Chapter 1 Personalising Realistic Medicine For Our Patients
In my third annual report, Practising Realistic Medicine, I stated that ‘building a more personalised approach to care is perhaps the most important aim of Realistic Medicine and perhaps one of our greatest challenges’. Just six months later, the findings from the Realistic Medicine survey confirmed that you agree: 37% of those who responded, by far the largest percentage, ranked this principle as their top priority for Realistic Medicine. But what does a personalised approach to care really look like and what can we do to deliver it?
What is a personalised approach to care?
The idea of understanding people in order to be able to care for them is not new. Over 2000 years ago, Hippocrates observed that:
‘it is more important to know what sort of person has a disease than to know what sort of disease a person has’.
At times, though, it can feel like healthcare is heading in the opposite direction, its roots growing away from the patient. There is often a disconnect between what patients want and need and what health professionals believe patients want and need. We must stop this from happening.
Victor Montori is Professor of Medicine at Mayo Clinic in the United States and Chair of the Board of The Patient Revolution, an organisation advocating for better patient-centred care. Victor is vocal about his fears:
‘as we professionalise and industrialise the management of healthcare, the patient becomes a blur, an entity that is almost mythological, a number, a statistic, some object that we put through a conveyer belt, something that we move from point A to point B and manage’.
This is a sobering assessment but one which has resonance with Dr Al Mulley’s warning in Realising Realistic Medicine to avoid reductionist approaches to care. It is a message that all health services, including our own, must heed. This is not the care that we would want for ourselves or our families. It should not be the care we provide.
As Victor explains, with a growing number of people now living with multiple, complex and frequently fluctuating health conditions, the need for a personalised approach is greater than ever:
‘Personalised care is particularly important for people living with chronic conditions that we cannot fix. If the healthcare system can meet their needs, it can almost certainly meet the more straightforward needs of people with single complaints that are self-limiting or easily fixable. But patients with chronic conditions keep coming back. They need to come back. They need our partnership and support. But, more importantly, they need their care to be aligned with the other things that are going on in their lives. Without a deeper understanding of their lives, there is limited hope for us to be effective in helping them. We must not only address their symptoms but also support their goals, their ability to adapt to their condition and their ability to self-manage, so that they are less dependent on us as health professionals when living their lives and pursuing their hopes and dreams. In this regard, personalised care is not just a “nice to have” but a “must have”’.
To deliver a more personalised approach for our patients, Victor champions a vision of ‘careful and kind care’. Careful care is founded on principles of quality, safety and best available evidence but, more importantly, considers a person’s biology (their disease and comorbidities) in the context of their biography (their life situation and priorities). Kind care is respectful of a person’s most precious resources – their time, energy and attention – and tries to minimise the impact of healthcare upon these.
I am fully aware that many of us practise healthcare in this way. However, in a complex and pressurised healthcare system, we must do more to ‘live’ the core principles of ‘careful and kind care’ and learn from new examples of good practice.
What can we do to deliver careful care?
In my previous Annual Reports, I have spoken of the need to involve people actively in decisions about their care.[1,2,4] We must make a more concerted effort to identify what matters most to them.
‘We need to notice and understand the person and, by focussing on learning something new, we can clarify either the content of the healthcare problem or the context in which it is playing out’.
Many clinical teams have now adopted a version of a ‘what matters to you’ conversation into their practice and, in doing so, have been able to personalise the treatment and care they provide. Adopting this approach often results in a psychological shift in culture where finding out ‘what matters to you’ simply becomes the way things are done. Box 1 shares a powerful testimony.
Box 1 – What Matters To You
Jennifer Rodgers is Chief Nurse for Paediatric and Neonatal Services across NHS Greater Glasgow and Clyde
On hearing about flipping the question ‘what’s the matter with you?’ to ‘what matters to you?’, I immediately returned to my ward with an idea to ask all the children to draw posters about what mattered to them. The posters would be placed above their beds or on their doors. Very quickly, I realised we made assumptions about what mattered to children. Often what they said surprised me: ‘that I get the right medicines’; ‘that I get a good night’s sleep’; ‘that I am safe’; ‘talk to me, not just my mum and dad’; ‘doctors see me, not my illness’; ‘doctors keeping their promises’. I then used quality improvement methodology to ensure we built a reliable process for collecting data on process and outcome measures.
Stories began to emerge. For example, Kendra was admitted to the children’s hospital with her dad. Together, they completed their poster but a short time later he was rushed to an adult hospital leaving Kendra on the ward without her main carer. Kendra had autism and had her own unique way of communicating. The poster enabled hospital staff to understand and care for Kendra. They knew she may try to ‘make a run for it’, and that she didn’t like getting her medicines. Kendra’s way of saying hello was touching or even pulling peoples’ hair. If the staff had not known this, they may have interpreted this as aggressive behaviour and managed the situation very differently.
Over the past 7 years, I have been spreading the use of ‘what matters to you’ posters to paediatric departments across Scotland and also collaborating with colleagues in adult services. In 2016, we had our first ‘What Matters to You’ day. A year later, more than thirty countries took part.
Asking what matters doesn’t just help us get to know people better. It gives families and staff permission to say things which otherwise would go unsaid. When my dad was in his final weeks, he was admitted to a Glasgow hospital. I sat with him to complete his ‘What Matters To Me’ poster. In that moment, he told me that I mattered to him and that he was proud. Without the prompt of the ‘what matters’ conversation that would have remained unsaid.
Health and social care teams are also capturing the essence of ‘what matters to you’ in other ways. In Practising Realistic Medicine, I discussed the Recommended Summary Plan for Emergency Care and Treatment (ReSPECT), a process that creates personalised recommendations for a person’s clinical care in a future emergency where they are unable to make or express choices.
‘Thanks for taking the time to sit down and actually listen to what I have to say’.
An innovative approach to care planning introduced by the Patient Experience and Anticipatory Care Plan Team (PACT) in NHS Lothian builds on this further. Here, clinicians working at the hospital front door recognised that there was a small group of patients who frequently presented to hospital in acute crisis. PACT uses an algorithm to identify Emergency Department (ED) frequent attenders and other patients at very high risk of hospital admission. Each patient is allocated to the most appropriate PACT key worker, who is an experienced ED charge nurse or consultant or, where relevant, an addictions or psychiatric nurse or consultant. When the patient presents to hospital, the key worker takes this opportunity to empathise and engage fully and to motivate behaviour change. The PACT key worker and the patient work together, usually collaborating with others including relatives, carers, the patient’s GP and wider hospital team to develop an Anticipatory Care Plan (ACP), which is uploaded onto the patient’s hospital record. The ACP then guides staff managing future presentations to the ED. A secure electronic copy of the ACP is shared with the patient’s GP in a format compatible with the Key Information Summary, enabling access by out-of-hours GP services and the Scottish Ambulance Service. A copy of the plan is also shared with the patient and anyone else that the patient wishes. To date, PACT has completed over 1,000 patient-centred care plans, and feedback from patients, relatives and staff has been overwhelmingly positive.
In 2018, mental health services in Scotland developed Transition Care Plans (TCPs) to empower young people to play an active role in their transition from Child and Adolescent to Adult services. The TCP gives young people the opportunity to express their needs, wants, preferences and concerns ahead of the move so that the transition can be attuned as closely as possible to what is important to them.
A multidisciplinary approach to delivering personalised care can be very effective. The Silver City project in Aberdeen City Health and Social Care Partnership uses a community multidisciplinary team (MDT) model to build resilience for people living with frailty. The MDT includes a GP, Community Geriatrician, Care Manager, Allied Health Professionals, District Nurses, a Community Geriatric Nurse, Practice Pharmacist, Community Link Practitioner and third sector representatives. They meet regularly in participating GP surgeries.
For each patient, the team tries to establish the person’s life goals and tailor their interventions to achieve them. The collaboration between GP and Geriatrician enables expertise to be shared on the patient’s illness and their life situation and priorities, ‘the biology and biography’ highlighted by Victor Montori. The MDT also identifies opportunities to improve wellbeing (including polypharmacy reviews and signposting to activities) and shares their suggestions with the patient. Although every meeting has these features in common, the MDT approach at each GP surgery is different, drawing on local assets and reflecting community and individual need. The project has been well received by patients and staff. For many people, their pattern of interaction with primary care services has been converted from reactive and disordered to planned and proactive. Crucially, the focus of their care is now on achieving what matters most to them.
‘The effort that you put in to being present and curious is rewarded by the knowledge that this particular person got a little bit better, a little bit of “health”, from meeting with you’.
What can we do to deliver kind care?
To rise to Victor’s challenge to deliver kind care, we need to think creatively. How can we minimise the impact of our care on a person’s time, energy and attention? How can we design our services and adapt our practices to engage patients in their care? How do we involve people without overwhelming them?
We must be sure that we are delivering the right care to the right people at the right time in the right place. Put simply, we must deliver better value care. A good example of this is the Distress Brief Intervention (DBI) Programme. In 4 pilot areas in Scotland, people in distress are being offered alternative person-centred support by front-line emergency services (Emergency Departments, Police Scotland, Scottish Ambulance Service and Primary Care). DBI is a two level approach to de-medicalise distress and care for people as citizens rather than as patients.
In DBI level 1, trained front-line staff provide a compassionate response and, if further emergency support is not required, offer referral to DBI Level 2 distress workers. DBI level 2 is provided by commissioned and trained third sector staff at a place and time to suit the person. DBI staff guarantee contact within 24 hours of referral and provide supportive listening, compassionate community-based problem solving, signposting, and wellness and distress management planning for up to 14 days. Early observations show very positive experiences and outcomes for both the person in distress and front-line services. A formal evaluation will be completed by the University of Stirling by 2021 as an action of the Mental Health Strategy 2017-2027.
Guided by similar principles, maternity and neonatal services continue to evolve to support parents to be the primary carers for their baby at this early but critical stage of life. In 2017, Scottish Government published The Best Start: A Five-Year Forward Plan for Maternity and Neonatal Care in Scotland.
Two recommendations focus specifically on building a personalised approach to care:
- Maternity and Neonatal Care should be co-designed with women and families from the outset, with information and evidence provided to allow her to make informed decisions in partnership with her family, her midwife and the wider care team as required.
- Services will regard mother and baby as one entity and truly put the mother, baby and family at the centre of service planning and delivery.
One early success for Best Start has been the new transitional care service in NHS Forth Valley. Here, maternity and neonatal services collaborate to support parents and babies to stay together on the postnatal ward. This includes helping parents to learn key aspects of care, such as nasogastric feeding. The bed space and staffing within the ward has also been reconfigured to enable the transitional care service to flourish. The changes have been welcomed by families and have resulted in fewer admissions to the neonatal unit, reducing separation of mother and baby and maximising opportunities for attachment and bonding. The work was awarded the Best Poster Prize at the 2018 Realistic Medicine Conference.
‘Very valuable (service) as it doesn’t break the bond between the mother and baby. The most important thing is for a mother to be with her child’. Mother receiving Best Start transitional care
Technology-enabled care also offers new ways of engaging with people and opportunities for providing kind, minimally-disruptive care. Its value is highlighted in Scotland’s Digital Health and Care Strategy published in 2018.
Home and Mobile Health Monitoring (HMHM), sometimes referred to as ‘telehealth’, is the use of digital remote monitoring technology to enable people outside of hospital to receive, record and relay information about their health and wellbeing. HMHM is in use across Scotland with protocols developed for conditions relating to some of the country’s top health priorities, such as mental health, hypertension, heart and respiratory disease and diabetes.
There is strong evidence to demonstrate that, due to HMHM, more people are now taking responsibility for and self-managing their health. Access to services has improved and face-to-face contacts have been optimised.
Technology can also be used for healthcare consultations. ‘Attend Anywhere’ provides a video clinic service that people can access using their own web browser. Attend Anywhere has been established in 13 NHS Boards as well as in Health and Social Care Partnerships and third sector organisations across Scotland. Box 2 summarises its impact in one Scottish board.
Box 2 – NHS Near Me
Clare Morrison is Lead for NHS Near Me in NHS Highland
NHS Near Me is a new digital service providing outpatient appointments closer to home using video consulting. It was created in response to patient demand to reduce travel to appointments in Raigmore Hospital, Inverness. It uses the Attend Anywhere platform but the difference in NHS Highland is that a systematic quality improvement approach was taken to introduce it. This involved co-design with patients, clinicians and other NHS staff for six months before a process was agreed for scale-up. NHS Near Me scale up began in September 2018.
The service includes:
- Video calls requiring clinical support: 4 staffed NHS Near Me clinics in locations over two hours from Raigmore Hospital.
- Video calls from home: patient uses own device (e.g. smartphone) or, to ensure equitable access, one of 15 NHS Near Me rooms.
‘I wish this service had been in place when my husband was alive. We spent the last year of his life driving up and down to Raigmore for hospital appointments. Avoiding this would have given us much more quality time together before he died’.
As of January 2019, 17 clinical departments are providing NHS Near Me consultations, with more about to start. Our Haematology department is now the number one provider of NHS Near Me/Attend Anywhere consultations by volume anywhere in Scotland, with several other Highland services in the top 20. In Caithness, we are already providing 8% of outpatient appointments by NHS Near Me. This means almost 80 patients a month are now avoiding travel to Inverness.
NHS Near Me enables us to provide appointments where patients want them, rather than expecting patients to fit their lives around the NHS. It reduces health inequalities related to access and limits the detrimental effects of having to travel for appointments - for frail patients and relatives, it is less exhausting; for others, less time needs to be taken off work or school.
‘Having an appointment at home meant I didn’t have to go outside in icy weather or get someone to watch my husband’.
Patient, carer for husband
There are other simple and effective ways in which we can help our patients. Each week, thousands of letters are sent about patients in Scotland but rarely are they shared with the person concerned. Excluding people from their letters, or indeed including them in letters that use technical or clinical language, feels at odds with the meaningful conversations we must have to facilitate shared decision-making. Two of our Realistic Medicine Leads have recently changed their practice and now write directly to their patients.
Dr Steinunn Boyce is a Realistic Medicine Clinical Lead in NHS Fife and a Consultant in Palliative Medicine. In her clinic, discussions about deteriorating health and prognosis are commonplace. She asks permission to write directly to patients, copying in their GP and other clinicians. To date, no-one has declined this offer. The letters serve as a useful reminder of what has been discussed and agreed during the consultation. They also enable people to share this information with family, carers and friends.
‘Letters can empower the person and those close to them to play a more active role in future decisions about their care’.
One letter resulted in a conversation with a patient who felt that her prognosis had been over-estimated. Another patient shared her letter with relatives abroad, improving the family’s understanding of her illness. Importantly, this prompted her relatives to arrange an earlier visit home. No-one has expressed shock at writing to them about subjects such as prognosis, “do not attempt cardiopulmonary resuscitation”, changing future care needs and the dying process. This is most likely because the content of the letter is a reflection of the honest and compassionate conversation already shared in person in the clinic. Box 3 showcases a selection of real extracts from Dr Boyce’s letters.
Box 3 – Extracts from palliative care clinic letters written directly to patients
‘You and your wife are coming to terms with the fact that there is no further treatment for your ... cancer. You understand that the cancer has got worse despite the chemotherapy and, given how unwell it made you, further treatment would probably do more harm than good.’
‘Although you are keen to remain at home, you are also very mindful of the impact of this on your family. If things were to become difficult you would prefer an admission to the hospice either for symptom control or end of life care.’
‘You admitted you are feeling quite angry about what is happening to you, but are not frightened about what is to come. [Your wife] was very keen to talk about how long you might have, and with your permission I explained that it was likely that time was measurable in months. You did not appear shocked by this. I explained that it is very difficult to predict but often the rate at which your condition is deteriorating, such as energy levels and ability to do normal activities, can indicate timeframes.’
Dr Ewan Bell is the Realistic Medicine Clinical Lead in NHS Dumfries and Galloway and a Consultant Biochemist. He now writes to his patients living with diabetes directly and shares his letters with their GP. Dr Bell’s letters use non-technical language to set out the agreed treatment plans and remind his patients of how and when to attend their next appointment. His letters also explain how people can access their test results online. If appropriate, he provides them with a patient-initiated follow-up appointment rather than a routine booking. To assess the impact of his changes, Dr Bell surveyed his patients and their GPs. 38 patients and 33 GPs responded, a return rate of 45% and 65% respectively. Feedback was very positive. Both groups agreed that his letters have helped empower patients to manage their diabetes effectively. 90% of patients liked getting their letter directly, 80% felt more involved in decisions about their health and care, 70% felt it helped them understand their diabetes better and 60% of patients liked being in control of their next appointment. 80% of GPs liked the style and format of the letter and felt it was detailed enough to provide them with the up-to-date information they needed. The next step is to measure the impact of Dr Bell’s approach on patient compliance to agreed treatment plans and the impact on clinic waiting lists.
The Academy of Medical Royal Colleges has now adopted the ‘Please, write to me’ (‘letters to patients’) initiative as part of its commitment to person-centred care and it is entirely consistent with the General Medical Council’s Good Medical Practice which states:
‘You must give patients the information they want or need to know in a way they can understand’.
I am very supportive of this approach and would like to see it used more extensively across Scotland.
We must also build the same personalised approach in social care. The Three Conversations Model, currently being introduced by Edinburgh Health and Social Care Partnership and already established elsewhere in the UK, is one example of how this can be achieved. Here, care workers and social workers are trained to have a sequence of three conversations with people who need support. The overarching aim is to help people lead independent lives by identifying their goals, unlocking their own resources and connecting them to the assets of their community. Traditional support packages are offered only when other options have been exhausted. The stages are outlined below:
- Conversation 1: Listen and Connect [initial contact to understand what really matters] - what do you want to do and how can I connect you to resources and support that will help you to achieve this?
- Conversation 2: Work Intensively with People in Crisis [when people are at risk] - what needs to change urgently to make you safe and help you regain control of your life, and how can I help make that happen?
- Conversation 3: Build a Good Life [when long-term support is needed] - what does a good life look like, what resources and connections will enable you to live this life, and how do these need to be organised?
The principles of both careful and kind care are evident in this model. There is an emphasis on understanding what matters to the person and on decision-making in partnership. There is also a conscious move away from the more conventional ‘sorting office’ approach to social care, characterised by waiting lists, triage and lengthy, tick-box, form-led assessment, in favour of a more responsive and collaborative model. Approaches such as this will help us to deliver better value care to those choosing to live at home, or in a homely environment, and will enable staff across our integrated health and care system to provide Realistic Medicine.
This chapter opened with the question ‘what does a personalised approach to care really look like?’. It concludes with two answers.
First, we must focus on the person and achieve a better understanding of their preferences and values. This does not mean that we always give people what they want because we know that there are times when it may not be appropriate or practical for us to do so. But we should always consider what matters to them and try to better understand how their disease and our treatment fits into the broader context of their lives.
Secondly, we must focus on the service we provide. Where is there too much medicine? Where are we creating unnecessary work for those receiving our care?
To practise Realistic Medicine, we need to consider both of these areas. We should take the time to talk to our patients about their lives and then use our experience and clinical judgement to deliver true evidence-based medicine in a personalised way. This is an approach of which Hippocrates would approve.