CUK Goals for 2021 - discussion and ideas

According to CUK’s figures, I have made more posts than any other forum member, almost 22,000!
Having had ten carees in the last 41 years, I suspect that is also a dubious record!

I have been increasingly concerned that the same problems crop up over and over again, and wonder if forum members could help CUK nip some of these problems in the bud, once and for all?

I’ve just been to the main site, copied and pasted one of the main aims of CUK.
“We will keep campaigning until every carer gets proper recognition and support”
Would be useful to have specific goals which reflect this aim for 2021?

From my own observations, councils struggle to meet the needs of those with the greatest needs.
People who need a lot of night time support.
People who have challenging behaviour.
Services of the right quality at the right time are not available, although the Care Act says they should be.

I recently met a mum whose adult daughter had challenging behaviour, the LA had awarded her a large care budget, but mum couldn’t find anyone able to care for her daughter, so had to send back the direct payments and care for her herself. The LA told her she couldn’t have the money for the care she provided, although the Care Act says she can.

Those with the highest needs should be entitled to Continuing Health care, but in reality, it’s a poscode lottery. In my area there is a very low rate of eligibility, in parts of the north west of England, you are 800% more likely to be eligible.

Hospitals are continually ignoring the rules about discharges, leading to unsafe discharges and carers wrongly being told they have to care.

How can we work with CUK to resolve these issues?

What about a meeting to discuss your concerns?

With the greatest respect, Bowlingbun lives near the New Forest, CUK head office is in London! Her concerns are for every one, not just herself. These things have been discussed at various times.
I wonder if CUK could set up petitions, starting with one of the issues, that we could all sign ( if we agree).as age UK do. Coming from an organisation it could have more clout? I’m not certain if it would be within their policy but at the moment I can’t think of any other suggestions.

On the forum, we often talk about NEEDS and WANTS

If your loved one has high care needs Social Services or the NHS should be meeting those needs, directly or indirect!y. If they can’t or won’t, family had to step in. So it’s impossible to go out to work. There need to be better support available, but day centres are not really the answer if you are bedridden. At times, family might be able to help, but not free! We all have bills to pay.

Hiya Bowlingbun, This is right up my street as you know. I can bang on about it endlessly as an individual as you know but I also know many carers are affected by it and we all need to ask the question of what we want as goals for discussion and what exactly is being done about it, to bring the issue to light in the public eye. I encourage all carers to get involved for their own future and also the future of care.
I think this is the thread you’ve started Bowlingbun( which is brilliant) which should encourage the voices of carers to be coming forward and actually saying what they hope for regarding goals and our voices projected by CarersUK for the future of caring.
Otherwise caring especially unpaid will become extinct as no-one will be willing to do it.

I think there is a lot of apathy as it’s so hard to change things. But we have to try.

I had intended to go to work part time, bit that is impossible.

The life outside caring should be possible.

Short breaks
Holidays - like any paid worker
Ability to look after ones own health

This must be against our human rights. No one would take a job on like this.

I wonder how many carers have had to give up through exhaustion.

Thanks all for your posts in this thread.

During 2020 Carers UK will be developing its new strategy for 2021 to 2025 (when it will be our 60th anniversary). Later in the year there will be opportunities for members to feed their ideas into the new strategy and we’ll let you know about these on the Forum.

In the meantime, I will pass on your initial thoughts to colleagues in our policy and campaigns team.


I’m glad you brought this subject up, Bowlingbun. The points you raise are well said.

Around Christmas time I commented that the carers life could be less burdensome if our carees were treated better during their hospital stay, regarding weakness due to bedrest and pressure ulcers due to not being turned or inappropriate mattresses.

I was directed by CUK to the campaign to encourage ambulance paramedics and A&E staff to put patients on chairs, rather than stretchers. Reviewing that program, it was clear to me it was more about freeing up corridors than anything else.

If the hospitals could be persuaded to implement better proven practices, our loved ones may not experience the undue decline in health and increase in care needs which so often happens during a hospital stay. This has long term negative impact on expenses and demands placed on the carer.

I would request that CUK speaks to this issue whenever the opportunity presents itself, even if it’s not adopted as a formal project.

At least bring UK carers in line with Scotland …

I have always believed that constructive criticism is best, you should never criticise anything unless you can suggest something that might improve the situation.

In an interview, Meghan Markle said something along the lines of “we shouldn’t just survive, we should THRIVE” and I can’t get this out of my head. I was fit, well, and very strong until my son was brain damaged at birth. 40 years on, after 8 operations removing bits of me, I’m a wreck, I often joke that if I was a car by now I’d just be in a scrapyard for donor parts! I’ve had some very dark times, when I wondered if it was really worth being alive any more if my role was just to run around after everyone else? I know I’m not alone in that.

How could CUK support us more, at minimal cost? What do we need to help us THRIVE, not just survive???

Some things will take a lot of work, planning, reaearch and campaigning. Others could be done within a week!

We all know that the NHS and Social Services are ignoring rules about assessments, care plans, discharges etc.
Forum members have very little “clout” when trying to make a difference for our carees.

It occurred to me earlier this week that if CUK could write a sample letter of what the rules and regulations were, that we could download ourselves it might “concentrate the minds” of decision makers.
This could be done almost immediately.

In the longer term, it would be much more effective if CUK sent out the letters themselves to the CEO or Director concerned, and kept a list of how many letters they sent to each organisation every year. That would take longer to organise, but not too long.

How does this idea sound to you?
Would you support it?

Could we have a trial period?

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, 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.

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

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.

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?