Archive for the ‘ mental health ’ Category

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wait before starting and the current economic situation I’m trying not to get my hopes to high – just in case it gets rescinded.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. 
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Complaining About A NHS Mental Health Service

In my experience many people want to complain about things they don’t like within the NHS. Be it staffing levels, access, choice, quality or any number of other different things. As today I have put aside a little time to deal with a issue within my local community mental health trust I thought I would blog how I went about dealing with it so that others who might be put off by not knowing how to go about it or the stress of doing so can see how simple it can be to make your voice heard.

The Problem

I became a patient/service user back in late 2009/early 2010. I met my psychiatrist once then I was informed  that he had left the practice and that I would either see my new doctor or a temporary locum at my next appointment. Every 2/3 months since that point I have seen a different locum doctor, sometimes I’m fortunate enough to see the same one twice before they move on. Each time I have to see a new doctor I feel I have to start from scratch with them, combat their assumptions/prejudices, explain why I use a wheelchair, talk about my treatment and then debate if the ‘new pill!’ they want to put me on would really be any better than my current medication. I don’t feel like I am getting any value out of these appointments, in fact more often than not they simply upset me because I feel I have to talk about chunks of my history I am not comfortable talking about with someone who won’t be there next time I visit.

Every time I meet a new locum I start by asking if they are permanent and every time they tell me that they have asked to be made permanent but that it’s up to BSMHFT (Birmingham & Solihull mental health foundation trust). So it appears that for some reason or another BSMHFT have decided that they are better off using locums rather than hiring a full time doctor. My cynical side tells me that it is a cost cutting exercise because locums don’t accrue rights & pay rises the way a permanent staff member would. Still, regardless of BSMHFT’s reasons the situation is very far from ideal and I believe is upsetting a number of patients, not just myself.

How I decided to go about making my voice heard.

The first thing I do when I want to complain/make my views heard is try to work out who I need to talk to. When I have issues with a hospital I know that I can just contact that hospitals branch of PALS (Patient Advice & Liaison Service). If my issue is with a GP or dentist I would contact the surgery to ask for details of the complaints procedure. As it’s my local mental health team I would normally call them up and ask for details of the complaints procedure but past experience of doing that hasn’t gotten me very far so instead I look up the BSMHFT website and look for contact details.

Luckily for me BSMHFT has a branch of PALS so my second step is to call them up and to ask how best to deal with the issue. They were very helpful and suggested that my first stop should be trying to talk to the manager of my local community mental health team (CMHT), then if they were unreceptive I should contact PALS again to get some help putting in a complaint.

Next I decide to follow the advice I’ve just been given and call my CMHT and ask to speak to the manager about this. I’m really rather nervous but I really think this is too important to let that put me off. The manager was very pleasant and started by asking if I wanted to talk over the phone or if I would rather make a face to face appointment. I opted for the phone (because my electric wheelchair is broken at the moment) and then explain that I wasn’t very happy with the state of play & listed – briefly – my reasons for this. The manager listened and then proceeded to explain that the CMHT would like the position filled and that there are a lot of patients service users who feel like I do. They are being told that there are plans in place to have a permanent consultant but, they don’t want to make any promises because they’ve been told that before then been forced to back track when nothing came of it. It seems that people think that the position is being left open for a couple of reasons; firstly, as I suspected, locums are cheap and lacking in employment rights and secondly, by having an open position it makes it easier for the trust to reshuffle employees should there be another wave of cuts. The manager agreed to send out a formal complaint form so that I could make my objections known with the hope that if enough people do that it will put pressure on those responsible for allocating staff to fill the position.

Now it’s just a case of waiting for the complaints for to arrive which I will fill out and send off. It’s really important that I do because the chances of todays phone call actually being mentioned to the people who need to pressured (those allocating staff) is pretty slim. A formal complaint will be logged on the system and added to any others that have been sent in and those will make it to the desks of the decision makers.

I hope this might have inspired a couple of people to make their views heard and given a bit of support when it comes to finding out how to do so.

Workfare For The Sick & Disabled

I’m a bit angry and normally I wouldn’t write in this kind of mood, but I think something needs said about this straight away.

Remember when Philip Davies MP came under fire last year for suggesting disabled people work for less than minimum wage? Do you remember how everyone, even members of his own party (Conservative if you hadn’t guessed), called him a prat and ignored him? Well, it seems that some of the coalition took him seriously.

Today’s Guardian leads with the story that disabled people might be forced to do unlimited unpaid labour in exchange for benefits;

I’m sure you’ve all heard about workfare. It’s the governments welfare to work ‘experience’ programme in which they force those who are claiming JSA to work full-time stacking shelves at a successful retail store (with no guarantee of a job at the end of it all) for nought but bus fare. As JSA is such a pitifully small amount, it means that people engaged in workfare are earning a whopping £1.50 an hour, paid by the government, not the shops they are staffing, for doing the same work as someone else earning over minimum wage.

The government seems to think that CV’s that don’t state 6 months compulsory shelf stacking at Tesco are the reason that unemployment is rife in our country. Not the fact there is on average 1 vacancy for every 5 unemployed people. In reality all they are doing is giving major retailers even less of a reason to hire staff. Why would you hire someone to work for over £6 an hour when the government will provide you with someone who will be forced to do the job for free?

Initially it looked like this scheme was simply being directed at those on JSA (which was bad enough) but now it has been shown that they are planning to roll it out to those ESA claimants in the Work Related Activity Group (WRAG) too!

The WRAG is for people who cannot currently work because they are too sick or disabled, but may, in the future be able to do some paid employment. It is not for otherwise fit and able to work people with disabilities and it’s not for people with a cough that will be gone in a fortnight. I’m in the WRAG simply because where I cannot work at the moment, there is a slim chance that one day (which could be a decade or more away) my condition will improve and I’ll be able to work. Also one should bear in mind that ATOS assessments to decide which groups people are placed into are very often found to be incorrect. Many in the WRAG should actually be in the Support Group, but have been poorly assessed.

Still, they are planning to force people like me to start working unlimited hours of at one of their workfare providers, if we don’t our benefits will be cut or stopped. Of course if we do then we will presumably be booted to JSA as we ‘prove’ we are capable of some work.

NAWRA says “This proposal is very worrying. There are completely inadequate legal and medical safeguards – bearing in mind that these are people with long-term health problems and disabilities, often serious ones. Compulsory, unpaid work may worsen some people’s health, with the consequences of the DWP’s savings being passed on to the NHS at greater cost. If jobs are there to be done, people should get the rate for the job, instead of being part of a growing, publicly funded, unpaid workforce which, apart from being immoral, actually destroys paid jobs.”

Disability Rights UK adds,  “…it is questionable whether genuinely disabled people should be under mandatory and often inflexible systems when the focus for many should be on managing health conditions or rehabilitating after an accident or injury.”

The RCPSYCH also raises concerns about “the capacity of relevant members of staff in Jobcentre Plus and work programme providers to make appropriate decisions about what type of work-related activity is suitable for claimants with mental health problems”.

I shall let you know if I get drafted into workfare. I will try and grab some pictures as I lean forwards in my wheelchair and vomit all over a Poundland. Or I will grab some quotes from customers as my PTSD gets triggered and they get to watch me having a flashback, I may even punch one as I try to fight for my life. Or I may even try record the reactions from staff as I sit for hours in a staff room crying and screaming in agony with my bowel obstructed downing Oramorph. It’ll be great.

If, like me, you don’t think workfare is a decent, humane or even possibly legal idea and you fancy doing something about it then there is a government e-petition you can sign here. You can contact your MP and ask them to lobby against it. You can also follow Boycott Workfare’s website or twitter feed.

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.

"Oh… So Where Did You Serve?"

“Oh… So where did you serve?” Is a question I’ve had a few times since coming out of the mental health closet and openly talking about my PTSD (post traumatic stress disorder) diagnosis. I always reply that I have not been in the military, nor have I spent any time in a war zone.

It’s funny how much the media influences the publics perceptions of disorders. Most people when picturing a PTSD sufferer in their minds get a picture like the one below:

Picture of a white, male, American soldier in uniform looking overwrought

The average PTSD sufferer/survivor on a global scale is actually depending on your preferred way of looking at it is female and not a soldier. They are someone like me. Someone who has been exposed to a very traumatic event that was “outside the range of usual human experience.” Things like witnessing a violent/ unexpected death, rape, torture, sexual abuse, witnessing or experiencing life-threatening physical assault, terrorism, being held hostage and similar are often causes of PTSD. Where many people experience some level of trauma in their lives only about 8% of them will go onto develop PTSD.

So, what is PTSD? It’s a severe anxiety disorder caused by physical trauma and/or psychological trauma. It’s thought to happen when the brain is exposed to extreme levels of adrenaline which causes the brain to store & deal with the trauma in a disordered manner. People with PTSD have the following symptoms as a result of their exposure;

  • Persistent Re-experiencing – flashbacks (v.different from memories), nightmares, intense negative reactions to things that remind them of the trauma and other re-experiencing of the event.
  • Persistent Avoidance & Numbing – disassociation, seriously reduced ability to feel certain feelings and a desire to avoid anything that reminds them of the trauma.
  • Increased Arousal – hypervigillance and associated problems like difficulty falling/staying asleep.

In my case I spent years in a extremely abusive relationship where I was frequently abused (physically, psychologically & sexually) in horrific manners during which I was repeatedly exposed to the imminent possibility of my death. Looking back I’m still not sure how I survived some of the stuff. It all feels like a nightmare I can’t quite forget yet can’t bring myself to properly think about.

It’s funny, I can type about it sometimes but yet if I try and talk to someone about these things face to face my brain simply shuts down on me. I can’t hold the memory of what I was trying to say in my mind and I just end up opening and closing my mouth and eventually apologising for the fish impression and changing the subject. My brain is very good at blocking off the traumatic memories by either making it all feel like a dream or a story. Sometimes it shuts me down and I simply sit and stare into space, it feels like being simultaneously awake and in a deep dreamless sleep. Othertimes it drives me away from things that are likely to trigger flashbacks or re-experiencing. Occasionally it causes head pain so intense I feel like my head has been cut open again. Normally it just makes me forget things that I find extremley difficult to deal with which can be very problematic.

For the last year or so of my relationship and the years that followed I would have these intense re-occuring nightmares where the same horrific acts were being carried out by my ex. I’d find I would be unable to recall how I got cuts & bruises or why I was suddenly terrified of seemingly harmless things. It wasn’t until I escaped his reach that I really started getting flashbacks. Waking nightmares, memories so powerful they are indistinguishable from reality, like having time-travelled back to the time of the trauma and being forced to re-live it again and again. Imagine the most horrendous thing you have ever exprienced, the worst thing to have happened to you, forever etched in your mind. Haunting you with not just the old emotions but the smells, the tastes, the senstations on your skin. I hate them most of all. I think they are now the thing I’m most afraid of in the world. When they started kicking in I broke down. Having recently become disabled I lost the ability to cope as my mind crashed six months after my body. I lost the ability to sleep, lost the ability to disassociate for a while and ended up ready to kill myself. Luckily my GP intervened and got me psychiatric help where I was finally diagnosed and I began to get treatment.

I’m saddened to say that I’m not alone in this. I’ve met hundreds of PTSD sufferers online over the last few years and the overwhelming majority are female victims of domestic abuse, childhood sexual abuse, rape and domestic violence. Not white male soldiers – though I’m not ignorant enough to suggest my experiences are going to be representitive. Yet we often seem to be ignored when a discourse is opened up about PTSD, especially by the media. As well as the issues with inaccurate representation by the media fueling public stereotypes and misunderstandings it also can be very damaging for victims of the above traumas. Denial, silencing & victim blaming (often thanks to that pesky Just World Fallacy) is a really common experience for those of us who suffered in these ways. These problems create a feeling that people don’t/won’t take the horrid thing that happened to you seriously and more often than not they get internalised making survivors blame, silence and doubt themselves. Naturally this makes healing far harder. When the media ignores stories like yours and paints your struggles as being somehow less traumatising it adds to this nasty mess.

The more I think about it, the more sure I am that there is a gender bias in the reporting and coverage of PTSD which fuels the blackout of ‘womens issues’ with regards to the disorder. PTSD from ‘masculine’ causes like the serving in the military or in the emergency services is talked about far more commonly than PTSD arising from incidents that disproportionately happen to women*.

For plenty of reasons, male dominance in the media being a big one, people like myself are being left out of the PTSD discourse. If we want to move forward and stop creating a culture where some traumas are problematically rated as ‘less deserving’ than others, then things need to change.

* rape, domestic abuse, sexual assult – please note that no where did I say these things don’t happen to men.

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