Category: Co-production

Risky Business: Welcome to uncertainty

What is the risk that this treatment will harm you? Is there a chance that a test will give a misleading result, leading to a misdiagnosis? What is the likelihood that your new diagnosis will have a good or bad outcome?

The practice of medicine is full of the management of risk, and communicating risk. There is a whole annual conference, called Risky Business, aimed at nurses, doctors and others, discussing how to assess and manage risk. One telling quote from a participating organisation, Cincinnati Children’s hospital: ‘We cannot compete on safety. We have a moral obligation to share anything we have learned which will help another…’ From the macro to the micro; as individual clinicians in the one-to-one consultation, we have an ethical duty to share what we know about risk, and to share it in a way that is easy to evaluate.

As humans, we are heavily influenced by the way that risk is presented. Relative risk or absolute risk? As a percentage, hazard or odds ratio? The figures can seem very persuasive and it is not always easy to understand what it means, especially at an individual level.

I’m a fan of Dr Margaret McCartney, a GP from Glasgow. She also has an academic role at St Andrew’s University, where she is the Director of the Centre for Evidence and Values in healthcare. She is interested in many things, including evidence based medicine, screening, risk, bias, and public communication about healthcare. What follows is her illustration on the communication of risk, focusing on a very topical issue; whether to screen for prostate cancer.

Which test would you choose? How would you feel if I told you this was the risk information from the same paper presented in two ways? After 23 years of follow-up, the risk of death from prostate cancer was 1.4% in the screened group and 1.6% in the unscreened group. That is about 0.2% reduction in absolute risk. 1.6 reduced by 13% is 1.4, so that is the relative risk. It is the second figure that has grabbed the headlines and the attention of politicians. As the patient and GP, it is the first figure that we should consider. The screening test also includes some harms, including over-diagnosis and over-treatment, with a very small reduction in risk.

Effective communication of risk in general practice is essential not only for patient understanding but also for fostering trust and shared decision-making. Building on the foundational importance of risk communication, practitioners must tailor their approach to each patient’s level of health literacy and cultural background. This involves using clear, non-technical language, visual aids, and analogies that resonate with individual experiences, while also being mindful of the emotional impact that risk information may have.

Furthermore, engaging patients in open dialogue allows them to express concerns, ask questions, and clarify misunderstandings, which ultimately supports informed consent and adherence to management plans. By continually refining communication strategies and adapting to the evolving needs of patients, general practitioners play a pivotal role in demystifying medical risks and facilitating effective healthcare outcomes.

HOW TO COMMUNICATE RISK, BENEFIT AND HARM:

  • Use absolute risk rather than relative risk. In the PSA article, the absolute risk reduction is from 1.6% to 1.4%
  • What are the risks of a disease without treatment.
  • What are the absolute risks of harm of any particular treatment?
  • What is the burden of treatment? How will the treatment (or lack of it) affect quality of life, and for how long?

Using risk alone to guide decision making is insufficient; in the mix is the needs of you the patient, your goals, what is important and what is achievable. Few of us can remember all of the known risks of every treatment; using patient decision aids helps to support communication of risk. NICE, NHS England, Cochrane, the University of Ottawa all have decision aids of varying quality. Ask your doctor where to find the best decision support for the condition you are discussing.

What is patient-centred care?

What do we mean by patient-centred care? This isn’t a trick question but an attempt to reach a consensual answer.

A common response is that it’s about placing the patient at the centre of the care process, and seeking to address what matters to them, akin to a tailor made suit, rather than using a ‘one size fits all’ approach.

Some definitions focus on the responsibility of health professionals to inform patients about their healthcare and give them a choice. It could be more than this, with patient-centred care being about the partnership between practitioner and patient, with this relationship rooted in sharing power, rather than upholding a paternalistic attitude.

It does not mean doing everything that a patient asks; it is not ‘patient centred’ to give out diazepam and opiates without restriction when the consequence can be a hard-to-manage addiction. Being patient centred in this scenario might include a discussion about the reasons for a request, negotiating and sticking to a management plan, arranging additional psychiatric support, or a number of other options.

Patient centred care is also about designing services that meet the needs of patients rather than the needs of the organisation. This implies that the public should participate in the planning and redesign of services, and the reshaping of policy.

There are pitfalls. One commentator points out: ‘Three proposals topped a poll of options for reform at the ‘listening exercise’ attended by more than 1,000 people in Birmingham: extending GP opening hours, annual health MOTs and more walk-in centres. This familiar list of the preoccupations of the professional middle classes confirms the way in which this focus group approach places the demands of the worried well over those of the seriously ill (or even of the not very well, but socially marginal).

‘Listening exercises’ tend not to include those who are ill, particularly the elderly, children, people with mental illness or learning disabilities, families with young children, those who are not fluent in English – in fact, the majority of our patients and certainly those patients most in need of healthcare services. These proposals will increase costs out of all proportion to benefits and are likely to disrupt continuity of care for those patients for whom this is the most important aspect of primary care services.’

The concept of patient-centred care encompasses all of the above – from the organisational, redesigning services end of the patient-centred care spectrum through to the individual interactions side. However, health professionals, educationalists, managers and patient representatives are all developing different meanings that reflect their own history and position. Without a consensus about patient-centred care, it is hard to see how we can agree on how to deliver it. 

Being patient centred does not just mean responding to the demands of a vocal few. It is also about providing accessible, reliable care to the sick, the sad, and the frequent attenders, and treating all patients with common decency.

How do you weigh up medical advice?

I’ve been visiting family and friends, and as often happens, we compare medical notes. How easy is it to visit your GP? Who has the worst osteoarthritis? What medication have each of us been prescribed for high blood pressure? All of our social networks and norms are in play. Our family has a tendency to regard illness as a weakness,, and any visit to the GP involves careful callibration against the family norms.

One sister prefers to seek alternative solutions, changing her diet, drinking apple cider vinegar for her joints, and doing yoga. Another does not vist her GP or look for health issues on the internet, but pursues a very healthy lifestyle. My brother has sought private advice, my mother has checked with multiple medically-qualified relatives and friends. My dear dead dad used to boast about the top specialists he used to see, but would check in with me to see if I had heard of them, for validation.

Ever since I started medical school, I have been a sounding board for all sorts of friends and relatives, even before I had started my clinical years. In recent years, this has increased in frequency, and I have been wondering about this. Do people trust their GP and other qualified health professionals less? We can check everything on the internet, but sometimes that information is unreliable.

There are a number of factors in play. First of all, access to the internet has been growing over the last twenty five years. Artificial intelligence means that search engines can prioritise and summarise information quickly, no appointment required, any time and anywhere. Official sources of information such as NHSinform and patient.info can be a boon to health professionals, who can signpost to them for a modern take on the information leaflets we used to stock, and more likely to be up-to-date. Specialist websites provide a sense of community and support for conditions such as diabetes or muscular dystrophy.

Reliance on digital support for healthcare marginalises some groups. Statistically, older women are the least likely to be IT literate or to trust digital solutions, but low income, deprivation, language and cultural barriers are all in play. The affluent, urban, busy professional has become the target audience.

As a health professional, when I speak to a patient with high levels of understanding of their condition, and good health literacy, this is both a blessing and a stress. The fully engaged patient can participate in discussions about various health care options, can evaluate information, and challenge my own assumptions and knowledge base. This same group of patients may defer decisions so that they can evaluate and research their health questions further. It can be time consuming and intense, and of great value to the patient.

The second factor is less tangible than reliable information. It is trust. In our modern NHS, there are fewer GPs per head of population. At the same time, an older and less healthy population requires more health care. I could expand at length about the reasons for the reduction in whole-time equivalent GPs, but that is for another day. The upshot is that it has become harder to get an appointment with a GP and harder to see a GP that you have seen before. Continuity of care is disappearing, a loss to GPs and patients alike.

I polled a group of friends and relatives where they sought healthcare advice. The general approach seems to be to consider what issue to address, then to speak to friends and relatives first, perhaps supplemented by google. Only about half of these discussions led to a GP being involved at all, and any outcomes were further reviewed with relatives and friends. Clinically trained relatives, and those with the same condition, were the favoured sources of advice and discussion.

I asked these same friends and relatives about whether they usually saw the same GP, and whether they trusted their GPs. None of them could say who their GP was, or saw the same GP each time. Only half of them said they trusted their GP. I will quote one perspicacious reply:

‘ I trust them not to act maliciously, but I don’t trust them to think specifically about nuance or care beyond the superficial.’

How telling. The erosion of continuity of care has eroded trust and understanding, nuance and personalised medicine. Increasingly available and more complex information makes it harder to discriminate and evaluate the reliability of the information, how much weight to give it and whether it applies. Without trust from a wise navigator, where is realistic medicine? How do people without a clinically qualified relative cope? If General Practice has been reduced to a ‘painting by numbers’ service, how can personalised choices be considered?

What is ‘Realistic Medicine’ ?

All around the world, health care systems are talking about realistic medicine in some form or another. The words are not the same, but there is a common theme. In Canada, and in the UK, the movement is called ‘Choosing Wisely’ and in Wales, the conversation is about ‘Prudent Healthcare’. The ‘Choosing Wisely’ movement started in 2012, and is now internationally relevent, with over thirty countries and eighty specialist organisations engaged in the initiative.

At the heart of this new era in modern health care is the key idea that, just because we can do something, doesn’t mean it is right, ethical or reasonable to do it. Moreover, the goals of care for any particular patient should be the key priority against which any course of action should be measured.

Patients need trusted information that helps them understand that more care, more technical and intensive investigations and treatments are not always better. Some tests and treatments do not necessarily lead to improved health, or achieve what matters to them.

A patient’s tale. Mr M is a fictional patient on a remote island in the Hebrides. He is 84 and lives in the home he was brought up in. He is quite lonely; many of his generation have died in recent years, and surviving friends are generally not fit to drive, in residential care or in poor health. He has advanced prostate cancer, chronic kidney disease and poor mobility due to painful osteoarthritis. He is frightened of dying away from his people. When he develops urosepsis, he is admitted to the community hospital a few miles away.

Should he be flown by air ambulance to a bigger hospital where he can be treated with gentamicin, and cared for in a high dependency unit? This level of care cannot be provided in the community hospital. Or should he be managed by a GP without gentamicin?

Mr M’s goal is not to leave the island for health care, as he would prefer to die locally, so the decisions about care are about meeting this goal. The GP, the lead nurse and Mr M discuss his goals, and then the risks and benefits of treatment options. He survives this infection, and his goals are recorded in his clinical record. He is relieved that his fears are acknowledged and heeded, and he feels supported in his decision.

This movement requires excellent communication with patients and the public, so that they can be fully engaged in decisions about their care, and empowered to set the goals of that care. These conversations can be intense, personal and emotional, if they are to be really meaningful.

This does not just change individual discussions between one clinican and a patient, it informs the mindset of the whole healthcare system. Public involvement in this discussion is growing. Some national consumer groups, patient organisations and disease-specific groups are adopting these ideas, so that patients feel empowered to begin the conversation with their clinicians.

Realistic medicine should be a core part of health literacy, whatever you call it. As equal partners, doctors and patients can both ask for and engage in these conversations, however intense they are, because they are a fundamental part of providing good health care.

Words that disempower patients

Five years at medical school taught me the words that we use to describe medical concepts. Many of the terms are based in Latin or Greek, harking back over the centuries to the beginnings of medical schools.

Linguistic determinism is a concept that says that the language you use shapes the way that you think. The words we choose can change the way we limit and frame understanding, knowledge and ideas, and alter memory, categorisation, and perception. It is no surprise, then, that it affects the relationship between doctors and patients.

I have kept an article from the British Medical Journal from April 2022 to reread. It discusses the use of medical language. The authors state that the medical profession, in using elitist and outdated language, ‘casts doubt, belittles or blames patients, and jeopardises the therapeutic relationship…’

Using language in a way that disempowers patients is endemic. I’m sure, as a younger doctor, and copying the phrases of my senior colleagues, it helped me overcome imposter syndrome. This sort of language is pervasive, and using it makes you ‘one of the team’.

One example describes the situation where the clinician is struggling to make sense of the patient’s story within the clinician’s attention span. The patient is described as being ‘a poor historian’ when their narrative account of their symptoms does not meet the expectations of the clinician. It is the clinician’s duty to listen, to understand their story, concerns and expectations. Our skill as doctors, nurses, or other health professionals, is to ask the right questions, to listen carefully and to recount the clinical history accurately.

Other examples, with alternative words:

  • Presenting complaint – reason for attendance – ‘complain’ has negative connotations.
  • Ceiling of care – goals of care – ‘ceiling’ implies a limit to the treatment on offer.
  • Not compliant – this phrase is used when the patient did not follow instructions, but there is usually no mention as to whether the patient had agreed to the initial plan. We could write ‘barriers to adherence include …’
  • Did not attend – barriers to attendance – some patients really struggle with transport, mental health, organisational skills; by identifying the barriers, we can help patients access care.
  • Patient claims – patient reports – ‘claim’ implies that the patient is not being truthful.
  • Patient denies – patient did not experience – ‘deny’ implies a lack of truthfulness, of withholding information.
  • Patient refused – patient declined
  • ‘Has the patient been consented?’ – in this example, the patient is a passive recipient of information, no record of what the patient has understood and retained about a procedure.
  • Substance abuse – has a substance use disorder – the first phrase is associated with patient blame.

Patients can report feeling child-like in clinical settings. For example in a diabetic setting, blood sugars can be ‘good’; does the opposite imply that the patient has been naughty and bad? Some patients recount feeling as if they have been scolded for their poor outcomes, or ‘treatment failure’.

Every so often, I come across another phrase that is part of routine clinical discussion, and discover a more human, collaborative way of putting my view across. I hope to find ways of validating the patient experience, and allowing patients the opportunity to collaborate in creating their care plans.

The key messages from the article:

  • Some commonly used language in healthcare characterises patients as petulant, passive, or blames them for poor outcomes.
  • Such language negatively affects patient-provider relationships and is outdated.
  • Clinicians should consider how their language affects attitudes and change as necessary.
  • Changing our language to improve trust and support shared decision-making is unlikely to harm patients.
  • Better use of language may help us to reach more patient-centred and realistic care plans.

How does this relate to realistic medicine? The core of this is patient choice, and it is for us to communicate well, so that the patient can make this choice well-informed.

Linguistic determinism https://en.wikipedia.org/wiki/Linguistic_determinism – The concept that language and grammar affect the way we limit and frame understanding, knowledge and thought, for example, memory, categorisation, and perception.

The article by Caitríona Cox and Zoë Fritz was published in the BMJ on 30th April 2022, (you can read it here: https://www.bmj.com/content/377/bmj-2021-066720)

Realistic medicine saves the planet? Sustainability, environment and health

I am Dr Kate Dawson, one of the GPs at Benbecula Medical Practice in the Outer Hebrides. I have been working here since 1990, with three short breaks to complete some training, and when I had my babies, who are now grown up. We are lucky to live in a beautiful and precious place, which is generally safe and kind. I love gardening, knitting, and observing our wildlife when I am out walking.


Our islands, though, are very vulnerable to change. Global warming is bringing unpredictable weather, and rising sea levels will change our coastlines. It is getting more difficult to recruit staff, and travel links are not as good as they were a few years ago.


In the face of this, I have been considering the sustainability of the healthcare system that I am part of, and how we can make positive changes that will help our patients achieve better health, and at the same time, reducing our impact on resources. I dived in to think about this in more detail in the last year and found more than I thought possible.


What does sustainability and the environment mean in terms of health care? Here are some of the ideas that may affect patients directly. Some items will not surprise you, others might.

  • Patient transport. This includes trying to use active transport such as walking and cycling, using electric bikes and electric cars. This can be hard when distances are long, and our roads are narrow. However, this also includes trying to avoid travel to appointments when a phone call or video link would be as effective.
  • Waste management: Unused medication should be returned to the surgery for safe disposal, so it does not cause environmental contamination. You can also help by only ordering what you need when ordering repeat prescriptions. Empty inhalers and insulin pens should be returned to the surgery. Incinerating empty inhalers causes less damage than the gas in the inhaler being left in the environment.
  • Better prescribing: As an example, inhalers have a particularly detrimental effect on the environment. One MDI inhaler is as damaging as a drive to Inverness, whereas one breath-activated inhaler is equivalent of a drive between Griminish and Balivanich. Unnecessary and ineffective medication is a waste too. Don’t cut down on your inhalers, get advice about managing your asthma more effectively, use your preventer more, and ask to try a switch to breath activated inhalers.
  • Better decisions: Better discussions about treatment and referral help patients and doctors make better decisions. If you are referred for a treatment that you Don’t really want, or which may not benefit you much, then it is far better to discuss this before the travel, prescribing, tests and worry begin. It begins with talking frankly to your GP about the benefits, risks, and alternatives to the proposed treatment, and to ask what would happen if you did not seek treatment. Take someone with you if you need support with these discussions.
  • Good health is more than medication: Our current medical model from the twentieth century has been about patients coming to the doctors, their ailments quickly assessed, and a treatment or procedure prescribed. With authoritarian health care, the patient can become a passive recipient of medical care, and every ailment is met with a treatment or a procedure. There may be another healthier, less wasteful, more sustainable way.

Imagine this; you can improve your appearance, reduce your need for medication, your reliance on health care, improve your energy levels and joy in life, the benefits will last for years, and the cost is minimal. I am really excited with the possibilities. What is the secret? What if everyone could do this, it would reduce reliance on health care resources, and we would live to enjoy health into our retirement. I am talking about improving health by improving fitness.


As an example, the most cost-effective treatments for Chronic Airways Disease (COPD) are physical activity, smoking cessation, and flu immunisation. These three things are associated with better outcomes than any inhaler or medication.


I am using the word ‘fitness’ for a good reason, as it covers lots of concepts. It does not focus specifically on weight, or exercise, or smoking, or alcohol. It just focuses on being healthier. Where should you start? The beginning is to think about what you want to improve, to imagine what your goal is, what is driving you to consider making a change. Give yourself permission to write down or say aloud what you want to change, what could be better. Perhaps you want to be less short of breath, or your knees to hurt less, or to feel less lonely. Your goal will inspire you to keep trying. You could list all the things you might want to change and work out what you need to do for each thing.


Don’t try to change everything all at once. It is better to focus on one easy thing at a time and make it about fitness and fun. This year, for example, I plan to go for a walk at least once a week. If I miss a week, I have given myself permission to try again the next week, and not to give up when I fail. Last year, we started using smaller plates to reduce our portion sizes without cutting out our favourite foods. You Don’t need Lycra, or to run, or to go on an extreme diet, just find one thing that you can do, that you can enjoy, and make that into a habit that you can sustain.


Who are your allies? Have you got a trusted friend to talk to? A professional such as a physiotherapist, counsellor, nurse, or doctor could listen and support you, if you asked for this; the most important thing is to find someone who can listen to you. They may help you work out what you might be able to do next, to identify one thing that you can do easily, and to support you too.
Your one change may bring more benefits than you think. Going for a short walk will improve your fitness, and it will also raise your mood, reduce isolation, and ease joint pain. Meeting up with someone else for an activity such as knitting or singing will improve your mental agility, and will also reduce isolation, low mood, and loneliness.


As you start to improve your health, you may inspire others. We could have a new normal, in which we support each other to take steps to improve our health through simple changes to our lifestyles, reducing our reliance on medication and leading more fulfilling and joyful lives. We can help the environment and the NHS stay sustainable by creating our own better health.


For ideas, why not listen to Michael Mosley’s podcast ‘just one thing’ on BBC sounds.
https://www.bbc.co.uk/programmes/p09by3yy/episodes/downloads

Discussing life goals

https://doi.org/10.1136/bmj.l6018 (Published 13 November 2019)

I’m writing to highlight another article in the BMJ written by a patient about goal setting. The article is very simple, about a patient raising the issue of taking up running in an asthma review. It is also very deep, and considers the difficulty of breaking into the nurse’s routine review to raise the issue.

The Quality and Outcomes Framework included many items on a checklist to cover in an asthma review, and even though we are post-QOF in Scotland, we are still using our QOF template.

Some of the suggestions for patient participation made by the article are already in use. For example our asthma nurse makes good use of the self-assessment tools on the Asthma UK website.

I think that the real challenge to our practice is to encourage patients to set their own agenda before their appointment, and to make that appointment a space where the patient’s goals are at the forefront. I plan to take the article in to our practice as part of our preparation for ‘House of Care’

As the patient writing the article says: ‘These appointment had never felt like a two way conversation where I had the space to ask as well as answer questions’. What a wake-up call to all of us who run chronic disease management clinics. This patient felt apologetic raising her goals at the consultation, and this was done at the end of the time with the nurse.

I felt so strongly that the patient goals should be the first, biggest thing about chronic disease management reviews that I took the article in to work, and gave it to our LTC nurses to read. We need to come up with a new language and way of that invites these conversations, that creates this teamwork between clinician and patient naturally.

Citizens’ juries

2016 – the year I went to the International Forum of Quality and Safety in Healthcare in Gothenburg. There were many memorable moments. It inspired a passion in me for showcasing quality improvement in primary care and in Scotland. These ambitions are still to be realised.

It also took me to Jönköping where I visited Qulturum, an amazing resource for bringing healthcare improvement ideas into practice. Here is where I first saw a description of a citizen’s jury, and a reasoned explanation for why they are valuable.

Before this, I had only seen single patients being asked about single issues. These lone lay people have attended meetings, to represent all patients, all demographics, all ethnographic minorities, and orientations. The agenda has been set by the medical establishment, and the lay person has been, at best, a commentator. Their participation has allowed organisations to tick the box on patient participation.

A Citizen’s jury changes this. First of all, a group of people get to debate the issues. This gets around the need for one person to represent all demographics. Secondly, this is more than a poll. The jury is provided with facts, as well as well reasoned and possibly opposing expert opinions. Members of the jury develop knowledge about a specific policy area. They may call expert witnesses to present evidence relevant to the issue being explored. Their viewpoint is therefore both independent and well-informed, and not fixed to one demographic.

The BMJ published an analytical article examining how citizens’ juries can review current medical practice. The article looks at the role of these juries in evaluating acceptability and legitimacy of screening policies. Relevant examples are provided.

References:

How shared decision making cuts costs – a worked example.

I read with interest about Bernhoven Hospital in the British Medical Journal last year. The description of the ethos of the hospital is a good fit for what I aspire to in the provision of care in our community hospital. The beautiful idea is that ‘good healthcare starts with a good conversation – in this hospital we decide together’.

To read the original feature article: https://doi.org/10.1136/bmj.l5900 

The hospital, like many others in Holland, was trying to manage rising costs, but instead of cutting services, it aimed to reduce unnecessary interventions by focusing on patient-centred care and management of risk.

The article includes flowery imagery and the pictures of the beautiful wild flowers around the hospital, and the tone of the writing implies a hospital nirvana. The vignettes of two patients give us a little more insight of how they have pursued this agenda; it is a highly complex system, which has taken years to grow and will continue to evolve.

One thing that really caught my attention is that they started with a vision, which they have stated clearly. The medical director and his team set out to create a climate in which their vision could thrive.

Examples include good access to senior decision support and a suite of decision-making tools. They stopped paying clinicians for procedures done, and provided a fixed salary instead. They included medical staff as hospital directors, and patients as shareholders. They added telemonitoring, and online support, and gave patients more control over their follow-up arrangements. They rolled consultant clinics out to the community and built better multidisciplinary teams with allied health professionals. They set up weekly brainstorming sessions that didn’t just involve the interface between primary and secondary care; they included patients as well.

Lead by the vision, instead of focusing on the cost of components, they have taken a leap of faith. Looking at patient-centred care as an ethos has bought best value to patients and to the health care service.

When I read this article, I recognised with joy many of the values I hold myself; that patient-centred care and shared decision making is a core attribute of a successful health care system.

Our community hospital and our GP practice incorporate this style of work, but it is not up-front and in our faces. We do not explicitly reference this cornerstone with every new change in care provision. I have no clear idea where patient-centred care sits within our NHS board – the stated aim is ‘The best at what we do’ – which is not that specific.

This is a complex and evolving process, not one that can he copied and emulated with ease. I would love to go on a study visit to see how this works, perhaps with some senior managers from our own health-board.

The brand of Realistic Medicine in Scotland seems to be forging along the same path. The annual report published in April 2019 is called Personalising Realistic Medicine. It sets an expectation that the NHS in Scotland will engage clinicians, managers and patients in the redesign of services, enabling the delivery of realistic, patient-centred, therapeutic goals.

This worked example shows that putting values ahead of cost has lead to better patient experience, and that has turned out to be financially prudent.

The power of patients, five ways.

Our clinical work is about patients. In each consultation, we are a team of two, doctor and patient, collaborating on the solution to their clinical problem. Our services are organised to make best use of our clinical resources within the practice, the skills of our team members and the consulting space we are allocated.

However, our services could also be organised to make better use of the resources that patients bring with them. At the start of 2020, I am reflecting on five main areas where our patients have shown how they can shape the provision of health care. In 2019, our patients helped as research subjects, campaigned for new services, got involved in consultation and service design, helped to teach the next generation of doctors, and used their stories to help others access care.

Please note that I have got the permission of any patients mentioned in this article, and their contributions to health care are already in the public domain. Bear in mind that our practice only has 2,300 patients on average; for a small practice this is a high level of participation.

TEACHING

I’d like to thank all of our patients who have helped to teach the next generation of general practitioners. During the year, you have talked to school pupils, undergraduates, broad-based trainees and General Practice trainees, all of whom wanted to find out about the delivery of medical care in remote and rural areas. You have treated them with kindness and respect, and trusted them.

SERVICE DESIGN

This year, we have been extending the use of a program called ‘Attend Anywhere’ which allows patients to be seen on a videolink. We haven’t yet fully realised the possibilities of the software, but we have supported patients to access clinics on the mainland when they have been too unwell to travel. Several patients have collaborated in writing an information leaflet to support this. Even better would be a short video that we could play to patients; watch this space.

PARTICIPATING IN CLINICAL TRIALS

David wrote his own account of participating in a stent trial, and has provided evidence of his improved health; a photo from the top of Ben Mor. His own account is too long to be part of this article, so I’ve given him is own page. He participated in the October trial at the Golden Jubilee – and they wrote about him as well – here.

David and son, On top of the world.

He makes an important point at the end of his blog; his gratitude for good medical care was part of his motivation for participating in the trial. We all gain, our practice, our secondary care colleagues, and all of those patients who benefit from the advancement of clinical science.

HEALTH PROMOTION

On the 2nd November 2017, Shona received the devastating news she had been diagnosed with breast cancer.  On the 12th July 2018, she celebrated with her family and friends on completing her treatment. On the 1st October 2019, she shared her story online, to highlight to others the importance of checking their breasts and seeking help.

We are all influenced strongly by stories, especially when they are told by people like ourselves, people that we know and people that we trust. Shona has told her story to help others, and to support two campaigns; breast cancer awareness month, and the Scottish ‘get checked early‘ campaign.

CAMPAIGNING

SCAD, Spontaneous Coronary Artery Dissection, is a rare cause of heart attacks. It particularly affects women, and is not related to cholesterol, smoking or any of the usual risk factors. We have two patients in our practice who have been affected, and they have both been campaigning for better services in Scotland for patients with this condition.

One of our patients, Mary, has been one of the founder members of the Beat SCAD Scottish Patient Group. She has been travelling down to Glenfield Hospital in Leicester for specialist advice and follow-up after her SCAD heart attack; a long trip if your health is not the best. The Leicester clinic is currently only one of two in the UK specialising in the care of SCAD patients, and the patients support each other. The other clinic is in London.

With the aim of improving health care for Scottish patients with SCAD, Mary has represented the group and worked to raise their profile at clinical conferences and events up and down Scotland. The Scottish group aims to increase awareness of SCAD in Scotland, and is lobbying for a Scottish SCAD clinic, the development of guidance for managing SCAD in our national SIGN guidelines, as well as a national care pathway.

If you want to read more about the campaign, follow @mary_galb and @beatscaduk on Twitter.

These are just the stories I know about from 2019. I’m sure there are many more patients contributing to our National Health Service, teaching our clinicians, developing new services, participating in research trials, supporting other patients, and helping us to see what is important to them.