For the start of 2013 I wrote ‘My dementia wish list’. Arguably I could just re-blog that for the start of 2014, since everything I described in that post is just as relevant now as it was 12 months ago.
Does that mean 2013 was a failure in terms of achieving those aims? Some may argue yes, but I’m not naïve enough to believe that those 10 objectives can be met in just one year. In my mind they remain a benchmark against which we should all be judged, and I include myself in that.
So many people talk about the end of the Christmas holidays conveniently forgetting that for many people the last two weeks haven’t been a holiday. For family carers and many front-line health and social care staff, Christmas Day, New Year’s Day and the other 363 days of the year are interchangeable; the relentlessness of what these individuals do, combined with their dedication and selflessness is what keeps our most vulnerable people safe, well and happy. If we recognise nothing else in 2014 it should be that.
Sadly with existing budget cuts, and more in the pipeline for 2014, services are closing or being restructured in a way that often appears to bear little resemblance to what might benefit family carers and frontline staff. Granted I’m biased after my experiences with my father, but I do genuinely believe that there are some things a civilised society should hold sacred, and looking after its most vulnerable people, and those who are charged with caring for them, to the best of that society’s ability should be sacrosanct.
Of course if evolution makes it possible to do things better and spend less money in the process that is a win-win for all, but the shear logistical requirements of health and social care will always have a high price tag, and to only see that rather than the requirements of the people accessing desperately needed support is the mind-set of someone who has never needed help for themselves or a loved one.
That mind-set is also completely at odds with the experiences many readers of this blog have had. A glance at the top 5 most-read posts on D4Dementia offers a very interesting insight into the priorities my readers have:
5) End-of-life care: A very personal story
4) Hydrated and happy (Dehydration)
3) So how much do you know about dementia? (Awareness)
2) The voices of experience (Experts by experience)
1) Hard to swallow (Swallowing problems/dysphagia)
The social media activity around my blog has shown, time and time again, that the posts involving practical advice on how to cope with common experiences of caring for a person with dementia (as delivered by ‘Hard to swallow’ and ‘Hydrated and happy’) are as widely read by professionals as they are family carers – indeed perhaps even MORE widely read by professionals.
Likewise the need to understand what good end-of-life care looks like will affect us all at some point, and as much as it is a difficult and potentially even a taboo topic, people from all walks of life are driven to seek out that advice. Then, of course, there are posts 2 and 3 on my list that exist to remind everyone about the value of the lived experience, and the need for basic awareness delivered in a meaningful way from said experts by experience.
The popularity of these five posts alone, alongside a look at the search terms statistics that tell me what individuals are searching for when they find D4Dementia, proves just how much this information is needed and how interchangeable it is (IE: not confided solely to those who are caring for a person with dementia). It doesn’t take much more of a leap of faith to link that need for information with the real-world need for care and support.
Fast forward another 12 months and I suspect that at the start of 2015 this may have become an even more desperate situation for many people. What of course will be looming on the horizon by then will be the UK General Election, expected in May 2015. In order to ensure that the needs of the UK’s most vulnerable people, and those who care for them be they family members or professionals, are not forgotten, 2014 will be a pivotal year to continue to highlight the difficulties that they are facing and push for the care, help and support that they need.
If I could give you a rallying call for 2014 it would probably read ‘Let’s be united and determined’. In my mind there is no greater challenge for the year ahead than to ensure that health and social care is given the priority anyone who has needed it, or worked in it, knows it deserves.
Until next time…
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