A weariness is about

As a volunteer, I talk to groups, individuals and organisations about all matters regardng the challenges of being a carer. What I am finding is that there is a growing despondency and weariness amongst people who are unpaid Carers. The growing demands on Carers as social care services are reduced or denied, the lack of Community health care services to sustain the cared for at home. It is difficult to counter this malaise, so many broken promises. In 2008 it felt we were on the cusp of a new dawn in terms of care provision, but now I fear we have regressed so far, people have lost heart. I have also noticed an apathy when it comes to getting support for Carers Week this year. Something needs to change to give people hope.

Mmmm … a trend that first started in 2004 with the first wave of LA cutbacks.

Best thread that provides a blow by blow account , starting in 2007 ?

Suffice to add , the chasm between family / kinship carers and the two major supporting organisations has never been greater.

One only has to look at the state of the nation … 1 in 4 below the official poverty line … including HALF the carer army ,
some 3.8 MILLION … and the policies being persued by both organisations.

Support ?

What’s left hardly worth mentioning … and , for far too many , priced out of reach !

Nowadays … EAT / HEAT / ROOF … if one can mainaged all three , they’ll be doing well !

A stcking plaster over a gaping wound ?

( Carers week ? Little short of a publicity exercise for … our supporting organisations … little ever filters down to CarerLand
… not one mention of the 100,000+ needing a food bank in order to survive ? )

I totally agree.
I know the vast majority of parents of an adult with learning difficulties in my area. Long ago I formed a charity for ANY parent who thought their child had a special need, even if it wasn’t yet diagnosed. A proper diagnosis could take years, but the need for support was immediate.
Through summer playschemes, trips out, etc. we all got to know each other well. The children are now all around 40 years old, and the parents are now around pension age.
My health problems meant my son had to go into boarding school at 16, and he never moved back home fully afterwards. He now lives in a flat, with carer support.
My friends were horrified when he went into residential care “How could you put M in a home?” was something I was often asked. It was a beautiful place, with lots of friends, lots of activities, and lovely grounds, M loved it, until it changed hands and all went pear shaped very quickly!
Those same friends are now telling me that they wish they had done the same as me.
Their son or daughter still living at home, they are exhausted and ill themselves. Every cut the government makes means that carers have to do more. The award winning day centre has closed down. “Support in the community” means a carer taking three service users to a coffee shop!

I have had years of battling with Social Services, my friends say “If YOU can’t get things right for M, what chance have we got?”
We are all worried about who will arrange proper services for our children when we die.
When the county council ran services there was some continuity, but now private companies are contracted, there is no continuity whatsoever.
As younger parents we had energy to spare, now we are just “firefighting” or in “survival mode”. Carer support? Forget it!
There is no spare energy left for anything now.

A worthwhile post but is it really surprising? Carers are already stretched to limit, mentally, physically and all too often financially, with no hope in sight. The social care paper is still awaited, Brexit, elections and climate change taking up much of our political energies. Whereas there is hope in the requests for monthly contributions to find a cure for XXX disease with research promising breakthrough treatments, carers support and finance seems to be a drain on precious resources with little apparent direct benefit to those outside of carerworld.

This will be my third year of being aware of Carers Week and my 15 month stint at caring for mum is now over. The news that Carers Week is coming up led to me sighing and wondering “ho, humm, who cares?!” .

Twice I have offered to distribute Carers UK carer guides to local GP offices, and twice I have been told I’d receive some in the mail, and have been waiting for months on end to receive any. Unfortunately, it’s easy to think that our carer organizations are just going through the motions without a lot of follow through or measurable beneficial results FOR THE CARERS THEMSELVES.

I’d love to be proved wrong this year.,…

Rosemary, that sums it up really well.

It’s left me wondering what the total income of Carers UK was last year?
What benefits have carers, individually, had as a result?!

From elsewhere on this site … 5 years worth available in .pdf format :

Annual report | Carers UK

Not wearing me deerstalker today … time for others to cast their magnifying glasses over these.

Good start will be the " Notes " to the accounts … should provide the breakdown ?

What benefits have carers, individually, had as a result ?!

I’ll leave that juicy half volley to others … crosses over to many threads.

Part of a much larger question that keeps repeating itself for the past 15 years or so ?

A question had could have been asked on the now defunct CARERS UK : YOUR ORGANISATION section.

A misnomer if every there was one ?

Thanks, BB. Perhaps Michael would care to comment? Maybe even send a box of the latest guides he’s promised twice before? My offer to distribute is till open, btw.


Rosemary, I’m really sorry you still haven’t received the guides you asked for. I’m sure we sent around 20 on the day you last asked for them so will email you separately to check that we have your correct address.


I so agree with you, Honey Badger.

Thanks Michael. I’ve just sent you a PM with contact info.

A good, heartfelt response Honey Badger.

Do the website monitors or Carer Uk’s researchers analyze our contributions to the forum to get statistics and pointers for their efforts? It would be nice to know.

Do the website monitors or Carer Uk’s researchers analyze our contributions to the forum to get statistics and pointers for their efforts? It would be nice to know.

Good question … one only has to look closely at current CUK policies for the answer to that one ?

Annual survey v. News section … which one would you elect to be the more representative of present day survival in CarerLand ?

Support / CHC / hospital discharges / housing / finances / food banks … take your pick.

Thank you Michael for your prompt response. I’m glad you’ve agreed to send more to me. I’ve been surprised by how many of my lawn bowling friends are not internet savvy, so distributing your information in pamphlet form in GP surgeries etc should help connect others to your services.

I’ve had so much support and advise from the forum and I thank you for providing this platform.

Thanks Rosemary, I’ve just put a bundle of our ‘Looking After Someone’ and membership leaflets in the post for you, this time to the right address! If any other members would like some, please let us know by emailing membership@carersuk.org

In response to your other question, yes, we monitor the Forum stats on a monthly basis and discuss these at our team meetings. Following the technical problems we experienced on the Forum in 2017/18, when the number of people visiting and posting on the Forum dipped significantly, we were really pleased that in April over 250 people posted in the Forum (the highest figure since last May) and nearly 700 visited (the highest figure since mid-2017). We’re continuing to promote the Forum in lots of Carers UK’s communications and hope that more carers will find us and be able to give and receive support on all aspects of caring.

Yesterday I was collating some of the recent positive comments about the Forum to enable our fundraising team to secure continued support for it and the other services we provide for Carers UK members, In these very challenging times for carers, I was really struck by how many people have said in the past six months that they have found the support they’ve received from other members on the Forum so valuable. Here are a few examples which you may have seen elsewhere:

by Stephen_16071 » Tue Feb 12, 2019 2:58 am
Hi all,
I’m a relatively new addition to the forum, three years this April, but in this time I’ve had nothing but excellent advice and encouragement from fellow members. In this short time I’ve gone from a former office worker to wiping my Mums bottom, battling depression and fighting a corrupt care home manager. All helped by other members, some of whom have been like rocks to me. For the first time, in a long time, I feel like I’m coming out the other side, its the wonderful people who have been through the same, shared experiences and given advice that have led to this.

by Rhona » Mon Dec 31, 2018 8:13 am
To all of you - Carers, carees old and young. I joined this amazing forum in the summer and it has been invaluable to me. I have learnt a great deal from reading and writing posts and the very helpful advice given. I would like to say a special thank you to the 'regular’users of this site who take time out to help us when we need them most. I wish you all peace, good health and happiness in the new year.

by Pauline _1901 » Fri Jan 04, 2019 9:48 pm
Hello and welcome to all the new members. I myself only joined this forum a few days ago. I have tried many other forums/support groups but have to say this one is by far the best. People are so kind and supportive and even if they don’t have first hand experience of your particular problem, there is always someone to offer a kind word, which in my case has proved invaluable and makes me feel less alone. The only advice I can offer is please don’t suffer alone. Accept help wherever you can. It’s so easy to lose yourself when caring for someone, but remember you can’t help anyone if you don’t look after yourself too.
I was eventually referred for counselling by my GP and it was a life saver.

Interesting Michael … and thanks for that.

In line with postings last year , time for CUK to reappraise it’s relationship with us on the forum ?

A second advice team which saves CUK monies … volunteers in the true sense of the word … on here
to help / assist / guide fellow family / kinship carers.

And yet , frozen out of anything going on inside CUK itself ?

Once apon a time , CUK did take note of it’s members views and recommendations … Gavin & Matt , take a bow …
those days are now a decade in the past.

CUK can only learn from us … we have the first hand experience and knowledge.

Thanks, Michael. I’m hoping you scrutinize the posts for carer issues too, like getting transport, falsification of paid carers’ careplan records, preparing home for patient discharges, difficulty in getting CHC, postcode lotteries, and use that data when devising projects and interacting with government officials.

I’ll probably get blocked and excluded for this, but as my post was the shining example. These guys really have helped.

I wonder if Michael would disclose his Annual Salary?

In respond to an earlier post , I did post a link to the last five years CUK accounts , Stephen.

A perusal of those should give the ball park figure for " Salaries " paid over those years.

Feel free to don my virtual deerstalker !

I would respect any CUK employee’s privacy … just like anyone else on the forum.


NOTE TO MICHAEL … none of the 3 links posted earlier work !

( No route found for “GET /support-” (from “https://www.carersuk.org/phpBB3/viewtopic.php?start=10&f=13&t=37043”) )

It’s the British culture of secrecy that keeps wages so extreme and discriminatory. We need to change the culture. I saw some information the other day boasting that Cook’s highest paid employee would “only” be earning a maximum of 15 x the lowest paid employee’s hourly rate. How can anyone be worth 15x more than anyone else - unless they’re directly generating that income in sales (eg pop stars, footballers, salesmen, inventors)