Growth through a chronic patients experiences

Understanding a chronic patient’s experience…

Healthcare professionals have a duty of care to each patient, client, individual we see. We are taught to listen, understand, and problem-solve, all in the best interest of the individual. We all want to see our patient ‘get better’, ‘progress’, ‘recover’. Sometimes we get lost in these words and don’t take the time to support the people who may just want to live their best life, whatever that means to them. As much we set out with the individual’s best interest at heart, at times we can be biased in our approach and treatment plan. This can simply be because we do not take the time to understand, are struggling to balance pressures of service in regard to efficiency, and others don’t care enough to research, understand, and listen.
I started my placement with Jo fairly blinkered to the experience’s person with chronic illness in particular have. I say fairly, because I have gained second-hand knowledge and understand from family members who experience chronic issues. However, I was still quite tunnel visioned, never thought more of it in relation to my career and role as a physiotherapist. Being able to work with a client group of that calibre, hearing and understanding their experiences with healthcare has highly impacted the way I see my duty of care. Thus I think it is important we all seek to understand ‘a chronic patient’s experience.’


They have been gracious enough to share their stories with me, the good, the bad, the pretty and the ugly. Being a student, the way I practice starts from here. A lot of the experiences I have heard in the six weeks have somewhat broken me. In more than one case, it is evident a lot of trauma and issues could have been prevented if just one healthcare professional (HCP) took the time to treat the person rather than the illness/condition.

I have been empowered to be different, by my university link tutors who have somewhat seen the process, my educator who through her own personal experience has chosen to be better and also by patients who strongly encouraged the same. To persons who have a long-term/chronic condition, having a HCP who understands their journey and experiences, and are willing to explore symptom causes deeper than surface level is more validating than the ‘average’ person can comprehend.

This blog is a start, and aims to inform students like me, in ways we can be different and change the narrative. However, the more seasoned professionals also need to know as it’s never too late to adapt or change the way we practice. This takes into account the concept of Curious Enquiry which starts by recognising that we must first acknowledge a potential weakness in a student capacity or qualified professional position. Even the smartest person in the room needs to be partially ignorant and accept that others in the team can possess a different perspective or information set. According to Ed Schein (2013), this we must become temporarily dependent and vulnerable. This blog also includes questions I have asked myself and questions any one person can reflect on.

Where have we gone wrong?

Consider this individual and their feelings when majority of their experience has been negative. What is their expectation of future professionals?

Experience 1 – Part 1

One individual noted their journey dated back to 2001. After having spinal fusion surgery, the individual was discharged home after three weeks to a young child, unable to walk and with no further help. About 9 years later she was admitted again with bacterial meningitis and spent two weeks in a coma. For some reason she felt very anxious around some nurses. She heard them say ugly things whilst laid there unable to walk and heavily medicated.

In the last 12 months, this individual tested positive for CSF and got it drained after being dismissed by their consultant 5 years prior when suggesting a CSF issue. The consultant poorly communicated what after care should’ve been like and individual was left with the consultant’s secretary as a point of contact. CSF started leaking again, the secretary was unreachable. After eventually getting a private consultation, the consultant’s comment was the individual ‘must have slipped through the net’.

At this point it is necessary to acknowledge how the patient must feel. I imagine a debilitated, exhausting feeling cushioned with a lack of trust in people you should put all faith in to help to you feel sane. This can cause stress which can play on one’s mental and psychological health. Although the impact of stress varies enormously. People usually experience stress in relation to something negative. Stress can cause physical symptoms such as stiffness, tremors, abdominal pain, headaches, and difficulty sleeping. These in turn can affect one’s mental health leading to aggressive behaviours, depression, increased alcohol consumption, tendency to radicalism and uncontrolled food intake amongst other issues.

Experience 1 – Part 2

Continuing, the same individual was implanted with an MRI non-compatible spinal cord stimulator in their spine in 2018. January 2020 when the implant needed programming, they noted this was impossible, but they were not going to remove it. As a person with spinal issues, who may need further scans, it would have been logical to implant a more appropriate device.

After being told they were on the waiting list to do a revision surgery three times in 2020, about 15 months later, they discovered they’re not on the list. In fact, the consultant forgot the individual needed to be on the waiting list and get her device changed. The individual noted “I have no idea if I am on the list or not!  My other consultant is waiting to do an MRI for the last year.  It feels like I just go round in circles with the NHS and have been on this journey regarding my spinal issues for the last twenty years.”

As mentioned before this is stressful, and stress eventually plays its part in behaviour and psychology. 61% of adults who felt stressed reported feeling anxious whilst 51% reported depression. Of the people who noted they felt stressed at some point in their lives, 16% self-harmed and 32% had suicidal thoughts. Physical problems can also occur such as digestive problems, nausea and hyperventilation amongst other things.

Does disability, chronic issues or conditions have a specific look?

Experience 2

Persons with long-term conditions and disabilities can face disbelief, patronising attitudes and advice and prejudice based on appearance that particular day.

For example, one individual noted whilst walking and wearing make-up she has had her prescriptions questioned, this has never happened whilst in her wheelchair.

This same individual sent a detailed self-referral to physiotherapy due to increased subluxations and pain. She received a list of back pain myths including ‘joints don’t really pop out’, advice on ibuprofen and paracetamol for pain and exercises which she has been doing for the last 6 years. She has been diagnosed with hypermobile Ehlers Danlos Syndrome and to manage her pain which she noted in the self-referral, she takes much higher strength NSAID than ibuprofen, paracetamol, and tramadol.

At times sharing these stories of poor care and inappropriate treatment is how persons with long-term/chronic conditions learn amongst themselves. It helps reduce those invalidated feelings which can build up after negative experiences with healthcare. It is a community; learning from each other and aim to share with healthcare professionals who would listen. Expert patients-experts in their conditions as they live with it day-in, day-out. They aren’t invalidating our qualification with their insight, being willing to learn is everything.

Persons with chronic conditions/issues are at times accused of drug seeking and mental health care by professionals who don’t know or understand. They are labelled if they are ‘defensive’ or ‘uncooperative’; another person has mentioned ‘aggressive’ is now on her record for simply being passionate about her extensive experience and condition during a GP appointment. So, would other professionals be willing to listen to her after seeing this?

On a more positive note..

However, not everyone has negative stories and experiences. There are professionals who work differently, taking time off to get to know their patient and build rapport.

Experience 3

One person noted a particular physiotherapist in her journey took time to understand the nature her disability. This physiotherapist understood the patient’s view of maintenance and reducing the rate of deterioration rather than improvement and progress. The physiotherapist supported them in developing a personalised exercise plan, specially adapted to suit their muscle weakness and wastage. The individual noted, “She took the time to explain importance of core muscles in reducing my falls and maintaining my overall wellbeing.”

This clinician understood ‘one size doesn’t fit all’, and suggested services the individual could assess after. Pilates became part of the routine for approximately 5 years based on advice given, and was largely beneficial.

How does the positive experience affect her future contact with professionals? Putting patients at the centre of care, by first actively listening creates a path for excellent patient experience.

Experience 4

Another writer, spoke about the experience with her six-year-old son.
“All services have been fantastic when you see them, and you need to make the most of every appointment…” She mentioned although the waiting lists can be long and discharge process is quick, the physiotherapist got him into standing and taking some steps before discharging. They were also the people to help get a formal hypermobility diagnosis. The Paediatricians who cared for him helped get further support. The dietician was “amazing and so supportive.” The Occupational Therapist and Physiotherapist worked holistically, went into his school to provide recommendations to help him have a more fulfilling school life. As a parent, her wish was that the physiotherapist could have worked with him longer to help him reach milestones, knowing his diagnosis and the forthcoming difficulties.

 “The absence of positive experiences and parental support can be stressful for children.” With children, as they grow, adverse experiences cause stress which builds up and eventually presents as low/reduced motivation, low optimism about life, focusing issues, difficulty problem-solving, difficulty developing good relationships with persons and problems developing a positive self-image and stable sense of self-worth whilst managing normal daily stress. Therefore, as a child, having a positive experience is just as important. A study noted childhood experiences affect family health in adulthood. Adverse experiences as a child were negatively associated with family, social and emotional health processes, and family health resources whilst positive experiences lead to a positive experience in the same domains. Hence, we play an important part in helping to build that foundation for family health in adulthood.

Experience 5

Another individual noted a positive experience that led to her diagnosis of Hypermobile Ehlers Danlos Syndrome. At 19, after seeing a physiotherapist for a specific injury, the physiotherapist noted significant hypermobility and suggested her to read into hypermobility syndromes. After discussing this condition with her GP, he acknowledged his inexperience and sent her home to return in 2 weeks. In this time, he did the necessary research and came up with a treatment plan and a specialist referral.


It takes a village…

As a healthcare professional, it is important to acknowledge our limitations. Letting patients know this, can seem like a negative because we ‘should’ know, but instead, acknowledging our weaknesses, going away and returning prepared helps build a level of trust which help creates a positive environment for patient experience.

It is not all bad. Gratitude stories like these are heard more often especially if you are blinkered and believe the system in itself is perfect; stories that can encourage improvement may not cross your path. Numerous persons with chronic conditions have told me during placement, ‘We have spoken about these issues for so long; we are now tired and can’t do it any more…’ Therefore, the more professionals who know, the more people can strive to adapt their thinking. Think about our approach and how we communicate. How do we listen… listen to reply rather than listen to understand? If as clinicians are able to look inside of what makes us the persons we are, things that feed into our preconceived thoughts, notions and judgements, we can alter the way we possibly approach each appointment.

Simply understanding the patient, rather minimising all their feelings to ‘its in your head’ or ‘you just need to…’ or ‘pain perception and pain mechanisms’ or ‘this is the way it is done, and always has been that way’, can change a person’s experience of living with their condition.

It is understandable that not everything can change as quickly as we want it to. It takes time and a village to build or adapt a system that is skewed to people who can either fully recover or have conditions that majority understand compared to persons who have invisible issues and more complex and chronic conditions.

The quicker we understand that, the less people can get pushed aside, ignored and forgotten.

About the Author

I am a student Physiotherapist from University of Brighton, currently in my final year but on my second placement.
I have always been interested in the healthcare field, studying, and enjoying the sciences at school. When I am not actively studying PT, I am support worker for people with learning disabilities and a hairdresser which was first a hobby.

In primary school, I wanted to be a doctor, until my interest in children grew and Paediatrician became my new dream job. Then this changed to nurse/paediatric nurse in secondary school/sixth form until I realised a Physiotherapist is who I wanted to be. After evaluating and comparing possible professions, I was sure this is where I could, and wanted to make a difference.

What made PT stand out amongst all the other healthcare professions?
For me, I wanted a profession where I can be active and visually see rehabilitation of individuals. At that point, I only saw PT as rehabilitation and never considered the aspect of maintaining one’s health and quality of life, whilst decreasing the rate of decline.

I’ve always wanted to make a difference in people’s life, even if it is one person. I haven’t fully figured out how yet, but I know being different in my practice is a step in the right direction.

I’ll finish my degree in summer 2022 and I am determined to make the most of every learning experience until then to be valued in this field. My aim is to be a voice and impact the minority, the persons who go unnoticed, the persons who feel ignored the most. I am very open to where my PT journey will lead but excited.

-Anntoyah Joseph-

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