Contribution that carers make our society

Hello everyone, I’m a single parent carer and have been for the past 32 years yes - my son is now 32 i believe its now time that we make a stand and demand a suitable amount from the government in order to pay us - we do so much and should be given the recognition for the work we do, we are not appreciated for the work we are doing and saving ££££££’s of services which should be provided by Government . I would like to start a movement so we can stand up for our rights as carers and demand what we are worth. IF YOU ARE INTERESTED please get in contact so we can make a start.

Tell me more.

What plan do you have to tackle this?

I’m interested.

I’m not suggesting that you don’t go through with this, but it’s been done before and Carers have been found wanting.

Bearing in mind that there are calculated to be about 7,000,000 unpaid carers in the UK, several petitions have failed to make the requisite 100,000 signatures.

I agree Ayjay, but getting a group together is a good idea anyway. We are stronger together than alone. Many carers are scared to be singled out by the authority. The government is making poor excuses for leaving us and they wish to. All in the name of money. Something has to be done. I will join Marie’s group.

It’s only a good idea if someone has enough time, drive, and enthusiasm to take it on.

They will need to get the government to agree to part with £1,777 billion pounds per year to fund 7million unpaid carers at minimum wage for 8 hours a day, 7 days a week and 52 weeks a year.

The current NHS budget for 2020 (and pre-covid) was expected to be £129 billion and the DHSS budget £133 billion.

£1,777 billion is over six times both budgets combined.

Edit: I miscounted the noughts, it’s actually £177 billion, but still more than either the current NHS or DHSS budgets, and still a huge ask that will be met with as much hostility as the Government think they’ll get away with.

We need Carers UK to take the lead with this sort of initiative.

It’s almost too obvious isn’t it?

I don’t wish to be uncharitable, (we all lack time, if nothing else) but the OP having not been back since their original post doesn’t give me any confidence that they’d be able to make a better job of it than all of the others that have tried.

Agree Ayjay and Bowlingbun is right, this needs to be taken up by a large organisation such as carers UK. Over to you carers UK.
I can, as an individual, pound the hell out of the services for ignoring and leaving my son’s health in tatters, but I also have to live on an unreasonably low income whilst having to do this. Due to this situation, the ignoring method they use flourises. They know money is a factor of dealing with a situation like I have with them. Which is why they apply it so rigerously and confidently.

and the latest from me is as follows…

I have to ask myself about the integrity of my son’s previous consultant, who removed a medication which has left my son in a terrible state ever since. That was 18 months – 2 years ago. I took the matter of this up with that consultant at the time only to be totally ignored, in the true sense of the word.

Ever since this medication was removed there have been extreme changes in my son’s condition, which was once semi-stable. Now it’s the case that he’s indeed frantic with anxiety. This is has resulted in his seizure activity being unmanageable for him and increasing to a level that can’t be managed by anyone. It has had a knock-on effect which is not at all therapeutic. This is a change that has been extremely damaging to my son’s health and wellbeing.

Recently, I received a management plan, from neurology, which includes the medication which had been withdrawn. The matter of this was taken up to the new consultant, but he’s ignored it so far. Obviously I’m concerned, as this is very serious and shows a blatant lack of regard towards my son, who is the client of this ignoring consultant right now.

Anyway, why would a consultant want to just leave my son in the situation he is presently in? Not wishing to assist him in any which way whatsoever. It’s not as if he doesn’t know how dreadful it is, as I have sent videos to this consultant recently and he has viewed them.

It seems that has made no difference whatsoever with regard to my son’s clinical treatment, or any urgency to attempting to rectifying matters which doesn’t appear to be relevant. Not to the consultant holding my son’s case, but then he’s not in the position of having to manage the situation that he’s personally ignoring. Never mind the damage it’s causing to my son.

The previous consultant was clearly at fault for removing part of the medication program, he’d actually advised for many years. He’s at fault for not monitoring any adverse affects when he abruptly removed medication and also ignoring the adverse effects that were reported to him. Verbally and in writing. There really is no excuse as the matter was also reported to his service, who yet again ignored. I made a complaint about it, but that was ignored.

By ignoring, I actually mean, I was purposely ignored by the team and their management. To the point where I had been left with the added problem of an increase of seizure activity within my son and the frantic nature to which it causes during the phases of seizure activity, He has been displaying this ever since the certain medication was removed.

This is the previous consultant’s entire fault and one of the reasons the new consultant is also now ignoring my son. It really is a wickedness that is like no other. As it takes place in the form of destroying lives and stripping valuable time and turning what could be many good memories into the stuff nightmares are made of. Memories that can only be classed as, making horror movies appear mild in comparison.

The distress, the screaming, and the sheer awfulness that has been caused and the extreme suffering on a grand scale is so bad, that those that can hear it almost daily, and that doesn’t just include in the home, but the entire neighbourhood can clearly hear it. So much so that some of the newest neightbours, quickly rush into their homes, should they see him, or walk across to the other side of the road, if they happen to see him.

They don’t understand or even wish to, and as long as it’s not happening to them everything is alright. That seems a standard attitude of people these days. Probably brought on by an uncaring government, who have viewed people with disabilities as worthless, to the point it no longer matters how much suffering is caused. As long as people with disabilities are penalised for it and in any way possible and that includes the impossible as it happens.

It’s heartbreaking that a learning disability team has actively allowed my son to be left truly suffering and without therapeutic clinical treatment and that a social care team have also allowed this, despite allocating their very best hardened social workers to my son’s case. The one’s that don’t give a damn and definitely aren’t there to give the support they should be giving.

If anything they’ve used their positions to make life even harder. As if it could be.

I often wondered if they actually witnessed how bad it is, whether that they would change their attitudes. Then I found out it didn’t matter at all, even when they were shown recent videos. Nothing changed and the ignoring still continues. So do the difficulties in getting heard.

Social services allocated my son an advocate, who has ignored my son’s case. Doesn’t return phone calls or emails, messages, and nor in turn does any member of the service he works for. It took a number of years for an advocate to be allocated. He turned up once for a meeting and one phone call later he’d vanished into thin air.

No doubt, this is also a deliberate action.

What came after was also deliberate, leaving me singlehandedly, to have to continue to fight my son’s corner, with a health team who aren’t prepared to acknowledge or even try to rectify matters. Even worse a neurology service who write that only in the last few months has my son’s been in this position, when they weren’t told that at all.

Everything has to fit with what the last professional said and of course I can’t see that. What I have seen of it, isn’t exactly what I have relayed on behalf of my son. It is what is relayed anyway regardless of what was actually stated.

And all because, they have left it far too late in the day to ever be able to rectify. I was told, the longer seizures are left uncontrolled, then the less likely they ever will be. That’s put pay to any hope, just not entirely. They could at least make it more bearable for my son and have the consideration not to ignore.

Until then, I doubt he’ll ever get services to clinically meet his needs, and so he’ll be forever suffering. Disgusting!

I feel that the government won’t pay the living wage for carers whatever anyone says.

They only stump up cash when there are worse consequences if they don’t.

As we see with this Pandemic…splashing loads of cash as they have no choice…its all about the economy.

What I would really like is a better quality of life with less fighting for correct services/education/appropriate housing and support for people with disabilities…and just the chance to live a normal life like other people where you have time off/weekends away/holidays…just normal things that others take for granted…

Seconded: I’m not desperate for any extra money, although I’d not turn it down as it could pay for respite care so I can get a proper break, as things stand, a weeks holiday for me costs more than double when you add in the respite care.

Hiya Cloudygal and Ayjay, The government has no right not to pay proper wages for long-term care. I’m not going along with the attitude they take that it’s ok to keep people like us on the basics. It’s an all-time wrong and I’ll never accept it. At the end of the day, even if they pay for care and/or respite, we still have to pay ourselves for the break we are taking. How can we when being made to live on a low amount of money, that’s actually designed to be uncomfortable to live on. The thing is carers who are caring full-time are doing a job, so why should this government be allowed to treat us like we aren’t contributing to society.


You are so right. I feel the same.