Well/Fair Treatment?

Over recent years there has been much talk of making people more responsible for their health. So for example, it was suggested that if a person injured themselves because of being drunk then they should pay for the cost of their treatment at the local A&E. Further, in some areas local health authorities have denied patients operations unless they give up smoking or lose weight. Some may feel it is only right that treatment is denied when an individual refuses to take appropriate care of his/her health. Conversely, how would people feel if treatment was forced upon them rather than denied to them?

One of the 17 areas identified for further welfare reform announced by David Cameron in his speech last Monday - that could potentially affect many disabled people - gives rise to a particular reason for concern:

'9. Requiring anyone on employment support allowance to improve their medical condition in return for benefits, for example, taking free physiotherapy if suffering from a bad back.'

At first glance, this may sound very reasonable; after all, who wouldn't want to improve their health if it was at all possible, and return to an active and productive life? Presumably then, at the point that someone is assessed for employment support allowance, the DWP will contact the G.P. and/or consultant, and request suggestions for possible treatments to improve the condition. Surely, doctors and consultants will have the best interests of the patients at heart? Nevertheless is that always what occurs? The case of where things can go wrong when G.P.s, N.I.C.E., and consultants think that they know the best course of treatment is aptly demonstrated in this piece from the 'Invest in M.E.' website (full article here):

'....The psychology used against sufferers [of M.E.] is even worse. During the second appointment with the pain specialist last year, she said she could offer me a new service called 'IMPACT' they were trialling that combined physiotherapy, psychotherapy, and information about coping with pain which she thought I would really benefit from. Firstly however, she said that I would have to see the psychologist for an assessment as this was part of the process. She also told me that I had 'Widespread Pain Syndrome', but when I told her that her diagnosis did not explain the muscle spasms, loss of feeling, exhaustion and sensory problems, she just dismissed me out of hand. I was about to lose my work due to the new more severe symptoms and so I didn't dare refuse the treatment because I was afraid that a refusal to engage with therapies may affect any future benefit claims.

I returned a third time for the psychology appointment. During his 'assessment' he informed me that all the coping mechanisms I had used in the past (self help, professional counselling, and CBT via 'mood gym' online) and all the advice I had been given by various medical professionals, had been absolutely of no use to me because I still had bouts of depression and I was still in pain. I said that I had bouts of depression when my condition deteriorated, which I felt was only natural and that I always recovered, and that up until I started to have massive spasms I had learned to cope with the continual pain. He said that if I would agree to attend a 2 day a week program he thought he could help me transform my life for good. He said that at these sessions they would intentionally cause me to have spasms and I would have to go through a lot of physical pain. Immediately I said this would be impossible as I could barely spend an hour or two away from home without becoming very ill, attendance 2 days per week accompanied by the physical stress he said I would be put through could see me seriously incapacitated for months afterwards. He said that I wasn't going to be forced to do it but then asked if I would be prepared to have 8 psychotherapy sessions at the same clinic instead as he felt I would benefit greatly from that; I reluctantly agreed. Meantime I looked up some information about the psychologist, and he and his colleagues had been developing the 'mindfulness' techniques which is quite new to psychology. It seemed like a good approach to illness so I decided I would fully engage with the psychologist at the next session.

During the first psychology session the psychologist really upset me, bringing up past matters and intimate details about my life that I had really moved on from, but he said it was necessary to bring it all up so I trusted him to do the right thing. I told him I was afraid that after he had brought up all these things he would then abandon me just at the point that I would probably need more therapy, but he reassured me that he was committed to helping me cope with my illness and would see me beyond the 8 weeks if necessary. He gave me a few things to work on for the following week, which I duly followed and I felt really positive about the next session. The psychologist came across to me as a caring individual who really wanted to help me.

The following week at the second session everything changed. After asking me how I had been and talking generally for 10 minutes his attitude suddenly changed, he pushed my file away from him on the desk and told me he could no longer help me unless I was willing to attend the 2 full days per week originally offered (I am aware that psychologists use this method of suddenly changing tack to elicit certain actions from their patients). I reiterated that this was impossible, but I asked him what happened at these sessions. I was told that mornings were spent in the gym exercising and afternoons in lectures concerning pain management and the psychology behind pain. I asked him if he would accept me coming and then going home as soon as I became ill; he said no. I told him that research shows that exercise can be detrimental to sufferers with my condition, but he said that HIS research superseded  ALL other research and only HE could help me: NOTHING else would work for me he said. He told me his research was proven to make people less disabled and could even cure a condition. I told him I was too ill to attend such a clinic and people who were as ill as me just wouldn't be able to do the course, so it followed that his research was skewed. He said people in wheelchairs were even attending, but I repeated that they couldn't suffer the same symptoms as me because they would be very ill by the end of the first morning. He then said that if I wouldn't attend he would cancel the rest of my psychotherapy sessions and any contact with the pain clinic; I said no and so he cancelled them. 

I was totally shocked at how he had firstly 'messed me up', and then tried to manipulate me into attending by denying me any further appointments at the pain clinic. I worry now that should my pain medication need further attention, I will not be allowed to access a pain specialist. I was also disgusted that this man and his colleagues, who are connected to a well known university that supposedly specialises in the care of M.E. and Fibromyalgia sufferers, are literally running pain specialist clinics and working up a model that will likely be adopted by the NHS. If you thought GET was bad, then this is a whole lot worse as it is based on 'research' that states that ALL other research and treatments are now invalid.

Meanwhile, on top of all this, the G.P. hauled me into the surgery again to demand to know why I had applied for funding for the transport costs involved with attending this clinic when I could easily catch the bus. I told him it was impossible for me to use public transport as it was a two-bus hour-and-a-half trip and that I couldn't even use buses for short trips now. He said that I wasn't disabled as I only walked with a stick and that I am expected to catch the bus. I told him that over the last 13 years, whether at work or periods when I have studied at university, I have always been granted transport letters from G.P.s, that I use a wheelchair for anything further than walking from his reception to his office and that I have 28 hours care per week from the local authority so I am in fact chronically disabled. He said he was totally shocked by what I had just said, but he would have to have a long hard think about it as I did not fulfil the criteria. So he made me sit in silence for 5 minutes while he looked into space to think. He finally agreed but said he was very unhappy about it. It was the 'straw that broke the camel's back' for me.

It took me 6 months to recover from the psychologist's manipulations and the abuse from this G.P. I had to use the anxiety and CBT therapy packages again via 'mood gym', and used self help sites for many months afterwards. It was enough to push me completely over the edge. I had self harmed as a youngster and after a particularly nasty session with my G.P. when he was refusing a referral, after nearly 30 years, I had started to self harm again and it was becoming out of control as my wounds were regularly becoming infected. I also turned to alcohol for relief, drinking myself into oblivion every night and I put on 3 stones in weight because of it, which exacerbated my illness as it was harder to walk with the extra weight. 

I was determined to find a balance however and worked really hard to combat this mental deterioration.  Recently, I plucked up courage to move to a different G.P. (I had not dared whilst the contact with consultants was ongoing) and I'm happy to say that for the first time for a very long time, I feel like I'm developing a good relationship with a doctor who is objective and caring, but I am very concerned that the previous G.P.s attitude toward me has prejudiced any further help from any consultants. He is a partner in my practice, so funding matters will now go through him with all the NHS changes, so I know he will block access to any further treatment. I looked into making a formal complaint, but I know other people who have done so at my surgery and the surgery have just removed these people from their lists. Other surgeries are too far away, and from all accounts are even worse than the one I already attend. I still self harm but it is under control so I have not had to dress any wounds for some time now; I have also lost some of the weight as I have gone back to drinking on just two nights per week. I dare not even tell the new G.P. about the mental distress I have been in case it goes onto my records providing further so called proof that my illness is anxiety based.

Finally, I know I have gone into quite a lot of detail here about my treatment (and this only covers the last 3 years not the other 12 when I was also subjected to many humiliations), but I hope it demonstrates how utterly distressing it is for sufferers to not only cope with their ever deteriorating health, but to cope with supposedly professional people who use every opportunity to psychologically batter them into submission. Nevertheless, these professionals are informed by the guidelines provided to them by NICE, so it is hardly surprising that these abuses occur: it will not change unless the G.M.C. takes affirmative action to adjust these guidelines based on available medical research so that the next generation of G.P.s can be educated appropriately, and not as at  present whereby they are provided with subjective and dangerous theories from psychologists that informs current medical care for M.E. sufferers. It is nothing less than a disgrace that progressive governments have failed to influence such change despite WHO's classification of the disease; I just hope that these submissions may make a difference.'

The person concerned above was me. It thought carefully about printing this on the blog as some things are very personal, but when considering those few remarks Cameron made, I felt it was too important to leave out. 'Invest in M.E.' asked for my submission to form part of a reply to N.I.C.E. in connection with approved treatment for M.E. sufferers (I've never had a formal diagnosis for CFS or M.E., and I also suffer M.S. symptoms), in order to demonstrate how 'out of touch' current treatments are, and how they do not take into account the effects on the patients. The frightening thing about this new type of treatment is that it's not just M.E. sufferers who are targeted, but cancer victims, people who have rheumatoid arthritis, M.S. sufferers or anyone who experiences chronic pain. If the government starts to require people to subject themselves to treatments that G.P.s and consultants feel is necessary, without listening to the patients' points of view, it has the potential to cause a lot of suffering and distress, and could lead to a complete loss of income via 'sanctioning' practices by the DWP and workfare companies.

We always think that the medical professionals are just that: professional. Now of course, many healthcare professionals are, and rightly deserve our praise and thanks, but my experience – along with many others – proves that this is not always the case. They consider themselves experts, but perhaps many of you have heard of something called 'expert patients'. Patients who have lived many years with their illness often know more about their condition than their G.P., and it's not unheard of for them to know as much as a consultant! When you love to work, socialize, go on holiday, take part in sports, and suddenly you become ill, believe me when I say that you try everything that you possibly can to become well, you research your condition so that you can hope to become well or at least keep yourself from deteriorating any further if possible. You are desperate to resume your life, and you won't turn down any initial suggestions that could help. And you never give up; you never stop searching.

I've been ill since 1996. I've tried all of the therapies a few times over, but my condition is very severe now, so as far as physical therapies – not including physiotherapy which I do at home – my experience has taught me to steer clear of things that I know will do me further harm. After many years of trying to increase my activity (and failing), I knew that if this psychologist forced me into the gym 2 mornings per week and then made me stay for the rest of the day, I would be in serious physical trouble. I can go out for a few hours on the odd day, either in a wheelchair, or just sitting to have a meal out for example (which can only include a little walking). Firstly, I need a lot of painkillers to achieve that, and secondly, even with the painkillers it can take me days to recover, just because I was only out of the house for 2 hours and sitting in an uncomfortable chair. It is therefore unthinkable to expect that I could possibly exercise for a couple of hours on two consecutive mornings, with lectures all afternoon, and no rest: 'Graded' Exercise Therapy this was not. I can't even stand for very long, let alone do a full workout. After the first week, I would have been bedridden; heck, after the first few minutes of exercise, I would be on the verge of collapse. And, when I become that exhausted, my breathing isn't automatic, so I have to stay awake until I can breathe without having to think about it, which can last for such a long time that alongside the pain you wonder whether there really is any point carrying on in this life at all; endless days and endless nights of pure misery.

The thought that the DWP might subject people to treatment at pain clinics is almost too much to bear. It is also unethical to the extreme. No doubt if the government introduced such a system, sanctions would also exist, and they wouldn't care what 'excuses' you used. DWP staff and workfare providers have already sanctioned 10,480 claimants in the Working Related Activity Group between 1st September 2010 and 31st August 2011 (see table on page 14 of the DWP document), because they did not accept valid explanations given as to why they were not able to attend particular work placements. We can only hope that the excellent G.P.s who do exist will block any moves that force people to engage in activities that would leave them not only completely helpless, but expose them to something that could actually endanger lives.

Finally, take four minutes to watch and listen to the video here of one sufferer who describes what it's like to relapse after activity, and why healthcare professionals should listen to sufferers when they say they are unable to engage in activities that will harm them.