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Chronic pain sufferers are being let down by the NHS

Usually i am the first to jump to the defense of public services when the ill informed media sensationalises any apparant failure or weakness in the NHS. Well today, i can report a real, tangible and upsetting failure by the NHS that i know effects patients all over the country, that of giving suitable analgesia to patients who suffer chronic pain. 

If you are a regular reader you will know that at age 17 i was diagnosed with a condition that resulted in over 50 invasive operations in 7 years. I am currently having two operations a week, and am in hospital now for pain relief while i wait for my next operation on Monday. 

Due to the amount of operations i have had, i have some nerve damage leading to chronic pain. Chronic pain is pain that lasts a long time, that can't be cured in the short term, as opposed to acute pain that is short term and curable. I have therefore been on a lot of pain killers, for a long time. 

I am picking on 2 areas of the NHS where i have experienced extremes of care quality, and you will hopefully appreciate how let down i feel by the NHS. 

As i have chronic pain, i have been referred to a Chronic Pain Consultant. He is a consultant anesthetist who has again specialised in Pain Management, so he is one of the most highly trained doctors in the NHS. Most people on long term pain killers will experience extreme guilt. Pain killers have an effect on you psychologically, and physically. From a physical point of view, the body becomes dependent on pain killers. This means that when you suddenly stop pain killers, you suffer from withdrawal which can be dangerous if uncontrolled. So when you come off high doses of pain killers the best way to do it is so slowly decrease the dosage, rather than go cold turkey. Dependance refers to the physical effects of the pain killers. 

Addiction refers to the psychological effects of pain killers. Addiction, put simply, is the involuntary compulsion to take pain killers for reasons other than pain. Its a natural consequence of being on pain killers, and its NOT something to be avoided at all costs. If you are in pain, addiction and dependance is a bridge that can be crossed at a later date. However someone who has been on pain killers will, at varying levels, crave pain killers even when they may not be in pain. This is where the guilt comes from, as they may feel they are abusing their prescribers trust, or doing something unacceptable. Sometimes when i felt pain, i would question if i was actually feeling pain, or if it was by brain telling me i was in pain so that i could satisfy my addiction. It was so complicated, and i felt helpless to control it until i accepted them as natural side effects. It is, in fact, totally normal. I felt so much better when i finally got the courage to admit to my consultant that i had taken doses of pain killers when i had not been in pain. He is experienced and emotionally intelligent enough to respond to it in a way that pacifys my guilt, rather than reinforces it. 

Practically chronic pain management involves taking levels of pain killers that are going to lead to dependance and addiction. I have come to terms with that, and feel much more confident about the future, and a lot more supported by my pain consultant. This is where the NHS is succeeding, sadly everywhere else it is failing. 

I am next going to talk about the ward i am currently on, but it has equal relevance to an A&E department or GP's surgery. A chronic pain sufferer is at the mercy of the individual nurse's training, experience, and more importantly, compassion. 

When i come into the ward as an emergency admission, its usually because of pain. At home i take massive amounts of pain killers for chronic pain. I am admitted to hospital because i cannot control my pain at home. This is where the terror starts. Most nurses don't understand that patients can become tolerant to pain killers. Therefore a chronic pain sufferer, who is on a lot of pain killers, on a long term basis, will need a much higher dose of pain killers to deal with the pain than any other patient. So as a patient i have two options; either risk being labelled a drug addict by asking for strong pain killers, or remain in pain for hours while i work my way through the weak pain killers the nurses give me. 

I have spent years building relationships, trust and understanding with the nurses on this ward, and it is only recently that they really understand how to treat pain in a chronic pain patient. There is one or two nurses, however, who still do not understand, are jobsworths and unnecessarily obstructive. One in particular is a senior nurse, so once i have found a regime of pain killers that is working for me, she will come along and make changes...leaving me in pain for hours, if not days. 

However, i can jump to her defense. She clearly has the emotional intelligence of a robot, but a chronic pain sufferer deals with pain differently. When my pain increases, i won't always be writhing around in pain, screaming or shouting for pain relief. I have learned psychological techniques to manage pain so that i can continue with normal life. If i were to start writhing around in pain, it would be false and i would feel like i was misleading the staff by doing that. I am, however, in a lot of pain. These nurses need to learn to trust their patients, and give them the benefit of the doubt. They can see that i have had over 50 operations, so the mere presence of 3 volumes of medical records should demonstrate that i am genuine and not a drug seeking addict. 

One thing i fear the most is being challenged by the nurses that don't care to understand. I am faced with the same dilemma; i either fight my corner and risk appearing like an addict, or i allow myself to be bullied into reducing my pain medication, and therefore suffer a lot of pain. I have to admit, the thought of it upsets me. When this confrontation actually happens, like it has today, i find myself in tears of helplessness. 

Some nurses lack compassion so much that they will never learn. But some nurses just lack the training, and these highly experienced pain management consultants are best placed to deliver training to improve the care of chronic pain patients. The nurses that already know how complicated it is to treat chronic patients deserve a get to that stage it takes trust, honesty, and patience. 

On this ward, the nurses are both my heros and my torturers. Inevitably, when conflict arises, the torturers win.