LOCAL AMBASSADORS: It’s not you, it’s the system – navigating the NHS

Words by Jo Bull

My name is Jo, and I dare to exist while disabled. I am under the mental health team and I’m diabetic. I have experience on both sides of the desk in public services.

I don’t think it’s news to anyone that the NHS system is broken. Even before Covid-19 there have been areas of lack in terms of understanding and awareness with chronic illness, sensory issues, trauma informed practice, and hidden disability.

I write this because I need reminding of the following on a daily basis when I am ill. Because the system conditions us to feel like we are a burden, we are often left to manage our own illness – or treated as if we know nothing about our own brains and bodies after a lifetime of living and working within them.

And we can frequently experience unsafe treatment, in terms of both attitude and medication when practitioners are making assumptions or not paying attention.

The system is now so fragmented, overloaded, and traumatised, half the workers within the NHS are in states of fight or flight – and as no one has supported them to self-care, patients and service users often bear the brunt of that.

Sometimes they literally do not have enough bodies to do their job. Sometimes they are not feeling safe and grounded enough in their own selves to listen, absorb information, or keep us safe.

Two overloaded traumatised people meeting in these circumstances often don’t do well together. This is dangerous and distressing for people without complex needs, and even harder for those of us who do not fit the norm. If the system no longer works for the typical and abled it is now a massive hurdle for those of us who aren’t.

We need to pause, breathe, and meet each other – medic and patient – as two humans navigating impossible waters together. We need to have empathy for each other, without compromising needs or safeguarding, and without blaming, shaming, or being dismissive. Negotiating and navigating together, as a team.

As service users, we can tell ourselves the following things: they may not be able to meet our needs, they may not have empathy for us, they may not understand. This is not within our control. However, we do not have to accept or absorb arrogance, ignorance, abuse, or stigma.

We are not to blame for the gaps or lack within the system we keep falling through. The system’s lack is not the user’s fault; we do not need to hate ourselves. We are not a burden.

What we can have control over is how we view ourselves, and learning more about ourselves so we can continue to identify and ask for what we need.

Jo is part of the LOCAL AMBASADORS project, using community journalism to give local people a louder voice – including adults living with disabilities. For more stories from our LOCAL AMBASSADORS visit www.erdingtonlocal.com/category/la-news-features

If you would like to know more about the LOCAL AMBASSADORS project and join the team for free, fun, and friendly workshops on journalism and creative writing then email [email protected]

6 Replies to “LOCAL AMBASSADORS: It’s not you, it’s the system – navigating the NHS”

  1. This is a good feature showing the difficulties of the patients and NHS staff alike. Find answers to these problems is not easy but investment from government and local council in medical services is essential. Mental health and the care services seem to be amongst the hardest hit of all and ordinary people with genuine problems suffer because of it and NHS staff struggle with mental health themselves with feelings they are letting people down too.
    It must be addressed and services bolstered as they are so needed.

    1. Agreed! And many of the places people have accessed for creative expression and peer support are being closed down because money making matters more… but without people well enough to spend money or a high street safe enough for people whose health conditions make them more vulnerable (yes including me) there are less opportunities to even get into our own community. Some of us have physical limitations or sensory issues so can’t do crowds or much litter picking or cope with busy events and even local cafes can feel too overwhelming. We can’t all do sports… taxis cost money… and many of us on meds can’t drive. SASS and The Cube were so important for connection and creativity. Evenings can be hardest as not much happens then that isn’t loud or risky to attend alone.

  2. Excellent article Jo As you rightly say it definitely the flawed underfunded system See they split up residents Mind Sycamore Lodge and it closing Again care < cash

    1. sad to see sycamore go, was recently at Beechcroft and could see the staff packing up. many of those people were so vulnerable, i wonder where they will end up.

  3. Excellent article, Jo – your objective intelligence shines through. You are empathetic as always, addressing the respective dilemmas of patient and the healthcare provider. There has to be mutual respect there and the will to find the pathway to delivering an effective service for the individual and ultimately the community. If so, everyone benefits.

    I’m on the NHS waiting list of millions now, having paid into the “system” through my working life for half a century or so. I’ve only ever needed occasional A & E / outpatients services through all those years of paying tax and N.I. contributions, but now I really need an operation to restore my mobility.

    These days, I often feel like a pile of worn-out bones, just another outsider who can only observe the staff of their fractured, overburdened and underfunded NHS still trying to do their jobs. Smug politicians sell their lies about fixing healthcare to catch votes, because they know it’s an effective and easy option to gain or retain political control – just through their next term.

    1. David…sorry to hear you’re still waiting. Understandable feelings you share. Thank you for your kind comments. You too remain valued and appreciated.

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