Frank Arrojo’s contribution: what to expect during a stay in hospital

This blog was written by long standing tide member Frank Arrojo. 

Last September I wrote about my experience in representing family carers on the National Dementia Action Alliance’s Dementia Friendly Hospital Taskforce (the Taskforce), and announcing the publication of a much improved and updated Dementia Friendly Hospital Charter (the Charter).  The purpose of the Charter is for those acute hospitals in England who have signed up “… to improve the care patients with dementia receive and ensure carers and families are involved every step of the way …”.

In my blog I referred to a piece of work I have been leading in developing a Poster to complement and publicise the Charter.  I am pleased to announce that the Poster is to be published during Dementia Action Week (20 – 26 May 2019).

The purpose of the Poster below is to highlight the key deliveries, outputs and/or outcomes patients with dementia and their families and friends should expect during a stay in hospital.

I hope you will agree the 11 statements are a good summary of what we all expect.

How did the Poster come about ?

I have been leading this piece of work since March 2018, when I came up with an initial draft for the Taskforce to consider as part of the review of the previous Charter.  I knew my initial draft was far from perfect and a lot of work was required to develop it into something meaningful.

Therefore, in December I led a small User Group – which included 2 family carers (Janis Cottee, fellow tide member and myself) and 2 people with dementia (from Dementia UK LEAP) – to develop this further.  And following a meeting and subsequent email exchanges and iterations we came up with a radically different version, we were all happy with.

The draft poster was then shared with the Taskforce, who then (including myself) subsequently consulted with other people with dementia and family carers.  The feedback generated at each stage of the consultation process has been extremely encouraging.

What difference will the Poster make ?

This is the question I continually asked myself in leading this work: “What difference will the Poster make ?”

The role of the Taskforce, for which I am the carer representative from tide, is not regulatory and so does not have any enforcement powers.  Its purpose is to encourage acute hospitals in England to sign up to the Charter and most importantly deliver on its content, and the Charter and now the complementary Poster are key components.

The Taskforce will be encouraging all the signed-up hospitals to display the Poster on their hospital wards, outpatient clinics, etc.  In this way patients with dementia and family carers – including those who may not even have access to support – will have clear expectations of what to expect during a stay in hospital.  Also, it is hoped the Poster will have a positive impact on all staff members who work in hospital (including senior managers, consultants, doctors and nurses), as well as volunteers.

Therefore, I am hoping the Poster will eventually have a real substantive positive impact in acting as a conduit/catalyst/vehicle through which meaningful engagement can take place between hospital staff and patients with dementia and their family carers, so that patients with dementia and their family carers feel empowered and supported.  I consider it will take time for the Poster to have a real impact, but as awareness increases I am hoping it will have greater impact long-term.

At the same time there is something all of us can do.  The Poster itself was intentionally designed as a stand-alone document, by this I mean you do not need to know about the Charter to make sense of it.  Therefore, I will be circulating the Poster to all the people I know who are and have been affected by dementia.  Also, if you have set up an Emergency Plan for the person you care for why not consider including a copy in your plan, as a reminder just in case a stay in hospital is required.

Finally, to download an electronic copy of the Poster and find out more about the Charter click here: