Archive for the ‘ physical health ’ Category

Kidney Cancer; One Year On

This time last year I was 32 and I had not long been told that, while doing a CT of my upper GI tract for stomach reasons, they’d found a mass on my right kidney. I told myself it would just be a cyst but after another CT scan focusing specially on it I was told otherwise. I instantly thought – it couldn’t be cancer could it? I looked up the numbers and they reassured me. Less than 2,400 women in my age range (30-34), in the UK get diagnosed with cancer each year. That’s a tiny number. Then only about 1% have kidney cancer and most of those are hereditary – and luckily for me kidney cancer doesn’t run in my family. As you can imagine I felt pretty okay about it all going forward. My main worry was that they’d be grumpy about wasting their time on nothing.Kidney cancer incidence in the UK 2012-14. Shows a higher incidence for men than women, mostly affecting those over 50.

Kidney cancer incidence in the UK 2012-14. Image from Cancer Research UK.

However, from the moment I got the post scan appointment to see a Urologist things seemed odd. There was only a month to wait between the second scan and the appointment. The Urologist was not based at my normal hospital. When I arrived for the appointment I rolled into the outpatients waiting area and before I could say anything a nurse called out “Hello! You must be Emma. The doctor is just finishing something but come sit down here where it’s more comfortable than this area. I’ll sit with you now and be there through the appointment – would you like a drink?”. That is not my usual experience of hospital outpatients. With hindsight I shouldn’t have been as shocked then, when they told me it wasn’t nothing. But no amount of hinting could have prepared me to hear it was kidney cancer.

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A Response To Philip Hensher’s Article

Dear Philip,

I read your article (Some people on disability benefits are fit to work) yesterday and I saw the backlash on twitter. I have some thoughts on it and I wanted to share them, as a disabled woman with both physical and mental health problems who has been through the wringer with the DWP and it’s WCA process plenty of times.
I read every word and upon finishing was struck by two things. Firstly, that whilst apparently arguing for  some form continuing assessments of sick & disabled benefit claimants you were against the Work Capability Assessment in it’s current form. That is something I applaud. I too am against the current WCA’s. I’m very glad to hear you speaking out against them and I would love more voices to join the throng. 
The second is that whilst suggesting that there is some need for assessment you (I assume accidentally) propped up some rather pernicious myths about people claiming disability benefits. I hope you can understand that for many of the people that will have been attracted to read your article that might have made pretty painful reading. I will just go through some of those myths now as I assume you might not be well versed with them.
That there is a high percentage of people claiming these benefits that shouldn’t be.
You devote about 50% of your article to talking about people who defraud the system. I would argue that this is providing false balance to these stories. The DWP’s own statistics show that less than 1% of claims are fraudulent. You are not the first person to cover the issue in this manner (either to make it seem more contentious or exciting, or simply because you believed it to be true because of the media coverage you have ingested) and nor will you be that last. The problem is that many of us are suffering, I personally believe, in a huge part to the false balance given to these stories.
As a wheelchair user I have noticed the abuse I receive in the street has changed over the last few years. It’s no longer about how I look (funny, disgusting) or about how I might be “catching”. Instead it is about how I am probably a lazy, workshy, scrounger and a benefit fraud. People feel free to approach me in car parks and ask if I really need the blue badge parking space or if I just use the chair to get a free car. It’s painful and it’s part of my day-to-day existence. It’s part of many other peoples too. There has been a huge rise in disability hate crime over the last few years. I assume from what you have written it is not part of your everyday life, but I don’t know. When people for whom this is their day-to-day reality read articles like yours they often have an (understandable) emotional response which can vary from sadness to anger. I became pretty despondent personally as what I thought was a very promising piece propped up the “scrounger rhetoric” as many of us call it. I hope you can see that when people in the media spend as much, if not more time talking about scroungers the effects on the vast majority of disabled people 
That mental health conditions are not as debilitating as physical health ones.
The way (or tone) you take when talking about people who claim benefits for mental health conditions such as anxiety and depression seems pretty sceptical to say the least. This reader at least felt like you were either ignorant of the how severe these conditions need to be to claim ESA or you were suggesting they weren’t really very debilitating. As I hope you are aware many people who live with mental health conditions are routinely told to “snap out of it” or are treated as if it is something they could just “get over it” with the right motivation and the way they were talked about in your article felt like you too were propping up this myth. I know that many people who responded angrily to reading your article were most hurt by this sentiment.
But, I can’t talk about other people. that’s not my place and those aren’t my stories. I can however talk to you about myself. I have a mental health condition, Post Traumatic Stress Disorder in fact. I also have a chronic pain condition stemming from a lot of damage to my abdomen and the nerves within. I have quite a bit of personal experience of dealing with both kinds of health issues. Thanks to the PTSD I can’t manage 15 mins in a whole host of seemingly innocuous environments (for example; being near petrol or the sound of breaking glass) because they trigger flashbacks during which I relive experiences that were so horrific the first time around they left me with a mental health disorder. I would often describe this, to those I would really rather not have a huge conversation about this stuff with as panic. In my experience panic can be as debilitating, if not more so than severe physical pain at times. Panic, fear, terror, fight or flight responses, what ever you want to call it is extremely unpleasant and can govern a persons life. We need to remember that when we talk of claiming ESA for anxiety or panic disorders we are not talking about people who experience panic on a once a month basis, if we were then they would not be getting ESA. We are talking about people who often experience it multiple times daily to the point it may stop them talking to strangers, leaving the house or wearing certain colours. It will also often have physical manifestations such as uncontrolled shaking, nausea, pain & high blood pressure. Someone who can cycle for over 15mins but can’t talk to people without crying and shaking in fear isn’t very likely to be employed. All because it is a mental health disorder does not mean it’s any less likely to be disabling than a physical health problem. 
That some conditions are more worthy than others
You mention obesity in your article and say that “The only possible purpose for public expenditure there is to help them back into fitness for work.” I feel the same way reading this I did when the Daily Mail published it’s bogus article about the parents of lots of children with ADHD being given free BMWs. There is a gulf of misunderstanding when it comes to these statistics which list which disorders people have and what they are claiming. Many people claiming ESA or DLA have more than one condition but the DWP only bothers to record the first condition listed on it’s forms. So, for example someone with ADHD, Obesity & EDS will only be recorded as claiming one of those conditions, possibly ADHD or obesity. It’s hardly ever as simple as black and white as it looks.
I also was disappointed that you used your platform to in many ways make it seem as if obesity (to a disabling enough level one would be able to claim ESA) is a lifestyle choice/moral failing and that people shouldn’t be supported. I hope you realise that obesity is often a side effect of many medications (steroids, beta blockers, anti-seizure medications etc…) as well as medical conditions  either directly (such as PCOS, Cushings & Prader-Willi syndromes) or indirectly by limiting activity or changing diet (such as arthritis & drepression). Even forgetting all of this I personally believe that if someone can’t mobilise, breathe, manage continence of anything else similar then regardless of the reason behind it those people deserve support. If we start deciding what conditions are worthy of being disabling rather than looking at the effects of conditions upon individuals we risk leaving a lot of vulnerable people behind.
I believe that you could have written the same article, which I believe can be summed up as “The WCAs as they stand need to stop but that we should talk about what will replace them that will be fair to everyone”, without using the afore mentioned problematic dialogue.
I’m going to leave it there, because I’m tired of writing and I’m sure you are growing tired of reading criticism. I do really respect you for having tried to take a stand against the WCA’s and I’d love to see you continue to write about these issues in the future but I’d also like it if you could try and consider how you talk about sickness, mental health problems & disability when you do so.  
Warm Regards

[Edited to correct typo]

Job Hunting – Part Two

I said I’d write a follow up when I had more news and now I do!

I did apply to a service designed to help disabled people into work but discovered to my dismay that they wanted a complex referral from social services. Not having any idea how to sort it out and quite frankly not having the energy to do so I have not gotten around to sorting that out.

I have kept one eye on the governments Job Search website but to no-avail. The closest I’ve come to a really flexible job that would fit around my health issues was the mistakenly advertised “Babe Chat” position. I’m not anti-sex workers, but it’s not something I feel comfortable doing. I also don’t imagine for one second I’m exactly the kind of person that Loaded TV were hoping to recruit *grins*

I did start checking charity websites and looking at jobs within the Tribunal Service as well as considering applying to be a magistrate. Sadly I don’t meet the health requirements to be a magistrate, and the tribunal service isn’t recruiting until March 2013. Luckily I did spot a vacancy with a mental health charity, working about 10 hours a month, helping with quality assurance work. I applied back in November and was fortunate enough to get a telephone interview in early December. Just before Christmas I got an email inviting me to start training in Spring! I’m pretty darn chuffed, but given the wait before starting and the current economic situation I’m trying not to get my hopes to high – just in case it gets rescinded. 
I’m going to leave the job hunt there for the moment as I have been fortunate enough to find an opportunity that appears to suit my health condition as well as being physically & mentally accessible. I imagine I will have more to add when I have a start date and I find myself needing to deal with the DWP. 

Psychological Interventions in Chronic Illness?

I follow and talk with a fair amount of disabled people and disability rights activists and I’m starting to notice that many are deeply deeply distrustful of doctors that suggest that a psychological intervention could help them. I know at one time I used to feel much the same and over the last year or so I have changed my mind. As I think the whole area is really problematic and potentially damaging so I have decided to write a little blog post to try and unpack some of the issues around it as I currently see them.

One of the first things many wish to impress on me (when talking about their disability/chronic illness) is that they are not making it up. I understand the urge to do that. In my daily life I spend an awful lot of time being asked about my condition by doctors, the DWP, cab drivers, new acquaintances, old acquaintances, people from the council and many many more. Most of the time I get hit with an initial wave of denial by them, followed by eventual – if not limited – understanding. I’m sure many of my disabled readers, especially those with invisible or not very well understood conditions will be familiar with the following conversation;

“So if you don’t mind me asking, what’s wrong with you?”
“I’ve got a lot of abdominal damage from multiple surgeries.”
[insert queries about my need for mobility aids]
“What do you do then?”
“I don’t work. I can’t.”
“There must be something you can do.”
[insert a long explanation about why I am unemployable until the penny drops]
“Oh, I’m really sorry.”
[uncomfortable silence]

All throughout it you are placed on the defencive. You are made to explain your condition, the effects it has on your life and how limiting it can be. Of course the majority of it actually stems from the ‘questioner’ not wanting to believe that serious disability can just hit out of the blue. Most people know it is some thing that can happen, the same way they know they could kill someone by speeding. They simply don’t believe it will ever be them and being face-to-face with someone telling them “I was like you until ‘x’ developed, now I can’t work and need ‘y’ assistance to do simple tasks” makes them feel uncomfortable. When they feel uncomfortable they try to ease that by doing things like denying there is a issue, trivialising it, trying to determine what we did wrong (often morally) to deserve it or they start to focus on the nitty-gritty of our chronic illness Columbo style.

Whilst this may make them feel better, it makes many of us feel like they don’t understand or don’t believe us. In the long run it makes us more defencive each time it happens.

Many of us will have also had mis-diagnosis in our past. We all know a CFS sufferer who was wrongly thought to be malingering. My chronic pain was put down to my PTSD until scans combined with my medical history proved otherwise. I know a chap with rheumatoid arthritis that was initially told it was an old sports injury and should simply be ignored. We’ve fought tooth and nail for our disabilities to be recognised and to get a level of acceptance and consideration.

So, when the day comes that one of your doctors pops up and says counselling or anti-depressants can help with our condition we think… Wait a second! We have a physical condition. Those treatments are for mental health issues. We get angry or depressed because once more it seems yet another professional is trying to say it’s all in our heads. It sounds like they are undermining our diagnosis.

The thing is, I actually believe that is often not the case. I believe it is simply sloppy communication from the doctor combined with a certain level of (natural) defensiveness on the patients part.

Having a chronic condition or disability is very often stressful in itself. Pain causes mental stress in most. Not being able to get up because you are simply to exhausted to move also causes mental stress. Not being able to make it to the loo, get your mobility aid into a shop, wash yourself or make a glass of water when you are thirsty all cause additional stress. I don’t believe that most would argue that point.

Stress and the low-moods that come with it are draining. I don’t think many who have dealt with either would argue that either. They impose a spoon-tax on everything making each activity a little more costly. If, through pacing, you’d normally be able to cope with getting dressed, making lunch, doing some painting and visiting family in the evening when you are psychologically stressed you may only be able to manage two of the four.

This suddenly makes managing psychological/ mental stress more important than ever before. It’s also something that most of us are not trained to deal with. It becomes vital if you want to live to the fullest to find away of managing not only your pain/ fatigue but also balancing your mental health. This is where counselling, CBT and anti-depressants can come in. Fenton & Stover (2006) wrote a paper showing links between mood disorders and those with cardiovascular disorders or diabetes. It shows the way that living with a chronic condition can make developing a mood disorder more likely. It makes a case for doctors pushing for holistic care of both the body and the mind.

In my experience I’ve found that when basic CBT is packaged as a Pain Management programme or Expert Patient Programme for people with chronic illness then patients will accept it as helpful. When it involves going to see a overt member of the mental health team they get very upset. I think there are a few reasons for this;

  • The defensiveness most people who have chronic conditions (especially invisible ones) build up whilst fighting daily for recognition.
  • Poor communication from medical practitioners who don’t explain CBT etc… are being offered to help manage the patients mental well-being whilst they try to live with with a stress inducing condition. 
  • Doctors not recognising that the patient will have probably built up a defensiveness around the issue so they don’t take it into account when suggesting management techniques.
  • Sometimes there is also a lack of recognition that not everyone needs help managing mental well-being.

I believe that we need to accept that living with chronic conditions and disability in a disablist society will naturally cause mental stress and that psychological interventions are often a very good way of managing that stress. Knee-jerk hostile reactions to doctors saying CBT or therapy can help manage life with CFS/Chronic Pain/Diabetes/life after an amputation/MS etc. will not help anyone. It also belittles those who have found help through those fields which is bad form. I’m not saying it is something that everyone will benefit from psychological interventions that would be foolish. It would be like saying all people with mobility difficulties will benefit from a wheelchair, it simply isn’t the case. What I am calling for is two fold;

  • I would love to see campaigners and people with chronic conditions/disabilities no longer automatically assuming that any mention of CBT or other interventions designed to help manage mood is the medical profession denying or minimising chronic illness/disability. In some regards, the push to try and help people get a early intervention is a direct acknowledgement to how difficult living with them can be.
  • I also would like to see better training of medical professionals to help improve their communication with patients who have chronic illnesses or disabilities. Especially with regards to suggesting ways of managing conditions and the heightened risk of developing a mood disorder for those with long term illnesses & disabilities.

Fenton, W. S. & Stover, E. S. (2006) Mood disorders: cardiovascular and diabetes comorbidity. Current Opinion in Psychiatry, 19, 421–427.

* For those who don’t know what CBT is here’s a very quick explanation. CBT is Cognitive Behavioural Therapy. It is the idea that feelings/emotions, thoughts/cognitions, and actions/behaviours are interlinked. It looks at the way feeling crappy because you are in a lot of pain can lead to negative thoughts which can lead to us behaving in negative ways (like trying to push ourselves to do too much, ignoring sound medical advice, treating others poorly, self-harming etc…). There are academic criticisms of CBT but none are of the basic tenants (emotions-thoughts-actions being connected). They involve worries that it doesn’t help as well as other interventions with regards to serious psychiatric disorders like schizophrenia or bi-polar disorder. They also suggest that the focus on it is so strong it makes getting funding to look at other possible interventions difficult.

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