Well, I said last time it has been tricky finding time to write down thoughts and insights so what better time than now at 4.30am when I find myself awake and thoughts buzzing around my head.
Sometimes there comes a moment when you have to take time to reflect how lucky we are in the UK for all the health and social care services we do have.
I know the system can be impenetrable (that’s why we’re here at Carers’ Resource to help) and I also fully appreciate that on occasion carers and families can feel let down, overlooked or ignored by the statutory services but let me share with you a few things I’ve heard today (well technically yesterday) that made me feel grateful.
Firstly, Anil from Carers Worldwide started his presentation with a photograph of the lower limbs of what looked most likely to be a youngish person. He was talking about support for carers of people with mental health problems and, just like the UK, it’s a taboo and hidden disease.
So why am I mentioning it here – the ankles were shackled together…can you imagine that in a health or social care setting in our country?
The next poignant moment for me came from a presentation I attended about hospice care in Russia. Again the similarities were clear.
It is a wonderful caring supportive environment, made to look and feel as much like home as possible. There is joint funding from the state and voluntary fundraising, and palliative care is free. It is the only care that is in that country.
One of the aspects they wanted to highlight that is unique to hospice care is that they let carers and families stay with their loved one….I say unique because in hospitals, even intensive care paediatric units no family are allowed to be there for periods longer than allocated visiting hours so if your child is critically ill you can’t be at their bedside.
Finally, I’ve also discovered there are countries in Europe where caring is not a choice, or even a moral obligation for those who would perhaps challenge the word ‘choice’; it is a legal duty and requirement. In Israel and Estonia informal care provision is required by law.
I’m sure there are many more nuances to this than I’m stating here. Sometimes the language barriers have been a little challenging in trying to pick up the absolute finer details but at a basic level it has still left me feeling that when we moan and groan (often quite rightly) about the failure of services in the UK to deliver the level of support we feel we should have, then perhaps we should spare a thought for carers in those countries who, when seeking help, could quite easily just be told: “it’s your legal responsibility so get on with it”.
So having had time over lunch to mull over some of these things my thoughts turned to what was coming next – my presentation! A healthy nervousness, mixed with excitement, and a level of pride that I had the opportunity to share the work of our amazing team at Carers’ Resource on an international stage.
The seminar had four speakers all with a focus on modern technology and how different countries, including Sweden and the Netherlands, have been trialing online products to support carers. Our work fitted in beautifully, we’re on top of the game and we certainly have every right to be proud of what we’ve achieved in our 20 years – I heard a distinct gasp as I told the audience about the 30,000 carers we’ve supported over that time.
I challenged ideas about machines versus people, I used real quotes and reactions from our carers who had completed the survey, and I offered the conclusion that technology definitely has a role to play in supporting carers. But this should only ever be alongside real human care.
A computer will never be able to follow the question ‘how are you?’ with a hug if that’s what is really needed.
At least not for a while yet!
Final plenary seminars followed with more excellent insight into how technology is being tried and tested but still there’s work to do and solutions to find how we can get more carers feeling confident and comfortable with making this kind of equipment or products work for them.
Back to the hotel for a quick change and then on to enjoy a lovely conference dinner in the company of three lecturers from universities across England which made for lively debate.
All accompanied by wonderful music from local children who attend Gothenburg’s School of Music. Incredible talent with songs introduced and sung in English including, of course, two ABBA hits and an audience-participation number with words in Swedish for those who were brave, and hand gestures for the rest. It was all about having a sauna but it’s broken, but a broken sauna is better than no sauna at all.
Much fun and hilarity but perhaps there is a message in there that relates right back to my first points…in England we have services designed to help and support family carers – they are not perfect but when you look across the world at what others are fighting against and for, and how little they have, perhaps a ‘broken sauna’ is better than no sauna at all because at least we can keep working hard to fix it and that’s certainly what we at Carers’ Resource are striving to do.
Best get some sleep now, first session is in four hours and I don’t want to miss it.