Doctor! Doctor!

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.

Tim

Tim Wotton

* 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

http://www.cftrust.org.uk/

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About Tim Wotton

I live with my lovely wife (Katie) and spirited nine-year old son (Felix) in Morden, Surrey; working full-time as an internal communications specialist in the Oil & Gas sector. I have played sport, particularly hockey, tennis all my life and now regularly go to the gym. Cystic fibrosis has been a huge factor in my life, but not one that overshadows it. I have always had great support from my loving family - parents Margaret and Douglas (RIP), elder brother Chris and my twin brother Jez. I have many rich life insights based on knowing I have a reduced life expectancy and battling against the odds for over 44 years. My eyes and heart have been opened by my health struggle. I feel empowered to share my life lessons to help anyone with health and life issues to overcome. My passions include Paul Smith clothes, dress shirts (believing that it's enlightening to dress like it's your last day on earth), Alfa Romeo cars, spicey food, Harlequins and England rugby, Southampton FC, Wimbledon village and common, Dorset, seascapes, sunsets and military history. I am available for public speaking on this subject matter and can be contacted via timwottonAThotmailDOTcom. I have written a book 'How have I cheated death?' based on my euphoric countdown year to 40 which was published in 2014 and won the 2015 'Best Achievement' Award at the UK People's Book Prize. It is available via e-book, audiobook and paperback at Amazon and to order from UK bookstores. Go to the relevant sites below or in the UK go to a WH SMITH, Waterstones or Foyles bookstore and give them my name, book title and this ISBN number (9781849637190). It’s also available via GARDNER’S, BERTRAM’S, AUSTINMACAULEY.COM, BLACKWELL’S, PLAY.COM, AMAZON.CO.UK AND AMAZON.COM
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39 Responses to Doctor! Doctor!

  1. Sue says:

    Well spoken, Tim. Ron is an incredible doctor, and we’ll all miss him. He has given everything to his patients, and has been a tower of strength for families.

    • Tim Wotton says:

      Dear Sue. You are well placed to convey your feelings about how Ron has made a difference to so many CF lives and thanks for taking time to comment. All the best Tim

  2. Isobel B says:

    A really wonderful tribute to your doctor. I am a doctor training in caring for children and young people with CF-much food for thought for me in your writing – I follow your blog with much interest and huge respect for you.

  3. Margaret Wotton says:

    As Tim’s mum I can only echo everything he has written about dear Ron. He gave us new hope with his positive attitudes to caring for a 12year old with Cystic Fibrosis and we realised how undertreated Tim had been. Because in the early 80s it wasn’t the “done thing” to ask for a second opinion let alone change to an adult physician our local paediatrician insisted he reviewed Tim on a yearly basis. It wasn’t long after that, that instead of 3 paediatricians with varying specialities “dabbling” at Cf care, all Cf children were put under 1 paediatricain who had just returned from Australia and had a particular interest in Cystic Fibrosis. So, in a funny sort of way I think I was instrumental in getting our local service licked into place. However, we stayed with Ron and although Tim wasn’t keen on missing school for his check ups he was lured to the country branch of The Brompton where Ron consulted because there was a magnificent giant ants’ nest near the car park which absolutely fascinated him. The great thing about Ron was that he was interested in Tim, happy to read his school reports and to this day over the past 28+ years they have always had a common bond with sport. What a wonderful man to look after one’s son.
    For the record, Tim, I can’t remember when I last called you Timothy!!!
    love from Mumxxxxxxx

  4. Madeline says:

    Great post Tim! As a cyster with more than four decades under her belt I completely understand how important it is to find the right doctor. Over the years I have had to seek out the right doctor more than once and have been fortunate to find exceptional CF caregivers each time. It sounds like Dr. Ron was one of the best. Good luck!

    • Tim Wotton says:

      Dear Madeline,
      Thanks for your kind words – seems like we have been down similar paths! Congrats for keeping up the good fight and all the very best with staying as healthy as possible.

      Best
      Tim

  5. Dawn lawson says:

    Happy retirement, Dr Ron. God bless you and all the dedicated people who care for people with CF and do everything they can to keep them fit and healthy.

  6. pete in australia says:

    Tim, you’ve got an inspirational (choice word eh?) attitude to your life: and you know it’s more than just CF. It sounds like your family gave you the best start possible: to not let you define yourself by your illness. I’m a health professional, and it always saddens me to see parents (unwittingly) let their kids with illnesses define their lives around them. (God I’ve met some unbearable diabetic teenagers, and it’s not their fault, but their parents are literally killing them by turning them into disease-defined monsters!)

    Good luck with your future, and I hope you find another consultant as helpful as your last one. And another wish: we find a more permanent cure to this bloody chloride channel problem!

    • Tim Wotton says:

      Hi Pete,
      Thanks for your kind words and expert insight – you hit the nail on the head. I suppose only thing I would say in the defense of parents is that until you are in their shoes with a sick child, you don’t always know how you will react.

      Thanks for commenting and do keep following the blog…

      Best
      Tim

  7. Sean Bell says:

    Fantastic tribute to an obviously fantastic doctor/friend. Reminds me of my own CF adult specialist, Prof Kevin Webb who still runs the Manchester Specialist CF Centre. I started out with him in 1992 as a 25 year old new to Manchester. 20 years later he still keeps tabs on me even though he had to relinquish general responsibility for my care over to the transplant team 5 years ago. All the best Tim, enjoying your posts tremendously. Sean

    • Tim Wotton says:

      Dear Sean,
      Appreciate you writing in as always and I’m glad that my post resonated in the way it did…

      Keep as healthy as possible and continue being a shiny northern star for me down south!

      God Bless
      Tim

  8. easypeasyuk says:

    Reblogged this on easydan and commented:
    have read char

  9. Olivia says:

    I’m so sorry to hear your favorite old doc is moving on. I hope you’ve settled in well with the new team by now.
    Reminds me of one day last year when we were visiting a friend with leukemia at Johns Hopkins and we bumped into Jeff’s original CF doc, who goes back from time to time but retired nearly 20 years ago (or did he treat Jeff for the first 20 years and retire 10 years ago? I’ll have to ask.) Anyway, he recognized Jeff first and asked about his work. I was impressed he remembered so much about Jeff.

  10. Victoria says:

    Tim, not sure whether you have received the email from Ron Knight about his current situation, which he need support with particularly those of us who have been with him since childhood?

    • Tim Wotton says:

      Hi Tori,
      I’m unaware of the email but will email you independently to discuss.

      Thanks for reaching out.
      Tim

      • Amy says:

        Tim, Victoria
        I am the older sibling of a CF sufferer who has been under the care of Ron since diagnosis when she was a baby. My sister and our family are completely indebted to Dr Knight for all his hardwork, fantastic care and the support he has given both my sister as his patient, and also our family. She lives a full and we like to think ‘normal’ life.
        Thank you to Dr Knight for keeping my sister in the bestest health.

      • Tim Wotton says:

        Hear hear Amy – Dr Knight was the Knight in shining armour (excuse the pun) for many patients and their families! He will always be remembered fondly…

        Bless you
        Tim

  11. Victoria says:

    Have sent you email, best wishes Victoria

  12. Sarah Jealouse says:

    Dear Tim, My son Alfred who is 33, has CFand has been a patient of Dr Ron Knight for 9 years. Your tale rings true to Alfreds story.
    When my son got a job near Frimley, some 10 years ago, I was recommended to go to Dr Knight by a nurse there. It was amazing the enthusiastic view he had and he truely inspired Alfed to be the healthy specimen he is now!
    I have attended some of my sons appointments and seen his progress.
    How can I help Dr Knight?
    yours Sarah

  13. Louise whittaker says:

    Tim,
    This reminds me of my son David’s relationship with Dr Knight, we were devastated when he left. Even more so with the current situation he is in.
    He truly was a fantastic Doctor and David and he shared a love of Chelsea FC.
    You bought tears to my eyes with this so well written article.

  14. Mrs Brenda Davis says:

    Hello Tim, I met you some years ago at my daugher Karen Southwell’s 30th birthday party. I too have been a patient of Dr Knights for 24 years although not with Cystic Fibrosis. Would you be able to make contact with me please? Many thanks, Brenda Davis .

  15. skiesblue says:

    i congratulate you on your determination and good health. having cystic fibrosis is something someone without could never imagine. even those close to them. unfortunately my one of my best friends passed away under the ‘Care’ of your ‘doctor’ a few years ago. atleast her voice is being heard through the voice of her family and friends with hope her legacy continues to stop neglect in patient care. all the best to you

    • Tim Wotton says:

      Hi there,
      I wrote this blog post about Dr Knight before the recent GMC trial. I don’t view my care from Dr Knight through rose tinted glasses, but I do know, like many others, that he was integral in keeping me alive this long. It’s a shame that not everyone had the same experience.
      Rgds
      Tim

  16. Ann Palmer says:

    I have had a nasty attack of pleurisy and pneumonia. Last time I was very ill – three years ago –
    Dr Knight saw me within two or three days following an urgent GP referral. I have been treated several times by Dr Ron Knight, the best chest physician I ever had. I have been given another urgent referral by the excellent GP and have been told by the hospital that I will have to wait a week to be seen. I am in considerable pain and am very upset that the Head of Dept doesn’t seem to understand my plea for help this week. Added to this I am a carer for my son who has complicated medical problems. Dr Knight was not only a brilliant chest physician, he was a kind and generous docdtor and I miss him terribly – Ann Palmer

    • Tim Wotton says:

      Hi Ann,
      Yes, Dr Knight was a one off and saved the lives of many – mine included! I would not be alive today without his pragmatic medical care…
      I hope you get your health attended to soon.

      Take care
      Tim

  17. Ron Knight says:

    Hi Tim ! I enjoyed reading your blog but just for the record all my patients with CF were my favourites
    Very best wishes

    Ron

    • Tim Wotton says:

      Hi Ron,
      Good to hear from you and I’m glad you liked the blog. As you’ll see from the majority of replies I received on this blog topic, you were held in the highest of regard by hundreds of patients and their families.
      Best
      Tim

  18. Rosie says:

    13/05/2014
    I have just come across your blog and read it with interest.

    My son William Mitchell was a patient of Rons’ until 1985 when he had a sudden bleed from his lungs that sadly ended his life.

    Ron was absolutely fantastic as a CF clinician and improved my sons’ health in the four years he was with him. William attended Christ’s Hospital School in Horsham, and I don’t think he looked after himself as he should have done at times, when it came to holiday time, Ron would haul him into Brompton Frimley and repair the damage.

    I am very sad to learn of Ron’s fate and do hope he is restored to the medical register, the life and death of CF patients is a lottery and we can’t expect miracles.

    I remember when they discovered the gene, we were so excited, was that 1983/4 and still not a lot of progress.. I have a friend whose son is on call for a lung transplant, he is forty, William would be 48 now.

    • Tim Wotton says:

      Dear Rosie,
      I was delighted and touched to hear from you. I thnk we both know the special way that Ron cared for his patients really made him stand out. I will never forget his care and neither will you.

      I hope your friend’s son received the transplant in good time. What a heartbreaking process that must be…

      God Bless
      Tim

      • Rosie says:

        Many thanks for reply Tim.

        I did receive a letter from Ron just today, I wrote to him some time ago, not knowing of his fate.

        To be honest, I was heart broken when he told me and wished I’d known, I would have addressed the medical council i no uncertain terms.

        My husband was a Consultant Radiologist, but he too sadly died in 1975, ten years before William. I got to know Ron when he came to give a talk in Sheffield at the Hallamshire, what an eye opener, William was under a Consultant at the Northern General and although his treatment was what I call adequate, I wanted more for him and that is what Ron did.

        I used to know a Gwen and John Healey, they moved to York, their son Jonathan had CF, I often wondered what happened to him.

        I am lucky, I have three other children. Unfortunately my Son has a son with Friedreichs Ataxia, he is twenty five and totally paralysed, that is a recessive gene, another 1 in 4. all the children in the family have been tested for both genes, some have one and some have both, but at least we know where they are and now it’s up to them to get their partners tested if they wish.

        I have rambled on enough. I suppose we should be thankful that Ron had retired before those parents complained.

  19. David B says:

    Tim – we met when you have your talk in Parliament a while back and chatted about Ron for a while, I’ve only just come across this amazing tribute to him and it reflects so much how I felt for him after 30 years, one of his originals I believe. The care and devotion to his work outshone the later sad events, I remember going for a walk round CFU at 10pm and seeing him still working away, and him popping in for a late visit one evening to see how things were going.

  20. Ron Hilton says:

    Tim, thanks for this post, it is 24/10/15 now and only just found it.
    i am one of Rons Bronchiectasis patients, now with a very lovely doctor Alex Higton who i put forward to replace Ron as she was with him doing her training, she is a very caring doctor just like Ron, there will never be another Ron Knight.
    would love to be able to know where he is and send him my regards, it is a great loss to the NHS.
    Ron Hilton.
    PS
    can i have permission to copy your post to our bronchi web site, i belong for 10+ years to a site bronchiectasis r us i have spoken much on site about my very great care at Frimley.

    • Tim Wotton says:

      Hi Ron,
      Better late than never! 🙂 Lovely to hear from you and thanks for your kind words. We both know how vital Ron has been to our separate survival.
      Please feel free to share my blog with your bronchi website and I’ll email you about your other requests.

      Best wishes
      Tim

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