Category Archives: Politics

Welfare Benefit Shame

People living outside the UK think that we Brits have a “free” health, care and welfare system.  It is not true.  We don’t pay at the point of contact, but every working person has money stopped out of their wages by the Government each month in the form of taxes and insurance to pay for our services – the more money you earn the more you pay but even those on minimum wage contribute.  Not only that, but the person who employs you contributes too – so the Government gets the money twice.

Our state pension, and welfare benefits for people who are ill, disabled or unemployed, are paid for through National Insurance contributions.  It’s a complex system, but most people on lower incomes pay 12% of their earnings while people on higher incomes pay 14% (we are taxed separately on top of that, between 20%-40%, so we effectively pay between 32% and 54% of our wages each and every month to the Government).  In addition, our employer pays 13.8% for each employee (and is also taxed separately on top of that!).   We pay into this Government insurance policy our entire working lives in order to receive a measly pension when we retire at the age of 67 and so that we qualify for welfare benefits should we be made redundant or become too ill to work.  However, the Government makes it nigh on impossible to claim welfare benefits.  They take our money, then when we qualify to draw on our insurance through illness or redundancy they refuse to give it back to us.  If this happened with a private firm we could sue them for breach of contract and we’d win, but because it’s the Government they are beyond the law – it makes me furious.

The reason the Government says it makes claiming welfare benefits so difficult is to discourage cheats, ie those claiming who aren’t genuinely ill or unemployed, however the Government’s own statistics show that only 0.7% of welfare spending accounts for fraud.  What they’re really doing with our money is spending it on less important stuff, like £50million to rennovate the Oprah House or billions on a new railway that no-one wants – we’d prefer they improved the one we already have.

You have to know your way around the system in order to get anything, which is fine is you have access to the internet and are intelligent enough to work out how the system works, but not everyone is that lucky.

Both my parents are nearly 80 and now disabled through severe illness.  They need help with all aspects of daily living, however our care system in the UK only offers help with meals, bathing and dressing – nothing else.  They will cook you a meal but won’t shop for the ingredients.  They will help you bathe but then dress you in dirty clothes because they don’t help with laundry.  They won’t change or make your bed.  They won’t clean your home.  They won’t help confused people do paperwork or take medication.  They won’t take you to hospital appointments.  They won’t help when things go wrong in your home.  The Government expects vulnerable, elderly, sometimes confused older people to employ someone to do all this stuff for them – quite how they’re supposed to cope with an employee’s tax and national insurance contributions, and manage when that person is ill or on holiday I’m not sure.  There are Home Care agencies who will do all the paperwork and provide staff for you, but they charge an arm and a leg for the care you receive so you can then afford less care than you actually need.

In order to help with the cost of employing help, disabled elderly people are entitled to a welfare benefit called Attendance Allowance.  Most elderly people don’t know about Attendance Allowance – it’s not like the Government advertises the fact that it’s available.  I only know about it because I’ve been ill for decades and the issue of welfare benefits comes up constantly on forums.  My Dad is now so disabled he can’t dress himself and can barely walk to the loo and back, so at Christmas I downloaded the 46 page AA form off the Government’s website and filled it in for him.  I knew what I was doing because I’d applied for my Mum 7 years ago when she became very unwell with chronic heart and lung disease.  I’m pleased to say that my Dad passed the test and is now able to receive AA.

My parents give me £30 a week out of their allowance.  I live 14 miles away from them and it helps pay for my petrol as I’m constantly tooing and frooing to their house, not to mention all the 60 mile round trips to the local hospital and the 180 mile round trips to the specialist hospital which costs me a small fortune.  It also helps for all the little, and not so little, things I buy for them and all the stuff I print off for them as these days everything from their Electric Bill to their TV licence is done online and they don’t have a computer.  My Dad barely drives now and the benefit helps pay for taxis to get them around town (there is no bus service near where they live).  They employ a cleaner and it pays her wages.  They can’t get out to shop, so I order stuff online for them and it helps to pay masses of delivery charges.  It paid for my Mum’s wheelchair and helped towards the cost of their stairlift.  By necessity they eat a lot of ready meals, which are much more expensive than buying fresh ingredients and cooking yourself.   And the 1001 other things you don’t realize that disabled people need simply in order to function.

If they didn’t have me, though, neither of them would have even known the benefit existed let alone had the mental capacity to apply for it and successfully fill out the very long and complex form.  Despite all their dealings with Occupational Therapists, Physios, our GP and Consultants not one of them has ever mentioned AA to my parents or told them how to apply.

The Ken Loach film ‘I, Daniel Blake’ was shown over the New Year on TV and if you haven’t watched it I urge you to do so, whether you live in the UK or not.  It follows the story of a man who worked for 30 years as a joiner, then had a heart attack and was unable to work.  He was turned down for sickness benefits and ended up destitute.  After months and months he was eventually granted an appeal, backed up by his heart Consultant and GP who both agreed he was too unwell to work but without spoiling the film for anyone who hasn’t seen it, it does not have a  Disney happy ending.  I was so angry after I watched the film I was beside myself.  I live in the 5th richest country in the world and more than half a million people used food banks in 2017 because they were so poor either they, or their children, were starving.  Starving because the Government won’t pay us back our own money when we need it.  And we are all allowing this to happen.  It’s my fault, and it’s your fault.  Why are we not protesting in the streets in our millions?  Where the fuck is our Opposition Leader, Jeremey-useless-Corbin?  Where are all our MP’s, regardless of party?!  I’m so ashamed of my country.

“The true measure of any society can be found in how it treats its most vulnerable members”. Mahatma Gandhi

Healthcare gender bias

I’ve written about this subject before but it still floors me when I read about the experience of women within the health-care system and the readiness of Consultants to attribute women’s symptoms to emotional or psychological factors.  I know some men, particularly those with M.E., who have had their symptoms put down to mental health issues but on the whole they are ten times more likely to be given a biological diagnosis and I haven’t heard of a man yet whose physical ill-health has been put down to hysteria or issues with their penis (I have heard, however, of women who have been told their womb is to blame!).

A friend posted a link to an excellent article on the CNN website about POTS which states that 80% of sufferers are women, a statistic which is largely mirrored in co-morbid conditions like hEDS, M.E., MCAS and auto-immune disorders such as Lupus.  The largest survey on POTS to date found that 75% of female patients were initially told their symptoms were psychological and a quarter of those were treated for mental health conditions they didn’t have.

What shocked me to the core in the article, however, was the testimony of female sufferers.  One was told by her Cardiologist “it’s a women’s thing” and her symptoms were all in her head (what fucking century are we living in?).  Another that “you’re just doing this because you’re 31 and don’t have babies yet”.  Would a man ever be told he was fainting every time he stood up because he was 31 and not yet a Dad?  Hell no!

Like many of us, the answer to their perplexing symptoms was found by the patients themselves who turned to Doctor Google.  If we non-medics can find the answer online just by typing our symptoms into a search box why can’t trained medical professionals?  It’s because, on the whole, they’re not looking for physical reasons.  We’re women, nothing is showing up on standard blood tests, therefore we’re making it up to gain attention because we’re lonely and hysterical.  It makes me LIVID.

I was talking to my best mate the other week and she was saying that she takes her partner in to medical appointments with her because she is taken more seriously if accompanied by a man.  She just has to grit her teeth when the Doctor speaks to him and not to her as the 42 year old degree educated fully qualified Civil Engineer patient.

Where has this bias come from?  I’m sure if I researched it there would be all sorts of conclusions drawn by people much cleverer than me, but I believe it’s simply that men and women are different and, because men have ruled the world since time immemorial they think that everyone should be like them, and if you’re not like them you’re somehow wrong, inferior or bonkers.  I’ll never forget watching a documentary about a trans-gender man who transitioned into a woman.  He naturally had to take female hormones and spent 3 months crying at the drop of a hat.  He said he had no idea that women go around feeling this emotionally raw every day of their lives and he hadn’t even experienced periods, the menopause or pregnancy!

Women’s hormones, on the whole, make us more emotional than men – it’s just a fact of life.  We are not mental or hysterical, we’re just more emotionally expressive than the other sex.  It’s normal, men need to fucking get over it and women need to stop apologising for it.  Do you hear that ladies?  We need to STOP apologising for it!

Britain had a famous female Prime Minister who only rose to the stop of the political ladder by acting more like a man than any of the men and this seems to be the case for many successful females.  But we’re not men!  We’re women and we should be allowed to act like women, hormones, emotions and all.  And if we are more prone to certain diseases because of our gender then that needs to be researched.  FFS we make up more than half the world’s population yet diseases which predominantly affect us are almost totally ignored.

Women’s issues across the board are ignored.  When I first started peri-menopause 6 years ago I went to see my female GP who told me it would all be over with in 2 years because that’s what she’d been taught in medical school by, I assume, male professors.  You only have to spend 3 seconds on Google to know this is bullshit and not born out by the experience of most women, yet the myth is still being perpetuated in medical school because researchers can’t be bothered to look at the reality.  Periods, pregnancy and menopause are natural after all and we women need to stop whining about it.  How I’d love a man to pass a bowling ball through his arse and then tell me it’s natural and he needs to stop whining, even though his backside has been torn to bits to the point where sitting down is torture and he poos every time he sneezes for the rest of his life.

As you can probably tell, the appalling way women’s health is often viewed within the medical profession makes my blood boil yet my whole life I have not challenged it.  I’ve come out of medical appointments and cried at the way I’ve been treated yet I have said nothing and done nothing.  This has to stop.  We need to speak up.  We need to complain about our treatment.  We need to confront sexism.  But more importantly we need to stop apologising for being female and having different experiences to men.



Health-care sexism

Jen Brea, creator of the M.E. docu-film Unrest, had an article published in the Boston Globe recently which talked about the bias women face in the health-care system.  About how auto-immune diseases, which predominantly (but not exclusively) affect women, attract the least funding of virtually any illness on the planet and about how women are much more likely to be told their symptoms are ‘all in their head’ compared to men.

Her article was shared on Facebook and attracted comments which said she was “dividing the M.E. community” to weaken our collective voice, that it is not a men v women issue and that such rhetoric isolates men.  These comments miss the point entirely.

Jen is not saying that M.E. doesn’t affect men, or that men are never told their symptoms are psychological, but the truth is that around 80% of M.E. sufferers (and auto-immune diseases in general)  are women and that women are historically less likely than men to be taken seriously within the health care system.  It’s just a fact, like the sky is blue, and ignoring it won’t make it go away.

Funnily enough, I was talking to my Mum yesterday before I read Jen’s article about the different way she is treated compared to my Dad.  Last year they were both asked for routine urine samples and both contained blood.  My Dad was immediately put on antibiotics.  My Mum received no treatment whatsoever.  What the hell is that all about?!

My Mum has severe and progressive COPD, is missing half a lung and has Emphysemia yet was dismissed from the lung clinic 4 years ago.  They were so gobsmacked about that when she was in hospital recently with her Guillain Barre the consultant immediately re-admitted her to the lung clinic so that her lungs could be monitored.  My Dad, OTOH, who has never spent a single day in hospital in his entire life and who is fit as a Mally Bull has recently had some moderate leg pain and weakness.  Within a month he’d had a Doppler scan, an MRI scan, a full blood work up which is being repeated in 3 months time and already has an appointment for physiotherapy and a referral to the spinal team.  Which is great, but it’s not like he’s going to die from a bad back…….unlike my Mum who is absolutely dying from heart failure, kidney failure and lung disease yet is not even being monitored let alone treated.

Baldness in men receives six times more research funding than M.E.. The fact that vain men are losing their hair and might not look at pretty as they did in the twenties is six times more important to our health authorities than the fact that millions of (predominantly) women all over the world are bedridden or in wheelchairs for the rest of their lives.  Are we not even supposed to discuss this?  And if not, why not?

When I’ve discussed the inequality of women here on my blog I’ve had comments from other women saying it’s not as bad as I make it out to be because they haven’t experienced it. Good for them that they are middle class, educated and living in America.  Not poor and living in the Yemen or Saudi Arabia, or having their clitoris cut off because of their religious beliefs, or working in the same job as a man at the BBC yet being paid 1/3 less than him, or being raped because they want to work in the film industry, or being paid 7 years less health insurance because they were born with a vagina and not a penis.

That anyone would criticize Jen for merely stating a fact gobsmacks me.  That the criticism would come from women appalls me.  Jen is not denigrating men or dismissing their experience, she is standing up for women and she should.  We all should.

Weekly roundup update

As I drew up to my house in the car this morning after walking Bertie there was an ambulance and police car at my neighbour’s house.  The Carer had found her dead on the floor.  She had tried to get up in the night, fallen and lain on her own in the dark probably praying for help and becoming hypothermic until she died.   She had only been out of hospital for 36 hours. It’s a fucking disgrace.

I spoke to the ambulance men and told them that I’d written to the hospital about my concerns that she wasn’t fit to be allowed home, her house was infested with vermin and her care situation inadequate.  The paramedic couldn’t believe his ears and just shook his head in disgust that they had still discharged her.

If this is how we treat vulnerable, frail, 90 year old human beings we should be ashamed as a nation.

The Coroner now has to decide if there needs to be a post mortem, but when he learns she had cancer he probably won’t bother.  So no inquest either and the whole situation will be swept under the carpet and forgotten.  No-one will know that she actually died of neglect and inappropriate discharge from hospital.  And that makes me furious.

Inappropriate behaviour

Since time immemorial we have lived in a male dominated world.  It is only in the last 80 years that women in the UK have been able to participate in the governing of society or been “allowed” to vote or work in positions of power, and in many countries women still have no such opportunity.   The ‘rules’ by which we all live have been made by men and favour men.  Anyone who thinks, reasons, feels or acts differently to the Rulers (ie women) have therefore been seen as inferior.  Less than.  Wrong.  Deviant.  Stupid.  Ignorant.  Weak.

I’m sure it’s hard for many young, modern women who take for granted their right to be educated, to walk unaccompanied outside their home, to work, to marry whomever they like or decide not to marry at all, to voice an opinion without being arrested, to vote, to take part in sport and hobbies and who have rights under the law (including the right not to be assaulted) to appreciate the full extent of the suppression of women throughout history but we really should think about it.  We should never stop thinking about it, because we’re still fighting the fight.

Britain and America are currently in the grip of a wave of inappropriate sexual behaviour revelations.  Quite why they should be revelatory astounds me, as men have been sexually harassing and assaulting women for millennia then blaming the woman for their behaviour (“she was dressed seductively”, “she smiled at me so I thought she was up for it”, “she was drunk”, “she’s my wife and I can do whatever I like to her”).  Women who have reported sexual assault have then been blamed for speaking out (“she’s frigid”, “she’s lying”, “she can’t take a bit of banter”, “she’s trying to destroy my career”).

Men have been led by their penises since time began and use the fact that they have testosterone as an excuse to behave like animals.  Only they’re not animals.  They are human beings with the ability to rein in their behaviour.  When I’m hormonal there are times I get so irrationally angry I could genuinely murder someone but, being a human not an animal, I can resist the temptation.  We resist the temptation to do things we’d like to do 100 times a day.  My dog irritates me so much some days I’d like to kick him into next week, but I resist the urge.  I resist the urge to slap the woman who’s pushed in front of me in the queue at the supermarket.  I resist the urge to tell my next door neighbour he’s a fucking knob-head.  I resist the urge to ram raid the person who’s parked at the entrance to the car wash before they’ve bought a ticket, thereby blocking me from using it.   I’d actually like to do all of these things but I know it’s inappropriate and there would be detrimental consequences if I tried.

Here’s the nitty gritty of the situation as I see it.  Men and Women are different.  Equal, but different.  Because historically men have made the rules we have lived in a society where men’s behaviour, reasoning and emotions have been seen as ‘right’ and women’s behaviour, reasoning and emotions as ‘wrong’.  Now, however, because women have a voice and, more importantly, legal rights the situation is changing.  We are no longer willing to live by men’s rules.  The rules haven’t changed as has been suggested – they were inappropriate for women from the get go, we just haven’t had the opportunity to challenge them until now.

Some men are, apparently, confused by the change to the ‘rules’ and now don’t know how to act around women.  I don’t see the problem.  You can touch and cuddle a child without it being in any way sexual, and you can interact with your male friends without it being in any way sexual, so behave with women the same way.  You wouldn’t have a conversation with another man and keep glancing at the bulge in his crotch, so surely you can have a conversation with a woman without staring down her cleavage.  You wouldn’t drunkenly grope or try to kiss some bloke you just met at a bar, so don’t drunkenly grope or try to kiss some woman you just met at a bar.  Easy peasy.  If a woman is sexually interested in you she’ll let you know.  She won’t want to miss out on snogging you any more than you want to miss out on snogging her, so fear not she’ll find a way of telling you explicitly, with words (or a text or a Facebook message), that she thinks you’re cute.  She won’t wait for you to grope her then make a decision on whether or not to have you arrested depending on how much she fancies you.

It feels like we’re on the cusp of real change.  I do hope so.  But we have a long way to go.  It’s one thing being harassed or assaulted in social settings and quite another when it happens at work where there is a whole other dynamic of power at play.  Despite women making up 47% of the workforce in the UK they only make up 13% of the Directorships of the FTSE 250 companies and in all sectors men dominate managerial positions and therefore hold the balance of power.  That power includes the ability to deny promotions, make working life a nightmare and ultimately terminate employment.

There are questions being asked as to why women haven’t spoken up until now (there we go  blaming the victim again), but you only have to look at the Jimmy Saville case to understand that in the past women have spoken out, only to be silenced or disbelieved.  The Harvey Weinstein casting couch has existed since the dawn of film but tell anyone what happens on it and your acting career would have ended before it had begun.  As little as 10 years ago, the Rotherham child sex scandal showed that both the Police and Social Services were fully aware of the abuse of vulnerable female children by a large gang of Asian paedophiles but simply ignored the situation – indeed, both the sexual health worker and the police woman who persistently tried reporting the issue to the authorities were sacked.  I wonder if the predominantly male police force would have ignored the situation quite so well if the abuse victims had been 12 year old boys.

I’m not some raving feminist who thinks all men are rapists or sexual predators, far from it, but as a former very pretty child then young woman I have suffered consistent inappropriate sexual innuendo, harassment and touching, alongside the negative consequences of rebuffing inappropriate sexual advances.  At  the age of 11 my parents bought me a dog to protect me after the village paedophile stuck his hand down my knickers.  As a teenager, having turned down the advances of boys, I’ve had vile rumours spread about me (I’m apparently both frigid and a raging slut).  I’ve had to avoid being alone with certain male work colleagues, including two bosses, and haven’t had one single male friend my entire life who hasn’t at some stage tried to stick his tongue down my throat.  I’ve had both my breasts and arse felt up in pubs and clubs and, after suffering constant sexual innuendo by a neighbour I finally flipped and told him to “put your bloody libido away!” he’s never spoken to me since – like I’m the one whose behaviour was in appropriate.

I’m fed up of living by men’s rules.  I’m fed up of having to try and hide my periods and my menopause like neither is happening.  I’m fed up of the fact I’m more emotionally expressive being seen as weak or hysterical.  I’m fed up of the fact that, if I have a strong opinion, I’m classed as “opinionated” and “gobby” but men can have opinions all day long and that’s fine.  I’m fed up of the emphasis on sodding sport which dominates our news – in the last ten years 17 million women have been raped in America but let’s never mention that, let’s talk about Everton losing the last 3 games under their new manager.   I’m fed up of the sexualization of girls from the day they’re born and only ever seeing flawless, childless, 19 year old girls in adverts.    I’m fed up of my female characteristics (nurturing, empathy, negotiation) being seen as weak and unfavourable and male characteristics (dominating, aggression, violence) being seen as strong and favourable.  I’m fed up of being treated like an object, not a person.

I dream of a world where there is true equality and I hope that, in the sexual arena at least, that begins now.



I was having a chat to my Mum the other day and I had a light bulb moment.  One so huge I couldn’t believe I’d reached the age of 50 without giving it a second’s thought and it was this:

Women are the most persecuted people on the planet.  Bar none.

It seems so obvious yet it had never before crossed my mind.  We have been stoned, executed, tortured daily in our millions by our spouses, bricked up behind walls, raped regularly (usually by our spouses), imprisoned (often by our spouses), kept as ‘chattles’ (ie owned), denied basic human rights, denied the right to vote, denied a voice, denied education and kept in poverty not to mention domestic slavery for millennia.

Here in the West we think of the persecution of women as being either historical or something which happens elsewhere, yet it’s happening right here and right now in every country across the world. Even in good old Blighty. The recent rise in human trafficking predominantly affects women who are sold as both sex and domestic slaves but it doesn’t even really make the headlines. The case of the Rochdale paedophile ring recently shown in the tv drama Three Girls highlights very well that women are still blamed for their own abuse even here in the UK.  Women are still being paid less than men for the same job but apparently it’s our fault.  Working mothers are predominantly the ones who take days off to look after sick children or to take their kids to the dentist or doctor like their work is unimportant compared to men’s, and full-time working mothers still do the majority of child care in the home.  How often does the father pack the children’s suitcases when you go on your hols?

Women are seen as ‘weak’ because we are more emotional than men.  We can’t just be seen as different, we have to be portrayed as ‘less than’ and the only way women can rise to the top in our society is to act like a man.  Even though men have, historically, made an absolute sodding mess of running the world they are still seen as somehow superior and their lack of nurture and empathy as a strength when it is anything but.

I’m currently being financially persecuted because I am a disabled woman. The recent change to the pension age for women in the UK has discriminated against me yet I can find absolutely no-one who will take on my case. Not only that but the Equality Act actually allows the discrimination. The very law which exists to ensure everyone is treated equally allows me, as a disabled woman, to be treated differently to everyone else but….hey….it’s fine.  In fact, so dismissed has my discrimination been that 11 out of the 11 Solicitors I’ve contacted to take on my case haven’t even bothered to reply to me, not even a bog standard automated email.  Mind you, neither did the Women & Equalities Commission, Lilberty nor the Shadow Pensions’ Minister (who is female).  Women are so conditioned to our inequality that I’m actually made to feel like I’m whining.  Why can’t I just play nice and accept the situation?  Don’t I know how much it would cost to legally fight for my right to be treated the same as a man?!

This morning I briefly wrote about this subject on my Facebook page and my male cousin, the father of 3 daughters, commented “but Jak, I believe women shouldn’t have been given the vote….or car keys!”  Of course he was joking, but I bet he wouldn’t be laughing if his 23 year old daughter had been stoned to death by her husband, or his 17 year old daughter had been raped walking home after school in winter then been blamed for walking alone in the dark and not only that for doing it wearing a skirt (like walking the street wearing whatever the hell we like without being attacked shouldn’t be a fundamental human right).

Our children are quite rightly taught in school about persecution of peoples. About the horrendous Holocaust and the equally horrendous African slave trade. Yet nothing, not a jot, is taught about the biggest persecution of all…….that of women.

Rural health inequality

I’ve lived in both a city (Wolverhampton), a market town and a rural village and there is no doubt about it – people who live in the countryside are discriminated against on every level.

A good friend of mine lives in London.  There are no less than 3 hospitals within a one mile radius of his house.  I live in Cumbria and my nearest hospital is 30 miles away.  If you need more specialist services, like treatment for childhood cancers, female cancers, heart, lung or spinal surgery, or allergies my nearest hospital is 90 miles away.  There is no public transport in my village and it is impossible to survive without a car.  If I wanted to visit my local hospital via public transport, I’d first have to pay £15 for a taxi to my local town, then catch the train to the city then hail another taxi to the hospital……and back again, which would literally take all day.  When you’re really poorly the effort of making the journey to a hospital makes you feel more ill than the ailment from which you suffer and one of the reasons I barely ever saw a Doctor during my ten bedridden M.E. years – I was simply too sick to get there.

Can you even imagine what would happen if Great Ormond Street, the Royal London and Guys all moved to Cheltenham or Ipswich and it took Londoners a taxi ride, changing trains 3 times and another taxi ride to get there with a sick child, a cancer patient or a frail elderly parent?  It’s unthinkable, yet rural people are expected to just get on with it and not make a fuss.

If you’re unlucky enough to be admitted to hospital as an emergency, and go in an ambulance, you have absolutely no way of getting home again.  My neighbours, both in their seventies, recently had this experience and were discharged from A&E at 3am, in their pyjamas.  They then had to hail a taxi to bring them the 30 miles home which cost them nearly £80.

When my Mum had her lung surgery over in Newcastle my Dad and I visited her for ten days.  That’s a 180 mile drive every single day, the cost of a full tank of petrol and an £8 parking fee not to mention meals.  It cost a small sodding fortune and I have no idea how anyone on a low income manages (my Dad paid for everything because I couldn’t afford to).  After discharge she then spent 2 weeks in our local hospital, where we visited every day.  A 60 mile round trip, petrol, meals and parking fee.

Following having half her lung removed, if we’d lived in the city my Mum would have been offered a 7 week rehabilitation programme with a team of specialist lung nurses and physios to get her up and moving again.  Only she lives 20 miles up the road in a town where no such programme exists so she was just left to get on with it.

As a Carer now for my parents I visit them 4 days a week.  This journey alone costs me £80 a month in petrol, which is a huge chunk out of my small income, not to mention the cost of buying, insuring, MOTing, servicing and maintaining a car.

There are 2 specialist centres for people with Ehlers-Danlos syndrome in England.  One is in London, 300 miles away from where I live.  The other is in Sheffield, 124 miles away which takes nearly 2½ hours in a car (there is no direct train).  It’s not do-able when you’re as ill as I am, especially if you need to go regularly and not merely as a one-off appointment.

I received an email from one of the EDS charities this week offering for me to attend an event “near you”.  Great, I’d love to!  Only it was in Leeds, 100 miles south.  Birmingham is 100 miles north of London but no-one would ever suggest that Birmingham is “near” London FFS!  The Lodon-centric attitude in this country drives me nuts – it’s as if nowhere else exists.  None of the conferences are ever held north of Birmingham, when they should actually be held in either Carlisle or Newcastle – at least that is the middle of the UK and would enable people from Scotland to attend.  But of course it’s a long journey to make from London, and the trains to get from London to Newcastle are dire, so no-one ever bothers.  Who cares what happens in “the north”?  It’s not like any of us matter.

I rely totally on the internet – it is my lifeline to the outside world.  It’s how I order repeat prescriptions, book doctors appointments, do all my banking, pay bills, do my grocery shopping and all other shopping.  Yet until last year my broadband connection speed was 6mbps and regularly cut out.  My mobile signal is no better and I can’t make a call at all from downstairs and only get 2 bars signal at most upstairs.  Which means not only do I have to pay for a mobile contract every month I have to keep paying for a landline contract every month too which doubles the cost of my broadband and phone bill.  My one luxury is having Sky tv who offer free broadband and phone services for their customers…….unless you live in the country where it isn’t “cost efficient”, so we have to pay an extra £20 a month for broadband whereas if I lived 7 miles away in town I’d get it for nothing.

Our nearest Hospice is a 60 mile round trip away.  Can you imagine being in your 80s or 90s and wanting to visit your dying spouse every day?  How would you get there if you can no longer drive?  And even if you could drive, how would you afford the petrol if you lived on the state pension?

The discrimination doesn’t stop even when you die, because guess where our Crematorium is?  That’s right, a 60 mile round trip away.  So you have the Church service locally, then everyone has to drive 30 miles to the city for the cremation, then you all have to traipse the 30 miles back again to have the ashes interred in the cemetery.  It’s outrageous to put grieving families through that and doesn’t half bump up the cost of a funeral because rather than hiring the funeral director’s staff and cars for an hour or two you’re basically looking at the whole day.

There’s a myth that everything costs less in “the north” and it’s the biggest fib ever told.  In some parts of “the north” houses might go for a pittance just like they do in some parts of the south, but here in the Lake District an average 3 bed house costs anywhere from £300,00-£450,00 which is 19 times the average local wage.  We hear all sorts on the news about the extortionate cost of housing for Londoners, yet nothing about the equally out-of-reach cost of houses in Cumbria.  A loaf of bread and a pint of milk costs the same in Tesco in Carlisle as it does in Tescos in Maidstone, yet the average salary in Carlisle is £18,000 while the average salary in Maidstone is £25,000 – guess who’s going to be worse off?

Maybe all us country folk should just move to the city.  Only of course then there would be no clean drinking water, cities not being known for their reservoirs.  No-one to grow our food, not that that’s going to be important after we leave the European Union.  No-one to milk our cows.  No-one to sheer our sheep for their wool.  No B&Bs or hotels to book into for our holidays.  No electricity because there would be no-one manning nuclear power stations which aren’t located in cities (who cares that rural children get leukaemia from the waste they produce).  No-where to film Downton Abbey.  No-one taking care of our beautiful green spaces or ensuring our wildlife doesn’t die out.  No-where for our military or our pilots to train.  No-where to go snow boarding, fell walking, horse back riding, canoeing or the 1001 other outdoorsy activities that some folks like to do.  No-where to study our night skies.  No-where to go to avoid the pollution so rife in our city air.  No-where to go to escape the hustle and bustle and to just sit in peaceful solitude.  Not to mention the fact we’d lose 20 million overseas visitors a year which would wreck the entire country’s economy.  On the plus side, at least there would be no tourists trying to climb Blencathra in their trainers and flipflops and no need for our mountain rescue team risking their lives to save them.  Bonus.

Of course it’s not feasible to have a hospital in sparsely populated rural areas, however there absolutely should be recognition of the fact that rural people are economically disadvantaged in accessing health care.  We should have free parking at hospitals and either quick, reliable hospital transport or vouchers towards the cost of petrol, train or taxi fees for both patients and their main carer.  If we have to travel out of the county there should also be vouchers for free b&b accommodation.

There needs to be a concerted effort to make health education available to all.  It’s impossible to take time out from the busy working life of a Consultant to attend a medical conference 300 miles away, just as it’s impossible for sick patients to travel halfway across the country to attend patient events, so much more needs to be done to hold conferences away from London and Birmingham and to ensure that venues are accessible by major train links.

Just because we live outside of cities shouldn’t mean that we receive both poor health education and poor health care.  We pay our National Insurance stamp and taxes just like everyone else, yet seem to get very little in return.