that there was a need for more allied health professionals who can take on these roles who have a level of understanding of the complexity of people’s conditions. Yet a key issue with more services especially those that are around community and self-management was raised. Neurological patients often have issues that impact their ability to self-manage, in terms of knowing what services are available, where they are, and how to access them, and so any shift toward this type of care must be sympathetic to this fact. The example idea given was of a link practitioner working in a GP practice who knows what is available and is able to signpost.
Specific symptoms had already been discussed as part of the first workshop’s discussion. However, in the remaining part of the workshop the group decided to discuss some of the key challenges around the specific symptom of headaches. Firstly, the group discussed a generic pathway for headaches that starts with a 30 week wait following the GP referral into general neurology even before being referred into a specialism. The big issue from a patient perspective is that they do not want to wait for 30 weeks if they are having for example migraines. So, there is an opportunity to think about and do things differently to vastly improve the patient experience. Including options for patients ‘while they wait’ for appointments, treatments, and pre-diagnosis options perhaps in the community.
“how do the third sector connect with NHS and clinical services?”
This is not an easy symptom for GPs either, where patients are waiting but still have their symptoms they are repeatedly returning to primary care where there are few options. There are many guidelines to support GPs but the sheer volume of options, their design, and complexity of conditions means that they are simply not usable.
“too many guidelines, no one is using them”
It was accepted that the service needs reform, and appropriate supports be in place for primary care to help make the change. Yet any help, especially in terms of guidance and decision support, must make sense for GPs and be designed in a usable way.
“if it takes more than a minute or two the opportunity is lost.”
To conclude the session, we collectively agreed on some key areas to focus on for the next workshop. These varied between specific symptoms and associated services, and the role of the various elements of the whole service ecology for neurology.
Firstly, the group decided that current service organisation and practice around headaches was a real opportunity for innovation. This is in reference to the non-serious or non-life threatening headaches. We know there is currently variable practice in GP referrals, that this is a symptom with a high volume of presentations, and that there are long waits for the associated services. For these reasons the group chose this as the first area for focus.
Second, the group chose epilepsy seizures as the next area to focus on. Again, this is a high volume of presentations of this symptom, with many referrals coming from A&E. It is a symptom that needs specialist treatment, but national variation in the current practices of how it is dealt with. There are currently long waiting times for first seizures, and one of the key aims of the Access Collaborative is to reduce how long patients wait for care. There is also a capacity issue for follow up and review patients in the current system, which opens the door for new innovative ways of thinking about how this element of the service could be delivered and managed.
Next, the group honed in on the role of the third sector in neurology services as a key area for focus. The group consented that the third sector can help to “take the wait off other services” and was therefore an area to think carefully about in terms of how to build, offer and manage the right capacity. Importantly, from a patient’s perspective, the third sector are thought to give the best information and is therefore is a valuable resource for the people who are diagnosed with neurological conditions. The opportunity is to think about how third sector currently exist in the neurology care system, and how their role could be supported and enhanced.
Fourthly, the group chose sensory conditions as a key collection of symptoms and pathways to focus on. In this they include pain, numbness, paraesthesia, and neuropathy. These symptoms cause considerable distress to patients, but they are not usually life threatening. Like other symptoms discussed with other specialities, these symptoms can be profiled as “worrying for the patient but not for the clinician”, therefore there is good opportunity to improve patient experience.
Following on from this the group discussed motor related conditions as an area they could focus on and one where there is good opportunity for innovation. Weakness, swallowing problems, slurring speech, and tremors where all flagged as symptomatic of some form of motor condition. Again, these symptoms have the capacity to generate significant stress for patients, but in this case the symptoms can be a sign of something serious and so are a concern for both patients and clinicians. Invariably, motor conditions need access to ‘other’ services, for example musculoskeletal, and so care pathways can impact on several service systems beyond specific neurology. This offers, amongst others, the opportunity to re-think how multi-discipline teams could play a role in neurology patient care, and innovative ways in which they can work together.
Neurology Workshop One Best Practice Examples
When the Scottish Access Collaborative neurology specialty group met for the first-time last month (October 2018), the collective of expert stakeholders used their shared knowledge to highlight key opportunities for innovation in current Neurology services. The aim for the group is to take these opportunities and turn them into some meaningful action that can help to develop services and improve patient experiences in the future. While the focus of the group is to develop new ideas and innovations, we all recognise that neurology services are constantly evolving and that innovations and changes happen all the time. Toward the end of the group’s first workshop, they spent some time-sharing examples and stories of new and innovative changes currently happening across neurology services. The following three examples summarise some of these neurology innovations.
Alliance online directory of services (ALISS.org)
The ALISS service is a web platform designed to direct patients to all sorts of local general services that could help them manage their conditions and put them in tough with other people who have similar conditions. It is dynamic, open, and content user generated system. Link workers, those who support patients to access local services and work to connect patients with care in the community, are key users and developers of this service. They use the database to look for services and connect them with patients, but they also update the database with services they know of and would like to see on the platform. The platform is strategic in that it looks at what people are searching for and monitors the figures to look at demand versus capacity for certain services.
National Care Framework for Huntington’s Disease (care.hdscotland.org)
This online platform has been designed specifically for people diagnosed with Huntington’s Disease. As a care framework, it directs patients and careers to specific services in Scotland and is bespoke to the local area. It is a holistic and family based approach to support that can help patients, family and careers to build a personal model of care around the individual. It is a person centred, palliative model with a focus on family. The system is built on the things that people with the condition care about and it works on the key themes patients came up with. It does not advocate a “single pathway” or “one-size-fits-all” approach as every person’s experience is unique and requires to be treated as such.
Attend anywhere allows patients who have difficulty on attending hospital appointments to keep their clinic appointment, but have the appointment virtually either in a venue close to their home supported by clinical staff, or at the patient’s own home depending on the type of appointment. This type of virtual appointment has been piloted in various places across Scotland, the example from the Access Collaborative sub group was Greater Glasgow & Clyde using a video link with a mother of two who could would not have been able to attend hospital physically. For remote communities attend anywhere is a valuable service, Teleneurology for example has been rolled out across the western isles for some time and allows patients to attend local clinics and, with support from a nurse, speak via video link to their consultant. This model allows patients to receive the right care for them without the unnecessary travel associated with a physical appointment. There are moves to look at video linking consultations for across neurology services and not just for tackling physical distance, bur for everyone where travel is an issue for whatever reason.
Stories of best practice
As part of the ongoing work of the Scottish Access Collaborative we are collecting and collating examples of service innovations, pilot projects, and stories of change within the NHS that are delivering improved services and experiences for staff and patients. If you have an example of a change you have been involved in, or are currently piloting something in your service we would like to hear about it. Please get in contact with our research team via email at firstname.lastname@example.org.
Neurology workshop two blog: setting challenges
At the very start of November 2018 the Scottish Access Collaborative neurology specialty group met with the Digital Health and Care Institute design research team for the second in a series of three design led workshops. The first workshop that took place earlier this year in October explored the current service landscape for neurology services and pulled out some key themes and particular areas for focus. In this second workshop, we revisited our initial conversation about the current neurology service landscape, this time exploring in more detail some of the common symptoms that present to neurology services, before moving on to critique the themes from workshop one and develop some key challenges to take forward to workshop three.
Chronic Headaches: seen as a time and resource heavy symptom for everyone involved in the care journey, including patient, general practice and secondary care. It often involves a lot of repeat appointments for patients with, from the patient’s perspective, unsatisfactory results. An issue for the patient is one of expectation, if they are unresponsive to treatments advised from primary care there is a secondary care reference. This can incur up to an eight week wait, by which time a patient expects something conclusive to happen at their appointment, for the headache to be ‘fixed’. There is an opportunity to look at the other options for patients, moving toward a mind-set of chronic headache management. Headaches were in general seen as well managed from a primary and secondary perspective, but there is a relative complexity aligned to the various and varied pathways for the patients that presents an opportunity for change.
Sensory Symptoms: Sensory Symptoms: according to our workshop participants approximately 20% of referrals to general neurology clinics are sensory related. Neck and back pain were flagged by secondary care who had identified increasing numbers of referrals with these problems. An injury or condition of this nature can result in a patient being unable to work, which can have a significant effect on their lives. The impact of waiting times for such conditions is amplified when a patient is unable to maintain an income. There is an opportunity in this case to find ways for heath, and social care to link better to support people socially while they wait to be supported physically. The team highlighted the value physiotherapy can add to the treatment of chronic pain, but currently it is a lengthy pathway with long waiting times. It was agreed that early intervention of physiotherapy can have significant effects long term, raising the question of how to design better access for physiotherapy services.
Black Out and Funny Turns: perceived as a rapid access to neurology clinics, this symptom often presents to first seizure clinics yet according to the discussions at the workshop a low proportion of referrals for this service have actually had a seizure. Lots of referrals come directly from A&E and often the patient has been using drugs or alcohol. Like some sensory conditions discussed above, black outs and funny turns can trigger constraints such as inability to drive or work, which can have social and financial impacts.
Motor Symptoms: there are multitude of ways motor symptoms can present, but the group felt that collectively they would make up on average around 10% of what is referred to clinic. It was agreed that the patient history is a vital part of diagnosing motor symptoms and therefore a good examination is imperative.
Following on from the discussion around symptoms and issues there was an opportunity for the group to look in more depth at some of the issues raised in the previous workshop. Unpicking root causes and leverage points enabled the group to develop some specific challenge areas for neurology that they could take forward into the third workshop. Each challenge was framed as a statement, asking ‘how might we’ do something in order to instil a positive change in current neurology services. Included in these ‘how might we’ statements were:
- How might we strengthen the relationship of trust between primary care and patients? How might this contribute to being able to reassure patients and manage expectations?
- How might we better support communication between primary and secondary care beyond referral letters? What options would make sense to access advice from secondary care? Does this need to be recognized within job planning?
- How might we increase access to physiotherapy? Would it make sense to involve physiotherapy earlier in a patient journey rather than only at treatment stage?
- How might we ensure primary care (and ultimately patients) are aware of available third sector support?
- How might we find a balance between standardised pathways and national guidance, as well as regional variance and the need to adapt locally to available capacities and resources? How might we avoid national pathways becoming less practical and less concise?
- How might we ensure access to both diagnostics and treatment is standardised? How might we nationally organise a strategy towards which tests / treatment should be offered where?
- How might we simplify pathways, and ensure both primary and secondary care know what resources are available, where to refer to, and how to access care for patients?
The next steps for neurology will be to bring all of the agreed challenges together in the third and final workshop for this phase. In this workshop, we will collectively prioritise the challenges, and develop the main priorities into some suggestions for change. Following this work the prioritised challenges and suggestions will be published through the Scottish Access Collaborative website.
National Action Plan on Neurological Conditions
by Colin Urquhart, Team Leader - Clinical Priorities, Scottish Government
The Scottish Government wants to ensure that people living with neurological conditions have access to the best possible care and support. To achieve this goal, a national plan has been developed in partnership with the National Advisory Committee for Neurological Conditions (NACNC) and the wider neurological community (such as people living with neurological conditions, their families and carers, those who provide care and support, practitioners, clinicians, academics, NHS Boards, Integration Authorities, third sector and independent care providers). It sets out a vision for driving improvement in the care, treatment and support available to people living with neurological conditions, their families and carers, in Scotland, and describes a range of commitments to drive such improvements.
The draft National Action Plan on Neurological Conditions is being consulted on until 8 February 2019 and we would encourage people to contribute their views at: https://consult.gov.scot/healthcare-quality-and-improvement/neurological-conditions.
A link to the draft document can also be found here in the Neurology Document Repository
Guest blog by Gregory Hill-O'Conner (Our voice development co-ordinator for the Health and Social Care Alliance Scotland)
ALISS is A Local Information System for Scotland funded by the Scottish Government and delivered by the Health and Social Care Alliance Scotland (the ALLIANCE).
It is a national service, with a number of digital products, with supporting engagement services.
We believe that the people of Scotland should be able to access the right health and wellbeing information, in the right place, at the right time.
- Communities know best what keeps them well.
- Decentralised data management model.
- No ownership of information, only responsibility.
- Crowdsourced data collection and curation model.
- Open and transparent in our technology, data and licencing.
- Create Once Publish Everywhere.
- ALISS contains information from Public, Private and the Charity Sector.
- To increase the availability of health and wellbeing information for people living with long term conditions, disabled people and unpaid carers
- To support people, communities, professionals and organisations that have information to share
- To ensure that stakeholders are informed, skilled and confident in the use and application of web services and that they are connected as part of a wider community of practice
- To ensure that ALISS is used and is strategically aligned with Scottish health and social care needs
The collection, management and use of health and wellbeing information is fragmented, with varying degrees of quality, accuracy and relevance. The information is likely to be stored in legacy IT systems or held in ad-hoc localised systems, individual websites, applications, spreadsheets and other closed-off tools and systems and is very rarely used anywhere close to the potential of good quality, relevant health and wellbeing information truly has.
To explore this information challenge even deeper, our experience shows that it is relatively straightforward to enter or add information into a system – it is the maintenance of that information that is the real challenge. Due to the fragmented and siloed nature of our landscape, defining who “owns” the information can be challenging: Whose job is it to maintain the information? Whose responsibility is it to upkeep the information? Add to this the fluid and transient nature of some Third Sector and Public Sector services and it all accumulates into a significant information management and governance challenge.
ALISS is a directory of services that is designed to be integrated with third party search tools so that the information can migrate to where people search for information.
The information on ALISS is gathered in multiple ways. there are agreements with health and social care partnerships, third sector organisations, health boards and commercial businesses to share their info with ALISS and locate in a single directory. Furthermore, individuals are able to add listings to ALISS. This follows the principle that it is individuals who know community services best. Therefore, if somebody is running a small, volunteer led peer support group they are able to put this on ALISS so that people can find it.
With regard to maintaining the information, ALISS has adopted the ‘Wikipedia model’ whereby users are able to request changes to listings if they know that services have changed. There are also mechanisms for people to be responsible for a listing if they run the service or use it regularly that allows for the maintenance of information.