There’s a lot to reflect upon this week

We always begin our public Board meetings with a story. These are accounts of a service user’s experience of the care they have received. Colleagues work with the service user to find out how they want to tell their story. Their story is then developed into a narrative, which is shared at the Board meeting through PowerPoint slides. Board members then have the opportunity to reflect, ask questions and engage with the service user themselves.

Last Thursday was our monthly Board meeting. The first 30 minutes were devoted to hearing Georgia’s (not her real name) story. It was a powerful and a very difficult account to hear. My fellow Board members and I felt challenged and emotionally impacted by what we heard. Georgia’s story was one of harm and trauma, rather than of compassionate care. Her story demonstrated sadly how far too often Georgia’s wishes had been ignored or trivialised. Georgia’s mental health issues were constantly reduced to mere diagnostic labels, and by so many different professionals. Often these were contradictory and completely unhelpful.

Whilst there were some good periods during Georgia’s journey, these were few and far between. Like many others before her, Georgia had a list of things that she would like to see us change in the way future services might be provided and care given. Her list not only gave us something to reflect upon in the moment, but it provided colleagues with a plan of action that we could come back to in terms of measuring our responses and hoped-for improvement.

Earlier in the week I had also reflected on one of my daughters’ experiences of accessing health care. Like Georgia’s journey, it was a story of discontinuity and broken connections, of professional voices drowning out those of the people being cared for. My daughter’s partner, Graham (not his real name), had, a long time ago, been involved in a horrific life-changing motorbike accident. He had his right arm and hand amputated as a result. For many years afterwards, he had struggled with severe pain in the hand he no longer had. It is a problem many people, who have had a limb amputated, experience, but Phantom Limb Pain (PLP) is poorly understood.

There are several treatments that can be deployed, most of which involve some kind of pain relief. Eventually these can lose their ability to deal with the pain. This was the case with Graham. Fortunately for Graham, he had a GP who managed to refer him to a specialist NHS clinic who successfully manage to treat folk like Graham using neurostimulation. More importantly, perhaps, is that the professor who performs this microsurgery is the only one outside of the US who is able and qualified to undertake the surgery. He practices in London.

So down to London they went. Following a day of assessments, including the ubiquitous MRI scan, they were told Graham was a good candidate for the operation. A date was set for a pre-surgical assessment, which involved another trip to London. The assessment took just 40 minutes, but again involved a 6 hour round train trip. Frankly it could have been performed at Graham’s local hospital, with the results being sent to the team in London. A final ‘consent’ appointment was set up, which entailed another trip to London for a conversation that could have been easily undertaken on MS Teams. A date has now been set for the surgery, but he is required to go down two days in advance to have another MRI scan, a scan that again could be done by Graham’s local hospital at any time between now and the planned operation, with the results sent to London.

The final disappointment for me (and for Graham and my daughter) is that in addition to the three days’ post operative care he might need, they then have to stay down in London for another five days so the team can remove Grahams sutures. I once had a minor operation in Manchester, which meant the wound being closed with half a dozen sutures. When they told me I had to come back in a few days to have these removed, I explained that I was going to be in Chicago so was unable to come. The folk treating me argued that I could not leave the UK. I said I was going to a nurses’ conference, and I was confident that I could possibly find one of the 100’s of nurses attending who would be able to remove my sutures. And I did.

Both Graham and my daughter work, but the financial burden of so many trips to London, hotel costs, childcare and so on are horrendous. They do have the Bank of Mum and Dad to help, but that is not the point. Whilst I can accept that the specialist treatment can only be performed in London, the rest of the assessments and discussions could easily have been done using existing technologies and without any need to travel to London so often.

Today is the UK Day of Reflection for the Covid-19 pandemic. The day provides folk with the opportunity to reflect on all those impacted by the pandemic. They include people who died or those still living with the consequences of contracting Covid. And here is a Public Health warning, Covid has not gone away. As I reflect upon those days, I can’t help but think about the way so many services across the NHS and other public services came together to make sure people didn’t slip between the stools of organisational boundaries. It was a time of innovation and creativity, of partnership and collaboration. Yet here we are, just some five years later and those professional and organisational silos and barriers appear to have been resurrected and remain impenetrable.

Please reflect on that thought today and perhaps consider what difference you can make tomorrow to really ensure truly person-centred care is available to all.