Honesty and uncertainty: A patient writes.

https://doi.org/10.1136/bmj.l6803 (Published 08 January 2020)

I have many experiences of managing uncertainty about the clinical explanation for the patient’s illness. Many of these patients get referred on to a consultant clinic, further investigations and expertise bring some sense of narrative or explanation, a plan is set out and treatment is recommended.

Sometimes, this doesn’t go well. The tests show nothing, the specialists discharge the patient without a diagnosis, suggesting another specialism. The patient ends up waiting for another referral, another test, another GP is consulted for new avenues to explore.The burden of worry grows, the burden of investigation, of waiting and of ineffective treatment gets heavier and larger.

Many of these patients have symptoms that appear to be neurological in origin. They impair function, such as mobility, use of a limb, speech, concentration, and stamina. These symptoms get labelled as functional disorders.

This patient writes powerfully about how two clinical teams approached his illness. The first team diagnosed a functional neurological disorder. It is an answer that describes the clinical picture, but provided the patient with no explanation for why he was ill, or what should be done about it.

The second team admitted that they did not know what was wrong, and this allowed the patient and clinical team to discuss the management of uncertainty. To quote the article ‘Although I was no closer to an actual diagnosis, I finally thought that my symptoms were being taken seriously. I felt reassured that a team … was working alongside me during my struggle with an unknown condition, and that … I was no longer facing this uncertainly alone.’

I thought of a young patient that I saw in the last decade, with a similar tale. They had a long and difficult journey with a mysterious illness, many tests and clinics, tears and anger, long waits for investigations, more appointments. The clinical journey was terrible. The amount of resources expended in that time seemed increasingly futile and burdensome. At what point could we have the ‘I don’t know’ conversation? I’m sure the number of referrals and investigations caused psychological harm as well as physical distress.

Eventually, after another second opinion, a consultant and the patient achieved a sense of teamwork. Instead of trying to create a clever label, they agreed that all possible investigations had revealed nothing treatable.

The big learning point from this point of view, and from our own case, is that sharing uncertainty with the patient, whilst acknowledging the severity of symptoms, can be very supportive for the patient. It can also allow for a more realistic approach to finding a path through the uncertainty.

For readers who want to find out more about functional neurological conditions, I recommend ‘It’s all in your head’ by Suzanne O’Sullivan. Written by a neurologist, it explores the difficult area of neurological symptomatology where there is no detectable physical cause.

https://doi.org/10.1136/bmj.l5918 (Published 15 October 2019) is a good partner article, where a doctor shares his experience of using the words ‘I don’t know’.

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.

Indication prescribing

I’ve discovered a way of doing things that improves patients understanding of their medication, and it is so simple I can’t believe I didn’t always do it before.

Actually, I lie. I was already doing it sometimes, I just hadn’t named what I did, or thought about it.

When I prescribe paracetamol, it has been fairly normal for me to write ‘take two tablets four times a day for pain’. It is the same for most of the PRN medications I prescribe. However, for all routine medications, the directions say how, but not why to take the medication.

I changed that in 2019. When I review medications, I add the indication to the prescription. The whole practice including our attached pharmacist will start using this as the new standard. For Amlodipine, for example, the directions say ‘take one in the morning to lower blood pressure’. How simple it is to do that. We can program the new directions in as short-cuts too. We’ve not been completely reliable, but it is becoming a normal way of working.

Hopefully, this small step has added a smidge more information to patient-centred discussions and decisions about medication. Maybe a bit naive, some people will always take the four white tablets in the morning without question. Some other people will play a random game, like the woman who just put all her medication in a bowl like mint imperials, and took some every day.

Now, patients will have an easy opportunity to recall why they take their medication, as well has what that medication is. More information, better discussions, more patient-centred, realistic decisions.

A patient writes about participating in a clinical trial.

I was extremely fortunate that a chance comment about breathlessness to my GP following a walk up North Lee, quickly lead to some tests and a consultation with consultant cardiologist Dr. Stuart Watkins at the Golden Jubilee Hospital in Glasgow.

After a preliminary scan, I was diagnosed with restricted coronary arteries and required three stents, two of which were joined at a ‘Y’ shaped branch. This is a slightly more complicated procedure, and whilst he was explaining this to me, Dr. Watkins said that my case might be suitable to be included in a medical trial called ‘October’.

One’s first reaction when you have had a relatively serious medical diagnosis is that you just want to have the normal procedure as soon as possible and, in truth, the idea of being part of what sounds like a medical experiment is difficult to contemplate.  However, on a closer read through the information, and discussions with both my GP in person, and Dr. Watkins by phone, it was clear that the trial was not about a new type of stent or a new method of inserting them, but a different way of imaging the procedure as it was under way.  This new technology is believed to be particularly helpful in more complex Y branch stent procedures.  Thus reassured, I agreed to take part. 

When I arrived on the ward it felt a bit like being treated as a VIP.  Not only did I have all the normal high quality care and attention one would expect from the nursing staff, but I had a second nursing team working on the trial looking after me too!  The senior trial nurse explained to me that I was the first patient to be on the October trial at the Golden Jubilee, although many other patients had been involved in other similar trials using the new imaging technology all over the world.  Also that the trial was ‘randomised’, with patients being selected by a computer programme when the procedure was already under way.

Catheter labs are very busy high tech places with what seems to the patient to be masses of staff and equipment, and the trial adds to both staff and equipment so makes it even busier.  As the moment approached for the new imaging equipment to be turned on, the trial nurse started the randomising computer programme running, and a few seconds later she announced that I hadn’t been selected!  So my procedure was then finished in the normal way.  As soon as it was completed, Dr Watkins reassured me that because the arteries were at the front of my heart they were easily visible using the standard imaging technique anyway, and that he was very pleased with the results.

Afterwards, as I was patient ‘no 1’ on the trial, Dr Watkins and the senior trial nurse came to the ward and we had our photo taken for the hospital magazine.  The trial nurse contacts me every few months to check I’m OK and will do so yearly for the next 10 years.

My recovery was incredibly quick.  I was able to start taking short walks after a few days of taking it easy and headed up Rueval after around 6 weeks – accompanied by my District Nurse sister.  Then in the summer I walked up Eaval with our younger son Joe, feeling absolutely back to normal in terms of fitness.  Now I walk our dog twice a day for an hour and also go swimming once a week.

My recovery has been monitored by the Uist Cardiac Nurse and I’m just about to attend my final clinic.  She says I’m a model patient, but I take a different view.  In the Golden Jubilee ward I was surrounded by patients who had suffered much more serious cardiac problems, so I feel I’ve been incredibly fortunate to live on Uist and experience such fantastic medical care which has allowed me to return to my normal life.  I will always be grateful for this, and participating in the ‘October’ trial and hopefully benefiting medical science in a small way in the process, is as good a way as any of saying thank you.

At the top of Eaval in North Uist

Preparing for the Benbecula House of Care

We are preparing for a new way of working in our practice. The idea is that we take what we do, and we supercharge it. Some of it sounds quite obvious.

Take the review of chronic diseases. At the moment, patients get called in for a pre-appointment check, then come back to see the nurse practitioner for a review of their condition.

The change is quite simple and also completely revolutionary. After the pre-appointment check, the patient is sent an update on their health, including any important areas to discuss, and space for them to consider what the key issues are for them. When they come to meet the nurse practitioner, the patient gets to choose which aspect of their health is most important for review, and for choosing which goals to set for the year ahead.

One of the key steps is how we reframe the review appointments. I personally believe that this is crucial: if we as a practice don’t understand and embrace this step, then all of the other changes are not going to be fully effective. This is the goal, the inspiring change.

I was very pleased to come across an article in the British Journal of General Practice: Setting goals with patients living with multimorbidity. Even the title is great – the goals are set with the patients, and they are the ones who are living with multimorbidity. The full article is in depth, and qualitative. The authors analyised 10 hours of VC to determine how goal setting is done. They describe ‘bearing witness’ to the patients goals. They conclude that this process requires a lot of time and energy from both parties, and it worked best when both GP and patient were prepared in advance.

I’m keeping that summary in mind, both for when we attend our training in Harris, and for when I prepare the staff-room QI noticeboard.

Planning good health with patients

I’m just getting myself into the right frame of mind for the training we are going to do for our Benbecula House of Care project. I’ve also been stockpiling journals with articles that have caught my eye, and there has been a theme. Many of them are about empowering patients, and dealing with clinical complexity.

One of the articles stood out for me tonight. It discusses how we help patients lose weight. Much of the article covers change theory, identifying motivators for change, setting goals, signposting and support.

In the top right of the third page was the most interesting bit of all: a bubble diagram. How simple, how powerful, for the patient to set out what they wish to focus on.

Bubble diagrams can be used to help patients decide what to discuss. Blank bubbles allow people to tailor the topics to meet their own needs.

There are loads of bubble templates on the internet, in the shape of trees, or networks, beautifully designed and probably copywrited. But as you can see, a pen and paper and an open mind are fine.

The article? It was called ‘Top Tips: talking about weight’ published in Guidelines in Practice from February 2019.

A riff on continuity of care: How it helps to personalise realistic medicine and makes patients agents of improvement.

A year ago, I worked for three days in Pollok, at the Peat Road Medical Practice. I made a fairly amateur video of my experience, but the points I made at the end still feel really important.

I can still recall the faces of the patients that I saw in those three days, and wonder what happened to them. I didn’t have the luxury of reviewing them, of speaking to the wider team over time to see how they were doing. I wondered how it felt for them, not knowing who would see them next, or who would steer them through the system to better health.

I have the luxury of having worked in the same practice for over 25 years, and even if I don’t see a patient often, I know their back story, and if they want to see me, they know I’ll be there, and that I know the local health system intimately. This long-term relationship is based on trust and shared knowledge.

A systematic review of the impact of continuity of care was published in the BMJ last year, examining the link between continuity and health outcomes. It concluded that higher levels of continuity of care are associated with lower mortality rates, no matter the clinical system or cultural boundaries.

The articles that this analysis was based on were heterogeneous, and the authors comment on how hard it was to compare themes and outcomes. This said, I would like to have seen the article also discuss whether continuity of care has an impact on choice and management of risk. My own experience tells me that when the patient and I know and trust each other, I can take conversations further, and the patient is more able to tell me what they want from their care. Continuity of care can give us the freedom to decide to do nothing. It empowers patients to set their own health agenda.

My theory: Continuity of care promotes realistic medicine. It supports patient-centred discussions, and coaches patients into being the best advocates for their own health. On a large scale, it supports effective health care, and drives improvement by taking the needs of patients to design better systems.

Ward rounds and relatives.

The Uist and Barra Hospital is a small community hospital in the Outer Hebrides, providing in-patient care to a population of just under five thousand. The population has a high proportion of older people with multimorbidity and emerging frailty.

Around five years ago, the hospital was struggling with increasing admissions of older people with complex needs. Every week, there were challenges discharging patients safely, and the process of getting patients fit for discharge was slow.

We responded by making a number of changes to the running of the ward, aiming to identify and act on functional problems early in the admission process. The nursing team were also keen to relax the visiting hours for patients, and we looked at ‘John’s Campaign’ as a model for involving carers on the ward if they wished.

After a slow start, the concept of open visiting started to bed in. For example, one patient with dementia started eating better when her usual family member helped her at mealtimes. Another patient was able to have a ‘film night’ with her daughters for her birthday.

One of the barriers at the start was disruption to the ward round. Waiting for family members to leave the room to allow clinical review, or coming back after the round to see patients who had been busy with visitors, meant the round was getting longer and inefficient.

Around the same time, I started testing a structured ward round approach, with one of the checks being to ask the nurse and the patient what their key concerns were. Patients started asking if their relatives could come back in for particular discussions, and the culture started to shift towards a more patient-focussed ward round in which relatives could be present. Goal setting started to improve, and decisions concerning escalation and onward referral were communicated more effectively to families.

Now, relatives and carers are positively welcomed on ward rounds. Patients and families are more involved with the decisions made about care, and trust in the hospital has grown. The best way to describe how it works is with an example.

Mr A is a very frail man in his 80s. He has slowly progressive metastatic cancer, and he came in with suddenly worsening shortness of breath. On initial assessment, we thought he probably had a pulmonary embolus. When I did the ward round, his sister was present. When I came into the room and introduced myself, she got up to leave. I hesitated, and checked with Mr A whether he wanted her to stay, as I was going to discuss his results with him. He was keen for his sister to stay, because he felt that he wouldn’t remember what I had said properly, and would be unable to explain to her what was going on.

His sister was invited back into the room, and I went over the results that indicated that a pulmonary embolus was a possible cause of his breathing problems, and that the best way to check this was to fly him up to Stornoway for a CT scan. We discussed Mr A’s frailty and considered the stress and difficulty of flying up without the support of his family, against the risks of possible over- or under-treatment without the scan. We also talked about the treatment options for pulmonary embolus. Mr A was able to decide not to fly off the island, with the support of his sister. We agreed a treatment escalation plan that included his wish not to be flown away.

Mr A and his sister felt well-supported, she was able to understand the clinical dilemma, and act as an advocate for her brother. They had been able to express their concerns openly, and were fully involved in the ward round discussion about prescribing and planning further care. In addition, his sister had not needed to arrange to speak to me at a separate time. I did not have to set aside additional time to speak to relatives, or worry that further decisions might be required once more information was available.   

MAKING SENSE OF HEALTH INEQUALITIES

I attended the recent RCGP meeting that debated the role of General Practice in addressing the Health Inequalities that afflict many communities in modern Scotland. The papers presented were the product of years of reflection, effort and involvement. The debate was free-ranging and well-informed, there were many ideas to assimilate, and many questions that arose.

This is my personal reflection on the day (and yes, this is going into my appraisal portfolio).

What is deprivation? The term socio-economic deprivation refers to the lack of material benefits considered to be basic necessities in a society.

Deprivation, poverty and adverse health outcomes: The meeting discussed various aspects of deprivation, poverty and adverse health outcomes, but the relationship between the three is complex. For example, rural fuel poverty creates very real suffering, but the communities that it affects do not always suffer from lack of a supportive society, which mitigates this. Rural life expectancy is longer than might be anticipated given the compounding effects of isolation and financial difficulty, but dispersed deprivation is a lonely place, and is becoming more prevalent. Pocket deprivation is evident, but it is not so easy to compare the adverse outcomes from pocket deprivation with blanket deprivation. The three are linked, but the outcomes are not predictable. 

Austerity has had a significant impact, through the exacerbation of poverty, and the entrenchment of deprivation. It is therefore no surprise that the policy of austerity has been associated with worsening of health outcomes, especially in areas of blanket deprivation. Austerity has affected individuals in our communities through reducing their economic freedom, and it has also affected those who wish to mitigate and counter deprivation by reducing their resources and effectiveness.

Core General Practice: My experience of exchanging roles with an urban practice taught me that the core strengths of General Practice lie with Barbara Starfield’s ‘4Cs’; first Contact accessibility, Coordination, Comprehensiveness, and Continuity . They are as effective in rural and urban settings, in areas of affluence and of deprivation.

An effective partner in all primary care settings has a deep connectedness with their community, a commitment to co-ordination of the care for their population. This long-term relationship with a community and the individuals who reside within it brings benefit to everyone. This is as true of rural as it is of urban general practice. The hardest part of participating in my exchange was the feeling of being disconnected with the follow up of new clinical relationships, the inability to sustain the contact into continuity, or to affect the comprehensive nature of care, or its co-ordination.

A principal GP has ownership of the problems and solutions for the delivery of health care in their practice.

I also learned much about how the exchange practice has addressed their challenges of providing effective health care in their setting. Meeting their link worker was inspiring and I have made some lasting friendships.

A forest or a bonsai collection?

We talked about how expansion of the multidisciplinary team is part of the effort to support General Practitioners, to free their time to lead primary care. The models that the envisioned MDT is based on include projects like Govan SHIP. The link workers, pharmacy support, physio and CPN teams, treatment room teams and vaccination programs need accommodation, and the sense of membership of the team.

Underfunding these MDTs, failing to provide adequate accommodation, or resource for the IT, is a substantial risk. A tree in a small pot, with only just enough water each day, and with growth pruned to stay within the resource, is a small and contorted tree. If we want General Practice to provide a forest canopy of health resource across Scotland, we need to nurture it with strong roots, and the space and resources to grow.

Investment in the General Practice of the future must address accommodation as well as teams.

Moving forward: Tackling the hard problems

The Deep End project has shown us that tackling the hard problems, or even just one hard problem, provides benefit for all, the evidence shines a light on how we work. There is great potential for spread of good practice through the worked example. This is a model for moving forward; resourcing the right people, and giving them appropriate goals. More funding for General Practice is not just about fair pay, it is about building resource, supporting and inspiring GPs to use that resource to tackle their own hard problems.

We also need data, and we need to ask for the data that describes where we are, and can be used to show change. An important part of the way forward is to ask for information and data, and to share that unflinchingly, to create a landscape of information that can show where we have been, and where we should direct our attentions.

Heroes and pedestals: As I sat in our meeting, I heard many eminent people speak honestly about their aspirations for what General Practice can deliver. I had arrived feeling an imposter, I had not produced a paper, or had time to assimilate the many papers that arrived in the few days before the meeting. I have not been elected to a high office, nor am I an academic GP. It then struck be that if we put our heroes on too high a pedestal, they become remote, and we fail to see that we are like them, and lose the courage to believe in our own contributions.  I had been invited for a reason, because I have something to add to the conversation.

Being a GP partner fulfils my idea of myself as a clinician, and I would advocate that demonstrating and describing this fulfilment should be a beacon to the young GPs who will become the leaders in our profession in the future. We must continue the work of identifying and describing the methods whereby future General Practice can bring the best healthcare to all of Scotland’s people. We must also show that what we do is achievable and applicable everywhere. We must harness the ambitions of GPs to drive forward our agenda, the high energy of collective ambition.