Wednesday, 31 December 2014

GP Supporting Letter Guide

Depending upon how open your doctors are, there are a number of documents with which you can provide them. This will not only help yourself, but other patients in future, too. If your doctor is fairly unapproachable, the best method is to simply provide them with the Fightback Example Letter for GPs, which can be found here: FightBack Example Letter for GPs

If however, your doctor or consultant is enthusiastic about providing the best support they can for their patients, then providing them with the following will help:
-          A copy of the ESA50:
-          The ESA descriptors:
-          Regulations 29 & 35:
-          The Support Group descriptors:
-          My following explanation:

The Descriptors are used to score each ESA application. You will note that each Descriptor tallies to the like numbered question on the ESA50 form that your patient must complete. For the descriptors appropriate to your patient, please write a sentence in the letter that describes their ability, and why, preferably using wording similar to that of the Descriptor. For Fibromyalgia it is particularly important to note the fluctuating nature of the condition, by explaining that your patient cannot “Reliably, repeatedly, and safely” perform activities.

Your patient must score 15 points or more from the Descriptors in order to placed in the ESA Work Related Activity Group. If you believe that your patient is not ready to be pushed towards work, or will not be at all, please state this clearly in your supporting letter, as per regulations29 & 35. It will be additionally useful if you include sentences that match your patient to the Support Group descriptors.

It is imperative to be mindful of your phrasing when writing the letter. The DWP will discard any sentences which they can consider to be in doubt. For example, “I believe that my patient is in constant pain”, may be discarded, whereas “My patient is in constant pain” will not.

The letter can be kept short, covering the basics that you consider will place your patient in the appropriate ESA group. Or you can include information regarding specialists, test results, and patient history.

Thursday, 1 August 2013

Tips for dealing with people in pain

I'm taking this from a Facebook group. The author is apparently unknown. It's highly relevant to myself, as I am sure it is to many M.E.  and Fibro patients. For me it's Hypermobility that causes me the most pain though, so point 11 is particularly poignant.

1. People with chronic pain seem unreliable (we can’t count on ourselves). When feeling better we promise things (and mean it); when in serious pain, we may not even show up.

2. An action or situation may result in pain several hours later, or even the next day. Delayed pain is confusing to people who have never experienced it.

3. Pain can inhibit listening
and other communication skills. It’s like having someone shouting at you, or trying to talk with a fire alarm going off in the room. The effect of pain on the mind can seem like attention deficit disorder. So you may have to repeat a request, or write things down for a person with chronic pain. Don’t take it personally, or think that they are stupid.

4. The senses can overload while in pain. For example, noises that wouldn’t normally bother you, seem too much.

5. Patience may seem short. We can’t wait in a long line; can’t wait for a long drawn out conversation.

6. Don’t always ask “how are you” unless you are genuinely prepared to listen it just points attention inward.

7. Pain can sometimes trigger psychological disabilities (usually very temporary). When in pain, a small task, like hanging out the laundry, can seem like a huge wall, too high to climb over. An hour later the same job may be quite OK. It is sane to be depressed occasionally when you hurt.

8. Pain can come on fairly quickly and unexpectedly. Pain sometimes abates after a short rest. Chronic pain people appear to arrive and fade unpredictably to others.

9. Knowing where a refuge is, such as a couch, a bed, or comfortable chair, is as important as knowing where a bathroom is. A visit is much more enjoyable if the chronic pain person knows there is a refuge if needed. A person with chronic pain may not want to go anywhere that has no refuge ( place to sit or lie down).

10. Small acts of kindness can seem like huge acts of mercy to a person in pain. Your offer of a pillow or a cup of tea can be a really big thing to a person who is feeling temporarily helpless in the face of encroaching pain.

11. Not all pain is easy to locate or describe. Sometimes there is a body-wide feeling of discomfort, with hard to describe pains in the entire back, or in both legs, but not in one particular spot you can point to. Our vocabulary for pain is very limited, compared to the body’s ability to feel varieties of discomfort.

12. We may not have a good “reason” for the pain. Medical science is still limited in its understanding of pain. Many people have pain that is not yet classified by doctors as an officially recognized “disease”. That does not reduce the pain, – it only reduces our ability to give it a label, and to have you believe us.

Wednesday, 17 July 2013

One step forward, two steps back.

In 2010 I was still a patient under Dr Niklaus. His search for an M.E. specialist in our area had proved to be fruitless. As such he suggested I contact the M.E. Association to enquire as to whether they could recommend a clinic in our vicinity; then he would refer me privately. We were advised that The Fatigue Clinic (also the Diabetes Clinic) at the George Eliot Hospital in Nuneaton was the nearest well referenced specialist that would suit me. As such, Dr Niklaus made this referral.

Part of the reason that my GP wished to refer me privately was because we knew I would not remain under his care for much longer. I was in the process of getting divorced, and the house I had lived in for the last eight years was up for sale. Once it sold, the reality was that I would no longer live in the area as I could not afford to do so on my own. So, we were a little perplexed when eight months later we still had not received any word from the clinic at all. Dr Niklaus chased up the appointment and found that I'd been placed on their NHS waiting list. The waiting list was amazingly long, because Dr Patel is very popular, but this did at least mean that I wouldn't have to pay for the appointment.

Eventually I had my first appointment with them in March of 2012. The doctor I saw was newly qualified. She had not heard of M.E., and told me that I had been ill for too long; that there was nothing she would be able to do to help me. I was absolutely gutted; I'd spent the last year hoping that they would be able to help, and the result seemed to be that I'd wasted a lot of time.

I was therefore rather surprised when I was called in to the hospital a few weeks later for adreno-cortisol tests. I explained to the doctor performing the test that I had lost a pregnancy a few days previously, so the test results may be a little wonky.

I had half expected this test to show something. I had previously asked Dr Niklaus if we could look into Adreno-Fatigue Syndrome, but we never actually got around to doing so.

Three months later I had another appointment with the clinic. This is when I met Dr Patel for the first time; my specialist. He has an amazing manner. He's humorous, and related to me very easily. He discussed the findings with me and my partner in terms that we both understood with ease. The adreno-cortisol had not found any adrenalin related problems. However, when they did the test they used the blood sample to run further tests. These tests had given some results.

Firstly, my Vitamin B levels were low.

Secondly, my thyroid hormone conversion does not work efficiently. Hypothyroidism and hyperthyroidism are common illnesses that most people have heard of. I've been treated for Hypothyroidism for years, as my T4 levels are always low. The tests that Dr Patel's clinic ran showed that despite raising my T4 levels artificially, my T3 levels were still low. Our bodies create T3 by converting T4 into it. My body does not do this properly. It is a less common problem. The treatment for it is a drug called Liothyronine. Only specialists can prescribe this. With good reason.

I was supposed to see Dr Patel again three months later, taking with me results from another batch of blood tests that would assess how well the Liothyronine (and Vitamin B injections) was doing.

For the first few weeks on Liothyronine I felt on top of the world. It was amazing; as if my body had been starving for this drug all my life. I started fantasising about getting my life back on track, building a career, having hobbies etc. I was brought back to earth with a bump, when I started to feel quite ill. I just assumed that it was an M.E. relapse. It replicated it in almost every way. I was sensitive to sound and light. Every movement I made, made me feel seasick. I ended up lying on the bedroom floor for days, feeling too unwell to move, eat .. anything.

I don't remember how, but I got myself to the surgery to have the blood test in preparation for the specialists appointment. A day or two later my GP phoned me. The lab had contacted him as a matter of urgency; my blood sample had showed extremely toxic levels of T3. I'd been poisoned. This certainly explained why I'd been feeling ill. I stopped taking the Liothyronine straight away, but it took a while for me to recover.

As such, I was not well enough to get to the next specialist appointment and had to reschedule.

Please note: I do not blame Dr Patel for the Liothyronine overdose. The blood sample that lead to his prescription of this medication was taken when my body was in a state of utter turmoil; when a body loses a pregnancy all sorts of things happen to the endocrine system. It was not Dr Patel who performed the adreno-cortisol test. I think the doctor who did, forgot to write on my notes the circumstances. As such Dr Patel was unaware.

I've just had the rescheduled appointment with the clinic; a year after my last appointment. I am, once again, a little less than impressed.

As with most hospital appointments I was called in to an office to have my blood pressure and weight taken. I explained to the nurse that she needed to take my blood pressure standing up as well as sitting down because I suffer with Orthostatic Intolerance. She ignored me, only taking it when I was seated.

We were then called in to a doctor's office. I was confused. The doctor didn't look at all as I remembered Dr Patel. And his manner was significantly different. It wasn't until my partner said to him "We were expecting to see Dr Patel" that it clicked. He introduced himself as Dr Nair. (And for the record, they look nothing alike; it's simply that I was struggling with brainfog at the time). He sat and stared at us for what felt like an age, eventually asking us what we wanted from him. I didn't know what to say. I was totally confused. As far as I was concerned I was supposed to be seeing Dr Patel; a specialist who was familiar with my case.

You see, when I left the area I had been living in, under Dr Niklaus's care, I was fortunate enough to fall under the care of an absolutely fantastic GP. My current GP personally knows Dr Patel. As such my case has been discussed a little during private functions. I had actually been really looking forward to making breakthroughs with Dr Patel and my GP. My GP and I had discussed at some length what I should discuss with Dr Patel, and what to ask of him.

Dr Patel had prescribed Gabapentin for me, at night, because my daytime medication, Tramadol, keeps me awake. For about six months it worked really well, but it's effect has been wearing off over the last few months. As such we wished to suggest that I move to a low dose of Amitryptiline. I explained this to Dr Nair. He nodded and said he'd write me a prescription for it, and scribbled some notes.

A Sexual Health clinic had suggested that I see an endocrinologist because of a totally unrelated problem. My GP explained to me that Dr Patel is an endocrinologist, so when I see him, to raise this issue, asking him to test my progesterone and oestrogen levels. So, obviously, I asked Dr Nair for these tests. He nodded, scribbled some notes, and gave me a slip to take to the hospital's phlebotomy laboratory to have some blood taken.

He had absolutely no idea of my history, asking me to tell him. When I explained what had happened with the Liothyronine he smirked and said to me patronisingly "So you feel you were poisoned!" whilst scribbling some notes. This riled me. No! I did not FEEL I had been poisoned. My blood tests had showed toxic levels of hormone. I had actually personally thought I was just having an M.E. relapse. He's the perfect example of a doctor who simply doesn't take what patients say seriously, assuming that he automatically knows better.

My partner and I left his office and sat down outside. We were asked by one of the staff why we'd sat down, so we explained that we were waiting for the prescription, and asked what to do with the blood test slip. He should have given me the prescription for Amitryptiline while I was in the appointment with him. And of course, the hospital phlebotomy clinic had closed for the day; the blood slip he'd given us, only being usable in the hospital. Not only that, but he'd only requested T3 and T4 levels to be taken. There was no suggestion of Progesterone and Oestrogen.

One of the nurses who had been behind the desk took the blood sample for us; the first time she'd done so for months, or years, she told us. (I hardly felt it, however). My partner was absolutely livid. He demanded that we see Dr Patel, since I'd been waiting a year for this follow up appointment, which had ended up being a total waste of time. He'd had to take time off work to take me to the appointment. Unfortunately though, Dr Patel had rounds after clinic; and still had a queue to get through before clinic would be finished. There was simply no way that we could see him.

Today I saw my GP. He wasn't particularly pleased that I'd not seen Dr Patel either. He's heard of Dr Nair, but nothing good. At the moment I'm uncertain of whether to make a complaint against Dr Nair. I don't wish to complain against the clinic, because I value Dr Patel's treatment too highly; though I do think it out of order for the nurse to ignore me when I tell her I suffer from OI, and for us to be sent in to see a different doctor without any warning. But when someone has waited a year for an appointment, and ten years to see a specialist on their condition, to be treated the way that Dr Nair treated me is totally unreasonable. Because of Dr Nair, I went a week without pain medication; which, as you can imagine, was an arduous experience. I would prefer for another doctor, with a similar approach to Dr Patel's, to take his place. With two doctors in the clinic whom people desire to see equally, those waiting lists would hopefully reduce.

So anyway, once again, I'm waiting to see Dr Patel. And my poor GP is trying to tweak my medication with me while we wait.

Raise money for cancer!

A friend of mine is doing The Rose Walk. It's a sponsored walk to raise money for the Cancer unit in her locality; la Fondation du CSSS de Gatineau (the Foundation of the CSSS of Gatineau). She lives in Gatineau, in Canada. The walk is 30km. All those participating in the walk are to raise $1000 (Canadian), as such I am looking to you to sponsor her with me.

The money raised will go towards the Cancer Unit's Pathology Lab, and to purchase post operative gowns for the Breast Cancer Unit.

Since I cannot do sponsored events myself, all I can do is implore you lovely people to sponsor my friends as and when they participate in sponsored events.

The process for entering your card details is also in French. You can either use Google Translate to help you through, or contact me and I'll go through the process with you by IM.

Thursday, 11 July 2013

Pain is a pain in the everything.

Originally, I was prescribed Tramadol four times a day. I found that Tramadol keeps me awake though, so I reduced this dose to three times a day. This of course meant that I needed a different pain killer at night. I was prescribed Gabapentin by my specialist, last year.

It worked well to start with, but over the year it's diminished. Rather than increase the dose I requested, last week, to change to a more commonly used medication; Amitryptiline. He had no problem with this, but along with everything else he forgot to do, he forgot to write the prescription for this. (I hasten to add that this was NOT Dr Patel at the George Eliot). I left a note for my GP on the way home from the specialist appointment, telling him that I now had no pain medication for night-time, asking him if he could write the prescription for Amitryptiline for me. It's a commonly used drug, one which he's prescribed for me before under different circumstances.

So, I expected to spend the weekend without pain medication. Come Monday though, there was no prescription for me, and of course I can't get an appointment with, or speak with, my GP about it for weeks.

At the same time, of course, my Tramadol is running low. So I put in a request for a repeat of Tramadol on Monday, too. For some reason it seems particularly difficult to get a repeat of Tramadol. I don't know why it's so controversial. I've been assured that it isn't the cost of the drug. So, because I know it takes ages for the Tramadol prescription to come through, I've reduced the dose of Tramadol, to twice a day.

So, for a week now, I've been on less than half the pain medication my body has become accustomed to. It's very easy to say that I'm not addicted to these pain medications. I'm not ... not specifically addicted to Tramadol and Gabapentin, anyway. However, my body now requires pain relief of some sort. Last time something similar happened, I sought relief from Codeine Plus, or something like that, which helped a little. I only have Ibuprofen available at the moment though, which doesn't seem to do much at all.

So, I AM IN PAIN. I have a stabbing pain straight through my head (withdrawal no doubt). My entire body feels horrible. Obviously, the pain that the medications help with has come back with a vengeance. But, my body feels like it's starving, too, an experience I have never desired to repeat. Standing up feels uncomfortable, as if I'm unable to breath. Yet my breathing is unaffected.

I can't remain in one position for more than a few minutes, but I cannot explain why. Nothing feels right. This is the hypermobility. Before taking pain medication I was used to this feeling, and hadn't even realised I was in such significant discomfort. Every joint in my body feels ... loose. I can feel each tiny movement, some feel like they're grating, some feel like they're swimming. Subluxations have become a lot more common throughout this period of pain and discomfort.

And of course, with pain and discomfort comes the lack of sleep.

I'm so tired of fighting to live a normal life. Not just striving, but fighting the NHS and DWP. I have to argue my case over and over and over again, to get the simplest of things. This medication change is just one example, among many. I do at least have a GP who is working with me now, despite it feeling as if he's doing it so slowly. I've been ill since 2002: This is the first time someone is taking me seriously.

Monday, 1 July 2013

Let's judge the disabled!

Honestly, I don't really know why I'm writing this post. I feel like I need to warn people I suppose, that's all.

A few months ago I contacted DIAL about my DLA application. I had just been turned down when I applied myself, and had absolutely no income.

There is a huge stigmatism around benefits in the UK at the moment. As such a lot of genuinely sick and disabled people are being declined benefits that they genuinely need. The media has done a very good job of turning every day normal people against the sick and disabled. People who would normally help someone they actually see in distress are begrudging those people the tiny amount of money that they need for simple things like food. People are starving, food banks are at breaking point. Anyway ...

I am disabled. I've spent years trying to deny it to myself, but in the last few years I've been forced to admit it. Even my family, who's had their head in the sand over the fact that I'm ill, has started recognising that I have these problems. I'm disabled!

I have M.E. and Fibromylagia. I am hypermobile and have recurring back problems. I have PSTD and suffer with severe anxiety attacks. I am in constant pain, which is only partly relieved by very strong pain killers. The severity fluctuates; on my best days I can potter about the house a bit, maybe even go for a walk. On my worst days I have to knock myself out for the day to avoid the agony. I suffer with fatigue and exhaustion the like of which you can only imagine if you've actually experienced it yourself. Walking is painful. Remaining in any position for more than 15 minutes is painful. The fatigue means I struggle to meet any expectations placed on me (doctor's appointments, shopping trips, taking medication at designated times, etc). It means that I frequently have problems performing simple tasks or formulating sentences. I'm often mistaken for being drunk. (I don't drink).

Being disabled is hard. Even if you're not disabled, having a long term illness is hard. You have doctor's and specialists whom you try to keep happy. It's human nature to wear a mask, leading people to believe that things are better than they are. That doesn't apply any less to sick or disabled people. If anything it applies more.

So, you spend most of your time trying to put a positive twist on all these difficulties ... and then you have to fill in forms describing how bad things are. It is very hard to make such a huge mental u-turn. You have to scrutinise every little thing you do. For me it includes measuring how far I walk between each tick - because every tick can cause me to fall when I don't have my stick. Before filling in the form I didn't realise how frequently I was actually ticking! You end up learning that you're far more disabled than you thought you were. Really, most of us are actually in denial until we go through this process properly. As such it's very demoralising, and often causes distress and depression.

You can imagine how easy it is for those who wish to commit benefit fraud, can't you. They don't have any of these difficulties to face, just a little research into a condition, tick a few boxes, tell a few lies.

So, as I was saying, DIAL helped me with my recent DLA application. Honestly, with everything else going on in my life at the moment I'd totally forgotten about it (people dying, and my mother having strokes). I was resting in bed, my body is currently inflamed with a Fibro flare, which I have to rest off. At approximately 1pm I received a text from my boyfriend telling me that he'd had a call from someone regarding my DLA application. She told him that she'd been trying to call me, but I wasn't returning her calls. Funny thing: I've not had any missed calls! He took her details and texted them to me.

I phoned her back. Obviously she has an advantage over me, in that she knew where she was phoning from and why she was phoning, both pieces of information she refused to give me. Understandably she needed to ask me security information. Having dealt with the DWP over the last few years, both for myself and for others I'm way too familiar with how this works. She did not stick to protocol. For example, she only asked me my date of birth. Part of that protocol is to ask you which other benefits you're on - anyone trying to fake another person's ID is likely to have checked out their date of birth, address, all the obvious things; asking what benefits someone is on is not obvious, so it's an easy way to catch people out. She didn't ask this. Instead she said to me "You're receiving Carer's Allowance, aren't you!".

When she asked if I was receiving Carer's Allowance, obviously I answered that I am, because I am. She then asked me how. I did not understand this question. She went on to elaborate that my form states that I have zero mobility, and asked how I manage to care for someone if this is the case. She did not give me time to answer. Instead insisting "Do you have zero mobility or not?" Again, she did not give me time to answer, instead moving on to asking me about wheelchairs. She told me that I use a wheelchair when I go out, but that my partner cannot push it, so told me that I must push it myself, despite reading off the form to me quoting a part where it says that I can not self propel.

She kept going like this, not allowing me to get a word in edgeways, putting a twist on everything in a snide smug tone. I ended up raising my voice over her to try and communicate my actual answers to her questions. Obviously, I do not want her twisted version of things going on my record. I do not want to be turned down for DLA again, unless it's legitimately. Plus, I do not want her lies on my record as they will be referred to for future assessments. It's because of a medical assessor lying on an ESA assessment a few years ago that I have these problems to start with.

She told me that my form stated that I have expensive night time needs. I didn't and still do not know what this means. I tried to ask her, but she kept going. By this point I was crying and shaking, so I asked her to talk to my support worker instead of myself. She told me that she doesn't have to do that. I told her that I was officially asking her to. She repeated that she doesn't have to do that. Then, while I literally sobbed the request again to her, she hung up on me.

A pretty bad panic attack followed. I really do not cope well with confrontational situations. I sent a fairly vivid description of what had happened, to my boyfriend, via text, asking her to phone her back again. I also dragged myself out of bed and sent my support worker an email about it, crawling back up the stairs to bed afterwards.

My gripe is this: she knew that I was at home alone, she knew that I was bed bound at the time I was speaking to her, and she should have known that I suffer with extreme anxiety. It was her choice to push me, and deliberately wind me up the way she did.

When my partner spoke to her afterwards, firstly she told him that she wouldn't talk about it with him. She told him that he had refused to answer her questions when she had phoned him previously. This was untrue; she didn't even ask him to answer questions, she'd only said she was having difficulty contacting me. He told her that he had caused a massive panic attack, explaining that he now had to leave work to sort it out. She claimed that she did not know I suffer with anxiety. Every piece of my supporting evidence describes severe anxiety and PTSD. My form mentioned anxiety throughout. She basically told him that she didn't look at either my supporting evidence or my form before trying to contact me.

I suspect she speaks to every applicant in exactly the same way she spoke to us. I also suspect she never reads their information until she's speaking with them, thus causing a lot of anxiety issues for people similar to myself. That woman should lose her job. A position dealing with people who are sick or disabled needs someone with at least a little empathy, particularly if that job requires judging them and being responsible for their future .

So, anyone applying for DLA, please consider yourself warned about the phone call you might receive during the application process. You don't have to put your phone number on the form. Eliminating it will avoid this horrific part of the process.

Monday, 20 May 2013

Is IDS a compensatory narcissist?

For those who can't view the text in the picture on their phone, it says:

Is the Tory Work & Pensions Secretary Iain Duncan Smith a compensatory narcissist?

Here are some of the common behaviourly traits:
  • Strives for recognition and prestige to compensate for the lack of a feeling of self-worth
  • May "acquire a deprecatory attitude in which the achievements of others are ridiculed and degraded"
  • Has persisten aspirations for glory and status
  • Has a tendency to exaggerate and boast
  • Entertains fantasies of greatness
  • Covers up a sense of inadequacy and deficiency with pseudo-arrogance and pseudo-gradiosity
  • Produces work not up to the level of his abilities because of an overwhelmingly strong need for immediate gratification of success
  • Is touchy, quick to take ofeence at the slightest provocation, continually anticipating attacks, reacting with anger and fantasies or revenge when he feels himself frustrated in his need for constant admiration