Today the BBC has highlighted an issue that poses huge challenges to both our NHS but also the day-to-day existence of one in four people in the population.
My name is Katie and I am Chair of the Co-production Subgroup at the Coalition for Personalised Care. I am also one of 26% of the UK population who lives with chronic pain.
Like so many people it took a really long time, in fact 11 years, to obtain a diagnosis. Up until that point, no one could tell me why I was in so much pain, in fact, people told me I wasn’t in pain, and people chose not to believe me because there was no label to explain my symptoms.
Having spent a lot of time with other individuals with chronic pain, this diagnosis period, as highlighted in the BBC report, is very common. Sadly, also is the questioning of your symptoms rather than acknowledging them. Dr Chris Barker, clinical director of an NHS community pain service in Ainsdale, Merseyside is quoted in the BBC report saying, “incorrect diagnoses, delayed diagnoses, poor experiences in and out of the health system, not being believed – all of these can contribute to a more intense experience of pain.”
In my personal experience and my experience of working alongside others living in chronic pain, this not only affects your experience of pain but your experience of the health care system as a whole. I personally found it hard to trust or rely on a system that couldn’t put a name on something so significant it was defining my life.
One of the most significant days for me was when I finally obtained that diagnosis. I can’t sing the praises high enough of the doctor who diagnosed me. After an initial discussion with me, he was sure he knew what was wrong and I stayed in the hospital that morning until he was able to complete testing to say for certain.
I was on a high: surely a diagnosis and leaving the hospital with a prescription in my hand and scans booked meant that the end of my daily suffering was in sight. Alas, it is not that simple and like so many other people living with chronic pain 20 years later, I am yet to have a pain free day. It took a while, maybe a year for me to realise that there was nothing they could do to completely take away the pain.
I could write for hours on the impact that this has had on every corner of my life. But that’s my story for another time and place.
I was excited to see our Partners Versus Arthritis contributing to this article and highlighting the need for “physical activity, programmes to help people with their mental health, community support and peer support.” These services, as Benjamin Ellis from Versus Arthritis notes, are not readily available or well connected. In fact, there are only a few options for people in pain, and with so many diagnoses leading to chronic pain, the options for support are vast.
My diagnosis was neurological but chronic pain spans so many areas of medicine with varying levels of medical knowledge, funded research and community support. This highlights personalised care at its core, looking at the medical, social and emotional support of each individual based on them and their needs, not the boxes we put them in. If this 26% of the population were experiencing Personalised Care as we all hope it could be, how much better could their lives be?
For me my primary concern is how do we capture the experience of this huge proportion of a population in order to have their voices heard, their experiences validated and ultimately their lives improved? From personal experience, I know that pain reaches into every part of your life and I know that I have not always had the support I need, practically, emotionally or medically. If we all knew what other people went through, how they have survived and thrived and where they have felt lost and abandoned, maybe we could make the collective experience of this one in four better.
But for many, getting involved in co-production activity is the last thing on their mind due to the daily struggles of pain, the distrust for anybody who says they can help, and a lack of hope or faith that this could ever get better just from talking about it and sharing our stories. Sharing our own lived experience does work, can work and should work if we do it right. Good co-production should engage everybody, particularly those who need this system to work and for whom it has previously failed.
I believe that as a partnership organisation we are the gatekeepers to a huge amount of lived experience relating to delayed diagnosis and a truly Personalised Care approach to living with chronic pain. If we can join the pieces of it together like a puzzle, lives including my own could be improved.