This week from Monday 8th June is Carers Week and as happens each year there is a huge online presence with pledges of support for carers from many organisations and individuals. There are also numerous activities around the country aimed at supporting carers. Like many others, I have pledged my support to Carers Week this year and I have committed to trying to reach as many carers as possible by continuing to write my blog.
This year Carers Week will be different because of COVID 19 but perhaps we can make it different in other and more positive ways.
I often wonder whether or not initiatives like Carers Week actually make a difference to the everyday life and experience of carers. Unfortunately, many of the carers I speak to are unaware of events like Carers Week and continue to feel invisible and undervalued.
It is of course a huge challenge to convert the commitment of organisations and the words written in strategies into something which makes a real difference on the ground. There is a massive gap to be bridged between the hopes and aspirations contained in plans and strategic documents and the lives of carers and the pressures they face day in, day out.
So, I have been wondering what I can write which will make a difference and help to bridge the gap.
All any of us can really do unless we are in very influential roles is to try to make our voices heard in whatever way we can. Sometimes we don’t speak up because we fear we will not be listened to or we are nervous about speaking to people we perceive to be much more important than us or we think the way we feel and what we want is not important enough.
This Carers Week and beyond I would like to urge us all to try to make our voices heard.
When things are not how we would like them to be – speak up! When what is written in plans does not turn into a reality – speak up! When simple things which would make a difference to us are not taken on board – speak up! When it feels like there is no point because no-one listens – keep speaking up!
It isn’t easy, speaking up is very hard work. We can often feel intimidated by those we would like to influence, we can sometimes feel as though we are being too demanding or that we are the only ones who think in a certain way or that what we need is just not possible. But if there is something that would make a difference to you, it is very likely that it would make a difference to other carers too. Be brave and confident and don’t be put off – keep speaking up wherever and whenever you can!
Take care and stay safe.
First, Elaine, thanks for “ Uncertain and Scary Times “. I don’t know about others, but I said nothing because I had nothing to add. You captured my mood perfectly.
On this topic, I am normally circumspect. The only things I personally would speak up about are things that affect us directly – so that is our GP surgery service, our experience of hospital, our experience of social services and particularly dentistry. Normally I don’t because their services are generally of a lesser quality than I believe we deserve so my mindset is negative. I know it isn’t through badness, but lack of resource or understanding. My fear is that by banging on about every little thing I will suddenly find poor service gets a whole lot poorer!
Earlier this year we had an incident that blew my normal complacency out of the water. I came back from a shopping run to be told by our carer that a nurse had been and taken blood from my bedbound, mute, wife who is in the final stage of dementia. I’d had no notice either of the intention to take blood or the specific visit. I called the GP surgery. Practice manager “not available” so I said my wife has been assaulted, I presume the surgery is behind it, get someone to ring me. Got a call back after some hours from person who deals with complaints. She couldn’t see what the problem was. She’d looked into it and the doctor had authorised the test. I wanted to rip her stupid head off but I was way beyond cross and into the calm, focused anger zone where I was going to be heard. I said I would write to our doctor ( senior partner at the practice ) with my observations on the incident. I left it overnight and the following day crafted a letter describing what had happened, my objections to it, and, a statement that I wanted no one punished but did want lessons to be learned and assurances that neither we nor others would be similarly treated in future. Three days after I hand delivered my letter, and just as my patience was failing, I got a call from the doctor. He got it. He had asked for blood tests without consulting me because “they were due”. He didn’t know why the phlebotomist had turned up without an appointment or why she had taken blood without permission from my wife or, given that she is incapable, her “attorney” – me- but would look into it. We had a constructive discussion that he said he would acknowledge. Again, my patience was tested, but sure enough, about ten days later a letter arrived that did properly reflect our discussion, contained an unconditional apology, and a plan to ensure that lessons would be learned not just for us but for “the system”. Then came Covid. So the last bit, a letter confirming that the proposed actions have been taken, hasn’t happened and I haven’t pushed it. But I will.
I shall never know whether the doctor was motivated by a genuine desire to improve services or was terrified of a malpractice action. The general sloppiness of services we get from the surgery makes me a bit uncharitable, but whatever, this righteous complaint got a righteous response. He did say to me that by casting it as a demand to correct procedure rather than a demand for punishment I had avoided getting a defensive, adversarial response.
Some years ago we did a collective critique on “the system” with other carers that was well received and fed into improvements, but this post is long enough already.
So, yes, speak up, but I would say choose and execute your battles with care. Ranting at “them” is exhausting and we have enough on our plates already.
Stay safe, everyone. S.
Hi Elaine,
Thoughts for Carers Week was a light bulb moment for myself. I must be one who never knew events or indeed this week existed whilst I was caring.
Elaine your blog was followed by the BBC News coverage that there are 7 million unpaid carers in the UK ranging from young children to senior citizens, a staggering figure daily looking after a loved one. The Queen joined her first-ever video conference call speaking to a range of carers finding out how they were coping during the crisis.
Covid 19 The virus has been challenging, keeping both carer and their loved one safe from this virus, forming a ring of steel to protect and prevent spread, especially when the cared for possibly required more professional assistance from outside the “safe place of the household.”
Hopefully after this pandemic and health crisis there is a recognition from professional bodies, i.e. doctor’s, community nursing teams etc., the debt we owe to the Unpaid Carer. I firmly believe as your blog says we need to speak about the gaps that exist.