This needs no commentary – just worth reading about the work of being a patient and managing a disease.
By Glenn Colquhoun, Playing God: Poems about medicine (2002)
The patient will talk.
The doctor will talk.
The doctor will listen while
the patient is talking.
The patient will listen while
the doctor is talking.
The patient will think that the doctor
knows what the doctor is talking about.
The doctor will think that the patient
knows what the patient is talking about.
The patient will think that the doctor
knows what the patient is talking about.
The doctor will think that the patient
knows what the doctor is talking about.
The doctor will be sure.
The patient will be sure.
The patient will be sure.
The doctor will be sure.
Shouldn’t hurt a bit, should it?
I earmarked this article https://doi.org/10.1136/bmj.k5017 a year ago as an important analytical piece on using a systematic approach to improve care. It spoke to me about personalising care, and systematising how that is done, and about reducing wasteful variation by targeting resources on care that met patients needs. It also spoke about communication, and assessing patient need based on conversations.
The article tackled something else too; semantics. The authors debated the meaning of the term ‘best supportive care’, and whether it is the same as palliative care. ‘Best supportive care’ is a phrase that comes back to us from MDT meetings, where patient treatment options are systematically reviewed and agreed by experts. Patients who are too unwell, or who reject, active treatment of their cancer are allocated to ‘best supportive care’. What that means, who provides it, and whether it is different to palliative care is all a moot point.
In the responses to the paper, the debate continues; will this term become a euphemism for palliative care? And who decides what best supportive care entails, and who is responsible for delivering it?
Looking at the experience of patients with newly diagnosed lung cancer in Fife, it was clear that something was not right. Patients and those around them described uncertainty about who was overseeing their care. There was a lot of variation in actual care and support provided, but this did not equate to need, and was a product of a lack of a systematic approach.
The system that the team in Fife devised based itself on realistic medicine principals.
While this plan looks only at the care of patients with lung cancer, it could be a blueprint for the development of similar services. For example, on our small patch of the Hebrides, it would be sensible to use this approach for all patients requiring best supportive care.
The plan starts with a comprehensive, patient-centred assessment of need, led by a senior clinician. In Fife, where the team started with lung cancer patients, the assessment was a senior palliative medicine clinician. In the Hebrides, we would have to cut our cloth accordingly, and this may be a cancer care lead GP, or a MacMillan nurse. Our own experience is that patients like to know which GP and MacMillan nurse is overseeing their care. One key feature of the assessment is that it is about exploring understanding, discussing implications, and evolving the conversation towards care planning and support.
The second key step in Fife was communicating with all of the professionals identified in the initial plan, including setting up a Key Information Summary. Communication is so easy to do badly, and makes such a huge difference when done well.
My own experience is that this is an iterative process, and the cycle could easily be repeated as circumstances change. The experience in Fife was that over the first three years of the project, systematic change spread through palliative care service delivery.
A treatment that lacks evidence, does not have a realistic outcome or benefit, or that is not really useful for the patient, is a resource wasted. Saving the patient from unnecessary treatment also saves resources, which can then be redirected into support. The health economics of this change in focus is mentioned, but not described; the authors mention this as a barrier to achieving change, as the savings and investments are across organisations and budgets.
Their argument is that delivering what really matters to patients enables effective clinical care without overuse of resources. We know that sounds right, even if the healthcare economics are hard to pin down.
The British Medical Journal has sporadic articles under the theme ‘what your patient is thinking. In November 2018, the article was about control, and it was written by a woman called Judith Hendley, who has diabetes.
The article shows us how language in the consulting room can reduce patients to being their condition, a diabetic, a sufferer from diabetes, an unhealthy person, whose job in life is to control the only thing of interest to the clinician, their HBA1C.
She says ‘any kind of open question that allows me to feel understood and supported and not judged for the choices I make about how I manage my condition is more helpful. For example, “How are you feeling about your diabetes at the moment?”, “What is most important to you right now?”, or “What ideas have you thought about for how you could handle that?” ‘
This is where I think we are heading when we move to ‘House of Care‘ – shifting our focus to a style of working where the patient teaches us about their condition, and we help them deal with the important issues and problems that they bring to us.
In a small community, this is probably a bit easier, as we know our patients well as individuals, but the years of QOF have made us slaves to the check-list, the need to get in our questions about control early. Time to break that mould and bring in the new.
The article includes this wise guidance:
- Listen to the language patients use and try to reflect it back to them in your observations or questions
- Take the time to find out what matters to your patients—the things that they are worrying about might not be obvious to you
- Think about the language you use when you are referring to or writing about people with diabetes or other long term conditions—would they find the language you have used empowering or disempowering?
You can read the article here: https://doi.org/10.1136/bmj.k3119
Nearly a quarter of our patients are over 65 years of age. Many of them have multiple long-term conditions; as people age, the number of conditions that afflict them increase.
Long term conditions such as chronic obstructive airways disease and diabetes don’t go away. Management, rather than cure, involves routine work to avoid exacerbation events, detect and avoid recurrence, and to mitigate – and sometimes prevent – disease progression. For each condition, there are guidelines for the best management, and these guidelines have become a yardstick to measure performance of clinical teams.
If you have many conditions, each one with guidelines, and specialist nursing teams and clinics, then the work of looking after each condition becomes considerable. For our rural patients, each trip to the surgery or hospital can be costly and hard to arrange, calling on favours from friends and family. Medications all have side effects, and monitoring with blood tests puts clinicians in judgement of the success of your labours and of your compliance.
Over the last five years, there has been discussion in the journals about how to manage this dilemma. How should we measure burden of treatment, and how should we minimise it? There are measurement tools such as PETS (Patient Experience with Treatment and Self-management) – but this has 48 questions, and is surely devised as a research tool rather than something that can be slipped into General Practice
How do we optimise the workload for patients? The answer lies in the following big ideas:
- Patient-centred rather than disease centred care.
- Good communication about risks and benefits, including the treatment burden of each intervention.
- Patient-centred goal-setting based on good communication.
It will be interesting to see how well we can move more in this direction as we contemplate ‘going live’ with House of Care this spring.
- https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5602768/ Assessing the burden of treatment (Journal of General Internal Medicine)
- www.sspc.ac.uk › media › media_484740_en Treatment burden – the Scottish School of Primary care
- BMJ 2018; 363 doi: https://doi.org/10.1136/bmj.k4065 (Published 12 October 2018) Clinical guidelines should recognise the burden of treatment on patients
- https://bmchealthservres.biomedcentral.com/articles/10.1186/1472-6963-14-281 Rethinking the patient: using Burden of Treatment Theory to understand the changing dynamics of illness
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’.
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.
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.
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.
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.
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.
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.
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.
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.
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.