They say that good things must come to an end. This week, after nearly 30 years the doctor who treated my cystic fibrosis (CF)* has retired. How did we maintain the doctor-patient relationship for so long and what does my future look like?
For most people who have the luxury of good health, having a long-term ‘relationship’ with a doctor is not something they would ever consider or want. Seeing the GP when there’s a health concern is probably the norm for the majority of folk. Even then, it’s usually a one-way interaction. The patient takes the recommended medicine and then slips back into better health and blissful ignorance.
The doctor is often more to be feared than the disease. French Proverb
Over the years, I have heard many frivolous comments like: “I don’t like hospitals!” “I cannot stand needles!” or “I don’t want to see the quack!”
Guess what? I also don’t like hospitals, needles or want to see the doctor BUT I’ve got no choice. So I just have to get on with it and make the best of a harsh situation.
When you have a life-threatening condition such as CF you don’t have the good fortune to sporadically pick and choose your medical support and relationships as they become part and parcel of everyday life. Indeed, these relationships are critical to how I manage my illness.
CF consultant physician, Doctor Ron Knight, has been my doctor for just under 30 years since my mum tracked him down in the early 1980’s. I was 12 years old and my health and lung function were stuttering under the care of non-CF specialists in my home town of Southampton. She had caught wind of Ron’s expertise and sought him out. We had our first appointment with him on 6 June 1983 – my mum’s 40th birthday and in its way – our own D-Day!
Almost 30 years. Especially within the medical world of hospitals and clinics the days are long but the years are short. That’s a long time and a lot has happened in the world since our first appointment. To give it context, when I first met Ron in June 1983:
Margaret Thatcher was the British Prime Minister,
Björn Borg retired from tennis after winning five consecutive Wimbledon championships,
The A-Team made its debut,
Irish racehorse Shergar was kidnapped,
Lotus 1-2-3 (spreadsheet program) was released for IBM-PC compatible computers and Microsoft Word was first released,
The film Trading Places was at the cinema,
Michael Jackson and The Police dominated the Billboard charts,
I was in my second year at secondary school,
I was starting out in field hockey but far from the player I would become,
I listened to ‘Into the Gap’ by the Thompson Twins and their catchy hit Doctor! Doctor!
From the first moment in his presence, Ron acted differently to other doctors. He spoke directly to me and not my parents, treated me like a young adult and involved me in decisions about my medical care; which coming from the world of pediatrics was a welcome change.
He has always called me by my full first name ‘Timothy’. For the record, the only other person who does that is my mum (and only when I’ve really upset her, which is thankfully not that often).
He gave off an aura where anything and everything in life was possible – an abundance mentality you might say. He consistently used language like “What we need to do is…” and “There’s no reason why you can’t…” He has always been positive, giving off a ‘can do’ attitude which felt like a godsend when I needed guidance and direction.
Nicknamed ‘Rapid Ron’ by those in the medical world due to the speed at which he went about his work; his energy and maverick approach were like a breath of fresh air. He quite literally breathed life into my lungs.
For three decades, I have journeyed across three separate hospitals in London and the South East for his individual expertise and care. By rough calculation I have had over 300 appointments with Ron over this time and apart from one appointment with his colleague, I have always seen him which has brought its own security, exclusivity and familiarity. Due to this continuity his relationship with me has gone from expert to trusted advisor. I would say Ron has a ‘cup half full’ approach to patient care and advice which has certainly made an impression on me.
He had an extremely hands-on approach and as well as prescribing the strategy for my medication, he personally put in over 50 of my IV long lines.
He was always constant in his manner and approach. A doctor in some ways is similar to a business consultant in the way in which they face their clients (patients) every day of their career. Even when having a bad day, which we all have from time to time, a doctor has to remove any angst from their demeanor and be professional in front of their patient. Ron always achieved this.
An enduring doctor-patient dynamic should be a two-way interaction as with any long-term relationship. We have worked well together challenging and finessing my care and drugs regime. I take the time to research possible new CF treatments and bring them to Ron’s attention and we discuss their merits and likelihood.
The most often heard questions that Ron has heard me ask him would be along the lines of “What’s new?” “Is there any new drug that I could try?” For a while, it looked likely that a compound from the drug Viagra might be of help to CF patients. We both joked that as well as making my lungs better, it would put a smile on my face!
Humour breaks down the mundane and keeps things fresh. We always share the odd joke, discuss the latest joy or woe relating to his beloved Chelsea football club and have chatted at length about our separate sporting careers – my hockey and his footballing endeavours.
Maybe in empathy of the CF patients he treats, over time he has developed his own short and sharp cough that mimics ours. God forbid that our illness has rubbed off on him and he has come down with the CF version of a sympathy pregnancy.
He’s seen me across the full spectrum of my life – highs and lows, best and worst, upbeat and crestfallen, happy and battered.
He must have been devastated each time one of his CF patients lost the ultimate battle with CF, but ever the professional, he never showed it and maintained his extra positive approach and kept the façade in place. In the depths of my despair and just when I needed him the most to show me the path forward he remained steadfast, preferring to look forward than reflect.
Now that he’s retired and he’s not my physician anymore, I wonder what he thinks about me? I imagine he might be happy and proud that he’s been instrumental in taking that frail 12 year old so far in life – from boy to man, achieving my sporting dream of playing hockey for my country, and then keeping me well enough for marriage and fatherhood.
Am I one of his favourites? I only have to worry about one set of lungs, whereas he has to worry over 50 plus pairs of lungs so I’m sure there’s been no favoritism. All CF patients would be equal in his eyes.
How will I cope with the future without my mainstay doctor by my side? I have heard that the retirement of a long-term doctor can cause problems for some CF adults. The adjustment can be de-stabilising as trust in the new doctor is not there and there’s a feeling of having to start all over again in building a new relationship.
I plan to give the new CF care team the professional courtesy that they deserve, but it will be different – different styles, faces, approaches, mannerisms and clinical methods.
I need to be ready for change and go with it, using this new expertise to help myself and empower my health.
And back to my retiring doctor… I felt there was a neat symmetry that I had an appointment with him on his last day and I’m glad I was able to say “goodbye and thanks” in person.
I owe a huge debt to him and the CF Unit at Frimley Park hospital – words cannot really convey my gratitude.
Without wishing to sound overly dramatic, I’m pretty convinced that if it were not for the medical counsel and interventions of Doctor Knight, I might not be alive today. This blog post might never have been written and would have been more of a ‘Postcard from Heaven’ than a ‘Postcard from Earth’.
Will I see him again? Is this the end? I’m pretty confident our paths will cross around the CF circuit. Who knows, we might even find time to sit down, have a drink together and chew the fat about life as well as my health.
People come into your life from time to time and really make a difference. Doctor Ron Knight was one of those people. We are both living our lives with a cup half full…
I will keep you posted on my life affirming moments, trials and tribulations as and when they happen. Please keep reading and sharing my blog and sign up if you have not already done so.
Yours cup half full.
* Cystic Fibrosis is one of theUK’s most common life threatening inherited diseases, affecting over 8,500 people. The condition affects the internal organs, especially the lungs and digestive system, by clogging them with thick sticky mucus. This makes it hard to breathe and digest food. Each week, five babies are born with the condition, however, each week, three young lives are also lost to it. There is currently no cure for CF. However, existing gene therapy trials in the UK are bringing people with the illness closer to a form of cure but CF is not that well known and would benefit from more public donations.
For more information and to find out more view the CF Trust Website