Asking for Help

Trigger Warning: Suicide

This post is pretty much a follow on, from my previous post, More Mental Health Rambling but also a (hopefully fluently written) collection of my thoughts after discussions on Twitter, about Mental Health services. What brought on these discussions was the very upsetting death of Robin Williams, the way the media handled reporting his suicide, and the recurring phrase "ask for help".

As I mentioned in my previous post, I recently had to cancel CBT sessions for various reasons; the main one being that I can't attend sessions on a weekly basis while I'm looking after my mum. I don't think I could've gone about it in any other way, because I was on the verge of being discharged for missing so many appointments (due to ill health) anyway. In part it is my doing (though I feel as if I had no choice) but I feel as if I'm left with no support for my mental health.

I'm still taking my Amitriptyline (50mg a night) for the Depression; although my pain specialist said I should be starting on 75mg per night. This is something I need to discuss with my GP soon. I don't know whether it is down to the pills, or because I haven't really got much time to think about how I'm feeling (I'm certainly trying to avoid thinking about it anyway), but I haven't had any really big, really scary dips in mood recently; where I get the massive suicidal urges (although I am still getting urges occasionally). I do still think about suicide on a daily basis,  but I guess this is in more of a passive way, as I have no plans and I feel sort of safe right now. I know I'm not fine in the slightest though. I don't feel like I've improved, I just feel like I'm teetering on the edge constantly, trying to just hold on not for my sake, but for my mum's.

I do need some sort of support, but I'm just not sure what to ask for or how I could access that support when I'm unable to travel by myself and no one is available to take me to appointments if they're anytime before 5pm on a weekday. Below, are the kind of things I'd like help with/like to achieve, the difficulties I have with access, need for flexibility with times etc, and the services I know of in this area. I'll try and list these things in a clear way, although I'm aware I probably don't sound clear at all in this post!

What I need support for:

• To find a way to lessen these suicidal thoughts. They tend to be triggered when I think too much about the future, I convince myself I'll lose all my friends and don't deserve them anyway, I get too involved in political discussions or I spend too long reading about all the bad things happening in this world. It makes things feel hopeless. It makes me feel like I don't bring anything positive to anyone's life. I feel useless, guilty and then guilty again for thinking about suicide because I know there are consequences. I wouldn't want to hurt anyone, but I think I hurt people anyway, by talking about this.

• To become more motivated & have more faith in myself. Yet again, I've failed to carry on with my CBT diploma. It's something that would be quite an achievement and yet I keep putting it aside for a day when I'm feeling well enough (physically and mentally) to concentrate for a decent amount of time. There've been times when I've wanted to write more blog posts, but I feel as if I'm a terrible writer and I won't explain myself properly. I keep stopping typing this particular post, and being tempted to delete the whole thing because it looks like a big mess of words to me. 

• To be even more assertive. At some point, I'll have to talk to my GP again about the hypermobility, subluxations etc. It's been dismissed twice as part of the fibromyalgia, without proper assessment. I also need to make it clear that I need stronger pain medication. Finally, the catch 22 is that I need assertiveness to ask my GP for mental health support to help with (amongst all the other things) being more assertive!

• To start travelling on my own to see friends & actually have a social life. The Fibromyalgia makes it very very difficult to travel for long anyway, and I don't feel safe on my own when I'm extremely dizzy, nauseous, weak etc, but a big reason why I don't travel alone is because it terrifies me. I get extremely self conscious and nervous just walking out my front door. If I need to get to the post box (just a few houses away on the same street) then I will wait until it's quiet, I won't look at the traffic, I won't look at anyone walking past me, I'll just try and distract myself by admiring peoples' gardens as I walk past. All the while, I'll be worried about the way I look, where I'm looking, whether I look nervous, whether I'm acting strangely, whether I walk strangely, just anything that could possibly draw attention to me, I'll worry about. And this is just a short walk to the post box of all places. 

          It's been a while since I've met up with friends (and that was with dad driving me there and back, in my own city). Being in busy areas, like the city centre, is exhausting. I worry that I'm not being chatty enough, I'm rambling too much and that I have to stop and rest too many times. But I like looking round shops, I like sitting and chatting in a coffee shop, and I love seeing my friends. I have wondered about asking them to come visit me, but it seems to much to ask of them when it requires so much travelling on their part. I need to be able to travel to see them, at least to the next town, so I'm not always expecting them to get to my town. There's nothing quite like chronic physical and mental illness to make you feel like a crap friend!

• To access therapy to help with my wasp phobia. This one really has been put on the backburner because it just wasn't a priority, in comparison to the suicidal thoughts. It's only really something that's an actual problem in warmer weather, when the wasps are out. I'm really trying to tackle it on my own, but it is difficult. Maybe I need to write about this in a separate blog post? 

• To be able to cope with being exposed to discussions about abortion, without being (as) triggered. This is something I go into more detail with, in a previous post entitled "Am I triggered?" The last therapist I saw, said these feelings were normal and fine though (even though I said it was a massive problem for me, and something I needed help with getting through).

• To tackle the anxiety I have, related to my overactive bladder, and to stop my obsessive routine in the bathroom. If I'm not going anywhere, and I'm able to use the toilet whenever I need, I can pretty much 'go' as normal, although I will still get the bladder frequency. If I'm in a public toilet, or I'm about to travel anywhere, however, I have a strict routine when it comes to going to the toilet. This is quite an embarrassing thing to talk about, but I need to be honest. I have to 'go' 4 times. Each time, I have to wipe 10 times. If I'm about to travel anywhere (especially a longer journey) I then have to 'go' another 2 times, wiping 10 times each time again. To me, this sounds like a really unhealthy routine and I'm surprised I haven't damaged my bladder by now. I have tried so hard to break out of this ridiculous cycle, but when I try not to 'go' as much, or wipe as much, I spend the journey absolutely bursting for the loo and seriously worried that I won't get to a toilet in time. So I resort back to my routine. The problem is that sometimes, even when I've done this strict routine and feel that I'm ready to go out of the house, I still have a big urge to go to the toilet. I've been like this for a few years now and I hate it. 

Mental Health Services in my area:

• Healthy Minds: A Cognitive Behavioural Therapy based Psychological Therapies service for people with common mental health problems e.g. depression, anxiety & stress. In order to access this service, you have to approach your GP first, who will give you a self referral card. You use the details on the card to contact Healthy Minds and arrange a phone assessment. The Psychological Wellbeing Practitioner who assessed you will then discuss with you, options for treatment or self help resources. If one to one therapy is appropriate, then you will either see a Psychological Wellbeing Practitioner (aka Low Intensity Therapist) or a High Intensity Therapist. In my case, I saw the Low Intensity Therapist for my first lot of CBT, on a fortnightly basis (6 sessions) and then the High Intensity Therapist for my second lot of CBT, on a weekly basis (intended to be 12 sessions, but I only completed about 6)

• RAS team/Crisis and Home Treatment Team: This service is for people going through severe mental health crises. Either your GP or Mental Health Professional (e.g. psychotherapist) will refer you to the service if they feel you need it. I've been referred once because of the severe suicidal urges I was getting. You are supposed to be seen either on the same day you're referred, or within 48 hours of referral. Someone from the team will meet you for an assessment and then will decide if you need further care from them, if the care you're getting already is enough, or whether you need to be referred elsewhere. I'm not saying for a fact that this is the case across the country, but in my case, I had to get myself to the local psychiatric hospital (luckily dad was on afternoon shifts, so could get me there the next morning) and after assessment, the nurse decided that I didn't need further care from the crisis team, because I hadn't tried to harm myself yet. I was discharged back to my psychotherapist. After that, my therapist did ask me if I wanted to be re-referred to them, as I was no better, but I felt I'd only be wasting their time, as they couldn't actually see me unless I'd planned to harm myself, or actually attempted to/had harmed myself. I wasn't given the option of having someone meet me at home. 

• Expert Patients Programme: This isn't strictly a mental health service, but it does involve mental health. It is a programme involving regular group sessions to help people with long term physical illnesses, to manage day to day living and wellbeing. 

• Rethink: This mental health charity offers a Community Support Service in my area. It offers one to one support, workshops and group "coffee and chat" sessions in various places around the city. Services are available from 9-5 on weekdays. 

Problems with Accessing Services:

• Times available: From what I've seen, the non emergency services only run from 9-5 on weekdays. There is no one available to provide transport for me between these times. I may be able to get the very occasional lift from a neighbour, but there is no way this would be possible on any sort of regular basis. 
• Flexibility with location: I will continue to check and re-check, but as far as I've researched, if it isn't an emergency then home visits are simply not offered. You have to get yourself to the appointments and missing too many will mean discharge back to your GP. If I'm not able to get myself to these appointments, then does this mean I'm ineligible for any kind of mental health support beyond medication?
• Types of services available: If I need a service that will take into consideration the impact that my physical health has had on my mental health, then my only option available is one that involves group sessions. This is simply not possible for me. My reaction to the surprise group induction at the Work Programme shows how well I cope with group sessions...

I think what is needed is a flexible mental health service, that someone can attend after 5pm. My GP surgery provides appointments from 8.30am-6.30pm on weekdays, with an extended hours service til 8pm on Thursdays. I wonder whether something like this could be implemented in mental healthcare? 

There also needs to be easier access to home visits for people with chronic physical illnesses and/or mental illnesses which severely impact being able to leave the home/on their own. 

Finally, it'd be really useful to have some sort of support to help me with travelling on my own, as this is clearly an issue that I need help with. 

With the severe cuts to mental health services, I don't see any of this even being considered anytime soon in this city, but it is definitely needed, not just by me, but by anyone who finds the support available just isn't flexible enough for their needs.

More Mental Health Rambling

I cannot understand my moods at the moment. Well, I say "at the moment" but it's probably been for the past few months now.

I suppose this is part of the Depression, but I either seem to have a real lack of emotion (feeling numb, not sure how to respond when someone asks "how are you" because honestly? I really don't know. I just 'am'. That's it.) or I have days filled with a million different emotions, that I feel far too intensely. It won't take much to make me cry (seriously, just someone showing a little kindness will set me off!), I'll get really really angry at things (just hearing dad talk about work made me very angry. I just wanted to scream at him to shut the hell up!), the silliest jokes, comments etc will have me giggling like a teenager, I'll get really emotional over a movie (far too excited, far too upset etc). I just want to feel emotions 'normally' and feel like I have some sort of control over them.

Trigger Warning: Weight/Body image

One change I've made, is to stop taking the contraceptive pill Microgynon. When I started on it, I put on at least a stone. At the time, it was a good thing, but I hate it now. I  only stopped taking the pill about a month ago, and these moods have gone on for much longer, so I'm not sure if this is something I can blame on hormones. Besides, I've not been sexually active in over a year, I don't see it happening anytime soon, so what's the point in taking it at the moment? I'm having real self esteem issues, and I'm hating how much weight I've put on. Honestly, it's not much really, but I feel huge. I want to feel good about myself for something, but I just look at every part of me (personality as well as looks etc) and I'm not happy with what I see. I can't even just accept it. For someone who takes a lot of selfies, I sure do hate the way I look. Nothing wrong with faking a bit of self confidence though I guess.

My mum recently had a big ankle operation, and can't weight-bear for at least 4 weeks now. I'm doing what I can for her, when dad's at work, but I'm struggling A LOT. I pretty much start the morning in tears, but getting on with things. I feel constantly sick, dizzy, wobbly, uncoordinated (I'm covered in bruises because I keep walking/falling into things) and breathless. My pains are worse too, and the Naproxen is doing NOTHING. I wish the doctors would give me pain meds that are actually strong, and potentially work. I may be small, but small doses just aren't going to cut it.

I really wanted to vent earlier today, but I couldn't find the words. I'll try here. Basically, I feel like I can't look after my own health whilst I'm looking after mum. I have to push and push and push until I'm in so much pain/so exhausted/dizzy/breathless that I have no choice but to lie on the sofa. And then I only get a very short break before I have to do it all again. I've tried to explain it to mum, but have just ended up making her feel guilty (which is NOT what I intended in the slightest. I'm trying to emphasise that I CAN'T not I won't). I just wish there was someone else around who could be there for her when I'm not able to.

She had an appointment today, so my dad and I came with her. I'm going to sound ridiculously self absorbed here, but whenever she was in lots of pain, dizzy, exhausted, whatever, the nurses (and dad) were right there, seeing if she needed anything, asking how she was, trying to set her mind at ease etc. I of course wanted to do the same thing, but I was already in a real irritable, self pitying mood and honestly? I felt jealous. Not jealous of the pain she was in. I can't compare it to mine, but I know it gets very bad and causes nausea etc. I was jealous because people noticed, they cared, she wasn't invisible! Maybe it was just because this appointment was for her, not me, but I had a few times during that appointment, where I was in a lot of pain (I'm sure you could've seen it on my face) and I was stumbling about with dizziness. I also had that weird experience, of feeling like I'm not really there (dissociation?) I must've looked like I was struggling, but no one noticed. It made me realise just how invisible, my invisible illness can be sometimes.

I wonder how much pain my doctors realise I'm in, just how constant these pains are (they're not just mild aches), how much the other symptoms affect me, how much I struggle to do things and how hard I try to do them. In public, it feels socially unacceptable to show you're in pain, so I grit my teeth and bottle it up (I might end up crying out a bit, not loudly, when I have no other choice). Maybe I should just make it more obvious? But then again, I don't like causing a scene, I don't like being fussed over. I just want people (medical professionals, not the general public) to actually notice I'm in pain, without me having to explain it (with the fear of being doubted because I'm not yelling etc) and to treat me as someone who won't just be fobbed off with low dose meds.

This sounds so terrible and probably is one of those "be careful what you wish for!" things, but sometimes I wish something a bit more dramatic would happen, just so the doctors will realise this isn't just a few mild aches and pains, with a teensy bit of dizziness. If that's what it was, I'd be looking for a job/in a job by now.

I've cancelled my CBT sessions, for various reasons. I can't get transport there, I need to be in the house constantly, for mum, and I really don't think these sessions are helping. I mean, sure, there are some things I can try (mindfulness, going for a walk, monitoring my moods, trying to do nice things for myself), which I can just about achieve on better days. My lack of motivation seriously affects my ability to do these things to help myself though, even on better days. If I do (some of) these things, I may get a slight temporary increase in mood, but that's it. So I guess it's my motivation that needs tackling, but how? It takes motivation to do anything, right down to 'basic' things like getting out of bed, getting dressed, eating (even a really simple meal). It may make me sound lazy, but it's not laziness. On better days, I do far too much then end up feeling depressed again, because I've made myself flare up yet again. I get so frustrated with my own body.

I guess this could all be summed up as this; I am very fed up.

A Small Victory, for now.

I'm finally in the Support Group for ESA.

I'm quite lucky, in that it didn't take as long as it could've to happen. It was a pleasant surprise too! So here's my 'journey' with ESA so far:

April 2013, on the advice of the Citizen's Advice Bureau, I applied for Employment and Support Allowance. I had read others' experiences with applying and being assessed for this, so knew it would be difficult. I had no other choice though. I simply wasn't well enough to work, and had no other income to support myself.

The first form to fill in, is the ESA1. In it, you give some details about your illness/disability, about your living situation and your finances. There's also space to include partner's information, if you live with them. It'd be worth double checking on the main gov.uk site, in case the application process has changed, but this is usually the form you would fill in and send back. Towards the end of that month, I received my decision letter to say I was entitled to ESA and would receive the assessment rate. Along with this letter, came my ESA50 (Limited Capability for Work Questionnaire) to fill in and send off to Atos. This was the company contracted, by the government, to assess most ESA claimants. Of course now they have walked away from the contract; only carrying out a few assessments for new claimants. Once I know more about who will be taking on the contract next etc, I'm sure I'll be blogging about it.

My original date of assessment was 5th June. It was then rearranged to 8th July (If I remember correctly, they sent a letter in good time), then I turned up to find they'd cancelled and rearranged to 31st July, without giving me any notice! When I turned up on 31st July, the security guard asked me a few questions; including whether I'd be able to get down the stairs in an emergency (the assessment rooms were on the 1st floor and there was a lift). I said that physically, it was possible, but I get very weak and painful legs, so I wouldn't be safe. He then told me to wait in a room on the ground floor. One of the assessors met me about 10 minutes later, to explain that I could not have my assessment that day because of the health and safety risk with the stairs. I'm sure I'd mentioned problems with stairs in my ESA50, so they should really have considered that! I also didn't expect assessment rooms to be anywhere apart from the ground floor. A huge amount of ESA claimants are bound to have mobility problems after all. So my assessment was rearranged (again) for August time, in a centre about an hour away. It'd be difficult to get there, even with my father driving, but it had to be done!

The second paragraph in this post explains briefly, how the assessment went. I've mentioned this before, but I felt the nurse was quite unprofessional in her manner. She laughed, when I mentioned my bladder problems. She also said she would do an eye test to check I "wasn't telling porkies" when I described my vision problems. I really should've complained, but the whole ordeal was so exhausting, I just wanted to get out of that place. I received the decision letter not too long after my assessment. I had been awarded 15 points, and placed in the Work Related Activity Group for 6 months. I was very relieved, although I was unsure as to what the WRAG entailed exactly. My first Work Focused Interview involved talking through my symptoms, limitations etc, and I was also placed onto the Work Programme because, due to the 6 month 'prognosis', my condition was regarded as "short term" (ha!)

My first Work Programme appointment, was a blurry horrible mess. If I can find a post that describes it, then I'll edit and put a link here. My brain is pretty frazzled from all this typing, but I did want to keep all my ESA experiences in one place. Who knows? It might come in handy for anyone who has been thinking about applying. I'd certainly like this blog to be helpful for others. It basically involved a surprise group induction, me going into complete panic mode, worrying all the advisers and being swiftly taken out of said group induction, then some time I barely remember of meeting my personal adviser and being coerced into signing some paperwork I didn't have the concentration to read properly. The adviser was optimistic that I'd be well enough for work by May 2014, as she'd had Fibromyalgia and she'd woken up one day and it had miraculously disappeared! Hmm, forgive me for not believing that...

From that appointment, and from what they said they would require of me, I felt that maybe the WRAG wasn't the right group for me? I thought there'd be more specialist help, which kept chronic illness and disability in mind. It seemed there was nothing of the sort. The kind of help available were things such as CV support, Cover Letter support, training, interview practice and group sessions. It all appeared to be things that would require me to be quite well and able to concentrate. I decided to appeal.

I just about got my appeal sent within the one month deadline (you have a month from the date of your decision letter, to appeal, although there is now Mandatory Reconsideration, so the rules may be different now). It took a bit of confusion with what to say, what to send etc, and I ended up sending a supporting letter from my GP, the letter from my Rheumatologist and my Psychotherapist and supporting letters from my parents. Eventually, the appeal went to tribunal. You can read about my tribunal experience here

Unfortunately, my appeal failed; although my points were increased from 15 to 30 (my mental health was actually taken into consideration here!). So, back to the WRAG appointments. I did miss a few, because I was flaring up so easily and frequently. Luckily, my adviser was fairly understanding of that. The next problem arose when my dad's shift pattern changed at work. He was now unable to take me to my appointments. I rang my adviser and tried to negotiate phone appointments, and I explained how we could make it work. I also explained how I was awarded points for descriptors which clearly state I'm unable to travel alone. I got a "No, we don't do that" in return. I asked about speaking to her manager, but was told the manager had said "No" as well. There wasn't any explanation at all. I decided to take the matter further, so I contacted my disability representative, an organisation which advises on the Equality Act, the Mental Health charity, Mind and my MP.

I was given conflicting advice as to what to do. One place said to ask for a statement of reasons as to why the phone appointments were refused, another offered to provide me with an advocate (well, I wouldn't know this person, so what good could it do?), another said to let them know that my illness had worsened, so I could be reassessed (that was true, but I couldn't see myself getting through another WCA) and my MP said he'd speak to the Jobcentre, DWP and the Work Programme provider. I kept everyone updated on my situation and had pretty much convinced myself that nothing would happen, apart from me getting sanctioned for not participating in Work Related Activity (even though I was completely unable to even get to the centre!)

Then, I had a surprising voicemail. The manager of the Work Programme Provider office, left a message; acknowledging my complaint to my MP and his subsequent letter to themselves. I couldn't quite believe what I was hearing when she said that they'd checked my records, I'd been reassessed and was now in the Support Group! She also said my adviser would be in touch to explain what will happen next. I listened to the voicemail at least 3 times to be sure. I decided to keep very quiet about this (hence the lack of blogging on the subject) until the confirmation letter was in my hands. A few days later it was (with a prognosis of 1 year this time), along with the new ESA rate. This has been quite a relief, as now myself and my parents are able to afford to have a cleaner come once a week, for an hour or so. None of us are in a fit state to do much beyond washing dishes and doing laundry (I can barely even do these on my better days now). A lot needed cleaning and help has been needed for a long time.

I know it is extremely stressful, but if you are (wrongly) found fit for work, or you are put in the WRAG when you are not well enough for it, then definitely appeal. It is also a good idea to seek help from your local Citizen's Advice Bureau, as well as any organisations for your disability/ies, any disability advocacy places (especially ones which provide representation at tribunals) and your MP. Bug the heck out of them, it's worth it!

Also, gather evidence. The more, the better. It has to be good quality evidence as well, that can be applied to the descriptors your condition fits. If you find that you fail your appeal, and are kept in the WRAG, then make sure your adviser knows how your conditions limit the sort of Work Related Activity you could do. They may try and push you to do certain activities, but they are not allowed to force you. Bring in evidence for them if needs be. No matter what they say, they do have to provide phone appointments, if it'd be suitable for your condition. If there's still no luck, then contact your MP again. From my experiences, I've found that your MP is usually the one to nudge the WRAG/Work Programme Adviser into actually doing something for you.

I do hope this post has been useful. Please comment or tweet me @Openyoureyes89 if you have any other questions, if there's anything I've explained incorrectly or anything I need to add.


Resources

1. http://amysmysteryillness.blogspot.co.uk/2013/03/citizens-advice-bureauesa-application.html

2. http://amysmysteryillness.blogspot.com/2013/04/sick-note-and-new-meds.html

3. https://www.gov.uk/

4. https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/300227/esa1-print.pdf

5. http://amysmysteryillness.blogspot.co.uk/2013/04/decision-letter.html

6. https://www.gov.uk/government/publications/esa-50-limited-capability-for-work-questionnaire

7. http://amysmysteryillness.blogspot.co.uk/2013/09/appointments-appointments-appointments.html

8. http://amysmysteryillness.blogspot.co.uk/2013/10/how-do-you-measure-your-worth.html

9. http://amysmysteryillness.blogspot.co.uk/2014/03/my-esa-tribunal-experience.html

Changing the Rules- Is this Ethical?

Yesterday, I learnt of a new expectation for ESA claimants. It seems that ministers at the Department for Work and Pensions will now be expecting mentally ill claimants to undergo therapy for Anxiety and Depression, if they are to keep their benefits. You can read more about it here and here.

Employment and Support Allowance (ESA) is an out of work* benefit for people who are not well enough to work. It involves a (fairly lengthy currently) assessment period and in most cases, claimants have to take part in a face to face Work Capability Assessment. They are supposed to be contacted fairly soon after this assessment, with their results. They will either be found fit for work or having limited capability for work. If it is found that they are fit for work, then their assessment rate ESA is stopped, they are encouraged to apply for Jobseeker's Allowance and expected to look for work. This decision can be appealed, however. If they are found to have limited capability for work then they will be placed in one of two groups; the Work Related Activity Group (for those who might be able to work soon) or the Support Group (for those who are unlikely to be able to work/soon.) More details are found on the gov.uk website here .

Currently, people found to have limited capability for work are not expected to undergo treatment as a condition for receiving Employment and Support Allowance. Those in the Work Related Activity Group are expected to take part in Work Focused Interviews however. This is usually face to face, but it is possible to request phone appointments if you are unable to travel. I will provide further information, and my own experience of requesting phone appointments, in my next post. At these Work Focused Interviews, your adviser will discuss barriers to work with you. You may also be offered support with CV writing, building confidence and group sessions. These are referred to as Work Related Activity, and they must take your medical conditions into consideration. It is a good idea to ensure the adviser knows how your medical conditions affect your ability to work. I understand that this will already have been discussed with a healthcare professional at your Work Capability Assessment but, in my experience, communication between these two parties tends to be very lacking. The three things that your adviser is not allowed to do is, expect you to look for work, expect you to take part in work, and expect you to undergo medical treatment against your will.

Bringing us back to the point of this post,  the idea of giving early access for "talking therapies" to claimants almost seems like a positive one. With long waiting lists, difficulty accessing therapy and early discharges from therapy (therapists leaving their posts, clients missing appointments, lack of funding etc) you'd be forgiven for thinking early access, provided by the government, is a good thing. But this is barely touching the surface of mental illness, and the complexities of it. Talking therapies (such as Cognitive Behavioural Therapy) are only likely to help a person's mental health, if they are ready and take part on a completely voluntary basis.  Forcing a person to take part in any kind of treatment, is likely to result in more stress and pressure, which in turn will likely halt progress or even worsen their condition(s). Forcing a person to take part in therapy, with the threat of sanctions if they don't, is completely unethical, cruel, and potentially dangerous.

The article includes a statement from a senior government source; which I have quoted below:

"A huge number of claimants on ESA who cannot work have treatable mental health issues such as depression and anxiety. We know that depression and anxiety are treatable conditions. Cognitive behavioural therapies work and they get people stable again but you can’t mandate people to take that treatment. But there are loads of people who claim ESA who undergo no treatment whatsoever. It is bizarre. This is a real problem because we want people to get better."

I believe this statement is problematic. It appears to imply that firstly, Depression and Anxiety are easily treatable and will always improve with therapy (namely CBT), secondly, that these mental illnesses aren't that serious and thirdly that the only reason claimants of ESA (with Anxiety and/or Depression) aren't getting treatment, is because they chose not to. Now I'm unsure as to whether the government are including these people in their research or not (and will edit accordingly as I learn more) but, with cuts to mental health funding, comes increasingly longer waiting lists. Some people who are claiming ESA for mental illnesses (Depression and Anxiety in this case) may have already requested or agreed to a referral for talking therapies; such as CBT, so are waiting a very long time for their first session. Just because someone is not currently receiving treatment, does not mean they haven't tried. It may also be that CBT just didn't suit them. Maybe their condition is too severe for this (but is not considered severe enough to warrant entry into the Support Group.) Maybe their condition is too complex for therapy to be of much help currently. Maybe it has been decided that their condition is not severe enough for anything more than some self help material. A better idea would be to give people the option of requesting this early access. 

I'm going to leave the post here for now, and will add more sources either later on today or tomorrow. I'd be really interested in hearing people's views on this topic though, so feel free to comment. 


Resources

http://www.telegraph.co.uk/news/politics/conservative/10964125/Tories-discuss-stripping-benefits-claimants-who-refuse-treatment-for-depression.html

http://www.huffingtonpost.co.uk/2014/07/13/depression-benefits-torie_n_5581863.html?utm_hp_ref=uk

https://www.gov.uk/employment-support-allowance

http://www.benefitsandwork.co.uk/employment-and-support-allowance/esa-glossary/1483-work-focused-interview

*Although ESA is an out of work benefit, there are exceptions where a claimant can do voluntary work, or permitted work. More information about permitted work, can be found on this page.

UPDATE

It appears that this new expectation will not go ahead. It was merely a discussion, that was misinterpreted by journalists, although the fact that it WAS discussed does not instil much confidence in myself and I'm sure many others. I will try to keep an eye on any sneaky proposals the DWP publish in future.

My 1st Urology Appointment (bit of a TMI post)

I had my first Urology appointment last Thursday (3rd July). I wasn't sure what to expect with this visit, and internet searches gave me conflicting information. The appointment letter was quite a short one, and only asked me to bring any medication I currently took. I wanted to be prepared for a whole host of questions from the Urologist, so I took down some notes of the kind of symptoms I had:

Urinary Frequency (At least 10 times in the day. 1 or 2 times at night, so not too bad at night)

Sudden, unexpected urges to urinate: Not fun at all, if a toilet isn't easy to get to.

Difficulty urinating sometimes (I can be absolutely bursting, but it feels as if my body is too weak to be able to. I also get a bit of a nervous bladder, where hearing voices outside the toilet will put me off).

Feeling as if I'm retaining some of the urine; hence the need to keep going back. (I have developed a very unhealthy routine when I need to leave the house, of 'going' 4 times, sorting out what I need to take with me (after washing my hands of course!), then going back to the toilet another 2 times before I feel I've emptied my bladder enough to actually leave the house. I also have to wipe a certain number of times before I can leave. If I don't, I feel as if I will be absolutely desperate for the toilet when I leave the house.)

Very occasional small leaks: This happened at least once when I was at school, at least once on holiday, and at least once since. Luckily the leaks were too small to be noticed, but I still felt incredibly embarrassed.

Occasional occurrences of Cystitis from the age of 16 to now.

I wasn't sure if I needed to bring a urine sample to my appointment, as it didn't mention it on the letter (yes I know it's a Urology dept, so probably common sense to bring one. Shh!) , but I figured I would be able to do one if needed when I got there.

My mum came with me in the taxi, as luckily the Urology department at my local hospital is a small one; very easily accessed from the car park. I recognised a couple of members of staff there too (I used to temp as a research assistant at the hospital). At first, I thought it'd be a bit awkward (with this post, you'd never guess I'd feel embarrassed, speaking about my waterworks!), but I think knowing some people there actually put my mind at ease a little. I always get nervous at my first visit to a new specialist. After such a long time of seeing doctors who would fob me off, tell me it's "just" Depression, or simply not believe me at all, I do tend to expect the worst.

It wasn't too long before my name was called. It turns out, I was supposed to bring a sample. It would've been nice for the letter to mention that! Anyway, I went to produce one, gave it to them, had my blood pressure tested (normal, as bloody usual, even though I felt like hell and was incredibly faint and dizzy!) and then was asked to sit and wait for the doctor. It was a longer wait (possibly half an hour? Maybe more?) before I was called to the doctor's office. The brainfog had kicked in by this time, so I was struggling to remember how to string a sentence together, let alone actually remembering what I'd noted down.

The doctor introduced himself, then asked what had brought me here today. I know I tripped over my words a lot, and mum had to prompt me, but I managed to explain that I'd had the symptoms a while, they'd got worse, these were the symptoms etc (I forgot to mention the trouble urinating though!). He asked questions such as how many times do I go in the day, at night, have I ever leaked, do I fully empty my bladder etc. I also mentioned the cystitis. He then asked whether I'm sure I'd had cystitis, and whether I'd been tested and had it confirmed by the GP. I said that the times I'd had it, I'd just had a quick phone appointment with my doctor, my symptoms had matched the criteria for cystitis so the GP had confirmed it and prescribed me that cranberry powder stuff, which is supposed to help. I explained the symptoms I'd had, but the doctor said he didn't see any evidence of it on my medical notes, and the GP really should've tested me for it. I have a feeling he didn't believe me...

(TW: Suicidal thoughts)
We also went through my existing diagnoses. I listed them: Fibromyalgia, Vitamin D Deficiency, Suspected Overactive Bladder, Depression and Generalised Anxiety Disorder. He commented on my mention of Depression, and asked (very rudely might I add!) "What've you got to be so depressed about then?!". I felt a bit shocked that he'd asked such an ignorant and insensitive question.

This isn't me feeling a little down. This is constant, unrelenting, hopelessness and despair. This is suicidal thoughts and urges. This is taking all my mental strength to not take all the tablets in my bedside cabinet, when I should only be taking my prescribed dosage, because how could I bear to have my parents find me like this. This is being frustrated with myself for just. not. doing it. This is falling asleep at night, wishing I don't wake up the next day. This is feeling like a disappointment. This is feeling like I don't deserve to have anyone love me, so there is no point talking to them because all I do is bring burden and pain upon them. This is knowing I shouldn't think like this, knowing it's not a logical or healthy way to think, but not finding a single way to stop myself from thinking like this. Depression is an illness, not a reaction. There's not always a reason. Assuming someone must have a reason to be depressed, only serves to make the guilty feelings worse.

I couldn't answer this insensitive question. It took all of my strength not to have a go at him (because I needed some treatment!). He rephrased his question and asked "Did you have some kind of trauma, that caused the Depression?". Now, whilst a Psychologist, Psychiatrist, Psychiatric Nurse etc might have some reason for asking this, a Urologist certainly does not. I was here for a physical problem. Sure, Anxiety probably makes these symptoms worse, but it's not the Depression! I just said that having the Fibromyalgia, and my life changing so much (giving up work, losing friends, a relationship etc) probably led to it being this bad. I then showed him all the prescription meds I was taking, and the subject was changed.

He confirmed the diagnosis of Overactive Bladder Syndrome, and said that he would write a letter to my GP, so that she could write a prescription for some medication in a week's time. I was surprised he hadn't written out the prescription there and then, but I've had these symptoms for around 8 years. I'm sure I could wait one week. He also said he'd like me to have a bladder scan, to see if I was retaining any urine. The appointment was then over, and I was asked to go to the toilet to try and empty my bladder, then sit and wait for the nurse to fetch me for my scan.

The scan showed that I retained about 46ml (this was after going to the toilet 3 times since my last full drink (a good few hours before I'd left the house), and only having a couple of sips of water inbetween). I was glad that I was right, but the doctor said this was normal, so no further investigation was needed for this.

My next appointment with him is in 2 months time, to see if the medication is helping much. I really really hope that this is the one symptom that can be sorted out.

I have nothing to hide, but that's not the point.

I've been thinking about the links between my physical and mental health, and the attitudes of this government and the media.

Years ago, when I was healthy enough to work, I used to assume that those who needed to claim disability and sickness benefits (namely DLA and ESA) would be able to do this without much hassle. I also believed that they would be properly supported, without judgment or harassment.

Now I know, this isn't true.

Ever since I've been claiming ESA, I've noticed the increase in tabloid headlines; claiming that most people "on the sick" were doing so fraudulently. Contact details for reporting fraud have been more visible, and so malicious calls have been made. More programmes on television about people on benefits. Society seems to be more suspicious of anyone on benefits (be it ESA, DLA/PIP or JSA). I'm not sure if I'm being paranoid, but I feel as if all eyes are on me when I leave the house. I still have people doubting how ill I am, how much pain I'm in, whether I *really* need my walking stick. It's horrible, but my experiences of being judged/harassed are fairly mild compared to some.

Just over a month ago, I went on holiday to Spain with my parents. Before anyone says anything about "luxuries", a relative had helped us pay for the holiday and we had all saved up bit by bit for over a year. We didn't go on fancy excursions and we stayed in a small hotel. But I was relatively quiet about this, on social media. I worried about people judging me for daring to spend their so called "hard working taxpayer's money".

I shouldn't have to justify what I spend my money on. It is no one's business. As long as I'm only claiming what I qualify for, and I'm making sure essentials are paid for first, why should it matter? I'm lucky that I live with my parents, and that (with a long time saving up small amounts) we can afford a nice thing on rare occasions. If I couldn't live with my parents, I dread to think if I'd even have a roof over my head, let alone any other essentials. That odd nice thing gives me something to look forward to. Having a lifelong, incurable physical illness, has taken a real toll on my mental health. I spend my days resting, trying to make sure I have one hot meal a day (on bad days it does have to be take-out when my parents aren't able to help), blogging when I'm able (with the help of a speech-to-text program) and going to appointments with dad's help. I've not seen one improvement in my physical or mental health. In some cases, things have become worse. Every day is pretty much the same. I am trying to study for a CBT diploma, from home, but I haven't completed nearly enough; due to a whole host of symptoms (including brainfog).

Last night, I found out that the government are currently picking claimants of ESA, JSA, Income Support, Pension Credit or Housing Benefit, at random and are visiting them (without notice in most cases) to check they are receiving the correct amount of benefit. They will ask for ID and to look at bank statements. They cannot force themselves into your home, but your benefits could be affected if you disagree to this visit. See these links for more information: https://www.gov.uk/dwp-visit  http://www.nhs.uk/CarersDirect/moneyandlegal/otherbenefits/Pages/benefits-agency-visitor.aspx

This knowledge sent my anxiety through the roof. I thought I was about to have a panic attack, and have been feeling very ill since. I have nothing to hide. I have declared everything to DWP (including the holiday, might I add), yet people like me are still treated with suspicion. I worry about the effect this, out-of-the-blue visit, will have on those with serious mental illnesses. How about those whose illnesses (physical and/or mental) could be seriously compromised by the stress of these visits?

I'm sure you have heard of the effects of the infamous Work Capability Assessments, people being (wrongly) found fit for work, unfair sanctions and the huge delays for being assessed. These things have led to deaths by either suicide or pressure causing peoples' illnesses to progress severely. What civilised society would allow this to carry on, all in the name of making sure that the miniscule percentage claiming fraudulently are found out? Is it worth it?

UPDATE:

I recently subscribed to Benefits and Work and received their latest newsletter on 30th July. They made a Freedom of Information request, regarding these DWP visits, and have received the following information:

"As a result of that request we can now reveal that, in reality, the vast majority of people who get a visit do not get a letter in advance – surprise visits are the rule, not the exception. There’s more on this below.

However, we can also reassure our readers that:

• you don’t have to let them in; and

• you can insist on being given proper notice;

• you can insist on having the interview at a DWP office instead of in your home.

And doing so won’t affect your benefits, though refusing to take part in an interview at all may leave you open to a fraud investigation."

"There are also certain classes of claimant who should never receive an unannounced visit, including:

• “customers suffering from depression or a medically defined mental illness
• customers with an alcohol or drug-related dependency
• disabled customers where there is evidence from the preview information that they may be distressed if an MRO calls unannounced."

However, where the visiting officer suspects, on the basis of your files, that you may be committing fraud they can still carry out an un-notified visit even if you are in one of the categories above.

And it’s important to be aware that one of the things visiting officers will do is look out for any difference between the details given in your work capability assessment medical report and your behaviour at home. The rather bizarre example given is that of a claimant who is up a ladder washing windows when visited, but their incapacity is listed as vertigo.

So, if your condition is a variable one and you’re having a better day, make that very clear - even if you aren’t asked."

This may not be brilliant news, but at least we now know what our rights are, and that there are exemptions (whether the DWP practise what they preach, however, is another story).

SOURCES

1. http://www.benefitsandwork.co.uk/
2. A newsletter, from Benefits and Work, sent to me on 30/07/2014, Entitled "An Unexpected Knock At The Door Is The DWP Rule, Not The Exception"
3. Click here for the online version of the letter.

The long journey of meds

This is just another little updates post. I want to try and write more regularly, so I don't end up with an extremely long-winded post.

The whole appointment booking system has been changed at my GP surgery now. It used to be that you could call any time they're open, and book appointments in advance, as well as same day appointments. You could also sign up for the online booking facility. You would always get a face to face appointment, unless you asked for a phone consultation. Now, they've decided to only do same day appointments (apart from very exceptional circumstances, but don't ask me what specifically) and they've taken down the online booking facility. You ring reception and give them details of why you need the appointment. Instead of booking one for you, they get the GP to call you back, so you can explain to them what is wrong. The GP themself then decides if you need a face to face appointment, and will book one for that day if you do need one. It's supposed to help with communication. I find this a much more complex and ineffective system. It is especially difficult for people who have problems with communication over the phone. I could barely get my words out when speaking to the GP on the phone, as my brain fog and anxiety were very bad that day. Luckily I could get an appointment, and she did understand, but it didn't stop me being extremely nervous and embarrassed. Online booking would be a lot more helpful for me!

I really don't visit my GP enough. Maybe it's lack of faith in treatments, or me trying to deal with things by myself. I went the other week for a few reasons, but mainly for pain and Depression. I'd lost a little faith in her, because of the dismissal of my hypermobility symptoms (and a few symptoms that come up in the Ehlers Danlos Syndrome diagnostic criteria). I was reminded of how supportive and helpful she is, when it comes to working with me to get referrals, new medication, generally talking through symptoms and side effects etc.

So far, these are the tablets I've been put on for Fibromyalgia (well, some when they thought I had M.E). Oh and not altogether of course!:

Citalopram 40mg, Amitriptyline 30mg, Lyrica (Pregabalin), Neurontin (Gabapentin), Codeine Phosphate, Ibuprofen, Zopiclone (for sleep),  Duloxetine.

I've also been prescribed tablets for Vitamin B12 deficiency, Folate deficiency and Vitamin D deficiency. As you know, I'm on the Vitamin D meds for life. As far as I'm aware, my B12 and Folates are back to normal. I only had to be on meds for them, for about 3 months. The Citalopram, Codeine and Duloxetine did not suit me AT ALL. I was very very ill on these, so had to stop them. The Amitriptyline (at that dose) didn't do a thing, apart from help with sleep, so my old GP took me off those. The Zopiclone didn't do a thing either. The Lyrica and Neurontin did nothing, apart from make me put on weight. NOT something I wanted as my self confidence is extremely low.

My GP and I discussed the meds I'd been prescribed and whether they'd been effective. She's now said I can go off the Gabapentin completely (I've already weaned myself down from 900mg to 300mg very slowly, with little or no withdrawal symptoms). Has anyone found that they've lost some of/the weight they put on with this med, after going off it? She's also prescribed me a stronger NSAID, Naproxen 500mg for pain. I'm hoping this at least takes the edge off. I'm not expecting to be 100% pain free. I'd just like the pain to be manageable enough that, when I can work again, I won't be in agony halfway through my shift. When I lived with my ex and was working (keep in mind that this was a sit down, not-too-stressful job) I had to grit my teeth throughout my shift, keep myself awake, hope people didn't notice how often I went to the loo, use all my energy just to concentrate, and I was completely done in by the time I got home. This was when I was less ill as well. To do even that job, would be impossible right now.

I'd been indecisive about this for a while as well, but I mentioned wanting to try anti-depressants again. I'm attending psychotherapy every week and I'm hoping that does help, but I need something to help with these massive dips in mood and these huge suicidal urges. I said the things that had been holding me back, were possible side effects and the possibility of even more weight gain. She had a look through her medication book (I forget what it's called now!) and I suggested possibly going on a higher dose of Amitriptyline. It would at least help the sleep anyway. I also asked whether this would cause weight gain. Luckily, my GP said it wouldn't.

So that's it for now! I'm getting very groggy with these new meds, and I'm even more fatigued at the moment. I think this is to be expected though. I'll be seeing my pain specialist again in a couple of months. She has referred me to physio and for acupuncture, but I wonder whether she will want to put me on any other treatment for nerve pain. I don't think she quite understands how debilitating Fibromyalgia can be.

*Edit*

I almost forgot to say! A little off topic for this post, but I saw my Bladder Specialist for the last time today. I've cut down my caffeine and other irritants as much as possible, and I'm doing the bladder training exercises, but I've not found any difference in urgency, retention or frequency. As I've done everything she suggested, there's nothing more the specialist can do, so she has discharged me. I've now got to wait for my Urology appointment; where it's likely that I'll have to have a Urodynamic test and I'll be put on more medication. I'm at the point now, where I'll just try ANYTHING if it'll work. I'm fed up of my bladder issues taking over my day to day life.