Deb's Story Cover

‘Of course you will be involved in what care you receive,’ my mum said not long after I was told I had the long-term condition Ankylosing Spondylitis, and of course at the time I had no reason not to believe her. As a fit and healthy 30-year old with a strong mind (or so I believed) I was determined to ensure I was an integral part of my care plan.

Deb's StoryTwo years down the line however it was clear that despite the idea that sharing decisions about care between people and clinicians was not a new one, it was far from embedded within the health service. Communication was lacking between professionals and different organisations and especially lacking with me. I’m not saying I wanted to be bombarded with facts, but what I did want was sufficient information to allow me to make choices that took into consideration my values.

Sharing decisions – shared decision making (SDM) – requires a two-way conversation which is unstructured enough to allow for personal exchange. Whilst the knowledge and expertise from clinicians is vital in terms of facilitating appointments, what is also necessary is for them to truly listen to what the patient is saying.  It’s here that the power of personal stories is most important, as is the acceptance of patients as the true experts of their own conditions.

Feeling low in mood, not heard, and struggling with numerous symptoms I did not have enough information to understand – were they a side-effect of my condition or my medication, or even something else? – I was beginning to think I was never going to be truly involved in my care.

Appointment after appointment went by and each and every time I had to tell my story again.  ‘Do they not read through my notes?’ I often thought and said to my partner and family.  Wanting to start a family and knowing we needed IVF, we were also keen to know about the impact medications would have on both myself, and my ability to conceive and a baby – yet this was often ignored and we were left in limbo.

I felt as though clinicians didn’t believe what I was saying, as the words ‘Well, your inflammatory markers are okay’ came time and time again, and I was getting more frustrated that they did not seem to be listening to me.

Then everything changed.

I was able to request a referral to a specialist consultant and for the first time ever I truly experienced what it felt like to be involved as an equal partner in my care. Being asked the simple question ‘Deb, what are you hoping to achieve from today?’ I knew this clinician was different. Sitting away from his computer he looked at me and genuinely listened. He asked about my life and how the condition was impacting upon my ability to do the things I felt were important, and I finally thought ‘Thank god, someone is listening to me.’ This clinician was looking at me in a holistic way! He made me feel supported and in turn I felt empowered to ask questions and challenge suggestions he made.  We had the time to fully explore treatment options and he seemed to understand that a person’s values differ hugely from person to person.  We had a two-way conversation and as a result I was able to make an informed choice and together we reached a shared decision about my future care.

Together we spoke about the different medications I had tried and the impact these where having. I was provided with information about the pros and cons of each; again, this was something I had never experienced. We were able to consider what, if any, alternatives existed and what impact they may have. On the back of this we made the huge decision to stop my medication for an interim period and attend a two-week residential course. I felt confident and comfortable that I had made the best decision for me at the current time. I felt as informed as I could and was also reassured that at any point during this journey I could speak to him further to ask questions.

For me, it’s not a one-off experience, but a process – I have a long-term condition. However, this experience tells me that Shared Decision Making can and does work, provided that clinicians and patients are encouraged to communicate. Removing the power differential and allowing for more flexibility within the NHS is necessary, and both clinicians and people benefit.

Following on from my ‘light bulb’ consultation, not only have I benefited but also the NHS.  I have gone from regularly feeling I ‘needed’ to visit the doctors to inform them of the symptoms I was experiencing so they could be logged and acknowledged to only attending when I have needed actual physical input i.e. requiring an ECG monitor or blood test.  Not only does this mean I am saving the NHS money and reducing the strain on GPs, but it also alleviates the constant anxieties I often felt from these appointments.  Finally, by having a consultant listen to me and work with me together to form a plan of action I now know that all my symptoms have not only been logged but also acknowledged as a result of my condition.  I may not have received a miracle cure but what I have achieved is the confidence to trust in myself and my consultant in the knowledge that I have a plan going forward that is suited to me.