Category Archives: Carers

FACT – fire safety for the vulnerable

I went to a meeting of the Wickham Market and District Carers’ group today, where, yet again, we were treated to the most brilliant and useful talk. This time it was from FACT (Fire and Carers Together).

Explaining FACT to all of us who are desperate to know..

The Suffolk FACT scheme is a free service in Suffolk for family carers and vulnerable people with additional needs who might find it difficult to leave their home, or understand when they should leave their home, or know how to leave their home, in the event of a fire. As you can see, it gives essential information.

How does it work? Basically, Suffolk Family Carers works in partnership with Suffolk Fire and Rescue Service to assist family carers and vulnerable people to prevent fire in their homes. Fire safety officers will  come out to your home, and provide a very specific home fire safety check on site, and then give you advice – and appropriate (free) equipment if it is needed. By registering with FACT, you  – and those you care for – will learn how to prevent fire in the home – and will be helped to prevent it.

And more – FACT can give you a (free) listing on their an emergency database at the Fire Control and Command Room . This  alerts them to people with special needs or requirements should there be a fire on the property and will help them prioritise rescue.

We in Suffolk can be proud that FACT is the first scheme of its kind in the country.

So far, FACT has registered a great many people in Suffolk, and has also provided over 800 home fire safety checks. Suffolk Fire and Rescue Service has fitted many fire alarms, including sensory alarms (ones that can alert people with hearing difficulties).

Carers: there is no charge for this service… so please, please, make the most of it!

More details and how to register on the FACT scheme, here

Wickham Market’s Support for Family Carers

Today I went to a fantastic Christmas party, run by the Wickham Market and District Family Carers Support Group.

We had a lovely time at the party, but then, we generally do.  Coming along to the group gives a little relief  from a hard relentless job for so many, particularly those supporting a  loved one with a degenerative degenerative disease. “I live for these meetings,” a member told me today.  She cares for a longterm partner with Alzheimers – and coming to this group gives her a chance, not only to put her cares to one side for an hour or two,  but to do so in the company of people who know exactly how longterm and dispiriting these cares can be.

I’ve been attending since the group started in April  – not as a County Councillor (although SCC provides some of the funding), but as a family carer in my own right.  Since it started  up it has been a wonderful source of support, and invaluable information to help each of us members in our caring role  – and, quite as importantly –  a little respite from it . 

The Corn Dollies melodeon trio had a number of us dancing , and then singing to their lively selection of tunes and carols

As you will know from other blog entries of mine, I am very concerned about the uk’s scanty and uninterested notions of how to treat the nation’s 6.4million family carers. People who do so much in such isolation and with such  little help.  Fortunately we  live in the very part of Suffolk where people have  recognised  quite how isolated family carers of all ages and backgrounds  can be – and which has set up a group to cater for a diverse range of carers over a wide geographic area. 

Don’t take my word for it – if you are a carer, come along to the group  one Wednesday morning and find out for yourself.

Which brings me to another of the Wickham Market objectives:  to train and set up a pool of local, trained, accredited and insured  carers to respond to the present and future needs of the local community, which will improve employment opportunities for local people as well as helping out group members in an emergency.

And today I heard good news from Pam Bell, the originator and moving spirit behind Wickham Market Family Carers Support: Suffolk will benefit from over £200,000 of lottery funding, to create other groups set up on the Wickham Market model. Congratulations Pam!

Paying to Care: a Modest Proposal about Carer’s Rights

Today is Carers Rights Day

And boy, do they need someone to look out for them.

There are an estimated 6.4 million people in the UK providing unpaid care and they are saving the UK economy £119bn every year – more than the cost of all social care services and all private providers combined. You’d think the uk would be grateful? Think again

Today, carer  @GallusEffie tweeted the following stark reminder

5 Rights I do not have as an unpaid carer

1. I have no right to a living wage. I earn about a tenner less per week than Jobseekers;

2. I have no right to an occupational pension. ( I’ll have no right to carer’s allowance as a pensioner either, if ‘X’ & I are still alive);

3. I have no right to a normal day off, emergency or sickness cover. We do get some respite, but that’s not law, it’s luck;

4. I have no right to training or Health and Safety at work to protect me from moving and handling issues in particular;

5. No European Work Time Directive for me. I exceed 100 hours of caring every week of the year.

It is not surprising that a survey of over 4,000 carers by Carers UK has found that almost 47% are being made ill by money worries. I’m only surprised it isn’t more. Many – indeed most – carers struggle with dreadful daily conflicts between work and care, and an estimated one million have had to give up work or reduce their hours. This loses them an average of £11,000 a year. And often a lot of freedom, companionship and self-esteem in the bargain.

Its a big price to pay for love. Yet carers don’t expect to be thought of as noble: they do it because there are no other options . But it isn’t surprising that they would rather be thought of as the workers they are.

On top of lost earnings, caring for illness and disability also bring increased costs. There are  higher household bills, ones for special equipment, foods, medicines, transport  -and heating is a terrible problem for people who may be permanently at home and relatively immobile.

There’s a wolf at every carer’s door – and over 4 in 10 say caring has pushed them into the red. And as money worries cause stress, its hardly surprising almost half of the carers who responded to the survey said they were suffering from anxiety and depression because of concern about finances.

Yet when the government pays for respite by an outside body it is in real terms and therefore  at a rate that would stagger you, considering how little the carers themselves are required to exist on. Last year I saved up my respite hours and got a 5 day respite from fulltime care –125 hours. This was lovely, I went on honeymoon. But the cost of this care was more than I earn to support my entire family for a month. It may sound contentious but maybe if this kind of money was ploughed into the carers’ lives rather than giving them a break from it, they might need less of a break. Carers need circuses as well as bread: and what use is respite care if you can’t afford to do anything in your time away.

So what to do? strangely there are not many people on the political right or left who wish to acknowledge this problem. Possibly because all past governments have been uncaring as to the carers’ plight.

On the right, there is a lot of head-patting and the suggestion that “if only the magic money fairy existed” all could be made better…but sadly the right don’t believe in fairies.

The left wing tend to refuse to acknowledge the situation at all, in case they might have to admit their past share of responsibility. For example, over the last couple of days whenever I mentioned how badly carers have always done under various governments,  certain types of people have refused to acknowledge this as a problem. They skate over the subject completely, returning instead to the iniquitous terms and conditions of various waged, pensioned, holiday-and-sick paid employees.

It is clearly more comfortable for these people to argue the case – for example – that paid care workers are disgracefully badly paid. Which is incontestable – but hardly relevant comment to the plight of the unpaid person working a weekly 168 hours. (Yes, thats what 24/7 caring is: 4.5 weeks work every week. On call, night and day, without let for years – decades, maybe. And all for a carers allowance of 33p per hour if you don’t earn anything else.) This isn’t a hardship, contest, folks. But if it were, unpaid carers would win hands down.

So what’s to be done?

I suggest a serious revision of how carers are supported and viewed. And looking it I don’t think its unduly expensive or ambitious. Just common sense. As follows:

Ensure the state counts the Carers allowance as a wage rather than a benefit, and awards it separately from earnings or other benefits(exactly as DLA as awarded to those who are eligible) rather than clawing back sums in the long-established Scroogery that currently exists.

The government should further relax rules on other employment to allow carers the ‘luxury’ of being able to work, and have some non-caring life outside their responsibilities.

In return for the carers forgiving the government for giving them an allowance so much beneath the minimum wage , the the government should agree pay into the equivalent of an occupational pension for carers to accurately reflect (ok at minimum wage) the real hours spent caring. This could be established by reference to the cared for’s DLA returns and would give carers the prospect of a securer old age after all that work.

There should be a real and appropriate scheme set up to train carers for real , satisfying jobs when their caring roles (often sadly) end. This isn’t a luxury – it is a reward for all the unpaid work they have done without prospect of career advancement.

(I don’t think we can afford to do much about the European Work Time Directive or the sickness cover although, when this country was prosperous we jolly well should have tried to) beyond recognising and respecting those 168 hours on duty each and every week ill or well.

We rely on the love carers feel for those they care for to save the state the real cost of that care. We, the people of the UK need to remember that Carers ARE the money fairy. Tell me who else gives £119bn a year voluntarily to the state and expects so little in return?

Its time for a change.

Carers – who will strike for them?

I am sitting here contemplating likely chaos on 30 November and thinking that its a shame that carers have no union. Carers have no pay, no recognition, and most of all no wonderful pension that they can drop all their responsibilities for and come out and strike about on Wednesday next. If carers could, and followed the example of the others who are striking, we could say our strike was for for a greater good, that we see no collective responsibility for the individuals we may damage in the process, and that the longterm advantages outweigh every other consideration.

But we can’t. We are carers because we love those we care for – and thus are sitting ducks.

I’m thinking – as I listen to good, solid, left-wing speeches about ” supporting the workers” – that its about time the left wing drags itself into the 21st century. It needs to recognise that nowadays “the worker” is the lucky one – sympathy and support should be focused on the plight of those who the state has left unsupported and unable to work.

(And yes – New Labour, Old Labour, wet and dry Tories – not one of you has given a monkeys for the plight of this large but clearly unimportant group. For all the care you have had for carers they might as well have been a rural bus route!)

The public sector worker works long hours, unrecognised, for the good of others? Very true, some do. Others earn very large salaries on very specious grounds and do very little in return, explaining, rather like bankers, that they earn a market rate and if you don’t pay it, the best candidates will go elsewhere. (I am thinking here of certain past Council Chief Executives). The public sector worker earns less than the market wage to support society out of a sense of duty? Maybe. Some are health workers and emergency service workers and other ‘frontline staff.’ . Others are about as near the front line as a WW1 general – and earn many times more than the troops in their trenches – but the unions represent both impartially.

Carers work much longer, much less recognised hours than nurse, or teacher or chief executive. Do carers get holiday pay? Hell, they don’t even get pay – and are often stigmatised by the Uncaring Press as shirkers or work-shy, to boot. Carers don’t get sickness pay or pension contributions. They are workers that the state has never bothered to support, or unions to represent or fight for. No one has cared to join forces and strike to give them ANY alleviation or compensation for all those long long hours of ungrudging – but uncosted, unwaged, unpensioned and unrecognised – work they do to save the public purse. Labour and Conservative governments are closer than they recognise.

Ok, I must declare a personal interest. As many know , I an a 24/7 carer of a young person with a disabling and highly dangerous condition which needs constant supervision and specialist care. Until very recently I was also a lone parent (of 3) – and as such I had to fit my earnings, and family life in general, around this care. For seven whole years I had no help from the local authority or government because of a system so sloppy, un-joined, un-focussed  and uncaring that nobody felt a need to respond to my enquiries, tell me of entitlements,  or fight on my behalf.

This is one of the reasons I entered local politics. Nobody should be in the position I was in.

I’m not whining. We all survived and no-one was (much) the worse for it so far, but one of the things that suffered very much indeed was my career and with it my chances of a reasonable pension to support me after all the years of working flat out.  It is impossible to be a full-time carer and full-time worker – and it is equally impossible to pay for the level of care needed unless you earn a banker’s – or a Chief Executive’s – wage. (For those who are interested, I solved the problem by writing. If  you make that deadline online, nobody knows you filed your copy from beside a hospital bed).

But why are we carers not recognised by unions? Why haven’t the unions fought, walked out, picketed on our behalf? Because carers are not ‘workers’? In supporting their well-paid workers in this selfish strike, the unions are victimising both the carer and the cared for with what seems (from the outside) an arrogant lack of care of those who truly need it – and an astonishing insouciance about the consequences of their actions.

My child has waited 6 months for a specialist NHS appointment in London, on November 30th. I am hoping – praying – there will be sufficient goodhearted ‘scabs’ for her to be seen, because otherwise there’s another six month wait. Assuming we can manage to travel to a central London Hospital on that day. No thanks to the unions.

In a debate on twitter today I was told that if the “race to the bottom” on pay and pensions is allowed to go ahead, those who have no choice because they are ill will look back on these days and ask us why we didn’t fight harder

I pointed out that if my child died because the strikers were looking to the future rather than caring for her present, she will never be able to look back at all. And I will look back on each and every striker with such rage, you would find it hard to believe.

Whereupon a – I am sure -personally nice and caring person tweeted the weaselly evasion to end all weaselly evasions:” taking a step back how can an individual withdrawing their labour in say, border agency be held responsible for what may happen to your daughter? “

Come on. A collective intention to strike with the intention of exerting collective pressure to gain collective benefits MUST be accompanied by collective responsibility for the harm you do.

And whether you keep those pensions (which so much more generous than outside the public sector), or whether you too end up in no better position than the legion of unionised workers who accepted major changes to pensions under the last government without a SQUEAK out of you, remember, please the pensionless carers and those they care for.

They have never received any of your benefits -but they will suffer from your industrial action