Delivering Personalised Care
Delivering Personalised Care
The COVID-19 pandemic has created a fresh set of challenges across our health and care system. We have had to rethink and transform our current services to allow us to continue to deliver safe, effective and personalised care in the most difficult circumstances. We have also had to innovate our practice in response to evolving knowledge of the virus and the disease it causes.
The pandemic has allowed the principles of Realistic Medicine to come to the fore. Since its start, I have been struck by the sheer number of professionals advocating for the practise of Realistic Medicine, now more than ever. This view was further reinforced through a series of engagement workshops held in December. Here, people reiterated that continuing to build a personalised approach to care through shared decision-making is the key to delivering care that people really value. This approach also reduces harm and waste.
A Personalised Approach to Care
Delivering personalised care is a priority for NHS Scotland and the Scottish Government. During 2020, we were confronted with the need to accelerate our practice as we learned more about the COVID-19 virus, and reconfigured our health and care services for a very different context. Collaborative working with, and between, experts equipped us with the knowledge to refine our approaches. Most importantly, listening to patients, and those close to them, has really helped us understand what matters to them. It has ensured that we continue to deliver the careful and kind care we discussed in Personalising Realistic Medicine.
The Scottish Government's shielding programme was introduced in mid-March and advised shielding of those at highest risk of developing serious illness if they contracted the COVID-19 virus. Those who were shielding were given support, including free grocery boxes, home delivery of medication, and priority access to supermarket home delivery slots. By listening to those who were shielding, it became clear that isolation was having a major impact on the mental health of many people, and a more person-centred approach was needed.
In Shielding: A Way Forward for Scotland we set out a new approach to shielding. In line with Realistic Medicine, our aim is for people who are shielding to be able to make informed decisions that allow them to reduce their risk of catching COVID-19, while minimising the adverse impact of shielding on their wellbeing. This new approach supports people to understand their clinical risk and the risk associated with day-to-day activities, as well as the steps they can take to mitigate risk. We provided information, advice and tools to support people to make informed choices about how to stay safe, and protect themselves mentally and physically. The information found here can also be of benefit to others who are at higher risk from COVID-19 due to age or pre-existing health conditions.
As professionals in health and care, it is important that we explore the wider factors that influence people's health to ensure we can fully support their wellbeing. We should personalise our approach to care by finding out what matters to our patients, not just in terms of the medical decision in hand, but to support them to thrive as individuals. This is vitally important at present as people's circumstances may have changed dramatically as a result of the pandemic.
Shared Decision Making
Decision-making and Consent: GMC Guidance
Shared decision-making and informed consent are fundamental to good practice. Serious harm can result if we don't listen to the people we care for, and if they are not given the information and support they need to make informed decisions about their care. We must also support people to have the knowledge, confidence and skills to cope with the complex demands of our modern health and care system. We have worked closely with the General Medical Council (GMC) over the last couple of years to help develop and promote new guidance on decision-making and consent. It aims to support meaningful conversations with the people we care for. The guidance will help to ensure that people are active partners in their care, and value the care we provide.
The updated GMC guidance Decision Making and Consent was launched in September. It focuses on delivering personalised care and firmly aligns with the principles of Realistic Medicine, including:
- finding out what matters to people, so we can share relevant information in the most effective way;
- the importance of taking a proportionate approach – good decision making needn't always be formal, or time consuming; and,
- suggestions for how other members of the healthcare team can support decision-making.
Many of us are already working hard to support and empower people to make informed decisions about their care. However, the publication of the GMC's guidance during the pandemic has been timely. It reinforces the importance of personalising the care we provide. I firmly believe that it provides us all with an opportunity to reflect on the way we interact with the people we care for. NHS Education for Scotland (NES) has produced an online module to aid shared decision-making, and I encourage you all to complete it.
Ensuring Shared Understanding
Health literacy has been vital during the pandemic to ensure public safety. Our knowledge of COVID-19 has evolved at speed. We have had to ensure that guidance is clear, concise and accessible so that the people of Scotland understand the situation and what is being asked of them.
Many people living with complex health conditions continue to be cared for remotely. It is, therefore, essential that we provide advice that's easily understood so that people feel empowered to be able to self-manage where appropriate. As we continue to encourage supported self-management, I ask that you consider whether there is more you can do in your daily practice to make health information and services more accessible to the people we care for.
In March, the Scottish Government produced resources on health literacy techniques for the Royal College of General Practitioners (RCGP). In addition, the Health Literacy Place also contains information on tools and techniques to support shared decision-making and understanding.
Open and Honest Discussions About Care: Anticipatory Care Planning
Anticipatory Care Planning (ACP) has long been an important way of delivering personalised care.[45-46] It is vital to truly understand what matters to people, should they become too unwell to express their wishes. By encouraging meaningful conversations with the people we care for, and those closest to them, we can record their wishes in their anticipatory care plan. We must continue to conduct our ACP conversations in a sensitive and respectful manner, recognising that for some people, they are not easy conversations to have.
The COVID-19 pandemic has changed the way we hold these conversations. Restrictions have necessitated a different approach. What should ideally be a face-to-face conversation has to take place by video link or by telephone. To ensure we remain able to have meaningful conversations, we have collaborated with colleagues from across healthcare, including NHS Healthcare Improvement Scotland, NHS Inform, the Royal College of General Practitioners and the British Medical Association, to develop some excellent support materials, including Making a plan for your care during the COVID-19 pandemic.
This video, by Dr Paul Baughan, a GP in Forth Valley and National Clinical Lead within Healthcare Improvement Scotland, explains the importance of care planning conversations for those most vulnerable to COVID-19. I ask that you share this video with patients and colleagues as it demonstrates the importance of these discussions not only in the current context, but in our daily practice when making sure we provide a personalised approach to care.
Treatment Escalation Plans
Modern medicine has many successes. From biologic drugs, to stenting and organ transplantation, these medical successes energise us and grab headlines. We know too, however, that medical progress has limitations and, in some cases, can cause harm. Treatments that save the lives of some may be futile, burdensome and distressing for others.[47-48 ]There are a growing number of people in Scotland living with multiple, complex and fluctuating health conditions for whom personalised, careful and kind care is vital. All elements of an emergency admission cannot be planned for, and although many people may have an anticipatory care plan, it may not help when faced with decisions about interventions in hospital. That is why many of our NHS Boards have implemented Treatment Escalation Plans (TEP) or Recommended Summary Plans for Emergency Care and Treatment (ReSPECT) during the pandemic.
Realistic Acute Medical Care: The Role of Treatment Escalation Plans
TEPs have been introduced across Scotland including Fife, Greater Glasgow and Clyde, and Lanarkshire.
The groundwork is critical. We must consider the context of a patient's illness and the consequences of intervention - combined with good understanding of the patient's values and preferences. Identifying non-beneficial, potentially harmful treatments is in everyone's interests. The aim is to establish agreed Goals of Treatment – to cure, or repair, or palliate - and outline what would, or would not, be appropriate if the patient deteriorates at a later stage. The TEP is a communication tool that supports good out-of-hours care. Without a Plan, on-call staff often resort to default interventions which can be the wrong thing to do.
Locally, in NHS Lanarkshire, uptake has been close to 100%. Ultimately, the contents of TEPs reflect the clinical decision-making of their authors: are they realistic?
The aims of a Treatment Escalation Plan:
- To fulfil the treatment preferences of a patient and/or their family.
- To reduce uncertainty by providing information about, as well as appropriate limitations to, interventions which are likely to be futile and burdensome.
- To minimise harms due to overtreatment or undertreatment.
- To improve management of acute episodes of deterioration in long-term conditions or at end-of-life.
- To provide continuity of care and good communication.
- To reduce moral distress among staff.
There is good evidence which demonstrates the benefits of TEPs. [49-52] Their development and roll out across NHS Boards is Realistic Medicine in action. TEPs have come about through determined local clinician-led action. This involved learning from good practice elsewhere and adapting it to suit local contexts. It's precisely the kind of clinical leadership required to deliver the personalised care we wish to see.
Manage Risk Better
Decisions about care are not always clear cut. It is important that the people we care for are equal partners in decisions about their care, and we provide them with balanced information on benefits and risks which enables them to make an informed choice. Over the last year we have had to manage risk, and make difficult decisions about care when there were many unknowns, yet we have still achieved excellence in care.
Zak's Story: Kidney Transplant during a Pandemic
End-stage kidney disease is rare in childhood. Around 8-10 kidney transplants are performed in children in Scotland each year, at the Royal Hospital for Children, Glasgow. At the start of the pandemic, there were huge uncertainties, and difficult decisions had to be made. After careful consideration, the transplant list was kept open for children at high risk, and planned transplants for children at lower risk were postponed. Most transplant centres in the UK closed completely, which led to Scotland receiving many more kidney offers than usual and enabled successful transplantation of all high-risk children. When it became clear that there was a lower risk of serious illness from COVID-19 in children, the transplant centre began to carry out transplants for all children. By the end of August, every child on the waiting list in Scotland was successfully transplanted. The transplant list was empty for the first time in more than 20 years.
In this video, Zak talks about his experience and explains why receiving a kidney transplant during the pandemic was so important to him.
Managing Risk - Making Medication Personal
The typical over 70-year-old is living with at least three long-term conditions and is likely to be on multiple medications as a result. Older people often express that what matters most to them are relationships and their autonomy. How might what's important to us impact on the treatment we choose? Might we want fewer interventions, more time at home with family, or to maintain our independence?
iSIMPATHY: Making Medication Personal
iSIMPATHY, (implementing Stimulating Innovation in the Management of Polypharmacy and Adherence Through the Years) which launched in November, aims to tackle the harms associated with polypharmacy. Realistic Medicine underpins this project. Polypharmacy medicine reviews will ensure that people receive a personalised assessment of their medication and allow us to share prescribing decisions with them. By finding out what matters to our patients, we will ensure that they receive the treatment which suits their individual needs. Polypharmacy reviews reduce harm and waste by assessing for side effects of treatment, monitoring for drug interactions and reviewing adherence.[55-56] By 2023, iSIMPATHY aims to optimise use of medicines through polypharmacy medicine reviews for 6,000 people in Scotland, and deliver training to GPs, hospital doctors and pharmacists.
We need to be honest about the limitations of many of our treatments. As we get older, we are prescribed more medicines, but are less likely to take them as prescribed. In those who take four or more medicines, 50% don't take them as prescribed. While medicines can bring great benefit, they can also cause significant harm. Older people tend to experience worse side effects or consequences of treatment. This is why we should strive to actively manage risk associated with polypharmacy by regularly reviewing and rationalising our patient's medications.
Become improvers and innovators
We have worked in the most challenging circumstances during the pandemic, often under significant pressure and with limited resources. Nevertheless, during these difficult and uncertain times, I've seen both professional colleagues and the public embrace change. We must continue to learn from this experience, innovate, and strive to improve the treatments and care we provide.
Research during the pandemic
As well as caring for people with COVID-19, our workforce has supported vital research which has been a crucial part of our pandemic response. Our successes in COVID-19 research are world-leading and have been achieved through collaborative working across the UK.[58-61]
Over 100 COVID-19 studies have been delivered across Scotland since March, involving over 66,000 participants. This is an outstanding accomplishment, and I am very proud of how our research community responded when tasked. Research has encompassed drug and vaccine trials, the testing of new diagnostics, and clinical and observational studies.[58-61] Involvement in research during this time has been challenging. I want to express my gratitude to our Health Boards and research community for their continued efforts, and importantly to thank the people who participated in these studies.
We must build on this momentum for change, continue to innovate and invest in research to advance our knowledge and practices.
Embracing technology has allowed us to continue to deliver care when we couldn't see people in person. As part of our response to the COVID-19 pandemic, Near Me, a video consulting service, has been made available in almost every hospital and GP practice in Scotland. It's transforming the way people are accessing health and care services. Prior to March, there were around 300 Near Me consultations a week. By June, it was nearly 17,000 a week, and by January, over 22,000 a week were taking place. There may have been some early hesitancy to make the change to video consultations, but the pandemic has made us realise its full potential.
Near Me has supported physical distancing by reducing the number of people attending services in person. It supports personalised care by enabling people to attend appointments from their own home and allows someone to join the video call with them, even from abroad. Moreover, Near Me reduces the need for time off work or study, and contributes to a significant reduction in miles travelled, delivering greener healthcare. Near Me is helping us deliver the careful and kind care that Victor Montori spoke about in our last annual report. The range of services now provided by Near Me is extensive. It is used everywhere from addiction services to wheelchair servicing. People's experience of Near Me has generally been very positive as it offers choice in how they wish to access services. The continuous improvement of the service is underpinned by comprehensive public engagement.
"It was more efficient because I wasn’t exhausted from the journey, my mind was fully engaged. The dialogue itself was far more constructive."
"Less stress as not worrying about getting to appointment on time with traffic and parking issues."
"Face to face via video is better than face to face with masks on."
"This is perfect for me as I live 81 miles away from the hospital."
Helping People Choose Wisely
As consultations increasingly move online, we have embedded the Choosing Wisely BRAN questions (Benefits, Risks, Alternatives, Nothing) into the Near Me virtual waiting room. Many NHS Boards are also including the BRAN questions on appointment letters. By encouraging people to ask the BRAN questions, we empower them to be active partners in decisions about their care, and support them to make an informed choice.
The speed at which Near Me has been adopted brings me great hope for the future. It is a fantastic example of Realistic Medicine in practice, demonstrating that improvement and innovation can support delivery of more personalised care.
While our ability to harness this technology has been impressive, we can do more to realise its full potential. Although virtual consultations do not suit everyone, we need to make greater use of Near Me for supported self-management, to involve the wider healthcare team in multidisciplinary discussions about patient care, to facilitate patient support groups, and for continued professional development of health and care professionals. We should also consider how we can make use of further technologies to bring care closer to home, such as devices for remote monitoring.
Reducing Harm and Waste
Over the last year we've had to strike a balance between lifting restrictions, safely re-mobilising healthcare services and maintaining vigilance against an increase in virus transmission. Saving lives has been our priority and some healthcare services were scaled back to minimise the immediate risk of harm. This has had significant consequences. Non-urgent care was initially halted, impacting on outpatient appointments and waiting times. As I've mentioned already, people have also been reluctant to access health services. Despite national campaigns to encourage people to seek medical attention when they need it, I remain concerned that many people have chosen to stay away.
The COVID-19 pandemic has impacted on the delivery of routine health services for longer than anticipated. Once routine problems now have greater urgency. We need to review our approach to the organisation and delivery of care as the demands on the health service continue to rise and show no sign of retreat. By practising shared decision-making and delivering a more personalised approach to care, we can assist people to make an informed choice about the care that is right for them, early in their treatment journey. In turn, this will allow us to utilise our services more effectively and efficiently, help ensure timely initiation of treatment, and reduce harm and waste. This is in keeping with our long-term strategic view that services should reflect people's needs rather than the needs of our services. That is why Realistic Medicine is a key enabler of our Clinical Prioritisation and NHS Remobilisation Frameworks. It will help ensure that those who need our help the most, receive care that they value, when they need it.
Transforming our Outpatient Services: Modernising Patient Pathways Programme (MPPP)
Our outpatient pathways are being redesigned across Scotland. By adopting the principles of the MPPP we can make sure that the optimal pathway is chosen at the first point of contact. Active Clinical Referral Triage (ACRT) has the potential to reduce waiting times by eliminating unnecessary face to face appointments. For example, people frequently wait for long periods before receiving an appointment, when the information they need can be readily provided by other means – a letter, by phone, video or website. Discharge Patient-Initiated Review (PIR) encourages patient autonomy and helps to avoid unwarranted use of our clinical resources, as well as our patients' valuable time, by avoiding routine "check-ups", either following an intervention or for a long-term condition. These appointments often add little value as there is no alteration in management. Discharge PIR empowers people with the information they need to self-care and provides advice on what symptoms should prompt re-engagement with services, with easy access to initiate review. It is helping to ensure we personalise our approach to the needs of our patients, while making better, more targeted use of our healthcare resources.
"I received correspondence from the hospital explaining a new way of managing my knee arthritis following the GP referral. A booklet was provided explaining the benefits and risk of the options available to me, and how-to self-care including exercises. It was reassuring that I could contact the Unit at any time for further discussion, especially if I wanted to be considered for surgery. After 2 years I was reviewed virtually (without going through my GP) and we agreed that there was no need for further review, but I could contact the Unit if and when I needed further advice."
Tackle Unwarranted Variation in Practice and Outcomes
The pandemic has highlighted the importance of a collaborative approach which utilises combined experience and knowledge to achieve the best outcomes for our people. This approach also reduces variation in practice and outcomes, especially when faced with novel or complex challenges. Now we need to consider how we can use this experience and work together to tackle other urgent issues in health and care.
EQuiP (Effective and Quality Interventions and Pathways)
EQuiP is helping us to identify unwarranted variation in practice and outcomes. The programme aims to optimise clinical pathways for procedures when the evidence base suggests they are of lesser value at a population level, while recognising that they may still be of value at an individual level. Pathways have been piloted in NHS Greater Glasgow and Clyde, resulting in a large number of patients who have received more appropriate, higher value care:
- Minor skin lesions - 160 new outpatient referrals per month where patients were given advice on benign (non-cancerous) skin lesions, avoiding the need to attend unnecessary appointments;
- Minimally symptomatic inguinal hernia - 80 new outpatient referrals per month. Patients were given advice and the option to opt-in to an appointment for inguinal hernia;
- Uncomplicated varicose veins - 80 new outpatient referrals per month where patients received advice for varicose veins rather than attend an outpatient appointment.
While the majority of people recover quickly from COVID-19, it is clear that a significant number of people continue to experience longer-term symptoms many weeks or months after infection. The experiences of people living with long COVID demonstrate that it affects each person differently and symptoms can fluctuate, underlining the importance of care that is personalised to the individual. As we are learning more about this emerging condition, it is important that we listen to and validate people's experiences, and are alert to symptoms that may require referral for specialist investigation. The Scottish Intercollegiate Guidelines Network (SIGN) has worked with partners across the UK to develop an evidence based clinical guideline. This guideline will assist us in tackling unwarranted variation in practice and outcomes, and will be reviewed and updated in response to emerging evidence.
Practising Realistic Medicine has never been more important. If we wish people to value the care we provide and the way we provide it, we must take time to understand what is going on in people's lives, empower them to be active partners in their care and be mindful of the impact our practice has on the people we care for. We must continue to embrace technology and innovate to build services that meet people's needs, not the needs of our system.
- What have we learned from our pandemic experiences that will strengthen our approach to delivering personalised care?
- How can we work more collaboratively across professional and organisational boundaries to provide better care for the people we care for - especially for those living with complex conditions?
- How can we use the learning from improvement programmes to streamline our care pathways and ensure people receive the right care at the right time?
- Can we reduce harm and waste by considering whether a treatment or an investigation is going to add value to the care we provide our patients?