…………………………living with chronic pain is difficult and complicated enough the fine line we walk or wheel between doing too much and not enough, the changes in lifestyle (good and bad), finding out who your family and friends are, learning a lot about yourself and those around you, learning about 3,000 types of medication and what they all do to you, the side effects, the soul searching, the stress, the emotions, the guilt these endless lists and if life wasn’t complicated enough every form you need to complete for the slightest amount of help you require a degree for.
Whether it is DLA, PIP, ESA or any other acronym, on top of this there are new schemes that you don’t get a letter informing you about, or explaining that you might qualify for (I mean heaven forbid we help those in need) or the incentives in your area that you either stumble upon or are lucky enough to meet someone who knows someone, who knows someone, who heard of something. Now I know there is a need to try and weed out the scroungers and benefits cheats and I applaud that, but in my experience it is these people who lose out as those who know how to fiddle the system are educated enough to cheat the system, a bit like the tax evaders!
I currently have sitting waiting for me 4 applications totalling over 55 pages of questions, when 500 words in a blog kills me is it any surprise that these sit in a pile waiting for me to have the energy and mental awareness to fill in – one ironically enough to apply for funding to have someone help me with these type of organisational things! I have no idea where to start and yet a little over 18 months ago I was helping students with UCAS applications and personal statements. Funny how life changes.
On top of this there is not one central pot or place to refer to, for example I have through the pain clinic access to (in no particular order of importance my;
- Specialist Physiotherapist
- Specialist Psychologist
- Opiates Nurse Led Team
- Occupational Therapist
On top of this I have my;
- Community Physiotherapist
- Community Occupational Therapist
I have also recently been referred to and now have
- Adult Social Services
- Adult SS Occupational Therapist
- Adult SS Wheelchair assessment team
- Swift Service
Now on a good day I just about remember my name and if I’m lucky what the day it is, without my phone reminders I’d over medicate and without family, friends and reminders I’d forget appointments (putting me at risk of losing what small financial assistance there is and back to the back of waiting lists), so is it any surprise that I need someone with me when I have appointments. I have to try and remember the names of the people and where they work when they call (some it is easier to remember than others), when they start asking about the forms I have to try and remember which forms, which deadline etc, and when you are trying to juggle all these appointments into a calendar with means of transport it seems never ending, I’d like to say it’s a good job I spent years being organised and on top of things in a variety of business roles, but truth be told my brain has gone to mush and those skills all too frequently evade me. Looking around me now I see 3 of the applications and an additional 4 phonecalls that I need to make just to start/work on these.
If the idea is to drown you in paperwork the departments are succeeding. In truth though this is not the case, many of the specialists are just if not more infuriated by the forms than service users, some of which are not fit for purpose (forms not workers). All the people I have listed above would rather they were able to offer me decisions on the spot, recommend services without having to get things checked and two thirds of a rainforest being cut down to apply as most of them are in caring professions before they genuinely care and want to make a difference in the lives of the people they care for. Don’t believe the headlines, the media and TV sensationalism and the shoddy (and I use that word kindly) reporting of people like the Sun and the Daily Mail. Then you get mini barstewards who do not meet you, but sit behind the scenes holding the sword of Damocles above your head, who don’t understand the bigger picture, aren’t medically trained (but are cheaper outsourced services than the trained staff they replaced) and they just look at tick boxes and make a decision oblivious to the affects on peoples lives but fully aware of their companies bottom lines………………………………. Just think about this next time panorama or some such similar programme wants to slate these people try and convince you that milions are shirking the system!.