Category: A patient writes

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.

What the doctor learned

This needs no commentary – just worth reading about the work of being a patient and managing a disease.

https://www.shinecancersupport.org/programmes/read-blog

Control: What is in a name?

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

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’.

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