New Self Management team member, Grace, shares reflections on her first few months working at the ALLIANCE.
Since beginning work at the ALLIANCE in December 2019, I’ve had a lot to learn about the health and social care landscape and all the work that goes on in the third sector, along with all the jargon, acronyms (so many acronyms!) and organisations.
I joined the Self Management team with no idea how I was going to understand everything I needed fast enough to make myself useful. Taking a lot of time to read reports and stories, go to events and talk to people about their work was the most valuable thing I could do to understand the context of ALLIANCE work. Expanding my self management knowledge made me realise that I supported my employers’ self management when working as a Personal Assistant, I just didn’t call it that.
This language mismatch is important to bear in mind when engaging with people, particularly those living with long term conditions, disabilities and unpaid carers. Technical words, jargon, information overload – all these things can be off putting, making people feel left out or intimidated, even just plain bored. In that job, I recognised the importance of knowing when to step in and help my employer, not ask unnecessary questions when he felt overwhelmed and when to encourage him to do things for himself, increasing his confidence and independence, something which was hugely important to him.
Back to my current role – how can I help people like those I used to assist in a personal capacity access the support they need in order to live how they choose? In other words, how can I give them the tools to make the best choices about where to access that support and make sure their employee(s) understand their needs?
I recently read Wendy Mitchell’s brilliantly insightful memoir about managing her early onset dementia and her determination to remain independent for as long as possible. Wendy’s blog post about the stress of being assessed for PIP and how it forced her to focus on the negative aspects of her life due to previously having her income reduced as she was told she had made an improvement (despite having a degenerative disease) shows how little self management is understood. That feeling of being penalised for self managing successfully made me reflect on a recent conversation I had with my old employer who was worried a change in his family circumstances meaning a sibling was at home more would lead to his care allowance being reduced.
So how can the ALLIANCE help? Well, as advocates for people living with long term conditions, disabilities and unpaid carers we can influence change to make sure that the voice of lived experience is heard by all. We can support people to make informed decisions, and we can set an example by valuing the views of those who are often overlooked. For myself, my previous experience has made me acutely aware that accessing person centred, reliable and flexible social support is as important as healthcare support and I stand by this belief and the values of fairness, respect and dignity that it encompasses and embed this in all of the work that I do.
In light of the recent coronavirus outbreak, this is more important than ever. Everyone has a part to play to help us get through this and trying to make sure that the most vulnerable people are not disproportionately affected in both their physical and mental health. We must not underestimate the importance of being fair and kind.