Tuesday, 4 July 2017

What Dissociation Feels Like to Me

This is something I vlogged about a couple of days ago (see below). I've been wondering what to blog/vlog about recently, and a friend suggested I write/speak about Dissociation and how I would describe my experience of it.


According to the Merriam-Webster website, dissociation is "the separation of whole segments of the personality (as in multiple personality disorder) or of discrete mental processes (as in the schizophrenias (sic)) from the mainstream of consciousness or of behaviour"¹

You do not have to have schizophrenia or multiple personality disorder to experience dissociation, as it is "one way the mind copes with too much stress, such as during a traumatic event"². Anyone can have short experiences of dissociation, but it is when it becomes long term that a dissociative disorder may be considered. 

The kinds of things you can experience when you dissociate may include:

  • " having gaps in your life where you can't remember anything that happened
  • feeling as though the world around you is unreal
  • feeling as though you are watching yourself in a film or looking at yourself from the outside
  • feeling as if you are just observing your emotions
  • your identity shifting and changing" ³
There are many other things you can experience, as part of dissociation, so no two people will experience this in exactly the same way. As shown on the Mind website, there are clinical terms for each type of dissociative symptom (for example, derealisation) also. 


For me, dissociation is a symptom of the disorder I have; Borderline Personality Disorder . The kinds of things I experience include feeling as if I'm not real, or the world around me isn't real. I can also feel as if I'm watching myself speaking or moving, and I do not feel completely in control. I may feel disconnected from my emotions, or I may start panicking (usually because of not feeling in control). Sometimes, I will look in the mirror and not recognise the person looking back at me. 

I dissociate quite often, and it can be very hard to "ground" myself. Grounding  is "a technique that helps keep someone in the present. They help reorient a person to the here-and-now and in reality". There are various techniques for grounding yourself, and they usually involve focusing on stimulating your five senses. One particular example  asks you to try the following: 

"Look around you. Identify and name:

5 things you see
4 things you feel
3 things you hear
2 things you smell
1 thing you taste "

Of course different techniques will work for different people.Have you found any techniques particularly helpful, if you experience dissociation? Please comment below. 


Resources





⁶ https://uk.pinterest.com/pin/38632509284472245/

Tuesday, 30 May 2017

Dear Distant Friend

I'm writing this whilst feeling very low and forgotten. I know I shouldn't dwell on the past, but it's hard to let go of old friends when they drift away. It's hard because the memories don't go, especially the memories of times you've been there for each other through some really difficult stuff. I can't just forget you, as if you never mattered. Because you really really did.

There could be many reasons why we drifted away, but please don't let it be because I got ill. All I wanted was to be believed and supported. I can't expect you to fully understand (although I really would appreciate you trying to) but when I cancelled plans, please believe me when I say it's because I wasn't well enough to meet up. I would never cancel because I can't be bothered. I loved the times we spent together and I get frustrated with myself for being ill (even though I know it's not my fault).

I miss the closeness we had. I miss how we'd confide in each other and be there for each other, through good times and bad. I wish I could switch off my feelings, because they are so painful, but I can't

One day, I hope I'm able to let you go if we're never close again.





Wednesday, 3 May 2017

My Socially Anxious Mind

"Oh no, I have to walk through a crowd of people. Act normal!

Am I avoiding eye contact too much? I'm sure I am. Just look at people so they don't think you're being weird.

No! You looked too long. Now people will think you're staring at them!

Am I walking weirdly? How about my posture? Am I walking too fast or too slow?

What if I get in their way? What if I try too hard and look like I'm avoiding them?

Do they think I dress weirdly? Is my makeup smudged? Does my hair look unruly?

My breathing's getting faster, I'm sure I'm sweating. I'm sure I look really nervous and suspicious. What if I'm acting suspiciously? Can they tell I'm panicking? Why can't I just cope with this?!

Oh god, I'm sure they can tell I'm panicking. Just. Act. Normal!"

Saturday, 22 April 2017

Accompanying someone to a Work Capability Assessment

I've had a face to face Work Capability Assessment, as well as a face to face assessment for Personal Independence Payment in the past. I'm not sure I thoroughly described my experience of these assessments, but today I want to talk through a Work Capability Assessment my father had recently. I accompanied him and took notes throughout.

We arrived at the assessment centre, with the daunting thought that we'd probably have to park quite far away. From my experience, I know that there are a lot of cameras outside these centres and (also from my experience) there's a very high chance that the assessor is watching you to see how far you walk from your car/stop to the building, and they will write their "findings" in your report.

Luckily, we found a space just a few metres from the building. As we entered, we were greeted by a G4S security guard; who immediately asked to see our appointment letter. They also asked if my father could manage stairs or a lift. Now we were under the impression that the assessment would be held on the ground floor, and I made this fact very clear to the security guard. I also mentioned that, although my father could manage to use the lift, he wouldn't be able to use it in the event of a fire & would not be able to use the stairs. The security guard accepted this (reluctantly) and showed us to the ground floor waiting room.

The waiting room was empty, apart from one elderly woman who was noticeably struggling with pain and balance. Although the waiting room was small, there were two cameras strategically placed to film anyone waiting for their assessment. I asked the woman if she was ok, and if she needed a cup of water (there was a water cooler nearby). She declined, but told me she was very nervous about her assessment, and was fed up that she'd been waiting 45 minutes already. I told her I thought that was awful, and she replied that the couple before her had been waiting over an hour. Just before we were called in (after a receptionist came to check my father's ID and sort out travel expenses), the couple the woman had mentioned, came out of the assessment room. One of them (I assume was the claimant) was clearly in agony and could barely walk. People who are struggling this much, should not have to make their way to an assessment. They should either be assessed on paper, or in their own home. Unfortunately the rules (for an ESA claim at least) state that a doctor's note is required before a home assessment is considered. There's not much time to organise this, so this means that people are having to drag themselves to assessment centres that are not always suitable for their needs.

A rather snooty healthcare professional came to call my father in for his assessment. It was easy to tell he was watching my father's every move as we walked towards the room. I have no doubt that this will be (inaccurately) noted in the ESA report. We sat down, and I got out the folder of evidence we wanted to show, as well as a notepad and pen. The "healthcare professional" (I have no idea what his actual profession was, and his badge only said Healthcare Professional) noticed this, and commented that I was allowed to take notes as long as they were just for reference and not to be used in any investigations (hmm). I gave him my most patronising smile and said that these were just for reference. It was obvious to me that he wasn't happy about this, but there was nothing he could do. I know what's allowed. One thing I wasn't happy with, was that he didn't even introduce himself to us.

The assessment then began. The questions asked first were to do with the medical conditions my dad was claiming ESA for. The assessor went through each condition and asked how long he'd had it for, who diagnosed him, any investigations he'd had, what treatments he was on, operations he'd had, whether he'd noticed any improvements, and which specialist/s (if any) he saw for these conditions. What I found was that I had to reword some of the questions the assessor asked, in order for my dad to understand them. The assessor spoke quite quietly, mumbled a lot, and didn't word questions in a clear way. For example, when asking about my dad's total knee replacement surgery, he asked how he was rather than whether he felt there'd been any improvement since the operation. For some, it may seem easy to get what the assessor meant, but when you are put on the spot, it's much better to be asked questions in a clearer way.  

We next went onto the tablets my father is currently on. I'd brought them with me, so put them on the table so I could show each box to the assessor. He asked what my father took each medication for, how often, how many at a time, what strength, how long he'd been on them etc. As my dad answered, the assessor checked through each box (presumably to see if dad was telling the truth...).

After this, the assessor asked how we had travelled to the assessment centre, and how long it had taken us. He also asked who dad had travelled with (me!), my name, and age.

We discussed sleep problems next i.e., did dad have any, why he thought he struggled with sleep, how long he slept on average etc.

We then went onto the questions asked in the ESA50 (the limited capability for work questionnaire). The assessor started with personal care questions; such as washing and dressing. He asked how long it took to get out of bed, whether he needed help with dressing or used any aids (bed included). He also asked whether my dad was able to wash/dress his upper and lower body, have showers etc. My dad made sure to mention how much he struggles, and how pain and stiffness severely affect him.

Household tasks, cooking, shopping, and leisure activities were the next topics the assessor asked questions on. He asked what types of chores & cooking dad could manage, how often, whether he needed help, why he struggled and so on. I told the assessor that there's not much we can manage and I have to help my dad if his pain gets too much or he becomes confused.

As for shopping, we do nearly all of ours online (my mum and I take turns with this, as dad can't use a computer). We only go to the shops for a couple of bits (bread and milk, for e.g.) The assessor asked if we walked to the shops, and how far away they were. Dad said that the shops were only 5 or 10 minutes away, but we still had to drive there.

Dad was asked if he had any hobbies, but there wasn't much to discuss on this topic. His concentration is poor, and he doesn't have the energy spare for socialising so it's just light reading and watching a bit of television. The assessor then asked how long dad could stand/sit for. He tried to lead dad to agree with his suggestions for an answer (standing/sitting for 45 minutes, or 2 hours?). Dad was already exhausted and needed prompting, so I told him that it was more like standing for 5 minutes, and sitting for 30 minutes before having to sit back down or move around. This was due to stiffness in joints and pain. I'm hoping the assessor noticed that my dad had to get up a few times during the assessment, for these exact reasons.

The last question asked was how long my dad could walk for, before having to stop. I notice that assessors tend to ask how long (time taken) rather than how far (distance). This does not lead them to an accurate answer for how far a claimant can walk, however, and I think they do this on purpose. No two people will travel the same distance in the space of 5 minutes, for example. One may be able to walk 200 metres, whilst another could only manage 50 minutes. I believe the assessor predicts the furthest distance walked in the time specified; which of course makes the claimant appear more able than they are. I noticed that questions were repeated and reworded sometimes, in order to supposedly "catch us out". I think our answers were consistent though, and I'm glad I'd made my dad aware beforehand that this would happen.

The last part of the assessment was the clinical one; where dad had his blood pressure checked, then had to repeat some exercises (if possible). This consisted of bending/turning his head, moving his arms forward, backwards, to each side & over his head. He also had to make a fist with each hand, and push against the assessors hands. Lastly, he had to sit down and stretch and bend his legs, then push each one against the assessor's hands (both in front and behind).

At the end, the assessor explained what would happen next (writing up the report, sending it to the decision maker etc) and that we could ask for a mandatory reconsideration if unhappy with the decision. We were so glad to get out of the building soon after this!

So that was the face to face Work Capability Assessment! I hope my account of it may be helpful to anyone waiting for theirs. I'm no expert, just someone who has been through the process, but I am happy to read any comments or answer any questions you may have. If I'm not able to answer your question/s, then I will let you know where you may find the answers.

Sunday, 2 April 2017

Validation

A lot has happened since my last post about mental health . I've had two Community Psychiatric Nurse appointments; to discuss my main problems and where to start with treatment. I've also had a very thorough assessment with a Trainee Psychiatrist, and a Consultant Psychiatrist.

First CPN Appointment - 

My vlog below explains how my first CPN appointment went but to summarise; I was asked similar questions to those at my initial Community Mental Health Team assessment. I was also asked how I'd been since my assessment, and my main reasons for asking for help from the Secondary Care team. I explained how my last therapy session had gone (see My Mental Health Timeline and my vlog A Referral to CMHT for more details), the kind of help I felt I needed (beyond therapy) and the fact that I thought I might have Borderline Personality Disorder.

Once the CPN had asked all the questions she needed to, she gave me her impression of what support she believed would be best for me. At first she wondered whether Cognitive Behavioural Therapy, at Primary Care level, would be more suitable. After I explained more about my needs, however, she decided that some short term therapy for specific problems may be what I need at the moment. She also said that she would get a Consultant Psychiatrist appointment for me, to review diagnoses and medication.




Second CPN Appointment

My second CPN appointment was carried out at home. She asked how I'd been since the last appointment; to which I answered "a bit all over the place again". We went over my responses to questions about my main issues now, any relevant information from the past and any significant events in my life that may have led to my problems now. She asked me to explain my mood swings, how often I have them, how extreme they are, whether anything triggered them and how I coped with them. We went over the medication I took, and whether it helped me at all. Finally, she asked me some more specific BPD-based questions (relationships, mood swings, impulses, feelings of numbness etc). She concluded by suggesting I do some Self Compassion work with her and a support worker. She felt that this would be a stepping stone for me. I will be meeting the support worker (and CPN) on 11th April for this. I also have another CPN appointmen on 24th April, so will let you know how these went.


Psychiatrist Appointment

 A couple of days after my CPN appointment, I had a psychiatrist appointment. I saw a trainee psychiatrist for this, and was asked a lot of questions to cover a whole variety of mental health problems. As well as questions about depression, and various anxiety disorders, I was also asked about my experiences with paranoia, delusions, hallucinations, mania, impulses, and any instances of aggression. The amount of questions asked were exhausting and overwhelming, but I was glad that I was given an opportunity to talk about the kinds of symptoms I had that didn't just fit anxiety and depression. It helped me to remember the things I needed to talk about too, and I honestly don't think I forgot to mention anything! I have had a hallucination and some delusions before, although these aren't regular occurrences at all. I do get mild hypomania sometimes too, and have had impulsive behaviour (although these don't tend to go further than urges now).

The psychiatrist took lots of notes on what I'd mentioned (even things I weren't sure had happened often/severely enough to be relevant) and also asked about my request for a BPD assessment. After asking questions, more specific to the Borderline Personality Disorder diagnostic criteria, she discussed my responses with the consultant psychiatrist. He came into the room, and asked me more questions (to be absolutely sure, I guess) and then confirmed I had Emotionally Unstable Personality Disorder (aka Borderline Personality Disorder)

The consultant also discussed medication with me. He felt that I should stay on the Sertraline 200mg as it helped a bit, and suited me. In order to help balance my moods, he also prescribed the anti-psychotic Aripriprazole. I'm to take that at 5mg per day for a week, then 10mg per day.

Overall, I'm really pleased with the support I'm getting from the mental health team so far. I was so nervous about opening up about the diagnosis I thought I had, and what help I felt I needed. It was a bad start with the therapist, so I wasn't holding out much hope, but I'm glad I didn't give up! As well as support, as this blog post title says, I've felt validation.

Monday, 13 March 2017

Mental Health Questions Asked at Work Capability Assessments

(TW: Suicide)

Since my first Work Capability Assessment, my mental health has definitely declined. Throughout the process for claiming Employment and Support Allowance, claimants are treated as if they are faking/embellishing their disabilities. Letters from GPs, specialists, therapists etc are given little or no consideration in deciding whether someone is "fit for work", "fit for work related activity" or not fit for either.

There's a lot of pressure from filling in lengthy forms, gathering evidence (in the hope it will be considered), sending sick notes in on time, sending assessment forms in on time, being able to explain your disabilities to an assessor & hope they will not twist or completely disregard your words. This is all before a decision has been given, and already it is not surprising that someone's mental health will suffer.

A particular issue with Work Capability Assessments is how the assessor asks mental health-based questions; primarily suicide-based ones. Claimants are asked questions such as; "Have you ever tried to harm yourself or take your own life or needed to go to hospital?"¹, "do you have any intentions or plans to hurt yourself currently?"², and "what is it that stops you from acting on the thoughts that you have?"³ These questions are asked in a hostile environment; where the claimant is observed right from the moment they arrive in the car park of the assessment centre. To be asked such personal questions in that context is extremely distressing and has led to worsening of people's health conditions.

At my first Work Capability Assessment, I was asked if I have had thoughts of suicide, why I had those thoughts, whether I had attempted suicide, and what stopped me from attempting. It took a while for me to really open up about my suicidal thoughts to my own therapist, so being asked those questions so brazenly, by a stranger no less, was very distressing. I found it very hard to answer, and I burst into tears as I was made to think about my darkest times. The assessor was barely sympathetic, and was more interested in getting me to answer these questions.

Maximus has been criticised for the types of suicide-based questions they ask claimants, but their response has been that "Every healthcare professional we employ is trained to ask people with a mental health condition a series of clinical questions to assess how their condition affects their daily lives."

A spokesperson for the Department for Work and Pensions (DWP) said "If an individual has mental health issues or there is an indication of suicidal thoughts or intentions, this will be given careful and sensitive exploration to establish the circumstances"

According to a Freedom of Information request in 2014 (I haven't been able to find anything more recent unfortunately), WCA assessors get approximately 17 days' training if they are nurses or physiotherapists, and less than 17 days if they are doctors. I've looked through the PDFs released as part of the response to the request, & it appears that actual mental health training is only covered in just over 4 of those days for nurses, 7 days (including overviews of some mental health conditions) for physiotherapists, and just 2 days for doctors.

The British Association for Counselling and Psychotherapy (BACP) have ethical frameworks for working with suicidal clients. According to this, factors such as the following determine the best way of approaching the topic of suicide and what action to take:

  • The context in which therapy is taking place
  • The relationship with the client
  • The boundaries of confidentiality agreed
  • The confidence of the practitioner to explore the meaning of suicide

In the Risk Factors section of the BACP ethical framework document, it is stated that "Practitioners need to be aware of factors that might suggest their client is in a high-risk category" (for acting on suicidal thoughts). This doesn't mean that those in statistically non-high risk categories are unlikely to carry out any plans, but gives a guideline that can determine "the dialogue that then needs to take place with the client". Sources of information on high-risk category clients can also provide vital tools that support risk assessments. 

When exploring how to word questions based around suicidal thoughts & plans, the ethical framework document says "The wording of such questions is important and needs to be treated sensitively. Much will depend upon the setting in which the therapy takes place, the age, understanding, or emotional capacity of the client, and the individual approach of the practitioner" "It is important for practitioners to think about how they might ask a client about suicide. However, best practice suggests asking clearly, openly, and empathically"

This document goes on to explain that it is also important to explore protective factors with the client, and encourage them to use those support networks etc. If the client is at high risk of attempting suicide then specialist mental health services may need to be involved. 

And this is all within a therapeutic setting. A work capability assessment is by no means a therapeutic setting, & the vital resources for dealing with suicide risk are not there; which makes approaching the topic of suicide with the claimant potentially very risky. This could quite easily lead to the worsening of suicidal thoughts and even plans. As for the discussion of protective factors, this is only very briefly touched upon in Work Capability Assessments, so is very unlikely to counteract the impact of asking a claimant (for e.g.) if they have considered suicide, and what methods they would use/have used. If risk of suicide needs to be explored, as part of someone's assessment, surely the healthcare professionals involved in the monitoring/treatment of their mental health (therapists, psychiatrists, GPs even) should be contacted? This could also determine whether a face to face assessment would be necessary, or whether it would be likely to cause a significant deterioration in the claimant's mental health. 


Resources:

¹, ², ³ DNS Article - "Maximus 'admits' using brutal and dangerous suicide questions": http://www.disabilitynewsservice.com/maximus-admits-using-brutal-and-dangerous-suicide-questions/

Article in the Independent - "DWP's fit-to-work tests 'cause permanent damage to mental health' study finds": http://www.independent.co.uk/news/uk/politics/fit-to-work-wca-tests-mental-health-dwp-work-capability-assessment-benefits-esa-pip-a7623686.html

Freedom of Information Request: https://www.disabilityrightsuk.org/news/2014/september/wca-assessors-how-much-training

Nurses' training documents: https://www.disabilityrightsuk.org/sites/default/files/pdf/nurses.pdf (see pages 6-7)

Physiotherapists' training documents: https://www.disabilityrightsuk.org/sites/default/files/pdf/physiotherapists.pdf (see pages 7-9)

Doctors' training documents: https://www.disabilityrightsuk.org/sites/default/files/pdf/doctors.pdf (see page 8)

BACP "Working with Suicidal Clients" - Introduction: http://www.bacp.co.uk/ethical_framework/documents/GPiA042.pdf (see page 6)

BACP "Working with Suicidal Clients" - Risk factors: http://www.bacp.co.uk/ethical_framework/documents/GPiA042.pdf (see page 8)


Tuesday, 28 February 2017

"Not really disabled"

The other day, George Freeman (Theresa May's Policy Chief) gave some very insulting and trivialising comments about anxiety disorders. You'll find the details in this article . It seems he believes that those with anxiety disorders are "not really disabled". Apparently all we do is sit at home; taking pills.

After a lot of (very much deserved!) criticism, he responded with a feeble non-apology; where he expressed "regret" that people were offended. Now I do understand that he has had an anxiety disorder in the past & I would never invalidate his experience of that. I do think, however, he needs to educate himself on various anxiety disorders. He may then learn that the symptoms can vary in severity, are complex, and can be very debilitating.

Disability is officially defined in the Equality Act 2010 as this:

"A person (P) has a disability if-

(a) P has a physical or mental impairment, and
(b) the impairment has a substantial and long-term adverse effect on P's ability to carry out normal day-to-day activities."

I cannot speak for everyone with an anxiety disorder/s, but here are the ones that I have and how they affect me.

Agoraphobia

I get very anxious about leaving the house; especially if there are people outside. To travel anywhere, I rely on my dad driving me. I get far too anxious to take public transport, and can't even take a taxi on my own. I can't manage group situations where I have to stay in the room/it'd be considered rude to leave suddenly (such as a class or meeting) and have to be near the toilet or exit if I'm in a restaurant/cafe etc.

Last time I managed to take a train by myself (years ago), I had panic attacks and had to wait for a later train than the one I'd planned to take. I felt very nauseous, dizzy, shaky and sweaty for the entire journey. Once I arrived at my destination, I was physically and emotionally exhausted. I found it very hard to focus, and when I had to change trains, I ended up lost for an hour and almost in tears at the train station. It's a good job the friend I was meeting was a patient one! In order to get home, I had to get my dad to pick me up (the journey takes over an hour by car).

Obsessive Compulsive Disorder

I've had OCD since childhood, and have tried hard to hide my compulsions. On a bad day, it stops me from leaving the house. It makes me irritable, snappy, and has caused arguments in the past. I take much longer to do things than I should, and am often late for appointments because I've had to complete compulsions, or repeat them until I am "reassured" enough to leave the house. This condition makes me feel trapped and, when I did work, it caused me to miss meetings and compromised my performance at work.


Generalised Anxiety Disorder

I don't react well to changes in plans. I need to know what to expect, Usually, my anxiety flares up in response to things, but I do find that I can randomly panic and not know what has set it off. I get panicky about hypothetical situations, and cannot just wait to deal with a certain situation when it occurs. I tend to think 10 steps ahead of myself, and think of the worst case scenario. I will dwell on potential problems; even more so if I cannot think of a solution.

I find I get very paranoid as well, and I worry a lot about people's opinions of me. I worry about losing friends and look for cues that they may be annoyed at me or drifting away. I also am constantly asking for reassurance.

Phone Phobia

Recently, my phobia of this has lessened and I can now cope with making some phone calls. I still find that I get very nervous when receiving phone calls though, and most of the time I will leave it to go to voicemail. I worry about not knowing the answers to questions I may be asked on the phone. I also worry about not having details like reference numbers ready when needed. I often mishear things and get very anxious (panicky even) if I have to keep asking the other person to repeat themselves. When I worked, I had customers react angrily over the phone because of this. I would avoid answering the phone in the workplace, and have been told off by my manager. I think this contributed to decisions not to carry on my temporary contract too.

I cannot think of a job where you are not expected to use a phone, leave the house, go to meetings, cope with changes, be punctual, have good attendance or be timely with tasks. Even without my other mental health and physical health problems, I highly doubt I could manage work of any kind.

So yes, George Freeman, I may sit at home and take pills but there's so much more to anxiety than that, and yes I am "really disabled".