Posts from the “COVID-19 blogs” Category

Long COVID: a new challenge in managing uncertainty – Scott Jamieson

Posted on November 11, 2021

Dundee-based GP Scott Jamieson explains his experience in diagnosing patients with Long COVID and his contributions toward the creation of the now updated Long COVID clinical guideline, which will play a key role in assisting doctors to diagnose and treat Long COVID.

In general practice we are very accustomed to managing uncertainty. We teach GP trainees that this is not only when we don’t know immediately know what a diagnosis is, nor how to define it, but also when we are unsure how to treat it.

The key to managing uncertainty is sharing decision making. Where there is uncertainty, there is nothing more important than to share management. Demonstrating empathy to understand the condition from the patient’s perspective is key. But, with COVID-19 disease, we were in new territory.

In the UK alone, the ONS reports 1.2 million people as of November 2021 who have reported symptoms of Long COVID ongoing for more than 4 weeks after COVID-19 infection. Of these, over 65% report it impacts on day-to-day activities with 55% reporting fatigue as their most common symptom.

As we come to have a better understanding of the symptoms ongoing after COVID-19 infection, it has become apparent that the new or continued symptoms is a separate condition all together. The term ‘Long COVID’ is commonly used to describe signs and symptoms that continue or develop after acute COVID-19.

The importance of the guideline

It is important in unknown waters to endeavour to chart a path and update that course as evidence emerges to inform the best route. In Long COVID, as with any severe illness, GPs will continue to have a critical role in navigating uncertainty and excluding other causes of symptoms.

Symptoms ongoing after COVID-19 disease are fairly indiscriminate in different patients I see. There are some groups more likely to be affected – females, more deprived backgrounds, even healthcare workers – but those differences are not great.

Any person getting COVID-19 be those with mild or with severe symptoms in hospital can develop ongoing symptoms thereafter. It is likely this isn’t a ‘syndrome’ per se with a unifying mechanism. Each symptom potentially has a different cause, and with a lack of clear direction in how to manage the symptoms, I utilise ‘the COVID-19 rapid guideline: managing the long-term effects of COVID-19’, to help navigate the challenges of each symptom. People have had to stop their usual work, reduced normal daily activities or struggled more with their mental health: it’s not easy but thankfully for most the recovery is progressive and steady.

A unified approach

Collaborating with my Royal College of General Practitioners (RCGP) counterparts in London, as the RCGP Scotland Executive Officer (Quality Improvement) and sitting on the Scottish Intercollegiate Guidelines Network (SIGN) Council, we were mindful that there were moves both north and south of the border to consider a guideline on managing the breadth of ongoing symptoms after COVID-19 infection.

However, with a lack of strong evidence on effective treatments, these guidelines were likely to heavily depend upon consensus for treatments.

In the UK, we are lucky to have both SIGN and the National Institute for Health and Care Excellence (NICE) as expert organisations in guideline development.

As such, with my RCGP counterpart in England approaching NICE, I reached out to SIGN and the Clinical Cell at Scottish Government to suggest it would be best to have a single guideline to work from.

All parties agreed and the guideline developed from there. I continue to work alongside RCGP and SIGN in reviewing the guideline and I’m particularly excited to see the patient booklet to go alongside, which I know will be welcomed by patients and their family and friends.

It has been a pleasure to be involved in the collaboration of SIGN, RCGP and NICE to create a unified ‘living’ guideline on Long COVID. Beyond this, an implementation note was developed by the Scottish Government to support NHS boards to introduce the guideline effectively. We have a long way to go to ensure that we manage the uncertainties and find an effective path forward for those with Long COVID, but the revised guideline, the implementation note and the patient booklet are important steps in the right direction.

Visit SIGN’s website to access the revised guideline and patient booklet.

Scott Jamieson is a GP within NHS Tayside and a member of RCGP Scotland’s Scottish Council

Categories: COVID-19 blogs

Improving death certification standards during the pandemic – George Fernie

Posted on October 19, 2021

Our Medical Reviewer, George Fernie, explains how our Death Certification Review Service (DCRS) has helped the national response to the pandemic by advising doctors on the accurate recording of deaths.

In many respects, this year’s annual report has been difficult to write. It has felt slightly uncomfortable to be looking to celebrate how the Death Certification Review Service (DCRS) has been supporting the pandemic, when the reality is that we’re helping to improve the accurate recording of deaths which we sincerely wished had never needed to be reported.

However, one thing that we shouldn’t shy away from is the importance of DCRS in being able to support the response to the pandemic in meaningful ways.

It has been vital that death certificates have been completed correctly and that doctors have been given the proper advice to know how to record COVID-19, especially when there can be a range of other co-morbidities that may have impacted on an individual’s death. The evidence tells us that we’ve risen to the challenge and carried out our task effectively for the service.

The importance of improvements

DCRS sits within Healthcare Improvement Scotland. As a consequence, it’s right that improvement is at the heart of what our service does.

I’m proud to say that DCRS has seen sustained year-on-year improvement in the quality and accuracy of Medical Certificates of Cause of Death (MCCDs), and the progress achieved appears to have been maintained as we start to exit the worst of this unpredicted virus.

We continue to meet our legislative requirements to improve the quality and accuracy of MCCDs, giving the public confidence in the death registration process in Scotland; to inform public health information about causes of death in Scotland, supporting consistency in recording that will help resources to be directed to the best areas in a more timely way. In addition, we’ve seen continued improvement in the number of ‘not in order’ certificates across all NHS boards – despite the significant additional pressures placed upon certifying doctors and the team of medical reviewers during the pandemic especially. Moreover, all advance registration applications have been undertaken within 2 hours, which minimises any additional stress that might be caused to loved ones as a consequence of knowing that a review of the paperwork was to be carried out.

These improvements are down to the hard work and dedication of the DCRS team, but also to the doctors across the breadth of the country to show commitment to making sure that death certificates are accurate and meaningful.

Fulfilling our commitments

Each year we set goals for key areas that we wish to improve. Last year was no different, even though we were in the midst of the pandemic.

On top of the goals we set, in July we took the opportunity to reflect on our response to the pandemic and carried out an After Action Review which helped us to be prepared and positively respond to the second wave. We responded well, indeed, we identified why there was a difference between death rates from COVID-19 diagnosed clinically and those where there was a positive polymerase chain reaction (PCR) swab, taking into account a known ‘false-negative’ rate. In addition, we highlighted nosocomial (hospital acquired) infections and successfully used the Antimicrobial Resistance and Healthcare Associated Infection (ARHAI) framework to categorise these. Furthermore, we worked with Scottish Fatalities Injuries Unit (SFIU) and the COVID Death Investigation team (CDIT) to ensure accuracy and promote public reassurance.

Unexpected developments

Although we would not have planned to do so in a pandemic situation, through necessity the service migrated IT systems and relocated staff (although at the moment the full team continue to work from home). Within seven months we have successfully introduced a new electronic case management and telephony system which has allowed the service to work with greater efficiency, in a more focused manner and benefits all stakeholders in the death registration process.

The pandemic and our team

Like the rest of society, the staff of DCRS experienced all the varied consequences of COVID-19 where many of us were tested for the virus, a number contracted the virus and, some like myself, lost a frail family member, all whilst viewing real-time data of the deaths that were occurring in front of us. Whilst this was nothing like the impact on those in the frontline of the NHS, we have had to learn to live very differently in both our personal and professional lives. We were fortunate enough to come through this experience physically unscathed as a team, but are very much aware of the consequences due to our direct knowledge of what had happened.

I cannot thank my team enough for pulling together during an incredibly difficult time where I believe we made a meaningful contribution to the NHS in Scotland – their commitment and sensitivity at a time of national emergency was outstanding.

George Fernie is Senior Medical Reviewer with Healthcare Improvement Scotland.

More information

Read the latest Death Certification Review Service Annual Report.

Categories: COVID-19 blogs, DCRS

Keeping sight of what’s important – Scott Hamilton

Posted on September 7, 2021

Prior to the pandemic, Scott Hamilton, Improvement Advisor with our Acute Care Portfolio, had perfect vision. A year and a half later and everything has changed. Scott explains how a routine eye test indicated an untreatable condition.

I used to pride myself on my 20/20 vision – even boasted about how far I could see.

My training is as a nurse and I stepped back to the NHS frontline to support the efforts during the first wave of the COVID-19 pandemic. I returned to Healthcare Improvement Scotland in late June 2020 and to homeworking for the first time in my career. Having worked on a COVID-19 ward I realised that my unhealthy lifestyle was putting me at risk if I contracted the virus. I was overweight and very inactive. This had been exacerbated by homeworking and the stresses of the pandemic in general. In January 2021 I took action. I started eating better and in March, for the first time in a long time, I started running. Now I can run…a long way!

In May this year I went for my 2-yearly eye test. I knew my sight had deteriorated during lockdown and I routinely felt exhausted with the ‘screen time’ and my eyes felt really heavy. Little did I expect that I would be diagnosed with early onset age related macular degeneration and to be told that it has no cure!

Macular degeneration – the facts

Every day, around 300 people are diagnosed with macular disease. It’s the biggest cause of sight loss in the UK. Macular disease is cruel and isolating. It steals your sight, your independence, and your ability to do the things you love.

And yet, despite the devastating impact of macular disease, little is known about its causes and there is still no cure. Today, more and more people are being diagnosed with macular disease. In fact, the number of people living with the condition is set to double in the next 20 years. It is set to be the next major public health crisis — far more people with macular disease than dementia.

How does this affect me?

At the moment I can still see. However, low and bright light situations are really difficult and don’t ask me to read what’s on the menu if I don’t have my glasses! Psychologically it’s challenging knowing that over time I am going to significantly lose my central vision. It really brings it home how much you can take your ability to see for granted. I joined the Macular Society after doing a Google search to find out more information – their support and information have been tremendous.

At the moment it’s all about small adjustments and doing all I can to slow the progression. This means that my healthy living needs to become a permanent fixture as good nutrition, blood pressure control and regular exercise can have an effect on how quickly the disease progresses.

Practically, it means doing a weekly test monitoring for any significant deterioration with an Amsler grid that’s stuck to our oven, using my glasses with their blue light filter and edge to edge prescription, being more aware of using my sunglasses (ironic in Scotland!) and managing my screen time in general. I should probably also mention that my wife, Elaine, reads the restaurant menus for me!

The future

There is only one way to beat Macular Disease for good. More research must be funded, until we find a cure, or find treatments that stop it in its tracks.

In June Elaine (personal coach as well as my wife!) talked me into doing the Scottish Half Marathon after doing 10k…at a stroll! When I looked on the Half Marathon website I realised I could raise some money for the Macular Society whilst achieving something I didn’t think would be possible back in January. The pandemic has hit charities hard and the money they have available to fund critical research has been hit hard. They have difficult decisions to make over the next few years. The Macular Society have promised that any money I raise will go straight into their research funds.

I am excited to be doing the Scottish Half Marathon on the 19^th of September 2021. I am the fittest I have ever been in my life but most of all…I love running!

Scott Hamilton is an Improvement Advisor with the Acute Care Portfolio of our ihub.

More information

You can support Scott on his JustGiving page

More information from Macular Society

Categories: COVID-19 blogs, ihub

Move to improve – Benjamin McElwee

Posted on September 6, 2021

In our latest blog, Benjamin McElwee explains how the varied role of being an improvement advisor with Healthcare Improvement Scotland has allowed him to improve health and social care in a wide range of ways.

When 90% of healthcare interactions begin and end in primary care, it is a setting with tremendous opportunities for improving population health and delivering on the early intervention and prevention agenda. This is what drew me to the role of improvement advisor in the ihub in the first place.

Before I joined Healthcare Improvement Scotland’s ihub, I worked in the third sector first as a care provider and then in a range of national roles influencing policy and practice. Whilst working for a mental health charity, I had the opportunity to engage more directly with clinicians and care providers and became particularly interested in the ways to affect practice change at the point of care.

I graduated from the Scottish Improvement Leader Programme whilst still working in the third sector, which enhanced my understanding of and passion for quality improvement. The ihub seemed a natural place to further develop and apply these skills.

A varied role where you can bring your strengths

Working within the ihub’s Primary Care Improvement Portfolio, I had the opportunity to support a variety of work across the whole breadth of health and social care in Scotland. I’ve supported a network of people involved in the redesign of primary care services in their local area to share learning and explore solutions to common challenges. I’ve helped GP practices to triage tasks and navigate people accessing care so they are seen by the right person at the right time in the right place. Working in partnership with colleagues at NHS Education for Scotland (NES), I developed a faculty of professionals (mostly clinical) with expertise in primary care to provide subject matter expertise and support the delivery of the Primary Care Improvement Portfolio’s work. I’ve also worked with the Royal College of General Practitioners, Scottish Government and NES to co-ordinate the primary care learning system and the delivery of webinars and resources.

Applying and developing a range of skills to a multitude of topics

During my time with the primary care team my work touched on a diverse range of topics including person-centred care planning, different approaches to supporting long-term conditions, telehealth and remote monitoring, medicines in primary care and whole systems approaches.

As well as the variety of topics, the role provides ample opportunities to develop a portfolio of skills beyond quality improvement. This could be through facilitating workshops with clinicians, running focus groups, interviewing people accessing care, engaging with other organisations to collaborate, developing business cases for new pieces of work or supporting the development and delivery of communication strategies.

Due to COVID-19, I also saw the adaptability of colleagues, as the organisation temporarily reconfigured itself to provide more responsive support to the system. During this time I supported the use of a video consulting service within primary care and maternity services, engaging directly with administrative, clinical and support staff to do so.

Improving from the inside as well as the outside

Working within the ihub also provides the opportunity to use quality improvement tools to support internal work both within the portfolio and across the organisation, with a variety of groups looking at internal improvement in areas such as organisational culture, digital ways of working, health and wellbeing, and internal processes. It offers the chance to work with people with a wealth of experience within the organisation, people who have quite often worked across multiple different parts of Healthcare Improvement Scotland, thus exposing you to different working styles, views, capabilities and expertise that can support your development.

Indeed, it is through the generosity of colleagues sharing their experience, expertise and insights that I was able to develop within the primary care team to take on a new role with the Value Management Collaborative as a Senior Improvement Advisor.

For anyone looking to make a difference to health and care in Scotland whilst also developing professionally, a role as an improvement advisor could be for you.

Benjamin McElwee is an Improvement Advisor within our Primary Care Improvement Portfolio.

More information

Find out more about our Primary Care improvement work: https://ihub.scot/improvement-programmes/primary-care/

Visit NHSScotland to see the list of current job vacancies.

Categories: COVID-19 blogs, ihub

Learning from real life: How the pandemic can help workforce planning in future – Karen Mackenzie

Posted on August 24, 2021

Having the right people in the right place at the right time lies at the heart of workforce planning. But how does that work when the NHS is faced with a pandemic? Karen Mackenzie, Assistant Programme Advisor with Healthcare Improvement Scotland’s Healthcare Staffing Programme, tells us how colleagues in one territorial boards have coped – and how the experience of COVID-19 can help shape future workforce planning ahead of legislation due to be enacted next year.

The COVID-19 pandemic has been transformative for all of us. Many of us have found ourselves in situations we’d never imagined, doing things we’d never dreamed of. Nowhere is this truer than in the NHS, where staff who may not have worked on the frontline for years have suddenly found themselves volunteering to be front and centre when it comes to tackling COVID – and helping to prevent its spread.

When I started my new role as an Assistant Programme Advisor with the Healthcare Staffing Programme (HSP) in August 2020, our team had started to re-group after being redeployed to work in the first phase of the pandemic. It was an exciting time to join my nursing and midwifery colleagues as they worked to support territorial boards with remobilisation and recovery. Reconnecting with our NHS colleagues to learn from the challenges they faced was going to inform our objectives for the year ahead. But then the second phase of the pandemic descended on us and it was once again “all hands on deck”. Health and care services were faced with the parallel demands of COVID-19 care and the urgent roll out of the vaccination programme. Having heard about these challenges from frontline colleagues, I volunteered to provide enhanced support to vaccination programme staffing with NHS Western Isles.

All hands on deck

My clinical background is as an Allied Health Professional (AHP), but even with my knowledge of workload and workforce planning, I was anxious about whether I would be able to offer the right level of support to nursing colleagues given the pressures of vaccination targets.

Working with clinical staff, senior nurses, Public Health Scotland colleagues, clinic schedule coordinators, health intelligence colleagues and the local Quality Improvement coordinator, I began to learn about the landscape in which we were having to plan vaccinations. Something that immediately jumped out at me was the multiprofessional nature of the vaccination staffing effort, and the importance of professional judgement and clinical voice when staffing new services. I saw so many AHPs, from paramedics and podiatrists to dietitians and speech and language therapists, working to support the vaccination effort while also trying to maintain their own services.

Nationally, the pandemic response has highlighted how staffing affects healthcare quality and staff wellbeing across health and social care. In keeping with the principles of the Health and Care Staffing (Scotland) Act 2019, and ahead of its enactment, NHS Boards have to have systems in place to ensure professional advice has been provided at the right level in relation to staffing. Where decisions are made contrary to such advice, associated risks should be identified, recorded and any required mitigation put in place.

With this principle in mind, I worked with my vaccination programme colleagues to map out the current vaccination clinic process, highlighting key staffing risks to allow us to prioritise staffing and workload improvements. For example, observing workflow at vaccination clinics and joining the morning safety huddle helped me to understand the key staffing issues that were impacting patient safety and staff wellbeing. The mapping process helped to identify simple changes to rostering processes that helped to improve the skill mix and effective use of staff during their allocated shift times. Overall the changes were well received by the vaccination staff on the ground as they felt more engaged in staffing discussions and their concerns about patient safety and staff wellbeing were heard. The increased governance and flexibility gave the staff more ownership of their workload and helped to make the best use of their time. Importantly, the changes also protected rest break times and safe working hours to maintain staff wellbeing.

What we can learn

My experience and that of many of my colleagues is that the pandemic has demonstrated that multi-professional collaboration and improvement are possible in the most challenging of circumstances. However, as we move towards what is, hopefully, the beginning of the end, it has also highlighted the need for AHPs to have a consistent way to capture their workloads and to use reliable workload information to plan their services and workforce. This is where my team at Healthcare Improvement Scotland comes in. We support the upskilling of a range of professions in workload measurement to help ensure that their services are safely staffed for high quality care. Now we want to use the learning from COVID-19 to help AHPs prepare for the delayed enactment of the Health and Care Staffing (Scotland) Act 2019. We want to help AHPs understand the importance of knowing their available workforce and identifying gaps in their required workforce, and to explore practical, low data burden solutions to workload and workforce measurement.

Taking a closer look at staffing beyond the nursing and midwifery workforce helps to put health and social Care services in a stronger position for the new legislation, ensuring that services are “safe to start” each day. It also helps them prepare, post-COVID, for whatever happens next.

Karen Mackenzie is an Assistant Programme Advisor with Healthcare Improvement Scotland’s Healthcare Staffing Programme.

More information

Visit our website for more information on the Healthcare Staffing Programme.

Categories: COVID-19 blogs, ihub

Reflections of a Caldicott Guardian – George Fernie

Posted on July 28, 2021

Many people will know the term Caldicott Guardian but perhaps not quite know what it means. In our latest blog, George Fernie, Senior Medical Reviewer with our organisation, outlines the role and what it means for respecting the rights of patients.

The term Caldicott Guardian is one that many people will have heard of, but perhaps not entirely know what it means or where it comes from. Even within my own organisation, Healthcare Improvement Scotland, I’m likely known as our Senior Medical Reviewer, working largely on our Death Certification responsibilities, but many may not know how the role of Caldicott Guardian is vital in protecting the rights of patients.

What the role is and where it came from

So, let’s answer that question right up front. The generally accepted definition of what constitutes the role of the Caldicott Guardian is set out within the UK Caldicott Guardian’s Manual. It describes the role as:

“… a senior person within a health or social care organisation who makes sure that the personal information about those who use its services is used legally, ethically and appropriately, and that confidentiality is maintained. Caldicott Guardians should be able to provide leadership and informed guidance on complex matters involving confidentiality and information sharing”. Caldicott Guardians

The term is named after Dame Fiona Caldicott who died earlier this year having worked with some distinction as an NHS psychiatrist. The Government Review of Patient-Identifiable Information, chaired by Dame Fiona Caldicott, which reported in December 1997, recommended that “a senior person, preferably a health professional, should be nominated in each health organisation to act as a guardian, responsible for safeguarding the confidentiality of patient information.” At that time, the report also set out principles for determining when confidential information might be used and when it should not. These six Caldicott principles have since helped Caldicott Guardians to make balanced judgements for their organisations, with a seventh being added in 2013 and an eighth in 2020.

From law graduate to legal guardian

Describing the role of Caldicott Guardian is easier to explain, however, than the journey I took to become one!

In Healthcare Improvement Scotland, the role of Caldicott Guardian has been devolved to me because of my long-term interest in medical law and ethics. Although I started my professional career as a ‘proper doctor’ by being a general practitioner, I discovered something even better in forensic and legal medicine. Having commenced work as a medicolegal adviser in 1996, I then had a complete mental aberration by going to law school where I graduated Bachelor of Laws at the University of Strathclyde, in addition to already having a Masters in Law & Ethics in Medicine from the University of Glasgow.

A further opportunity to combine law, ethics and healthcare arose when I was appointed the first Senior Medical Reviewer for Scotland in 2013, which is a statutory role conferred by the Certification of Death (Scotland) Act 2011. The reform of death certification had been a long-term aim of mine when I was the inaugural Registrar and third President of the Faculty of Forensic and Legal Medicine. Scottish Government took the enlightened decision to base the Death Certification Review Service in an independent NHS quality improvement organisation, Healthcare Improvement Scotland. This has allowed me to provide an additional contribution to other organisational workstreams, making use of my knowledge in information governance and the 17 years of practical skills I had gained in supporting doctors in the UK, South Africa and the Republic of Ireland as a medicolegal adviser.

The role of guardian at Healthcare Improvement Scotland

At Healthcare Improvement Scotland, the Caldicott Guardian works as part of a team within the Information Governance Group. In 2021, I was nominated as the Scottish representative on the United Kingdom’s Caldicott Guardian Council (UKCGC). The areas in which the Caldicott Guardian is expected to influence include: strategy and governance; confidentiality and data protection expertise; internal information processing, and information sharing.

It is quite a responsibility to be a Caldicott Guardian, as well as being a great honour. I’m fortunate to work within an organisation that places significant value on the role and its importance for protecting the rights of patients. When I’m asked what I enjoy most about being a Caldicott Guardian, the answers are actually pretty straightforward. It is facilitating the access of people to records to which they are entitled, helping avoid the release of information which is considered confidential and utilising the immense amount of data we possess within our diverse organisation to improve the health and social care of the patients of Scotland.

George Fernie is Senior Medical Reviewer with Healthcare Improvement Scotland.

Categories: COVID-19 blogs, ihub

Clinical guideline is a crucial stage in treating Long COVID – Professor Tom Evans

Posted on July 6, 2021

Professor Tom Evans is an infectious disease specialist working with Glasgow University and a member of the development group responsible for the Long COVID guideline. Tom reflects on the year that’s been and the importance of sharing knowledge in diagnosing and treating Long COVID.

We have been living with COVID-19 for over a year, and it has affected everyone world-wide in at least one way or another. For some of us, this means the loss of a loved one. Now there is finally real hope for a reduction in deaths and severe disease caused by the infection with the introduction of effective vaccines and better treatment.

However, for some who experience even relatively mild COVID-19, their recovery can be very prolonged and they continue to experience a wide variety of symptoms – including a new condition of post-COVID-19 syndrome, also known as Long COVID.

My own experiences of managing patients with post-COVID-19 syndrome reflects very much the published studies of this condition. They all have experienced a range of persistent symptoms – fatigue is almost universal, as well as intermittent fast heart rates and an inability to focus, often referred to as ‘brain fog’. Many of these patients are still unable to work many months after their initial acute illness. They are frustrated by poor appreciation by some medical staff of the nature of the ongoing symptoms after acute COVID-19, of having multiple referrals to emergency departments or individual specialists, and in a lack of effective therapy.

When do you know you have Long COVID?

But what exactly is Long COVID?

Long COVID is when a patient continues to experience or develops new disabling symptoms for months after the initial infection. These can involve just about any organ system of the human body. Extreme fatigue is commonly reported in addition to:

breathlessness
an intermittent racing pulse
loss of concentration (brain fog)
fevers, and
abdominal pain.

Many patients also report that these symptoms can come and go. Such a diverse range of symptoms for Long COVID presents a real challenge to general practitioners: is this continuing infection? what investigations are required? who is the best specialist to whom I should refer?

Post-COVID-19 syndrome – what’s in a name?

Because of the growing realisation that these persistent symptoms were proving quite common, it was clear there was a need for a national guideline to set out a definition of the condition, to identify the evidence base for any investigations and treatment, and to develop a framework for services that might be required.

A unique collaboration was formed between Healthcare Improvement Scotland, the National Institute for Health and care Excellence (NICE) and the Royal College of General Practitioners, to develop a guideline that could be used across the UK. As an infectious disease specialist, I was asked to be a member of the oversight committee, to provide a definition of the condition, and to set out the questions that the guideline needed to address. This was a real challenge – the knowledge base for Long COVID was very limited and there was no accepted definition or indeed name for the syndrome. Given the large range of symptoms reported and that we wished to make clear this was quite distinct from the symptoms from the acute phase of the infection, we settled on ‘Post-COVID-19 Syndrome’, with a definite diagnosis at 12 weeks after the initial infection.

Patient groups and the media have continued to use Long COVID – I don’t feel there is any problem with this. We are used to there being ‘medical’ names for conditions as well as more common terms used by the public – doctors will call glandular fever ‘infectious mononucleosis’, but the important point is that we are talking about the same thing. Having a definition is incredibly important – this will allow every consultation with patients who have Post-COVID-19 syndrome to be captured by computerised data systems so that we can build up an accurate picture of its prevalence, the spectrum of symptoms experienced and risk factors for its development.

The guideline development team worked incredibly hard and at a fast pace to gather all available evidence in order to produce a document that could be used as quickly as possible. Specialists from across the UK were involved, as well as patients who had experienced the condition. A real challenge for developing the Long COVID guideline was the dearth of good evidence – this is such a recent illness that there was not much high quality research available. However, the final guideline incorporated all that was known at this time and sets out some concrete advice on diagnosis, investigations and management.

A “Living” Guideline

The developers very much realised that the guideline will continue to be modified over time as more evidence accrues – what we refer to as a ‘living’ guideline. But it is a welcome beginning that provides a solid start in recognising and defining the condition, and providing valuable evidence-based recommendations for clinicians caring for Long COVID patients.

As we continue to look at the new evidence in order to help guide future versions of the guideline, it’s important that healthcare professionals and those affected by Long COVID are familiar with what we currently know about the guideline and the best way to diagnose and treat it. Knowledge and the sharing of that knowledge will be crucial to improving the lives of those with the condition.

Professor Tom Evans is an infectious disease specialist working with Glasgow University and a member of the development group responsible for the Long COVID guideline.

More information

Visit the SIGN website to read our Long COVID guideline.

Categories: COVID-19 blogs, ihub

Let’s continue the conversation on health inequalities and improvement – James Battye

Posted on June 8, 2021

Equality is important. As a publicly funded organisation, Healthcare Improvement Scotland has legal duties to take action to address the inequalities that exist in Scotland. We must also be able evidence how we have met our duties in everything that we do. So how do we make sure it underlies our work? Associate Improvement Advisor James Battye give us his thoughts.

Since joining Healthcare Improvement Scotland’s ihub, health inequalities and what to do about them has been a key theme of my work. Given what we know about health inequalities in Scotland, keeping a constant focus on this is absolutely essential.

I won’t pretend that weaving this into my own day to day role as an Associate Improvement Advisor has been easy. I’ve spent a good chunk of my time doing a bit of head scratching and wondering whether I am on the right track.

For example – did I get that Equality Impact Assessment (EQIA) right? What will I do with it now?

Sessions like the equity knowledge café session organised by our Evidence and Evaluation for Improvement (EEvIT) team have been really helpful in clarifying my thinking, and left me keen to keep exploring the question of what we can do to address health inequalities in our work.

Health inequality and quality improvement

Towards the end of 2020, with the help of Zoom/Teams I had the opportunity to attend the Institute for Healthcare Improvement (IHI) Forum.

Health inequality was a key theme of the forum. Keynote speakers included Roseanne Haggerty, CEO of Community Solutions, a charity whose mission is to end chronic homelessness in the US and Patrisse Cullors, a social activist and co-creator of Black Lives Matter. In addition, among the sixty or so breakout sessions there were a good few dedicated to improvement and inequalities.

For me, two questions stand out when I think about health inequalities and quality improvement: firstly, what can health and social care systems do to support and sustain a culture of improvement and redesign around health inequality? And secondly, how do we measure the effect improvement or redesign has had on health inequalities themselves?

Supporting a culture of improvement and redesign around health inequalities

One theme emerged early on during presentations and this was the importance of a strong values base along staff at all levels which incorporated addressing inequality.

This was particularly evident in the United States in relation to Black Lives Matter. The movement has prompted health and social care professionals to examine their practice and consider whether they were doing all they could to end the racial disparities which exist within the U.S.

In the examples shared during the forum, health and social care professionals said they felt empowered to take action as tackling inequality was part of their job. They also said they felt supported by their leadership teams to take action. On the face of it this seemed be a key factor in mobilising a health and social care system to introduce changes which aim to reduce inequalities.

Considering Scotland, I think we have some of the right building blocks in place. For example there’s our own work on Quality Management Systems in which leadership and shared values are a key part. We also have the NHS Scotland’s 2020 workforce vision which includes a focus on providing more equitable access to healthcare.

However, I’m sure we’ll all agree that there’s much more to do.

Measuring the impact of initiatives to address health inequalities

When it came to how health and social care professionals measured the impact of initiatives which sought to tackle health inequalities things were a little less clear cut. Presenters admitted that often they just didn’t have the data – e.g. on demographics, income or something else – and they needed to put their efforts into improving what data they could gather. In fact, the content of the presentations was similar to many of the conversations we had as part of EEvIT’s knowledge café on equity.

Initially I was left a little disappointed by the Forum. I didn’t get that golden nugget that I was hoping might show me the way in relation to my own day job. But on reflection I actually found this encouraging: many improvers across health and social care are at the same point as us. We want to collectively address health inequalities, but we are not always sure what we can do and we are not sure how to measure it.

What can Healthcare Improvement Scotland do to address inequalities?

For me the IHI Forum helped underline why internal initiatives like the inequalities and equity knowledge café session organised by EEvIT are so important. They provide the space for us to share what we know and what we don’t.

It has also prompted me to more actively consider inequalities throughout the entirety of an improvement programme. Not only am I going to ensure that the EQIA is as thorough as possible but I am also going to revisit it frequently – meaning that if I didn’t get it right the first time I can always change and adapt it.

James Battye is an Associate Improvement Advisor in ihub’s Maternity and Children Collaborative

More information

Find out more about the work of our Evidence and Evaluation for Improvement Team.

Categories: COVID-19 blogs, ihub

Pandemic puts person-centred care at the heart of dementia care – Marie Innes

Posted on June 1, 2021

Restrictions imposed as a result of the COVID-19 pandemic brought to light the importance of person-centredness in dementia care. As part of Dementia Awareness Week, Marie Innes of our Focus on Dementia team, explains why delivering care to people in the way that matters most to them is at the heart of Healthcare Improvement Scotland’s relaunched Dementia in Hospitals Collaborative.

The COVID-19 pandemic put many thing on hold for many people, including the range of improvements that health and care professionals across the country were focused on for people with dementia through our organisation’s Dementia in Hospitals Collaborative. As Healthcare Improvement Scotland focuses on restarting this important programme of work, the pandemic has brought lessons that will be important to how the collaborative moves forward – most importantly, the importance of person-centred care.

The collaborative started late in 2019 and was originally scheduled to run until September 2021. The aim was to bring together hospital teams from across Scotland to work on improvements to hospital care for people with dementia, with an overall focus on the prevention and management of stress and distress, plus four other areas of focus.

Along came COVID-19, and the collaborative was paused, not once but twice, during 2020.

But the last year has brought important knowledge that will help aid the next stage of the programme.

Supporting people in the way that matters most to them

Even before the pandemic, Person-Centred Care Planning had been an area that had consistently been highlighted as an area for improvement both by hospital teams themselves, as well as through the findings of our inspections into the care of older people in hospitals.

During the pause, we engaged with a range of stakeholders to find out their key issues around hospital care for people with dementia during the pandemic. One issue that came out consistently was that the restrictions to hospital visiting had caused issues in the way hospital staff were able to engage with families and carers of people with dementia. This made it difficult to find out what was really important to individuals to support a meaningful, person-centred approach to care. In addition, the necessary, stricter, infection control measures that had been put in place, often made it difficult or impossible to support people in the way that mattered most to them. These issues meant that a person-centred approach to care planning for individuals has proved more challenging and was therefore identified as a key focus area for improvement.

The aim of the collaborative in this area is that the hospital care of people with dementia will be informed by a personalised care plan which reflects their strengths, needs, wishes and choices. Moreover, the person-centred approach will support the prevention and management of stress and distress.

Another key feature of the collaborative is that we are working in partnership with the Alzheimer Scotland Dementia Nurse and AHP consultants who are providing local leadership for collaborative teams in their NHS board areas.

Building on the learning from the past

The best programmes focus on learning from the past and building on what we know works well. The Dementia in Hospitals Collaborative does the same, by building on the Specialist Dementia Unit Improvement Programme (SDUIP), a three-year programme that supported four sites to improve the quality of care for people with dementia within Specialist Dementia Units.

The learning from the SDUIP programme also helped inform an online toolkit to support improvements in dementia care in hospital settings. The toolkit is due to be launched on our organisation’s ihub website in summer 2021 to coincide with the restarting of the Dementia in Hospitals programme of work.

Hopes for the future

We are currently identifying new and existing teams who are able to re-engage, with a restart planned for June 2021 and the first Learning Session arranged for late June. We hope that teams will be not only sharing their learning with other collaborative teams through the collaborative activities, but will also be developing plans for scaling up and spreading their improvements within their own NHS board, as well as sharing their learning with the wider hospital communities through the Focus on Dementia Learning System.

The collaborative is a really exciting piece of work with huge potential to make a difference to Person-Centred Care Planning. Through testing new approaches to care planning and sharing with each other, the teams involved in this programme can really help to pull together all of the great work and learning that has been happening over the last few years. I believe that this will make a real difference to the experience of people with dementia and their families.

Marie Innes is an Improvement Advisor with the Focus on Dementia Team at Healthcare Improvement Scotland.

More information

Find out more about our Focus on Dementia work.

Categories: COVID-19 blogs, ihub

The four steps to the right Anticipatory Care Plan – Paul Baughan

Posted on April 21, 2021

We’ve launched a new section of our ihub website with information, tools and resources to support Anticipatory Care Planning (ACP), a crucial process which ensures that the right things are done in the future for each person, should their health change. Dr Paul Baughan, clinical lead with our Primary Care team explains why this ACP is so important and the various stages to enable the right outcome for patients.

The longer I work in general practice, the more I realise that there are many different ways to treat people who have exactly the same medical condition. Priorities for care vary considerably between individuals, and if we do not stop to ask “What matters to you?” then we can actually cause harm – even when following the latest evidence-based guideline.

Spending time with someone to explore treatment and care options that are right for them – in the context of their current state of health, their social situation, and the various priorities in their life – is critically important. It can ensure that the right things are done in the future for that person, should their health change. Things such as the type of medicines to use during an exacerbation or sudden deterioration, the people who should be contacted to help with decision making, and how the person would like to receive care if staying at home is becoming more difficult. These preferences can be written down, kept with the person, documented in their clinical notes, and shared with other people who need to know. Many people call this approach ‘Anticipatory Care Planning’.

***Diagram: The 4 steps of successful Anticipatory Care Planning***

There are four crucial steps to a successful ACP, which forms the basis of the new Healthcare Improvement Scotland ACP toolkit. Each of these steps is important to ensure that we do the right thing for the person we are caring for. We know that harm can be caused if we jump straight in at Step 3 (documenting a care plan), without the important preparation and planning, or having first engaged in meaningful conversations with the right people.

As a GP, as well as the Clinical Lead for Primary Care with Healthcare Improvement Scotland, let me explain how I’ve been using the four stages and how they help me to ensure that the right care plan is created for everyone.

Step 1: Preparation and Planning

The first step, Preparation and Planning, involves identifying who you will be having an ACP discussion with, then preparing yourself and the person for that conversation.

I do this by finding out as much as I can about the person before meeting with them. I ask myself the following questions: What is their current state of health? What have other professionals and specialists said or written in their notes? Is there anyone who normally supports this person with decision-making? What is their social situation? What realistic options are there for future treatment and care?

It is also important that I prepare the person with whom I will be speaking, check that they are happy to have this type of conversation, and ask whether there is anyone else who should be involved in these discussions (For example, a family member or power of attorney).

Step 2: Meaningful Conversations

The conversation between the health or care professional and the individual, as well as those important to them, is at the heart of ACP.

I find the REDMAP framework, developed by Dr Kirsty Boyd, Reader in Palliative Care at University of Edinburgh, a helpful structure to follow.

It’s important to allow appropriate time for these discussions, and this can be a challenge in general practice. I will often hold these important conversations over a number of different appointments over several weeks. This allows the person and their family time to think about things before we agree an action plan that is right for them.

Step 3: Documentation and Sharing

Once a plan has been made, it is important that it is shared with all those who need to know. After all, it might be needed in the middle of the night when the practice is closed. The best way that we have to share this information between health professionals is through the Key Information Summary (KIS). However, information can only be added to KIS through GP practice clinical systems. For those unable to access this, there is now a web-based Essential ACP Online Tool to document aspects of the ACP. This can be securely shared with the individual or the GP practice. Work is progressing with a digital version of ReSPECT, and ultimately I look forward to a time when we have a single citizen-held electronic health and care record. One within which my patients can enter their own information about ‘What matters to me’, and that can be supplemented with information from all the health or social care staff who are involved in providing care.

Step 4: Regular Review

People may change their mind about their priorities for care as their health or social situation changes. What matters to someone in six months’ time may be very different from now. That is why it’s important that ACP information is regularly reviewed and kept up to date.

33% of the Scottish population have something entered within their KIS. Not all of these will incorporate an anticipatory care plan, however it does present me and my primary care colleagues with a logistical challenge to keep them up to date. Healthcare Improvement Scotland with RCGP and Scottish Government has recently published pragmatic guidance and top tips for reviewing and updating KIS. An important aspect of this guidance is exploring the resources (people and time) that are available and ensuring that the extended multidisciplinary team is involved in these reviews. This requires preparation and planning, which of course brings us back to Step 1.

So whether, like me, you are working in general practice, or are based in another part of our health and social care system, anticipatory care planning is important. It is not a one-off activity to be ticked-off and completed, but instead is a process that requires preparation and planning, meaningful conversations, documentation and sharing and regular review.

Paul Baughan is a GP and the Clinical lead with Healthcare Improvement Scotland’s Primary Care Team.

More information

Visit http://ihub.scot/acp for all the resources mentioned here and share with us your learning about ACP by emailing: his.pcpteam@nhs.scot.

Categories: COVID-19 blogs