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

"My life before caring was bliss. I worked in the public sector and was outraged at the austerity measures being imposed on public sector workers. - I didn't know I was born"

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.

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? )

Hope is the thing with feathers That perches in the soul And sings the tune without the words And never stops - at all

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

 

 

Shout out if YOU care for carers!

Carers: we can't see you, can't hear you - so we won't recognise your existence or speak on your behalf

I came back from the pharmacy today with a mega bag of pills. You wouldn’t believe it, but in the next six weeks I’ve got to take 973 prescription tablets – and that’s if I don’t need the odd paracetamol or aspirin. I’ll also have to have 3 different sets of blood tests to check whether the more scary of these pills aren’t poisoning me. Erk.

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..

Why?

I eat healthily. I walk, I swim, I cycle every week. I don’t smoke. I drink alcohol, but not to excess.  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 Ms Fitty, and have been since the start of the millennium. Which means that over that time alone I have worked more years of European Working Time Directive weeks than I have been alive.

In term of other carers’ lives, it’s not unduly onerous. I have other work which I’ve been able to fit around it. I have 14hours respite a week. MsF is mobile, thoughtful and cheerful – we get on pretty well for a mother and daughter. But I am permanently scared and it takes it out of me. And she is scared, and it takes it out of her – and me too.  Six years ago I was a different person, healthwise. Run ragged as a lone parent and sole carer, but fit as a fiddle. Finally, it has all caught up with me..

Ms F has taken to choking and stopping breathing, generally in her sleep. If I hear a strange noise, day or night , I run to her and pummel her back and she stops choking and starts breathing. But do I hear her every time? I don’t think so.  Imagine never, ever, waking up without wondering whether your child might be dead?I wonder that , every morning that I wake.  She does horrible things like having seizures in the bath (you are 16 to 18 times more likely to die in the bath if you have epilepsy – but she adores a bath so we make accommodation). She will drop down the stairs at a moment’s notice. I am pretty certain that one thing worse than having horrible intractable epilepsy is having horrible intractable epilepsy, and being quadraplegic. Her short term memory isn’t good. She microwaved a pie in a metal case for 4 minutes top whack today, before I stopped her. For one reason and another, she can never, ever be left alone.

Basically MsF has a choice of a safe life wrapped in cotton wool  or the life she would rather lead – and the stress of supporting the latter is very hard.

So, who cares for carers?

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. We might as well be invisible

So where do we go from here?

HOW can we shout and be heard when everyone around us, the whole of society, is playing the three monkeys as hard as ever they can?

Are we carers only to survive on the kindness of carers?

Only 469 carers have signed up to the Carers’ VIrtual Strike to date – 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 £61.6 MILLION  a year!

And 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 MsFitty – 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 blah blah blah will suddenly stop navel gazing and start talking of  our plight because they will see in our plight something for themselves.  Leeches!

So, carers, 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. Not as much as we care, obviously. But even a little bit would do..   Get them to say to the world #ICareforCarers – (and then ask them what they mean by it!)

Carers can’t be ill – there isn’t time

What do carers do when they’re ill?

Ill? Don’t make me laugh. Carers can’t be ill, there isn’t time.

For me, the stress of double-working every hour there is  (yes, folks, work. I can’t sit around in a saintly fashion, smoothing brows and mooing “I caaare“, I have to earn a living, you know. Carers don’t live on air) – this stress kickstarted  a couple of medical nasties of my own.

“How long have you had these symptoms?” the consultant asked me, when he finally diagnosed inflammatory bowel disease.

“Oh, about ten years,” I reply.

“No, I mean, how long have you had these acute symptoms?”

“Oh, about ten years.”

“Why on earth didn’t you do something about it?”

“Er…”

I feel foolish. Its impossible to explain to a non-Carer how invisible a Carer is, even to themselves. The state doesn’t recognise your job, neither do the Unions. To healthcare givers you are generally the nuisance who challenges their pronouncements. For me, ten years of pain was merely a background to the horrors of Ms Fitty’s adolescence, when she spent several years at death’s door – and I at the doors of A&E.  I put pain was put aside for a more convenient time. 

Another grim aspect of our grim lives.

But I digress

Many other carers around the country are  minimising their own health problems. How ironic, when they are brought on by relentless hours and lack of any support.  Use us up and spit us out – and then wonder where the funds are to pay for the £187,000 yearly cost  to replace all that we’ve done freely and with love, why dontcha?

O, and think of this, next time you fancy a sick-pay-funded  duvet day because ‘modern life is so stressful!’ (sorry, that was BILE speaking)

So today I am feeling truly terrible. I’ve a slowly subsiding Crohns flare, and my innards hurt. The disease is being blasted with heavy duty steroids, and these have ensured I have slept no more than 3 hours a night for the last 3 weeks. The extreme lack of sleep is interfering with my temporal lobe epilepsy (another consequence of relentless, unsupported caring) and I see flashing lights every time I  move my head.

In short I feel shite.

Ms F is on her last ever day of college (see Groundhog Day. They wanted her to leave on the spot, last week, like a bad dog – but she held out for coming in today. She pointed out that everyone was bringing in cakes today, and she didn’t want to miss out. Fairly typical that in their haste to get rid of her they had not thought of her as a person at all who would like to finish a term like anyone else) . I might have some hours without interruption, just to lie and be ill.  Ones where every silence doesn’t suggest suffocation, every crash the possibility of broken tooth or bone, and where  every conversation isn’t tempered by the confusion of a thousand hidden absences.

But – these are my last free hours for a while and I have so much to do.   I lose a full 12 hours of tomorrow because Ms F and I have to travel  to the National Hospital, and Thursday is looking like a day from hell onthe work front.  If I work now, I save myself more trouble later. Unless I make myself so ill,  that I  cause myself more trouble later.

And I’m pretty certain I  can’t trust myself on a bicycle.

Choices, choices..

Between the devil and the deep blue sea once again..