Sunday 27 July 2014

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 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.











Monday 14 July 2014

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 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. 


*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.


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.

Wednesday 9 July 2014

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.