Clinical · Healthcare · Insights

Copper Room with a View – Care Practice

Posted on behalf of George Aynsley (Liverpool, UK):

In my second post, I report back on the Care Practice session:


As we succumb to the digital age, recognising how it infiltrates all aspects of how we practise healthcare, being wary of the pros and cons, means we can utilise it and apply it in the patients’ best interests. But change can be a difficult thing, on both sides of the therapeutic relationship.

Dr Meyer, of Berlin University, is leaning into the winds of change, taking the reins of this petulant beast. Describing the barriers we face as;

  1. Change itself.
  2. Reduced self-determination
  3. Professional self-image.

We have long since left paternalism behind, encouraging and empowering patients to take an active role in their care. Taking care in this direction may be easier for clinicians as they have been present with the constant evolution of technology in their workplace (computerisation, online guidance, patient databases etc.), but it may not be as easy for patients if they are not tech savvy or no longer in a physically functional position to interact with this computer technology.

In terms of professional self-image; technology which may improve efficiency maybe shirked by clinicians if it doesn’t fit with ideas of their role. Dr Meyer cited that €200 Headsets made available for telephone consultations (which are arguably a necessity to reduce workload and better for one’s neck than a phone) were refused due to their call centre appearance.

The transformation in availability of data mean questions that may not be apparent to the clinician but are important to the patient are answered. Such as:

How many days does it take for the insurance company to approve my treatment?

What is the rate of insurance company rejections?

What is the average time for delivery of my aids/treatment?

How digitilastion has changed Dr Meyer’s clinic was a described as a ‘hybrid solution’, the ‘’ of ALS care. Mediated by case managers, patients can pick and choose their care using an online computer system. However, this could be considered ‘streamlining’ of patients in what tends to be a frail population. I think ALS patients represent a great candidate for this type of care, given the wealth of aids/treatments that will be required. This puts patients in the driving seat and what is important to them is not left by the wayside.

Dr Chris McDermott
Dr Chris McDermott

Head up

Your head weighs 5kg. Your neck muscles hold your face up to the world. We take for granted the simple task of looking straight ahead. Weakness in the neck means the floor may become are only vista and eye contact with the ones we love is no longer possible.

Current neck collars are not made with ALS patients in mind. Dr McDermott, hand in hand with patients, is on the pursuit of the perfect neck collar – it needs to be adaptable, individual and accessible. Not ineffective and left under the stairs.

Dr McDermott’s research into the design of an ALS specific collar was a collaborative process of technicians, designers and patients. A meeting of minds where all ideas were investigated. Patients were not research projects but driving the project. Many prototypes were tested and the end result is the Sheffield Support Snood (SSS).

16/20 participants continued to use the snood. Its limitations included it being harder to fit than other collars and having no improvement on breathing or swallowing symptoms (but neither do other collars). It does have more support, comfort and is less restrictive. It is adaptable for when weakness progresses. Being produced through a design team means that problems identified can be designed out.

This project represents a step forward in the approach to patient care and research, certainly a mascot for patient collaboration.


Contrary to what the textbooks persist in telling us, ALS is not painless. Of 87 participants in Dr Simmon’s research, 56% reported some kind of pain. Present through all stages of the disease and correlating with disease duration and decreased physical function. 80% participants believed the pain was due to ALS, around 50% said it was miserable and exhausting, whilst 20% said it was unbearable.

The average rating of pain was 3.4/10 but just because something on the whole is bearable does not mean it doesn’t impact on quality of life. Most people said their pain was manageable, non-pharmacological treatments were used commonly e.g. heat packs. Clinicians should consider pain and alternative treatments that patients find useful.

Advanced Care Planning

As healthcare professionals constantly in the presence of ALS, knowing intimately its onslaught and the undignified degradation of our basic physical functions, how best is it to approach communicating this to those diagnosed and those with a new diagnosis?

Delivering a diagnosis and discussing prognosis are crucial steps with future implications of patient wellbeing and their involvement in their disease.

Dr Seeba, of the National ALS tertiary care centre in the Netherlands (NAC), is fighting the good fight. Explaining that advanced care planning is used to help individuals reflect, identify and articulate their needs as well as preventing under and over treatment. The chasm between patient and clinician can be wide – two totally different standpoints of understanding and ideas of disease. This is reflected in her research into the discussions which take place between patients and clinicians.

The main reasons physicians cited they did not raise important topics were due to:

  • Them having too little time
  • They were uncertain of disease trajectories
  • Speaking of expected death may ‘discourage’ patients
  • Patients would not want to talk of death

From the patients’ point of view:

  • Doctors shouldn’t be troubled with these matters
  • It’s the doctors that will initiate the topics of discussion

Evidently, there is a conflict of viewpoints and I query whether what the doctors say constitute as genuine excuses. The nature of ALS is one of constant deterioration and uncertainty, with many opportunities patients feel powerless and resentful, perhaps appropriately so. Compassion is required at all stages from healthcare professionals to help patients with the emotional and psychological distress that occurs along the way. Empowerment of the patient comes in the form of arming the patient with knowledge that there may come a time when they cannot communicate their own decisions. To avoid the topic or misplace emphasis for fear of causing upset is to do harm to patient.

At the NAC, there are two initial appointments for diagnosis. Bad news is broken in the first appointment with a more detailed discussion following a ‘breathing space’ of a few weeks. This allows time for digestion of the diagnosis followed by a chance to resolve any misunderstanding.

Patients are then seen ritually every three months by a rehabilitative physician where an agenda is set each time. These topics are troublesome but unavoidable for patients. It is up to the physician to take the initiative to empower patients to become experts.

In the face of increasing disability and death, knowledge and preparation are invaluable. Dr Seeba has shown that holding hands with the patient throughout the ordeal guiding patients to make their own uncomfortable decisions is paramount.