Wednesday, 30 July 2014

A Carer's Journey

To mark the halfway point in the last 100 days of the campaign period, here's a wee change of pace for you  - a guest post by Fiona Fisher, who appears on Twitter as @galluseffie and is a full-time carer.  I'll leave you in her capable hands and see you soon.


A couple of weeks ago, I had a wee exchange on Twitter about the outpourings of Professor Emerita and how she'd twisted something Prof Curtice said, making a negative comment about Yes voters and their likely educational demographic. As part of my response, I mentioned that the only treatise I was ever likely to write was “My 20 years of being treated like shite by the UK Govt. AKA Being a family unpaid carer ”.

I got an encouraging tweet from Rev Stu of Wings Over Scotland to write something because “real stories count”. I haven’t read much about carers' journeys to whatever decision they’re likely to take in the referendum; I suppose it’s symptomatic of the deep disenfranchisement we feel about getting heard in any arena. So here’s my take.

My name is Fiona Fisher. I live in Dunfermline with my ever excellent husband and three children: two lovely girls and our son, The Bold Joff, our middle child, who has an ultra-rare, life-limiting and life-threatening genetic condition called Lowe Syndrome that affects males only.

Lowe Syndrome is caused by a genetic mistake on the X chromosome that affects the quantity and quality of a certain enzyme in the body, causing a spectrum of problems, in the main with the eyes, brain and kidneys. Boys with Lowe commonly die in their teens and twenties. There are only two other people known to have Lowe in Scotland, but there could be somewhere up to 10 males as the incidence is thought to be one in 500,000. If you’d like any further info, please feel free to tweet me.

Joff is a lovely young, gentle, man who has PMLD (profound and multiple learning difficulties).  He is registered blind, cannot read, write or talk, is doubly incontinent, has epilepsy, low muscle tone, and has Fanconi syndrome in his kidneys, which means he has to take a bunch of medications, multiple times a day, to maintain normal body chemistry and cannot be fasted from fluids. He can manage to walk and crawl about indoors, where the areas are safe, short and predictable, but has little stamina for longer distances and needs a wheelchair outdoors.

He has lots of other support needs, too numerous to mention here, but we have new concerns with a scary loss of bone density as a result of over a decade of anti-epilepsy medicine and he is facing surgery next month for recurring infecting cysts on his face and in his groin. I always hate writing this sort of paragraph about him. Yes, he has a lot of things to cope with. Yes, it is hard, for him and for us. He is a 19 year old man who is entirely dependent on adult support in every area of his life. But he is worth every struggle and more. I’m extremely proud of the cracking wee guy Joff has turned out to be. A Bold Legend.

When The Bold Joff was born we were living in Lossiemouth, as my husband was serving in the RAF. I was always reasonably interested and engaged in politics, but having a child with such profound disabilities from birth really opened my eyes to how families living with a child with additional needs are supported.

Without hesitation, I will say that Joff is the easy bit of the equation. Fighting constantly at every stage of his life for good services and support has been simply fucking brutal. I have fought long and hard for everything from getting decent education, incontinence products and respite services to wheelchairs and syringes... Oh god, don’t start me on syringes.... The transition period from accessing children’s services to adult services is, I’m convinced, part of one of the seven circles of hell.... add into all of that an ultra rare syndrome that hardly anyone knows about or has seen in the flesh and it's a potent mix for stress, isolation and financial worry.

I was a biochemistry graduate in the mid 80s, I trained as a haematology MLSO (lab technician) with the NHS in London, as I couldn’t get any work in Scotland at first. Cheers, Tebbit, I did get on my bike. A few years later I worked with the Scottish Blood Transfusion Service, then swapped to whisky analysis with Chivas Bros in Moray just before I had our kids.

After Joff arrived, paid work was impossible. To do a job from 9 to 5 and then come home and start all over with Joff and our older daughter, who is just 14 months older, was entirely unsustainable. That is, if you can even get a hold of decent childcare for a child with disabilities that doesn’t entirely wipe out your wage. The truth is, care costs. A lot. And specialist care costs even more.

Unless you’re a family unpaid carer.

Another topic on my Twitter timeline recently was how someone had said “caring is only a bit of extra housework”. And yes, for some people, help with essential housework is what helps support their needs, so I’m not entirely knocking the statement. However, for our family, like many families, a day of no housework just means a bit of catching up later; I can live with oose on my carpet and dusty window ledges. If I don’t care for a day, Joff dies.

I hope that shows some of the passion and anger for our situation. So how do the facts stack up?

My caring week is 133 hours long. Every week of the year.

The other 35 hours in the week (similar to many people’s working week) are when Joff is at his local day service. However, I’m always on call for any problems he might be having. So it is true to say I’m really never off duty. For this I’m currently paid £61.35 Carer’s Allowance (per 35 hour week of caring - ha ha ha, I WISH!) with an annual £10 Christmas bonus, whoopee!

Carer’s Allowance is about a tenner or so below the weekly rate of JSA, and the lowest UK benefit of its kind, so unpaid carers have totally understood the concept of Workfare long, long before the media ever picked up on it. It works out at under £2 per hour. It’s not a wage but “earnings replacement”. Hey, would you like your current wage “replaced” by £60 a week if you had to care for a friend or loved one and had to give up paid work? Oh, and that’s not even going into the extra conditionality of not being able to earn more than £102 a week before the allowance is taken back, not being able to claim if you’re a carer pensioner, or in full time study. Or regardless of the number of people you’re caring for. All penalising the already most shat-upon, non-unionised, hard grafting sections of society.

My probable loss of earnings over 20 years is easily in the region of £1/4 million pounds. I can’t even begin to estimate the loss of my occupational pension, of the camaraderie of colleagues, of professional development and recognition. The likely cost to the UK taxpayer if I had given up caring for Joff tops a million and a half pounds, without including the cost of lifelong therapies that we’ve applied: physiotherapy, occupational therapy, speech and language therapy and therapy for the visually impaired.   

The collective caring benefit to the UK economy was valued at £119 billion in 2011 in a study by Carers UK and the University of Leeds. It was estimated that if 3 out of every 10 carers in Scotland gave up caring, we’d bankrupt the country in a week. And Westminster has the bloody neck to call us “economically inactive”.

My total earnings for the past 20 years is £47,281.25. That’s not per year, that’s for 20 years round the clock caring, with no right to time off, emergency or sickness cover, an occupational pension or any health and safety training, particularly moving and handling. Unless you count the 10 minute instructional video I saw on my own in an awful wee side room at the Victoria Hospital in Kirkcaldy about how to administer rectal diazepam, by way of demonstration on a mannequin, to stop a prolonged seizure. Glory days.

So what has the UK government ever done for me? Apart from the jet set lifestyle it’s given me, when I asked the DWP a few years ago why unpaid carers were exempt from the European Work Time Directive and why we weren’t paid a wage, I was told I wasn’t working, but “playing a role”. I think they call that adding insult to injury.

At the time Joff was going through an unfortunate phase of smearing faeces in his bedroom at night. How I loved remembering what a role I was playing when disinfecting a soiled boy, his bed and the walls at 3am. Thinking about the then Minister for Disabled People and Carers claiming almost twice my yearly income on her spend for stationery. Thinking how I could be paid over three times my hourly rate to chop lettuce at Maccy D’s. Such Esteem. So Valued.

But, happy memories aside, how does Westminster intend to maintain the scant support for me to be able support our son in the coming, increasingly austere, years? It doesn't. For example, it intends to tighten the eligibility of receiving Disability Living Allowance (soon to become PIP, Personal Independence Payment) and it is entirely possible due to the new, and currently being contested, ”20 metres rule” that Joff will be judged as not needing his entitlement to his Motability car and as a further consequence, I will lose my crap-but-necessary Carer’s Allowance. I would genuinely be caring for nothing.

And I am gobby, I can appeal and complain and do my best to restore Joff’s rights to a good life with every bit of support I can find. Indeed, it’s part of the obligation Joff’s dad and I took on when we applied to Court be his lifelong Legal Guardians under the Adults with Incapacity Act 2000. What about all those many vulnerable people, who don’t know their rights, who don’t have the luxury of a nice home, the internet and a close family to support you?

My journey to Yes was extremely brief; part gut instinct but mainly cold headed logic. I continue to test every No argument I hear to see if they hold any merit, and they never do. I’m completely confident about the vote I will make. We deserve a Scotland that is fairer, is just and looks after everyone, and especially to do what’s right by her unpaid carers. In the long run, I’d like us to be paid a living wage for the work we do, and have some enshrined rights to support us to complement the extensive responsibilities we’ve always had.

The first positive step towards fairness for unpaid carers in 20 years has been the recent promise by the SNP to raise the weekly rate of Carer’s Allowance to be the same as a Job Seeker. By comparison, Nick Clegg will write into the 2015 LibDem manifesto for 1 million ( of 6 million ) carers to get a one off annual uplift of £125, rising to £250 in 2020, to perhaps offset the cost of a bit of respite. That wouldn’t even pay for 12 hours care. Where do these people get these half arsed ideas?

I don’t want a Scotland to continue to be ruled by an increasingly unfair, right wing, aristocratic and tawdry Westminster. I don't want to hear any more about non-elected £300 a day Lords, coming the big shot and moaning about the quality of their subsidised in-house cappuccino, while someone in Maryhill is walking miles to the food bank so she can eat cold baked beans out a tin with her hands. That’s simply obscene.

Carers may feel fearful about change, which will undoubtedly come whatever the outcome of the referendum, but we’ve certainly nothing much to linger back for either.

I don’t think it’ll be all rainbows and glitter after a Yes vote, I think we’ll go through a period of rebirth, which as any fule kno, is never easy. And if iScotland isn’t immediately "perfect", like the Bold Joff, we’ll still look after her and support her because she’s ours and we’ll care for her in the right way. And if you really care for Scotland, she’s worth every struggle and more.

A wee bit of fun to finish with. During Carer’s Week (sigh) last month, Richard Branson tweeted a picture of himself raising a mug of tea to unpaid carers to laud all the “amazing things” we do (pinch me, mama, my troubles are over). Tell you what Richard, file your platitudes away with the other 20 years worth of vom-making “unsung hero” pointless toothless rhetoric and come back and tweet congratulations to us on the 19th September, when the "amazing things" begin for us all.

Fiona Fisher

Vote Yes 18/9/14  #Indyref


  1. Thanks Fiona for this great piece. Eye opening and funny. I hope 19th September is the start of something much better for all of us.

  2. Interesting article. But you see, Fiona, you are part of our wonderful Big Society which that man-of-the-people David Cameron so cares about. I'm sure he admires your work, especially if you do it for as little money as possible. But don't bother your pretty little head about voting Yes. You should vote No because the millionaires in Westminster know what's best for every carer. Have faith in the Big Society and take pride in the fact that money wasted in an independent Scotland is better spent on Westminster's next war, and the next installment to pay for WMD. Chin up.

  3. You are a National Treasure dear.

  4. Hello Fiona, it's been a while since we last 'met' on Fittie's website. It's good to see you're still fighting the good fight and that Joff is still going strong. All the best to you and yours.

  5. Thank you for writing this, those of us whose life doesn't include caring for someone have only a very vague idea of what your life is like. About Branson though, as well as congratulating us all on an independent Scotland, he would be less of a hypocrite if he paid his taxes. He is the reason people like you are not valued financially in this country.

  6. Fiona - I have to admit, my yes vote is partly hopeful and partly "we must be able to do something better than THIS!
    Jacqui law posted your blog and I clocked on to it.
    Peter, my son has no physical disabilities, but does have Learning disabilitirs, asd traits and a rare chromo disorder. He "looks" ok, till you get to know himand you realise that things are not ok.
    I thought (stupidly) that David Cameron would have some empathy. He did after all, have a disabled son himself.
    No chance.
    I don't want someone like that deciding out future, so yes it will be!!!