Entitled Care and Caring: Future-Proofing the New Demographics, this important event involves experts from 30 countries who will debate the critical issues of how we manage and address the needs of carers and how we will provide care in the face of inevitable demographic change.
Our Head of Development Anna Jackson will be among selected speakers and will present her paper ‘Independence, Reassurance, Innovation’ at the Technology-Enabled Care and Support seminar on Saturday, September 4.
She will talk about the benefits our innovative smartphone app – App4Care – and the impact the linked technological application can have on helping carers to keep in contact with their loved one, allowing carers to go to work, college or school, or get on with everyday activities.
App4Care comprises two interlinked apps, one for the carer and the other for the person they look after. It consists of a suite of seven easy-use functions, all tailored to provide peace of mind and to support independence. For more information about the app please visit www.app4care.com.
Anna will be blogging daily on here about her visit and you can also follow the event on twitter using #carers2015
Best of luck, Anna!
Also attending the Conference is Jenny Read a Phd student who is on a three year placement with the Carers’ Resource, conducting research into carers in the workplace for her degree. Good luck to Jenny as well!
Good morning. It’s Monday and I’m sitting in the airport lounge at Gothenburg waiting for the first part of my trip home. The perfect opportunity to take a little time to reflect on the final day of the conference yesterday and the experience overall.
My seminar choice in the morning was on the theme of ‘combining work and care’ with speakers from America, Norway, Australia and the UK. Nothing earth shattering here to be honest, but important nonetheless.
Study after study in country after country has proved:
• Many carers have to quit work to care
• This has a negative impact on their health and financial situation
• They need better support services including replacement care at the right time, in the right way, to be able to continue.
Certainly nothing I’d disagree with here but I think our own work is probably as advanced, if not more so, and we’re trying to offer solutions through support as well as understand the issues faced.
Final plenary was very inspirational.
Helena Herklots gave a strong and clear overview of the work and value of Carers UK, including sharing some of their latest findings from the State of Caring report and paying tribute to their founder, Mary Webster, as they celebrate their 50th anniversary this year. Mary died aged just 46 but the organisation she set up has gone from strength to strength.
Gail Gibson-Hunt gave some insight into the lives of America’s carers and their numbers are quite staggering; one in four people of working age are carers.
Finally, there was the most challenging, moving and inspirational speech from Dr Alex Kalache. He very pertinently pointed out that he is the only person at the conference from the poorer south, coming from Brazil. His poignant words: ‘you are ok in your countries because you got rich before you got old, but in Brazil most people get old before they get rich’.
Good health and social care is only available to those who can pay for it. He told two personal stories – one about his 95-year-old mother who is alive and well, although now in need if some support following a fall and hip fracture, and this is bought in by the family, who are not available to care.
Then that of his nanny Baba Victoria, who he had lost touch with but managed to track down only to find she passed away as she couldn’t afford to buy in the care and help she needed.
A true wake-up call to us all that we, in the developed countries, are lucky. We can juggle work and care in order to earn the money to pay for additional support the state doesn’t provide if we want to or for those who cannot afford it. Our health and social care system doesn’t turn them away because they have no money.
He also highlighted the need for men to take on more of the caring role in his country where this had always been a purely female domain. For women to be able to be equal and go to work if they want to the caring responsibilities need to be shared.
I think in England we were probably at this stage some ten to 15 years ago and that the balance for us is better but it certainly made me think that if men are to be caring then we also need to ensure they can access the right kind of help and support. In Brazil and Japan, as we heard in one of the seminars, some of this involves practical lessons in cooking and cleaning. In the UK this might not be the case but the emotional help and information is crucial.
As Lennart from the Swedish family care competence centre (co hosts for the conference) wrapped up, filtering some closing remarks from John Dunne of Carers Ireland, he was able to make a surprise announcement – the next international conference will be in 2017 in……..Australia! So folks watch this space!!
Overall, this has been a truly fabulous, insightful and thought-provoking experience. I’ve met people from around the world who share our passion for improving the lives of carers and have dedicated time and resources to either studying or delivering this help.
But for me the key lessons have been that we, in England, are well ahead in our thinking and our delivery. It is up to us now to lead the way, to keep pushing the boundaries, challenging the decision-makers and money men and putting carers’ voices centre stage in our own country and around the world.
We must share what we know works and help those who still have an enormous mountain to climb to even achieve the basic levels of care and support for families and carers.
I hope my blog, tweets and Face book posts have given you some insight into the scale and breadth of the conference and the knowledge and the challenges ahead.
If anyone wants to know more the videos and presentations will all be online and some live streams can already be viewed at www.anhoriga.se
Now, homeward bound and please no delays!! I don’t know how much more Swedish coffee my body can take!
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.
Goodness, it’s been a busy couple of days!
I haven’t had much time to scribble down any thoughts as every minute has been full of listening to great seminars and meeting fascinating colleagues from around the world.
Yesterday afternoon I listened to a technology-focused session and heard lots of findings similar to those of our own – technology is still an unknown quantity for carers and much more work needs to be done.
The final plenary session was also on technology and we heard about a project with over 21,000 users testing apps linked to a war veterans project which helps with mental health support.
This morning was another vibrant and informative start with a video address from Australian Prime Minister Tony Abbott and a piece about their new national disability insurance.
Lord Filkin CBE gave a superb address about the work of the centre on aging, and Anil Patel, founder of Carers Worldwide, gave an amazing insight into the needs of carers in low and middle-income countries.
His slide showing the vast challenge facing India with a population of more than one billion people and a possible caring population of tens of, if not a hundred, million carers blew me away.
The work they are doing is vital and it was truly humbling to listen to.
I’m going to have to fill you in on the seminar slots and my starring role a little later as I’ve got to dash to the conference dinner now, but there are some photos on Twitter and Facebook already for those who simply can’t wait!
Well, I just thought I’d use the lunch break to share a few of the stand-out moments from this morning.
It was an absolute privilege to hear from three superb plenary speakers.
Firstly, Queen Silvia of Sweden (pictured left) who talked about her own connection to caring – her mother had dementia – and some of the wonderful homes, training and the international forum she has founded, for which she remains patron and an active member and supporter.
Secondly, the Swedish Minister for Children, Older People and Gender Equality who talked about a number of interesting and very topical issues, including the refugees moving across Europe desperately seeking help. I think it was just the last month’s figures she quoted when she told us more than 700 lone children arrived in Sweden.
She also touched on the major impact of caring on women as the major providers of care, and the effect it had on certain aspects, such as taxation in Sweden where this is calculated on an individual basis relative to work done. There are incentives offered for people to work but no allowance made for those who cannot due to caring responsibilities.
Baroness Jill Pitkeathely, described in her introduction as the Mother of the carers movement, actually suggested herself that she is maybe more like the Grandmother – or even Great Grandmother!
But whatever she is, she certainly did a fantastic job of describing the development of the carer movement. This included how the first three acts introduced in England came about through our system of private members bills and, while they were not as revolutionary or as far-reaching as people initially would have liked, she explained how the movement needed to be more ‘reasonable than rabid!’ in order to get things started and to form the basis upon which to build.
Our first seminar session had the added and unexpected pleasure of being joined again by Queen Silvia who thoroughly enjoyed and engaged with the group. She even stepped up to ask a question about immigration and the difficulties this is causing with the increase in dementia and when patients often revert to their natural languages, and how service provision can be achieved for these groups.
An audience member from Australia suggested this was an enormous challenge for their country, also given the breadth of nationalities living there, and she stressed that the importance of family carers becomes even stronger in this situation.
Jen Kenward, Head of Patient Experience at NHS England, gave a great overview of the NHS commitment to carers and agreed totally with a question from Mary Larkin in the audience that care-giving may need to be seen more in the sense of a ‘life course’ rather than a one-off role now that so many people care more than once in their lifetime.
Fascinating insights into Carers Week in England and Ireland showed the huge success the week offers in terms of awareness and engagement from the media and employers.
Right, I’ve got to dash off. Next seminar session starting now. I’ll check in later.
Day one – September 3, 2015 (sent by Anna at 1.30am this morning)
WOW – what an amazing first night and introduction to what I think is going to be a truly fascinating experience.
I bumped into an old friend of Carers’ Resource Mary Larkin, who presented at our Caring Callers conference in the UK and is now on the Standing Commission on Carers with our Director.
As we stood chatting near an exhibition stall we were welcomed by two Swedish colleagues who run a mental health support organisation for carers and those they care for. They explained that in Sweden mental health is still extremely taboo, possibly even more so than drug or alcohol problems, and that carers remain very much hidden.
Next, following the welcome address I met more colleagues from academia – including our very own Jenny Read, a PhD student who’s working with Carers’ Resource. As we enjoyed some delicious Swedish nibbles we were joined by two gents from the Carers Association in Ireland.
We discussed access to politicians and decision makers – extremely interesting to learn that due to the relatively small size of their country they feel very close and able to discuss openly with their political leaders carers’ issues, although they are currently debating an issue over carers allowance – a very generous benefit of more than about 200 euro a week, and whether it should be exportable.
A complex but very interesting and relevant issue, given the recent concern in England over whether carers allowance would remain or be included in other more overarching payments.(more…)