Jules Godden is master trainer & Co-ordinator for Gwent of the Education Programmes for Patients (EPP). She is passionate about patients taking ownership of their conditions and health professionals truly listening and trusting their patient.
Jules’ patient journey:
My story started back in 1998, when I had major knee surgery to reconnect my ligaments and cartilage using a donor. This was my sixth leg operation; it would not be my last. The surgery was brutal; I was very unwell indeed. After six months I became even more unwell and almost everything I ate made me become very sick.
I seemed to be constantly in the GP Surgery; it became increasingly depressing when they simply kept telling me nothing was wrong. However, I got worse and by 1999 I started to develop night sweats, a cough and extreme fatigue after exercise. (And I was a very fit person doing at least eight weekly gym sessions.)
Thankfully, one of my horses hit me in the chest and the resulting X-ray saved my life. It led to me being diagnosed with stage 3B Hodgkin’s lymphoma.
I wanted to know if there was a chance that I had contracted the cancer from my donor; I just wanted to understand, not make a complaint. However, my question remained unanswered and ignored.
The care I had from my Haematology team was incredible; they secured for me trial chemotherapy from Washington. Importantly, my consultant and I made a pact that we would always be honest with each other even if it meant hearing things most of us would not want to hear and in return, I was open and honest with him; this is what saved my life.
The only major issue happened when he went away; I had been in hospital for four months. I had serious problems that needed resolving before my next round of chemotherapy. The on-duty doctor pursued an approach that was nearly disastrous for me. I came round the next day in high dependency with my usual clinician by my side as I fought for my life for three more days. Had I had been listened to or my notes checked, this need never have happened.
From 1999 – 2008 I had chemotherapy, surgery, or new diagnosis every single year including: osteoporosis, kyphosis, scoliosis, multiple fractures due to drug-induced osteoporosis, six operations on bones, ligaments, and the loss of a child due to chemotherapy complications and the existence of unknown cancer cells.
I had become very unwell again; following discussions with my severely disabled partner about the implications for both of us, regretfully we made the decision to opt for a termination as it was likely neither of us would be able to care for our baby. This was the most difficult decision I have ever made, and it broke our hearts.
In the end I lost the baby before we could act on our decision. I had to have surgery and a health professional said to me “I don’t know why you are upset you did not want it in the first place”. It was an emotionally devastating time ……. I just needed their empathy and understanding as well as their clinical expertise.
A major milestone of my journey was in 2008 when I broke my back and was in hospital again for three long months. I was in rehabilitation in Chepstow; again I received fabulous care, I felt valued and there was always someone to talk to and this was invaluable as I was suffering severe depression, feeling unable to cope after everything I had been through in order to live and be able to ride ……….. then to have this taken away from me. Having someone to talk to was just so important, supporting my emotional wellbeing as I struggled to emotionally process all that had happened to me and its implications.
One of the worst days for me at that time, was being taken home to see if I could start to consider moving back home. I had tried to explain that I couldn’t even lift my foot off the floor, so how could I get in the front door; no one listened. It took me such a long time to recover from this mentally and emotionally; I hadn’t been listened to.
I have endured huge amounts of physiotherapy, and still do, and they have been fantastic. I also wear leg and back braces and have had superb care from these departments too.
New lumps keep appearing; six years ago, a thyroid tumor was found, and I had surgery within days. More recently, it was a breast lump; again, I was seen within days and essential scans and biopsies revealed this one was benign. Lumps in my throat were also discovered in recent years and on both occasions, surgery took place within weeks.
Its August 2022 and I have just found another lump, have been seen within days by my GP, the clinician the following week, scans the next day. As I write this, I await the follow up. Whatever happens on this new stage of my patient journey I have absolute faith in the people whose hands I put my life in.
All these health issues have an emotional as well as a physical impact. If there is trusted and open two-way communication, I see no problem; but over the years, I have learnt that it is when there is poor communication that I get most distressed.
I believe it is so important that health professionals see me not only as a patient but as a person who is the expert on the impact of my illness, its treatments, and medications on my body. The health professional is the clinical expert, and I am the expert on ‘me’; together we can ensure the best approach for me as a person and a patient.
I believe that really listening to the patient must happen all the time, by every health professional. When it doesn’t happen, that missing focus can absolutely lead to many problems, clinical and emotional.
My final words are a huge thankyou to all those who have cared for me and continue to care for me; I literally wouldn’t be here without you. Diolch.
EPP Cymru provides a range of award-winning self-management health and well-being courses and workshops for people living with a health condition or for those who care for someone with a health condition. Their courses are about helping people to live their life to the fullest with their condition, not about making the individual an expert in the specific condition they may have.