Getting Me Off the Books

Over the last 12 months I have had two different NHS teams try to discharge me.  I managed to avoid it in both cases, but it did make me wonder that if I was less belligerent what would have happened to me.

The first discharge attempt was made Spring 2010.  I had managed to control my periods with a contraceptive pill, that I can take indefinitely without worry of side effects.  This resulted in my gynae consultant telling me that my Endometriosis was controlled and therefore I should be discharged.  At this point, I spoke up and told him that when I said I was doing ok, what that actually translated as was that my pain levels were kind of controlled and weren't growing as fast.  I also told him that I was still taking lots of pain killers and therefore, by my accounting, I wasn't fixed by a long shot.  The consultant, somebody who's care I'd been in for around 9 years, listened to me and kept me on.

When I went back 6 months later, my adhesions were causing me all sorts of trouble.  I told my consultant that I needed surgery and I needed it now.  The pain was not controlled, in fact it was unbearable, and on top of that I could feel tearing inside when I had a bowel movement.  Instead of saying to me "let's book you in for surgery" my consultant surprised me by saying he didn't want to do it.  He wanted to transfer me over to an adhesion specialist.  I wasn't surprised about this, as the last time he had removed my adhesions it had taken him 5 hours.  He was afraid that he would harm my innards and I, for one, was pleased he had admitted defeat, even if I wished he had done that sooner and referred me to the adhesion specialist when the Endo was controlled.

My (soon to be ex) gynae consultant wrote a strongly worded letter to both my GP and the laparoscopy specialist he wanted me to be transferred to.  He couldn't refer me directly.  My GP had to do that.  How crazy is it that a very senior surgeon cannot refer to other specialist but has to go via the GP.  As a result of the strongly worded letter I got in to see my new consultant quite quickly and I got surgery this April.  In a space of 12 months I had gone from managing ok to requiring urgent surgery.  My bowel had become twisted and was wrapped in adhesions, which was why I felt tearing inside.

I was quite surprised when I went for my post surgery follow up, to be told that I was going to be discharged to the care of my GP.  I was also told that the new pain I was experiencing was probably just the scarring from the surgery settling down.  It was very unlikely to be adhesions.  I didn't argue with him on that point, as sometimes doctors just won't be told by a patient that they are talking out of their backsides.  I know my body and I have had this type of surgery before, I know what adhesions feel like and I know last time I had this surgery, adhesions were starting to form within a couple of months of the surgery.

Instead of arguing about the adhesions, as I wasn't going to ask him to do anything about them yet anyway, (there is no other treatment apart from surgery and with every surgery there is more risk of adhesions) I argued against being discharged.

I pointed out that my last situation had escalated very quickly and I wanted to be able to contact the department immediately and request an appointment, rather than trying to make an appointment to see my GP, get them to refer me and then wait for an appointment with the specialist.  I argued that I had never pushed for unnecessary treatment and that when I requested it, I invariably got knotted insides that resembled a basket of yarn after three kittens had played with it for a couple of days.

I won my argument.  I am staying in the system with an appointment set for 12 months time.  I'm hoping I will be able to postpone the appointment when it comes around but I want to know that it is there if I need it, and that I don't have to fight with my GP to be referred to the correct department.

Sometimes you have to know which battles to fight.  I know my own body and don't think the doctor was correct when he said adhesions couldn't be reforming.  But if I had pushed the issue he might have thought I was a hysterical patient craving attention.  Instead I dropped it and pushed in a rational and calm manner to stay on his books.  5 years ago I would have been emotional and upset that I was being ignored and being cast aside.  Now I know to go to an appointment with a plan of what I want to achieve.  I know what battles to leave and which ones to fight.

If I hadn't fought to stay on the books of my gynae consultant I may have had to fight my gp for a referral and I might have been referred to a less experienced surgeon.  Instead my gynae consultant shortcut the procedure by a few weeks.  I wish he'd done it months earlier but at least he knew me and my history and took me seriously when I told him I needed surgery and I needed it now.  I just hope that I can build up a similar relationship with my new consultant.

It does make me worry though that  many people are thrown back at the GP before they should.  I know that it is better to have people off a waiting list, but does it cost the NHS more for a patient to be able to ring a specialist in their condition for help.  Why is it better that a patient's first port of call is a GP appointment, which at my practice is nigh on impossible to get, to see someone who doesn't understand the condition fully?

Disabled Parking

Yesterday I took a stand.  I stood in my local convenience store, which is actually a Tesco Express, with a Petrol Station attached, and asked a question loudly, while people were queuing behind me.

I said, "Does that Golf parked outside belong to a member off staff".

The checkout guy replied "yeah - it's hers", nodding at the young woman serving at the next till.

I turned to face her and loudly stated "Did you realise you are parked halfway across the disabled bay?"

"I had to park there, the car next to me was parked halfway across their space," she replied defensively.

At this point I was feeling a little faint at my audacity at tackling someone in a shop full of customers.  Though with hindsight that could have just been the pain from standing up so long.

"Well, you are stopping people, who are disabled parking there," I continued.

"Do you want to make a complaint to my manager?" she spat at me. 

I was gobsmacked.  She was angry at me because I had the temerity to ask her - a member of staff - to move her badly parked car.  The car that was stopping disabled people being able to park next to the shop, and use the store where she worked.  This space is hard enough to get into at the best of times, because people stop across it to get money from the cash point, or because they are "just popping in for pint of milk".  Big loading trolleys are also left out across this space.  I have actually complained about the trolleys to the manager and I was assured it wouldn't happen again - yeah RIGHT!

This store has around 15 parking spaces ranged around the outside of the petrol pumps.  Outside the garage there is a quiet road, where it is easy to park on the street.  These places to park only require a 30 second walk, but rather than use any of those places, this member of staff had chosen to park halfway across the disabled bay, and didn't see anything wrong with it.  Not only did she not see it as a big deal, she was angry at me for pointing out that what she was doing was wrong.  I know she was embarrassed at being told off in public, but I could see she was really angry at me.  I felt the only thing stopping her from letting forth a torrent of verbal abuse was the thought of losing her job.

After being challenged about whether I wanted to make a complaint about her, to her manager, I felt that getting her into trouble wasn't going to solve anything.  I had also reached my standing up time limit and was about to fall over, so I just asked her to move the car.  I'm hoping the shame she experienced, in front of all the customers, might make her think about parking there again.  It might make those customers think again.

I feel so weary sometimes about this constant battle to remind people that parking in an empty disabled bay is not something you should do if you are able bodied.  Just because it is empty now, doesn't mean that 2 minutes after you go into a store there won't be someone who drives up that does need to use it.


I understand that if you are fit and healthy, the difference between where regular parking spaces are and the disabled spaces are, seems negligible, but that is because you are healthy.  When you aren't able to walk very far, every centimetre counts.  Every metre you have to drag yourself across before reaching your destination feels like a mile.

I have often contemplated printing up flyers to put under the wipers on cars parked in disabled bays, without a permit, that say;

"It's hard enough being disabled, and because you parked here, you just made it harder"

I don't know what the answer is, to getting people to understand how vital disabled bays are to the sick and disabled.  Before I got ill I didn't understand how vital they were.  I never used them, but I still didn't understand how important it was that they were free for people who needed them.

Every time I challenge someone about parking in a disabled bay, when they don't have a permit, I have either been ignored or sworn at.  It seems that because people, with invisible conditions, are witnessed getting out of cars and walking to the shop, it is assumed that the Blue Badge means nothing, except the user is a scrounger and a fake.  Helen at Humanity before Hatred wrote an excellent post about this recently, I recommend reading it.

I just don't know how to reach those who don't understand.  Do they even want to understand, or do they like having someone to blame for the state our country is in.  Is parking in a disabled bay one way of showing the sick and disabled how little they mean, or is it just blind and unthinking ignorance?

Working for Less than Minimum Wage

This week a Tory MP, Philip Davies, suggested that people with disabilities should be able to accept a wage that is beneath the national minimum.  He believes that,

"The people who are most disadvantaged by the national minimum wage are the most vulnerable in society.


"My concern about it is it prevents those people from being given the opportunity to get the first rung on the employment ladder."

What he doesn't seem to have grasped is that the minimum wage was set up to protect the most vulnerable in society.  It is arguments like his that play straight into the hands of the prejudiced.  By this statement he is implying that people with sickness or disability are worth less than the healthy.  Instead of addressing ways in which employers could be supported in helping the sick and disabled get into work, he is suggesting that we should accept less money in order to get a job.  Now, to me, that seems a bit backwards.  If someone is vulnerable, particularly mentally, why should employers be given an opportunity to manipulate their potential employees into accepting less than a fair wage to do the same job as a healthy individual.  Does that seem fair to you?

In The House of Commons he stated;

"When I went to visit Mind and I spoke to people there that were using the service offered by that charity they were absolutely upfront with me and they said that when they went for a job and they came across a situation where there were other people who had applied for that job, they've got mental health problems, other people haven't, they said to me 'Who would you take on?'.

I wouldn't be surprised if Mind are now spitting with rage, about the way in which Mr Davies has twisted what they told him.  While it is a fact that given a choice between two equally qualified candidates, one of whom was healthy, the other who was not, most employers would choose the healthy, but it shouldn't be up to the unhealthy to offer to take less money.

If this was made legislation, can you imagine the how unethical employers could take advantage of the sick and vulnerable?  If you consider that shortly, if the current government aren't to be stopped, there will be many hundreds of thousands of these type of people living in poverty with no other way out, other than trying to earn money by working a few hours a week, to the detriment of their health and sanity.

Mr Davies, I don't think you have really considered the consequences of your proposals.  Did you actually discuss them with Mind before you announced them?




Source: http://www.mirror.co.uk/news/top-stories/2011/06/17/tory-mp-philip-davies-suggests-disabled-people-offer-to-work-for-below-minimum-wage-115875-23207976/

A New Blog

I have been blogging about my artistic endeavours for around 2 years.  I kept my illness and my blog fairly separate, only referring to my pain levels in passing.  Recently in the UK the government has changed and the new ruling parties (it is a coalition) are dismantling our welfare system.  Our welfare system was not perfect, but it was certainly better than what is currently being discussed as the new alternative.

These proposed changes will affect me directly.  They will affect 10s of thousands of other people in this country and these changes are filling me rage and despair.

Rather than continue to post on my old blog, which is mainly for crafters, I decided to set up this new blog so I have somewhere to rant and cry away from my mainly international audience on my old blog.

I have no idea where this blog will go, or how long or how often I will post here.  I just know that I needed a place where I could really discuss openly how difficult it is to be in constant pain and have to battle the system.

I imagine for a while I will be wailing into the abyss, but hopefully someone will hear me, and if one healthy person understands a little of what it is to be sick or disabled in Britain in 2011, then I have achieved something.