Chocolate Pillow | Are we ever more than statistics? Mine and My husbands story
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Are we ever more than statistics? Mine and My husbands story

05 Mar Are we ever more than statistics? Mine and My husbands story

I have worked for many years in Hospitality, and have been a contributory member of society for most of my life, but sometimes things happen that make you wonder if you as a person actually matter.

For several years my partner has battled depression, anxiety and a wide range of mental health issues. This makes life hard.  I have never actually spoken about this before, let alone on such a public forum, but it is about time that people knew what underpins a lot of my ranting!

There is no real way you can describe what it is like living with someone who has thoughts of suicide; who battles their own thoughts every day; who smiles outside but is torn apart inside by things that seem ‘ordinary’ to anyone else.  It is even hard going to work, always wondering if he has not text me back in 20 minutes or so, whether something has gone wrong or whether that goodbye this morning was the last one forever.  But what makes it worse is when the lack of support really shows for those living with a mental health condition, and those that they live with.

Let me just provide a bit of background to the situation.  David (my husband) has battled with mental illness for many years of his life, in particular recurrent unipolar depression (basically recurring depression that only heads one way – down!), which has hit us hard over the past few years.  David has always tried to understand himself and his thoughts, and is a naturally empathetic and caring soul.  He worked in care for years and took an interest in mental health and substance abuse as areas in which he wanted to work.  Shortly after we met, we made a sort-of deal that we would both follow our dreams; I would get back in to hotels, and he would train to be a Mental Health Social Worker.  This planned out very well and David qualified.  I am still so proud of him to this day!  He became an employee for a national charity supporting those with Mental Health issues on a short-term contract, but the University course and life in general began taking their toll.  His mental wellbeing deteriorated.  My doting caring husband became more anxious, introverted, …and grumpy!  The relationship strained and everything took a slightly better turn when he found a new job; it was well paid and the shifts suited us a bit better when I moved back in to hotels because we were able to match shifts most of the time.  Life was great.  But things started going downhill, fast.  David was working alone in a home caring for adults with challenging behaviour and learning difficulties, whilst also being required to supervise teams in other units.  Last minute changes to shifts began creeping in as budget cuts took hold of services, and as the last minute changes crept in, so did David’s anxiety.  One day, everything came to a head; David had dropped me off at work and had received a phone call telling him he had to go and work at another property.  One he had never worked at before.  I had a phonecall from my husband who had pulled over, unable to drive because of a panic attack… all at just the thought of being put somewhere different.  We sought help, went through a variety of scenarios trying to get him back to work, until October last year represented the final call – either go back to work, faced retirement/dismissal due to ill health, or quit.  We agreed he would quit.  Going back was too difficult to face – the year of counselling and assessments had done little to assist, forced retirement is horrendous on the CV, and quitting just made most sense.  On top of this, David has suffered from severe sciatica for around 5 years – being continuously in pain every day does not help when you are someone who wonders why life is worth it in the first place.

Skip forward to this year, and we are facing a scenario that is becoming a daily battle that both of us are almost at the end of our tether with.  We are now practically finding the only way to survive is to separate (at least legally anyway).  We are nothing more than statistics any more.  Let me explain…

When David quit work, we had savings (in fact we had been doing fairly well during his working life, so well we had booked and paid for 3 holidays).  These were well-needed respite over the course of the last 18 months and to see David genuinely let go of some of his worries, even if only for a day or two, was indescribable.  Things are vastly different now.  The process of David’s treatment has been a long one, even though he was effectively fast-tracked.  His training as a Mental Health Social Worker means that he could walk in to most therapies knowing what was coming – in his case, the knowledge was dangerous because he could play the system if he wanted to. Luckily he didn’t because he understands the impact of his mental health on his daily life, and knew about the intervention he needed.  He is now under the care of a fantastic GP (who often provides David with 45 minutes or so of time, despite not actually having to), and sees a psychologist once a week.  But to anyone else, we seem to be nothing more than digits on a spreadsheet.

I know that many people hate the concept of benefits.  In fact, we were not keen on them because of the entire stigma surrounding them.  But at the end of last year, and with a Christmas budget of just £5 each, we knew that financial disaster was imminent.  We had managed to pay the car insurance in full, get car tax for 6 months and had no debts hanging over us as we had no loans or credit cards.  Financial stability seemed possible back then.  Now it seems impossible.

We decided at the end of last year that it would be necessary for David to apply for benefits, so had a look at what he would be eligible for.  The resulting find was Employment and Support Allowance, which replaced incapacity benefit, and is for people who are unable to work through poor health or similar.  A lovely conservative government concept that works in theory, and destroys lives in practice.  We applied over the phone, with me advocating for David because it was too much for him to deal with and would no doubt cause another sleepless night, or him having to take medication to assist with his mood (and believe me when I say that it is hard to accept that your partner needs to medicate themselves just to get through the day).  The application was over the phone, and we just sat back and waited after sending off all the paperwork.

A few weeks later came the decision. No. David was entitled to nothing.  My income was classed as high enough to support both of us and he was told he had not paid enough National Insurance in 2010 or 2011.  David handled this quite well.  I wanted to punch someone.  I was so annoyed by 2 points:

  • If my income was truly enough for us to survive on, why would we need the benefits?
  • Out of all his life at work, David took 3 years out to study a degree in Social Work, allowing him to help plug a skills gap in the economy.  The assessment years for National Insurance Contributions included 1 year where he was full-time at university, and one year where he only worked part-time for 6 months because he had just finished university.

We (well, I with a lot of screaming and shouting) asked them to review the decision.  They wrote back and again said no.  I rang again and spoke to someone who actually for once appeared to give a toss about us.  We had stripped all our costs back as far as possible, and spent the previous couple of months getting by through selling our belongings on eBay and Gumtree.  Now we are running out of stuff, and our savings do not exist.  We are genuinely broke.

When ringing the DWP, my anger and frustrations surfaced; I was at breaking point and broke down in front of David.  We could not afford to survive much longer and I was unable to handle it; I was so angry and upset – my husbands life is effectively at stake here.  My anger and aggravation meant David’s anxiety increased, his mental health was being detrimentally affected by a system that does not see the person.  My main frustration was that no-one wanted to actually listen to me – the fact David was at university for three years didn’t matter, the fact he had paid 2 or 3 times the required amount of national insurance contributions in 2012 didn’t matter, the entire decision was based on a system that did not bother with circumstances, it did not care that we are struggling to feed ourselves, it doesn’t even care about how detrimental this is to David’s health and mental condition, right in the middle of his treatment… the whole thing is based on a few numbers and pieces of data.  This is what me and my husband had become; statistics.  And that hurts because there is nothing we could do.

After about half an hour of arguing, I got through to someone who actually gave a toss, and probably empathised when I pointed out that David went to University to improve his life and the lives of others, now he is being penalised by the very government that were calling for more Social Workers.  The person I spoke to went away and spoke to a decision maker – they said to re-apply, but instead of October last year, start the claim from January this year, as then there will definitely be enough contributions, as is the backward way of the system with the years they take in to account.  The paperwork arrived, was completed and returned.  They claim to have never received it.

So last week, we sent back claim form number 3, in month number 3 of the ongoing saga.  I have waited all day yesterday, and all this morning for a call that has been guaranteed to me within certain times.  The call has never been received.  From my enquiries when I rang them, it looks like they have again declined the claim.  We are at breaking point.  David received a nominal amount of housing benefit (about £20 a month) from the local authority, but even that does not help out much.

This month is crunch time.  The car tax is due at the end of april, and the MOT is also due.  The cat needs to go to the vet, we need to buy flea treatment, but cannot afford it – the cats are suffering too and it breaks my heart to know there is little more I can do.  Our websites are up for renewal (David’s website – www.twistedasylum.org.uk – being the only project he has, it is his focus and his calming strategy; it allows him to zone out and not think about the world.  It also supports others with mental health concerns, and David finds solace in this, using his experiences to strengthen the support he provides in his articles.  If he loses this, he will decline, and my husband could well be lost, or even worse the thoughts of suicide could well take over).  We need to find £200 in 3 weeks or we will be making some very hard choices.  There is little left for us to sell, and we would probably have to empty most of the house out now to get £200.  Either that or we get rid of the car, which leaves me with no way to get to and from work and no way for David to get to appointments as public transport is not an option – social anxiety being a major contributor to David’s condition, he finds it hard being near strangers, let alone crowds of them in a confined space.

Am I scared?  Yes.  Am I angry?  Yes.  Do I want to bury away from the world? Yes.

I cannot use public transport for any sustained amount of time at work – the journey is 2 hours long, and finishing at 11.30pm and starting again at 7am leaves me just a couple of hours sleep, which is no good in a job as demanding, physical and draining as Hotel Duty Management, but I may have no choice.  No-one else at my workplace (which is 8 miles away) lives nearby and I cannot take David to work with me, nor can he travel all that time on public transport.

Today I am waiting for a call from the DWP to explain things and this was supposed to have been received either yesterday, or before 10am today – it’s now passed mid-day and still no call.  I hold out no hope.  They refuse to review the case on anything apart from the national insurance contributions; the length of time it takes for an appeal would be of no help as by then we would have had to sell everything.

Okay, so this post just ranted about the benefits system, but it makes an important point – beyond every statistic is a story.  And behind every story is a person – as a business, in any context, your yes or no decision could make or break the person; we are almost entirely broken – dissolving our Civil Partnership means David can claim on his own and receive income-related benefits, but how can anyone say this is correct moral or even acceptable in order to get money out of a system that you have paid in to for 16 years (HMRC confirmed 16 qualifying years for NI Contributions); a system that is designed to protect the money of the state, is actually penalising some of those who need it most and all because the numbers say so.

If a business person rang their company like this, people would walk to another company, but we cannot do this.  I had always been one who looked from the sidelines with sympathy for those going through this situation with the DWP, but now I am inside that story, behind that headline, and seeing the ones I love suffer because of it, it is entirely different.  I understand the anger, I understand the frustration, I understand why people give in, but no-one causes my husband distress and I intend to fight until my last breath if I have to.

[box type=”info”] EDIT: Since writing this post, it appears as though the fight is beginning to have a slight effect – the case is undergoing review by decision makers and we have trimmed our budget right back once again. Re-jigging payments and changing a few things will mean we can afford to get through the month. Thank you to all those who have provided their wishes and support, it truly is appreciated and means a lot to the both of us![/box] [box type=”bio”] EDIT: Woohoo! Common sense prevailed with the DWP ultimately and after multiple months of battling, they have agreed to pay the claim. We still lose out on a couple of months of money, but at least we are finally sorted out to a certain extent. Apparently a system error with the claims was to blame… one that took a minimum 3 months for them to notice… or maybe it was the local MP, the family, blog posts and kicking up a real fuss that shoved a rocket up their backsides…? Thank you again to all those who gave support to us![/box]
Matt Shiells-Jones
matt@chocolatepillow.com

Husband, Author, Hotel Manager and ambitious 'old cat lady'



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