Support

“We are lucky..” The 91 year old carer

A letter from my indomitable friend Sarah, who is a fulltime carer – at 91 – to her 92 year old partner of half a lifetime, is full of cheer and optimism:

The situation here is much the same but with improvement – I can now read to X from ‘The Irish Times,’ ‘New York Review of Books’ and from novels, Parks, Tobin, Ford, Stroud, Sebastian Barry…

I attribute this improvement in X to: being in her own home; routine; kindness of friends, and carers. X is now 92 (I am 91!) – We’ve been together for 46 years. I am chief (of course) carer. I rise at 6.30 am, get myself going (breakfast/shower). At 9am the morning carer comes, sets X’s  breakfast, shower etc. Then I drive us to buy newspaper and to a local beach, hill…. The morning carer is paid for by the Health System (1 3/4 hours). The rest of the day (lunch/dinner) I officiate. We pay a carer to get X to bed. Our carers are very kind and good and competent. We are lucky..

O to to have such posititivity and indomitability. I am overcome with respect and admiration

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Guest post: “I’ve lost £100,000 in earnings in two years of caring” – and ‘Outraged’ has also lost her life..

Outraged writes:  “My life before caring was bliss.  I worked in Ireland, in the public sector and was outraged at the austerity measures being imposed on public sector workers.

I didn’t know I was born.

I moved back to the UK two years ago when my mum was diagnosed with a brain tumour.  She had worked fulltime but was also a carer for my sister who has cerebral palsy.   I now look after both of them as they are very physically disabled and thus very physically dependent.

The support family carers can get from the state is abysmal. It is also means-tested.  I am expected to fund respite care top-ups on a carer’s allowance.  Bear in mind the allowance is £61 per week regardless of how many people you care for, and tops-up range from £50-£200+ per week.

I cannot work – no employer wants someone who can’t be flexible, who has to leave work regularly or can’t stay back because of myriad hospital appointments, blocked catheters, toilet calls, or most frequently of all – to pick up the personal care tasks that care agencies won’t do…or more usually don’t do safely.  I have to supervise carers, or  else they would mobilise my mum unsafely -sinks are washing aids, not standing aids!  -they don’t change their gloves (they don’t pay for this PPE unlike me) – I’ve stopped carers from taking stuff from my fridge because they had my sister’s faeces on their gloves; -they leave our front door ajar ALL THE TIME.

The state pays £400/week to these agencies for providing 33.25 hours of care.  I get £61/week Carers Allowance for 118 hours.

The red tape is endless… disability allowance, carers allowance, personal independence payments contracts, housing benefit, means tested assessments for housing support services, care in the community services, pensions credit, support with health costs, carers leave application to my employer. These are reviewed annually.

On a daily basis I am to my carees:-  *  Nurse,  *  physio, *  PA, *  secretary, *  social services advocate, *  chef, *  cleaner, *  chauffeur, *  personal shopper, *  limb-mover,*   pharmacist, *  debt manager, *  banker.  I feel like I do so much more, I am that tired.

I’ve lost circa £100,000 in earnings in two years of caring.  For this the state offers me £60/week.  No pension, no sick pay, no holidays and if my carees go into hospital or respite care then I lose that £60 too.

My work and friends are in Ireland, my partner is in Ireland, my home is in Ireland but I’m here.  I’m only 34, I want to have kids, I want my life back.  But that will only happen when they die, and then it’ll be too late.

3 in 5 of us will be carers at some point in our lives, and that figure will likely grow as life expectancy exceeds life quality.

I say to all you non-carers who happen to be reading:  enjoy your life whilst you have it, the state will not permit you a life as a carer.In fact, if it could means-test my nostalgia it probably would.

Carer With Attitude says:

If you are altruistic and want look after those you love, and save the NHS and Social Care departments  from having to pay the going hourly rate for paid care (in this case £12 for every daylight hour), should the state really expect you to  give up your life, your career, your future, your family,  as well?

Seems so.

Yet MPs (every single one of whom have failed to help the family carers they all represent)  tell us they are being altruistic to live on that teeny weeny little £67k  they get  as basic salary (plus generous expenses to cover the costs of running an office.. staff..somewhere to live..ok several places to live.. travelling ..silk cushions.. duck houses… moats.. moles…You know how it goes) And they seem to be allowed extraordinary licence in their expenses claims. AND many get seeming immunity from prosecution, censure or  dismissal when they go beyond licence to downright fraud.  

Iain Duncan Smith thinks that  £61 a week Carers Allowance is generous recompense for Outraged’s  altruism and hard work. He also thinks £39 is a reasonable amount for himself to try and claim for a single breakfast* to line his lardy, smug and self-entitled tum.  Think about that for a moment.

I wonder how many years Outraged has spent getting qualified?  WIkipedia points up Duncan Smith’s qualifications as pitifully thin when the truth was told.   Wouldn’t the world run better if  the Ian Duncan Smith  ‘learned on the job’ for a while, as fulltime carer discovering for himself the realities of working round the clock without acknowledgement or comfort whilst trying to survive on £60 a week?  Thus allowing Outraged to fulfil her considerable potential through the career and life she would like to lead?    Answers please!

The next Carers Virtual Strike will be on 21 November 2014.

*his claim was submitted – but, thank goodness, not accepted.

Carers Week? I’m only a carer, I didn’t notice..

So fellow Carers. Tell me ONE thing that has improved for you because of Carers Week? Don’t all speak at once .

In fact, what was Carers Week about?  I go to the Carers week website and I read the following, which frankly makes my blood boil:

Caring can be a rich source of satisfaction in people’s lives. It can be life-affirming. It can help deepen and strengthen relationships. It can teach you a multitude of skills and help you realise potential you never thought you had.

Gah! Please don’t patronise us. If you want to professionalise us, pay us.  And if you can’t afford to pay us – and the UK NHS and Social Care system is reliant on not paying 7million carers to do most of the caring work in this country – just shut up blethering, why dontcha and start thinking hard how to make our lives better, ok? We carers can judge how  ‘richly satisfying’being a carer is for ourselves.

But without the right support caring can have a devastating impact. 

No shit, Sherlock.

Evidence shows that caring can cause ill health, poverty and social isolation. When caring is intensive and unsupported you can struggle to hold down a job, get a night’s sleep, stay healthy and maintain your relationships with friends and family. 

Or you might not even be able to hold down that job, get a night’s sleep, stay healthy and maintain your relationships with friends and family. I mean have you – the person whowrote this –  personally tried to work 168hours every week without a break? No? Omigosh, no, you are merely working for a charity that talks about carers. You work European Working Time Directive hours, don’t you? You get pay? Sick pay? Holiday pay? An occupational pension?  Nice. You can leave work at the end of the day and go and do something else.  You can meet your friends in a bar at the end of work to say how hard work is – because for you, the concept of ‘after-work’ actually exists. You have weekends and bank holidays to yourself. You must really be able to empathise with our lot

“When caring happens, many people are shocked to find out just how little support there can be. Help is often out there.”

We both know this to be total rubbish. Help is almost never out there. The pretence of help,  the illusion of support – lots and lots and lots of words… but actions? No there are not a lot of those.

 During Carers Week events take place all around the UK to involve carers and make them aware of the support and services available.

Hah! I didn’t hear of a single solitary thing around where I am. Nobody contacted me. No-one involved me. The support and services on offer were what they always have been.  Nonexistent. Lets be frank –  when it exists – if it exists  – it isn’t support. And it isn’t services. Its a series of halfbaked initiatives and pats on the head from organizations too timorous to lobby, too embedded in the status quo to campaign, and too fond of their own comfort zone to extend themselves for the people they are paid very decent salaries to support.

Here’s a suggestion.

All you who think you are doing a good job supporting carers? Why don’t you do your job and stay in the building night and day for, say a couple of months on end. Don’t accept any pay. Work whether you are ill or not, and do nothing else whether you want to or not.

Live on that carers’ allowance that you make such mileage of supporting us to get. Really allows you to live it up big-time, doesn’t it!

Want to take a break? Go out to a village hall for a scant hour and meet workers from another carers charity  and sit in a set of rickety chairs  next to each other, drink a cup of instant coffee and make conversation. You have so much in common – particularly that business of never being able to move from one place. Experience  the full delight of getting away from it  – you were lucky to have the cover and there was so much to say to each other. THAT should support you for another month.

They say that before you criticise someone you should walk a mile in their shoes. You should have to walk that mile before you think of supporting them too.

I am sorry. you big carers charities – what you provide is not good enough. Carers want more. Carers need more. Carers deserve more.  We need  people prepared to fight on our behalf. Where are they?

Sign up to the Carers virtual strike caretostrike.co.uk

Carers Manifesto: five simple ways too change carers’ futures

 

Recognition: the most important thing to give Carers

To ‘celebrate’ Carers’ Week, my local authority wants to know the MOST IMPORTANT thing that might make my life better as a carer. One?  Believe me, there are too many  MOST IMPORTANT things! Here are a handful:

ONE MOST IMPORTANT thing:  An end to the assumption by people who are paid for their work that because you are an unpaid carer, your time has no value. Our last 2 Social Worker appointments were cancelled at 10 and 25 mins notice respectively by a social worker who valued her own time much more than ours! She has a union and has working hours governed by EWTD. No union will represent carers because they work unpaid. And I work 168h every week and have done so with very few exceptions for this entire millennium. No contest!

ONE MOST IMPORTANT thing: An end to being treated as if the 168 hour week you have worked for love is nugatory – that because you were given no pay, sick pay, holiday entitlement, occupational pension entitlement you must be a fool.  I have an Oxford degree,  and was captain of my University challenge team while I was there. I’m bright enough, thank you. That thing you say about peanuts and monkeys?  its a cliché . And only fools believe in clichés. Just saying.

ONE MOST IMPORTANT thing: At last, an understanding of the on-costs and end results of continuing lack of support. Over six weeks I’m taking 973 prescription tablets – and that’s if I don’t need the odd paracetamol or aspirin. I’ll also have to have 4 different sets of blood tests to check whether the more scary of these pills aren’t poisoning me. I have high blood pressure.  I have inflammatory bowel disease, with add-ons. I have epilepsy.  I have developed all of these within the last six years – and I’ve now got further tests planned to see if I haven’t developed a fourth nasty. I cost the NHS an arm and a leg.  I feel as if Dracula had sucked every bit of goodness out of me – and yet I have to keep going.   Why?  I eat healthily. I exercise. I don’t smoke.  I have a happy and cheerful disposition, plenty of friends, a family I am fond of. I am even friendly with my ex.  BUT I am a full-time family carer for my wonderful, clever, funny and kind daughter, and have been since the start of the millennium.Over that time alone I have worked more years of European Working Time Directive weeks than I have been alive. I am exploited by the state as free round-the-clock labour. Something has to give. And there is only one thing that can give – me.

When I collapse (and look at the above) it will cost £130,000 plus to replace me for every year my daughter is alive.

ONE MOST IMPORTANT thing: for 14 years I have had to earn around unsupported care responsibilities and so I earn almost nothing. And as the big Carers charities are happy to pay ‘the market rate’ of over £50k for a fundraiser, yet see nothing inappropriate in spending their time supporting carers to claim the miserly £61pw  carers allowance (that can be claimed only by those earning less than £100 a week and  the oversight of the claiming of which, let’s face it, could easily be done by social worker, dwp, county council, doctors surgery, all sorts of well-qualified bodies )- rather than lobbying for big improvements  in our work-life balance – I can see no way to improve my current state.

This gives me less economic resilience to crisis. OK it gives me NO economic resiliance to crisis. When I have to take a taxi home from MsF in Intensive Care at 3am because I do not drive and there is no other way to get the 8 miles home apart from walk, the £40 it costs represents a crisis to the family.

So – plenty of MOST IMPORTANTs there.

I think if there really is ONE MOST IMPORTANT thing, that ONE MOST IMPORTANT thing would be some final true recognition every day of the year of the constraints and pressures that we carers are under and a real desire to ameliorate our lot.. And not the spurious, Carers Week  here today, forgotten next week encouraging mooing that  Carers Week consists of every year.  Final true recognition. From those who pretend to care – and who do not really give a damn.

Like that’s going to happen.

I’ve said this before. I say it again. Over the last six months I have been tweeting asking for support from  prominent social activists – and not a peep.

High profile  ANGRY people – silence, my dear, silence.

Well-known feminists. We female carers might as well be invisible. (Being a carer is not sexy enough for them to make their column inches, I  guess).

Newspapers, radio, tv – ditto, ditto, ditto.

Care organisations, government departments, health professionals, charities, political parties, unions. Nada, nada, nada, nada, nada.

Lets face it, fellow carers. Apart from a peak of spurious interest in Carers Week we might as well be invisible – and after Carers Week, we will be. For another year. I don’t count that as raising awarenessi n any real sense.

So where do we go from here? HOW can we carers shout and be heard when everyone around us, the whole of society, is playing the three monkeys and not seeing, hearing or speaking out as hard as ever they can? (Or if they choose to speak on our behalf, are very selective in what they say?)

Are we carers only to survive on the awareness of carers?  Unless someone cares enough to support me sensibly I will be one of the number that the state will have to find permanent cover for – a tragedy for me and for my daughter – and a horrible expense to the UK.

At which point – particularly if the circumstances were tragic enough – all the social activists and angry people and well-known feminists and media and care organisations and government departments and health professional organisations, charities, political parties, unions and the whole boiling of proselytisers and talking shops and ‘do as I say, not as I do’ so and sos  blah blah blah will suddenly stop navel-gazing and start talking of  our plight because they will see in our plight something for themselves. 

Pah!

So, please -seeing as its Carers Week – please SHOUT OUT if you care for carers. Try and embarrass this form-over-substance world of virtual activism  that doesn’t care a damn about the little people like you and me into caring for Carers. Not as much as we carers care, obviously. But even a little bit would do..   Get them to say to the world I Care for Carers – (and then ask them what they mean by it! And then see if they won’t put their money where their mouth is..

 

Only a few carers have signed up to the Carers’ Virtual Strike caretostrike.co.uk – a tiny proportion of our dispossessed and demoralised and unrepresented and uncared for whole – but to replace just these few would cost the state over £63 MILLION  a year! And all we are asking for is what this state should thing of providing just to prevent paying out that kind of money long-term: See  Carers Manifesto https://carerwithattitudeuk.wordpress.com/five-simple-ways-to-change-carers-futures/

 

 

X,Y,Z – personal responsibility becomes corporate failure

Yesterday I wrote a High Noon letter

Dear MsZapata [aka  my daughter’s absent social worker (MsXantippe)’s absent boss (MsYolande)’s very likely disaffected, clearly overworked maybe underbriefed and possibly unofficial stand-in],

Following my unanswered emails of Monday 2 June (to MsYolande) and my forwarded one to you on Tuesday 3 June, I note  MsXantippe’s email response of 3 June.

This is literally our first communication from Adult Care Services since MsXantippe sent a message cancelling our second appointment for a Continuing Healthcare assessment with us at ten minutes notice. This was four weeks after she cancelled the previous appointment for a Continuing Healthcare assessment  at 27 minutes notice.  I have blogged extensively about this and its impact on the vulnerable family carer, reliant on the respect and support of the social worker.

On 19th May you (MsZapata)  rang me three times to apologise for this, blamed ‘miscommunication‘  and told me that MsXantippe would contact us and apologise the following day, and rearrange the appointment. This did not happen – and I see from MsXantippe’s email that there is no suggestion in her mind that she should do so.  Instead she mentions – as if for the first time – a Continuing Healthcare Assessment. This is the assessment  planned since March which MsXantippe has personally stymied on two previous occasions by not turning up with minutes to spare on April 26th and 19th of May.

Just to put this in perspective: my daughter’s social worker moved on in autumn 2013. ACS made no attempt to replace her until this spring when we were told we have been allocated MsXantippe  but have never met her.

My daughter is currently excluded from college (since December 2013) for ‘being too ill.’ She needs the advocacy of a Youth Support Worker to negotiate an institution that is prepared to educate her and allow her to fulfil her aims and ambitions – but according to youth services a youth support worker only be allocated via her Social Worker.

My daughter is unable to take part in the swimming, cycling and running that she delights in due to extensive seizure damage to shoulder and knee joints. An operation is not possible until her seizures improve beyond what is currently likely. A year ago we found someone who could support her to improve movement, and Continuing Healthcare agreed they could fund it . This has not yet happened simply because Adult Services need to raise the invoice from Continuing Health. They have not done so. A year adds a horrible degree  of impact to joint damage.

Both exclusion and damage have had a knock-on effect on my daughter’s socialising, quality of life and independence.

I feel like we are in Topsy Turvey Land. How long will this inactivity and lack of support continue? How are you going to compensate my daughter for the impact that this lack of action is having on all aspects of her life – health, education, social care? She has already lost months of support in education and her health has gone downhill as a direct result of not being able to access the support offered a year ago via theContinuing Healthcare team.

Can I please reiterate what I wrote to you yesterday

a) My daughter has been out of education and unsupported by a social worker or a youth support worker for over seven months now. This is a disgraceful and inexplicable  situation . Young people’s services tells me that the only person who can appoint her a youth support worker is MsXantippe  – who cannot even be bothered to meet her own appointments with us

b) Continuing healthcare support has been held up for a full year by ACS’s lack of concern in implementing agreed plans.

c) In the interim the stress of the situation has had a severely detrimental effect on my own health and I am now under two consultants’ care for two separate serious chronic and dangerous conditions – either of which may lead to death. This is not promising, is it – particularly for my daughter’s longterm prospects? 

d) Obviously the stress is increasing my daughter’s seizure activity and stress levels.

e) I am relying on you to break this circle of apathy, incompetence and unconcern with an immediate response and plan of action.

If this is not possible – and I appreciate you may well be in the position of a firefighter – could you please advise me immediately of MsYolande’s manager as I wish to escalate this situation. 

If I do not hear by the end of today I am afraid I will have no option but to go directly to the top

f) And as we are something like 3 months on from when this assessment was first proposed, I am requesting it be replaced by an EHC needs assessment under the provisions the Children and Families Act 2014 of  http://www.legislation.gov.uk/ukpga/2014/6/contents/enacted which covers young people up to the age of 25 and would allow my daughter to have all her needs looked at simultaneously. 

She cannot continue to lose her life chances because of ‘falling through the net.’

Yours sincerely, Carer With Attitude

Readers, I received no response whatsoever to this email.

Consequently MsF’s situation has been escalated to the highest possible level.

Into the Abyss … (or Where is Care? )

I am becoming really ill.

And then what happens to MsFitty?

Always very active  I’m suddenly finding it very hard to get about. I limp from a – b. I feel as if all the blood has been sucked out of my body. I keep falling  into some kind of coma.

I’ve got two quite nasty things wrong with me – I’m in a lot of pain and on a lot of different drugs . These are  horrible in actuality and potentiality.  I have to have blood tests every 2 or 3 weeks. It is hard to know whether I’m suffering from illness, or side-effects, or conflicts between the meds. Or all three.

I’m very angry with myself for being a weakling, and I keep on pushing myself,  but the lists of tasks are endless, the responsibilities are mounting higher and higher and every day the world starts spinning and  I suddenly have to lie down. And every time I lie down I pass out…

In the middle of this we have had no contact from MsF’s social worker at all – no apology, no rearranged appointment, no word or email or letter or anything. We have had no contact from her boss – even though I asked her to contact me yesterday as a matter of huge urgency. And MsF has no Youth Support Worker to follow up her missing education. No-one is following up the fact that the education services just turned their back on her.

Ms FItty is fallen into the Slough of Despond.

So who is supposed to be ensuring there is a Youth Support Worker on her case? Well, bless me, it’s Ms Fitty’s absent, disengaged, unresponsive social worker. The one who hasn’t managed to raise the invoice which would allow Continuing Healthcare to fund their promised support for MsFitty for a full year now and thereby improve her life and mine.

We have fallen into a big black hole,

Yet Ms Fitty needs to be supported to finish her education, to improve her health, to live an independent life – and if anything happens to me, that need is more urgent than ever!

If I am not able to support Ms Fitty it will cost the Local authority a lot of money to replace me.  It will cost them a minimum of £131,400 a year, for someone to be by her side, day and night round the clock. Assuming there is no need for overtime, or holiday pay  or sick pay or European Working Time Directive anything else that MsF’s social worker  thinks necessary for her own existence, though not for mine.

If MsF and I had had reasonable support at all from our local authority, I might not be in the situation I now am.

I started the Carer’s Virtual Strike to make everyday people  understand  the stress and strain that we carers are under. Six months later, I feel as if I have been a voice shouting in the wilderness

Join the Carers Virtual Strike caretostrike.co.ukRealise that people like me cost a fortune to replace when you wear me out so recklessly and wantonly

 

 

Carers: was that a Bank HOLIDAY?

Was this a ‘holiday weekend’ for you the family carer, or was it just another couple of  long days like all the others in the year?

Perhaps this Bank Holiday was worse than other days because there was less chance of respite/cover/transport/shopping/medical assistance than at other times? Come on – get real. People have to take a break you know. Unless you are a fulltime family carer!

Hundreds of thousands – millions – of us UK family carers work round the clock for love. In conditions most people do not think possible. Yes, the people whoworry about the state of the world, who talk about sweatshops, who are angered about unpaid interns, who sign petitions and boycott companies to improve third-world working conditions – yet how many of you ever notice the army of unpaid unrecognised workers on your doorstep working every hour in the day for nothing?

If the word ‘holiday’ was a mockery to the day you lived today, sign up to join the Carers Virtual Strike (- here) .

For most people June 21st is  only the longest day. But this June 21st will be different. Because, this year, Britain’s hardest workers will finally go on strike.  A strike with a difference – we Carers will only be withdrawing our labour virtually. And so, unlike a real strike, our loved ones will stay alive and safe and protected.

Of course, we can’t go on real strike – because our loved ones would suffer – but we can demonstrate the real cost of the care we give and the work we do each day – not because we are saints, but because there are no other humane choices

Why are we striking?

You can read our manifesto here – FIVE simple cheap ways to revolutionise Carers’ futures. A plea for some kind of equitable treatment. To be seen as important by virtual  social activists, movers, shakers, insurrectionists, care organisations, government departments, health professionals, charities, political parties, unions.

Because, lets face it, fellow carers. We might as well be invisible.  And if nobody else will support us, the only support we can get is from each other.

Carers – what are you doing on Virtual Strike Day?

Yes, yes, yes, you will be caring. Of course. What else?   But will your soul be on Strike?

Join us!OLDWOMAN