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CUK Goals for 2021 - discussion and ideas - Page 2 - Carers UK Forum

CUK Goals for 2021 - discussion and ideas

Share information, support and advice on all aspects of caring.
I would support it BB.
I still feel that perhaps CUK could do campaign letters, add a link to us to sign,that could be sent to MPs , to be discussed in Parliament. Age UK , and indeed some forum users have done this. When ever I have signed, the MP for my area has always acknowledged there is an issue. Obviously not always been resolved, but in writing and from an organisation must mean something is wrong and unfair, surely? Inconsistency is a big bugbear.
Please tell me if I am misunderstanding it.?
Thanks for your further points in this thread. As I mentioned in my previous post, I will gather the issues you have raised and feed these into the thinking for Carers UK's new strategy which will run from 2021 to 2025.

There will also be opportunities for Carers UK members to put forward their ideas at face to face meetings later in the year, and if you have any other ideas for how Forum users could contribute to the new strategy please post them here.

Michael
Michael, it would be interesting to know how priorities are set?

How does what is happening right now, as demonstrated on the forum, influence decision making?

I am personally very aggrieved that as a pensioner carer I get absolutely nothing.

My friends without a disabled child are enjoying their retirement whilst all I do now is battle with Social Services to make sure my son has what he needs in the hope that one day I can take a back seat.

He used to have an agreed and properly costed assessment and care plan, then a new social worker was appointed who decided she was going to change everything, reduce his hours, and rewrite history. Four years later I'm still trying to get the fact that steam is his favourite hobby, that he's been going to steam rallies all his life, and owns a steam mill. This, together with a garden tractor he's owned from new, is his pride and joy.
Social Services clearly think that if they don't mention these things, they don't have to provide appropriate support for him.

There needs to be something more responsive than the Ombudsman to sort things out like this.
Michael Carers UK wrote:
Wed Jan 29, 2020 4:58 pm
Thanks for your further points in this thread. As I mentioned in my previous post, I will gather the issues you have raised and feed these into the thinking for Carers UK's new strategy which will run from 2021 to 2025.
Improved access for wheelchair users required, just about everywhere, but particularly in shops and restaurants. Many shops have *stuff* everywhere; try getting a wheelchair between the racks of women's clothes in somewhere like M&S.

Many pubs/restaurants are wheelchair accessible and advertise themselves as such - until you try and get a wheelchair under the table - stretcher bars, strange leg arrangements, table tops just too low to start with are some of the problems - at a rough guess, four out of five are a fail.
Concerning wheelchair access, Faye just recently reported that one restaurant wouldn't allow her father in a wheelchair to dine in. They said the wheelchair would be a fire hazard! No reasonable accommodation at that place
Rosemary_1706 wrote:
Thu Jan 30, 2020 5:46 pm
Concerning wheelchair access, Faye just recently reported that one restaurant wouldn't allow her father in a wheelchair to dine in. They said the wheelchair would be a fire hazard! No reasonable accommodation at that place
I saw that earlier: from the DDA ( Disability Discrimination Act) " It is illegal to treat disabled persons any less favourably than non-disabled persons".

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?

One of my problems in that area is now solved with buying a wav, but prior to that, two failed restaurant visits would add at least an hour to an evening by the time both my wife and her wheelchair had been hoisted in and out of our vehicle six times - if you started out wanting to eat at 7:00pm, it could actually be nearer 9:00 before you got sat down somewhere.
I found as a matter of course and second nature. To do an assessment on all venues before I attempt to try and book/go anywhere.

It saves frustration on all parties.

My husband uses a powered chair and has a hoist in the car. We did look at a WAV but found we would not be any better. It does get frustrating the number of times. Putting the hoist straps on/off etc. Taking into consideration the weather. Can we go out
windy wet cold etc.
sunnydisposition wrote:
Thu Jan 30, 2020 6:38 pm
I found as a matter of course and second nature. To do an assessment on all venues before I attempt to try and book/go anywhere.

It saves frustration on all parties.

My husband uses a powered chair and has a hoist in the car. We did look at a WAV but found we would not be any better. It does get frustrating the number of times. Putting the hoist straps on/off etc. Taking into consideration the weather. Can we go out
windy wet cold etc.
My wife has a power chair now as well, but as she is unable to weight-bear I also had to hoist her into our van and then hoist her wheelchair into the back - there was just so much fiddle and detail to attend to at every stage - the passenger hoist has to be set up - if you're parked on any sort of slope it has to be restrained with a bungee so as to not get in the way as the chair approaches, the footrests needed to be removed from the wheelchair to get it close enough to hoist her - just hoisting her also becomes fun if you are parked on any sort of a slope - put her in the passenger seat and then dismantle the hoist and stow it away again - then the chair has to be reassembled and tilted right back, (it's a balance thing when lifting it) and then positioned fairly precisely before attaching the straps to lift that into the back - but I had to first take the seat sides off or the lifting straps would damage them, hook up the chair and lift it in and strap it down - if it's raining, I am now soaked as the whole process has taken nearly 15 minutes and I'd have the whole thing to look forward to in reverse at our destination.

Now - she drives the chair in, four straps are attached to the chair to keep it secure and we're off - I've not bothered to time it yet as we've not done it often enough, but it's about three minutes maximum, and all bar one strap can be done from inside the vehicle.
Given the number of postings here regarding potentially unsafe discharges, rushed discharge to assess processes and apparent miscommunications or hospital reconsiderations of CHC decisions (eg, Faye's posting today), I'd really like to see some more immediate response from CUK experts, on the forum or through PM to the poster.

All too often, members here are faced with serious, complex issues which need an educated response well within the five or more days response time from CUK via its helplines.

I have never used the helplines to communicate with an expert advisor.

Hospitals, social services, to name two big offenders, apply extreme time pressures, or simply inform you what's going to happen to loved ones, (or after it's already happened!). In these frequent situations, people are left to seek immediate help via the forum, and members do their best to give their opinions: to expect a wait time of five or more days for an initial response, is simply not a viable option.
I agree completely Rosemary. Both my mum in law and my own mum had unsafe discharges, with catastrophic consequences.

Somehow we carers need more "teeth".
That's why I suggested that CUK write a downloadable letter which outlines the hospital discharge procedures that can be given to the hospital - as many don't seem to know what the procedure is.

In the longer term, I'd like to see some sort of fighting fund, or crowd funding (I know nothing about how this works in practice). I feel sure that if CUK challenged, in court if necessary, what the NHS or an LA were doing, then they would be far more likely to mend their ways that if an individual did it alone.

Does anyone know how this could work?