CUK Goals for 2021 - discussion and ideas

[Michael Carers UK]

[/quote] I'm expecting my suggestion to get knocked back by CUK as not being an actual caring issue - but who do they think pushes manual wheelchairs in shops and who has to arrange somewhere suitable to eat?[/quote]

Thanks for this suggestion Ajay. Our recent member survey found that 53% of our members are looking after someone with a physical disability so wheelchair access to shops and restaurants etc. is definitely a caring issue and something that has been discussed on our Facebook page (https://www.facebook.com/carersuk/) in recent years. I'll put your suggestion forward but I think Carers UK will be quite limited in how much we can influence wheelchair access in shops and other places across the UK.

If you haven't looked at this website before, I'd also recommend having a browse of Euan's Guide which describes itself 'as a place for disabled people, their families, friends and carers to share their knowledge of accessible places to go'.
https://www.euansguide.com/

Michael

[Rosemary_1706]

Just to add to my earlier posting here today, hospitals post their Carers Charter signs all over their premises. We are led to believe we will be included but hardly ever are and often not in a timeframe in which we can have any constructive input.

Please don't think that the posting of signs in corridors, ward entrances constitute. "Mission Accomplished! Job done!"

(Similarly with the 'Fit to Sit' program which was put forward by CUKs program team as evidence of patients being sat out during the day thereby reducing negative effects of bedrest.)


There's much more to be done. Hospitals are just pulling the wool over our eyes if we think those problems are sorted!

[bowlingbun]

Michael, I'm fairly certain that disabled access was a requirement over 40 years ago, enshrined in the Chronically Sick and Disabled Persons Act.

Business have to make "reasonable adjustments" but clearly are not.

From my point of view, this is yet another example of legislation being ignored.
It's the same with hospital discharges etc.

How can CUK help us to get those responsible for statutory duties to do what they should be doing anyhow?

[Melly1]

This one BB, Disability Discrimination Act (1995)

Melly1

Edit; link didn't work. Will look for another. Where is Chris when I need him?!

http://www.legislation.gov.uk/ukpga/1995/50/contents

[Rosemary_1706]

Sorry guys but this is almost a stream of consciousness from me this morning. While I think of it, so many of us become exhausted, mentally and physically. We are stressed, worn out and don't know how we will cope another day.

We sometimes are recommended counseling, cbt etc but waiting times through nhs and charities are appallingly long. I was registered as a carer at my GP and I wonder if GPs surgeries contact carers to see how they are or invite in for a regular appointment check-up? When we are stressed we get sick, costing NHS and our inability to care for our carees and the whole system suffers. Slave labour takes its toll....

[bowlingbun]

I've been at the same surgery for over 50 years, plus all the extended family, husband, sons, sister in law, brother, nephew, niece. At one time there were two main doctors, who knew all of us, and our relationships. So my GP would say "how's mum?" as an opening question, and I could say I was worried about her, etc.etc.

Now, with new doctors as the old ones retired, there is only one who knows me from meeting me at mum's one day. If at all possible, I choose him thanks to online appointments. Otherwise, I'm just a sausage in a sausage factory, with 10 minutes and one issue to discuss, separate appointments needed if heaven forbid you have two things wrong. Now this practice has combined with another and is gradually integrating, the doctor that knows me is reducing his hours towards retirement.

My son with LD now lives 15 miles away, so as far as the surgery is concerned, he doesn't really exist. I was down as a carer when mum was alive, but apparently after she died, I was no longer a carer!!! Who cares about me? No one (apart from my sons). As far as Social Services are concerned, I'm a monumental pain in the backside, as I won't shut up asking for what I'm entitled to under the Care Act. I had yet another stupid email from them yesterday afternoon which really wound me up, didn't get to sleep until 1 am thanks to them.

[Londonbound]

I have read that in some countys you can see a carer support worker at your local doctors surgery, not full time but 20 hours a week.
You can take your caree along for an appointment and have a chat with the worker, sort out a few issues, stop them getting worse which of course would cost money.
The carer support worker is a part of the G.P. team integrated etc so the doctors surgery is carer friendly and provides vital help and support.

Now I wake up from my dream, I asked my G.P. surgery big practise over 20 doctors, its actually 4 practises working as one.
I asked and there is nothing at my surgery and no plans to do anything, so that's helpful.
I asked a few doctors and it was nothing to do with them unpaid caring, but surely the health of the carer is vital, regular health checks etc?

I was round at my friends, the caree that passed away, every day, sometimes late at night, there was district nurses out, out of hours doctors, he was in and out of hospital.
It was clear that he needed night care, someone to deal with issues in the night, he was i think very ill, but "WE DON'T DO NIGHT CARE"
There was very little consideration of me the unpaid carer, if someone had just put their hand on my shoulder and said are you alright? No one ever did.
I was offered a carers assessment about a week before his death, by the time I had received the form, he was dead.
Unpaid carers just don't exist except they do but do all the work and get no money, its all the paid staff who get the good salary and the help and support.
WHEN IS THE NHS GOING TO BE UNPAID CARER FRIENDLY?

[Rosemary_1706]

I was at a Parcelforce distribution centre to pick up a package. Prominently displayed was a notice telling customers that the employees will treat you professionally and with respect but they expect the same from its customers. At the pharmacy and GP surgery there were signs saying not to abuse the staff.

Perhaps carers need a campaign educating the hospital medical professionals, and others we deal with, asking for carers to be treated with respect as well. Possibly some badges saying ' Hi, I'm a carer but I'm a human being too. Please treat with me respect!'. I'm sure someone could come up with a much more catchy wording!

[bowlingbun]

There is a real theme developing here.

In actual fact, according to the Royal College of General Practitioners, each practice should have a "Carers Lead" and they should do all sorts of things to help carers. I gave full details a while ago, will see if I can find them again.

Here's the link. I've duplicated it on another part of the forum so that it doesn't get lost.

[Rosemary_1706]

BowlingBun, I didn't see the link you referred to.