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]

LA FEATURE: Compassionate Communities – living through bereavement with Compass Support

Words by Estelle Murphy / Project pics supplied by Compass Support

Few things in life are definite. But we will be born, we will face changes, and at the end we will pass away. Before birth parents have had nine months to prepare, and as we grow life teaches us how to live with change, but what prepares us for death?

Whilst death is a subject many still find hard to talk about, Birmingham has been recognised as the UK’s first ‘Compassionate City’ – awarded the accolade by Compassionate Communities UK in acknowledgement of how organisations across the city work collaboratively ‘to provide support, space, togetherness and understanding for those undergoing the experiences of death, dying, loss and caregiving.’

Building on those friendships and foundations, Castle Vale based Compass Support are launching their Compassionate Communities project this May – teaching people practical and emotional skills to help them support those facing bereavement in their own community.

Compassionate Communities will be delivered through a series of free workshops and awareness sessions, helping to educate people about dealing with bereavement and to ensure more in our community know where to go for help, advice, and support when someone is passing away.

The project will work with local groups and individuals to help break down the walls surrounding death, so people can talk more openly and constructively about dying.

LOCAL AMBASSADORS spoke to Isobel Hayward, Health and Wellbeing Project Organiser from Compass Support.

She explained: “The (Compassionate Communities) scheme was bought to us through Birmingham City Council, as facilitators of compassion, to bring it to anyone in the community that works with people.

“We run workshops on how to approach death and end of life, and going forward people will know who to call for help with bereavement, end of life, and financial support.

“Our awareness sessions on end of life are completely free and open to community groups and individuals.”

LOCAL AMBASSADORS further asked Isobel why she thought this scheme is so needed: “I think it’s because when you are dealing with loss and death, you are consumed by what’s going to happen and your grief.

“Easing that with the knowledge of who to call and what to do, or who can offer support for families is important. It’s about tailoring the process for individual needs.”

As the those who work in palliative and end of life care know all too well, there is no handbook for the general public on what to do and where to go when someone is dying, and often these families are left isolated, grieving and alone.

Any scheme giving people more help, support, and knowledge around dealing with bereavement will ultimately help people spend their last few days or weeks with their loved ones, instead of chasing information and adding more worry to an already stressful and heart-breaking time.

The more people who can offer support the better, and it’s never too early to have the knowledge you need to support yourself, loved ones, or friends. Who will be there with compassion, when you need them, at the end?

To find out more about the Compassionate Communities project being delivered through Compass  Support please email: [email protected] 

**For free community journalism and creative writing workshops, come and join our LOCAL AMBASSADORS team – click on the link below and email us for more information**