Interesting

[Tally]

I've just picked up some copies of medical notes that my GP gave me to support my application for Disabled Students Allowance.

 

I've been in and out of the mental health system for all of my adult life and for most of that I've felt totally unlistened to and blamed for creating all my problems. When I first discussed the possibility of Asperger's with my counsellor I was advised that I was just making up excuses not to work on my recovery by blaming all my problems on an incurable condition. More recently, since getting a formal diagnosis, a counsellor told me he did not think I had Asperger's, and that the reason for my many social difficulties was because strangers could pick up on my vulnerability and exploit that to make me feel bad. (Talk about paranoid-making!) When I started complaining of feeling tired all the time I was told I was just lazy, needed to do more exercise, and was sleeping to avoid facing my problems. And by several people, not just one person.

 

I was advised that researching how Asperger's affects me was detrimental to my mental health, and after the psychiatrist suggested CFS, not to research that either. So I went on believing I was just lazy when I could have spent time learning how to manage my life better instead of carrying on making myself worse by trying to do so much.

 

A couple of years ago I saw the consultant in charge of the Chronic Fatigue Syndrome team at the hospital. I came out of the appointment feeling totally unlistened to, I felt like he had disregarded the severity of my illness (which I feel is minor, but most definitely present), and I thought he blamed my illness on low self-esteem. The write-up of this appointment is one of the letters my GP has given me. In it the consultant states that I have "moderate" CFS, "significantly disabling fatigue," and he also notes that elements of Asperger Syndrome were present during the appointment which should be investigated further by a suitably qualified professional. This was never followed up with me, but perhaps my GP did look into it and realise I already had a diagnosis of AS. He also suggests I research as much as possible about CFS so I can manage the illness better.

 

It was interesting to read that my CFS was most definitely not down-played by this consultant, even though I felt it had been, and that my Asperger's was apparent to someone not an expert in the field, when those who should have spotted it denied it so vehemently.

 

I obviously got totally the wrong end of the stick about what this particular doctor was telling me. What if I am misinterpreting everyone else in a similar way? But counsellors especially should be good at communicating clearly, so it doesn't seem likely.

 

Anyway, I do feel rather vindicated by reading this.

[A-S warrior]

i said it before somewere, doctors and menal health "professionals" that arnt on the autistic spectrum simply dont understand it and never will. it takes someone with aspergers to understand it. for example if you thought you had aspergers who would you turn to? the specialist? or the guy who has aspergers and has overcome it? altough i see my a-s as an ability, newer suffers certainly dont. thats why there should be pepole like me working in the nhs with pepole on the autistic spectum. i actully know what im talking about and would be solving pepoles problems much more effectivley and quickly without all the trouble and distress inbetween. but no! you need a phd in bulls*it these days to be able to do anything!

[trekster]

My medical records have a few things that I wished had been followed up. Early 80s I saw a speech therapist because I wasn't talking when I was a toddler. After 6 months of intensive speech therapy I was described as having formal speech but at an expected level for my age. I was never told this so got diagnosed with Aspergers instead of ASD. I also got rid of all instances of implied hypochondria in my medical notes.

 

I misunderstood a tutor of mine sometime ago on my sage bookkepping course. I kept muttering under my breath 'he doesn't get it'. I wish the college at the time had told me 'actually hes researching autism so he can understand you better' as it would have prevented me from making a fool of myself. Apart from putting pressure on me to pass by telling me 'all his students pass' (and I didn't feel ready as I was recovering from my 1st near breakdown) he was a reasonable tutor.

 

Misunderstandings happen, and i have to remind myself of that when i get into a disagreement with anyone. However if someone does say to me 'I think you have misunderstand' that can repair a problem before it gets nasty.

[Tally]

I just feel like I've spent a lot of effort trying to explain how bad things are, and just get told I'm wrong about my own experiences. It's nice to know that I was listened to and my difficulties acknowledged in at least this case, even if I didn't realise it at the time.

 

And I just thought it was interesting that he picked up on the Asperger's even though he's not in this field. But maybe he has some personal experience.

[robert7111a]

K2.

 

I work in the medical field and see first hand patient experiences with doctors. I also hear doctors not explaining things properly or in an inappropriate way that a patient cannot understand. I hear every day "It's all in your head" if for example, a teenager says she can't hear and there is The trouble with allopathic medicine is that it is always the symptoms that are treated rather than the cause. If a doctor doesn't particularly understand a patient's condition, he will avoid the subject rather than take interest. Of course, there are a lot of good doctors out there but it's often a matter of chance who you are referred to and who you see "on the day".

 

I have learnt to research things myself if only to get a balanced opinion or wider view. One can easily spend a lot of time and energy researching things but doctors get offended if you come across as knowing more than them. Doctors are also busy and often don't have the time which does seem rather counterproductive. Don't lose heart. Knowledge is a powerful thing.

[LancsLad]

Tally thanks for a very interesting post. Here are a few of my thoughts on medical notes and importantly on the people who create them based on my personal experiences.

 

I think there are a few things to consider in general. The first is that we are talking about conditions of the mind which has to be by far the most complex area of medicine / therapy out there. It is also an area which is constantly developing and one in which theories play as important a part as clinical evidence. If you throw into the equation that we are all different and will often present very differently on seperate days. At another level we have to remember that people are very much influenced by their formative training. I know that a lot of my core beliefs around teaching eminate from a specific period when I went to college and what i was told, experienced and researched help form these views. These ideas can change and move with the times, and you do get to attend the odd very influential course or two, but my experience is that all professionals tend to be reflections of their core training periods. I also suspect that a lot of individuals in the 'mental health' sector to give it a term, possibly have little time available to keep up to date with current ideas.

 

My experiences are that whilst this is understandable it can create emense problems for the individual concerned. One of the problems I have felt is that the NHS works on a very hierarchical system nurses, doctors, consultants and senior consultants. A lot of the time they have very little experience of each other, often working miles apart in isolation. I have had times when I have felt I was making good progress with a community psychiatric nurse to have this work put in a very different context by a sugested diagnosis criteria from a consultant. The nurse feeling almost obliged to go with it as he was a senior professional. Who is to say that this consultant is right or wrong. What I do know is that he had a set of tools available to him and as such it was all he had to work with. In this case I do not think he was aware of AS for example it never came up, rather his toolkit consisted of knowledge about personality disorders and so he tried to fix me within that context. I am not saying this is right but it is kind of understandable.

 

I think the idea of areas of expertise and experience is important, but I believe we need balance in the system. Following my diagnosis of AS I met and worked with an individual for a short period who spends the majority of her working day working with adults with AS and has done so for a number of years. Whilst coming to terms with my own diagnosis I had to question myself would this individual given her experience be able to say I know you have been given this diagnosis but I do not think it fits? I am not sure as it felt like I had entered a specialist AS world and the momentum was very much in that direction.

 

Without doubt I feel there needs to be a balanced oversight level and I am not sure GP's have the experience to handle this, I know that I am the only person with AS on my GP's caseload and as such he has no other experience to draw upon, its an area he did not cover in his training and unfortunatly one individual is not enough of an incentive to get his to buy a few good books let alone undertake some specific training. To be honest I think we are at the level where I can now say AS and do not have to use the terms Asperger's Syndrome a condition on the Autistic Spectrum. At one level I do have my concerns about focusing all experince into small specialist groups. I can see parents getting a notion in their head of AS through a range of sources, going to the GP who refers to an AS specialist and the end result is a diagnosis on the child of AS. I think you have to have a system in place where this is not inevitable once an empowered parent makes the decison that is what they want or even feel need, the interests of the child should be paramount and not the adults in the process.

 

My experience of the system is it can be highly disconcerting if not outright stressfull. For a lot of the time you are left floating around waiting for appointments which can take months or years to materialise. When something does happen you are then left in limbo as paper notes move around for a week or two and a GP makes a decision on what to do next. At times you then get to work with counselors and therapists and everything gets very sensitive and personal only to be told this time has to now come to an abrupt end and you are left floating around in space again. At times I have thought how would a perfectly healthy individual cope with going through this experience as a placebo in a trial, my conclusion is they possibly would develop their own mental health issues.

 

My last point is all about notes and medical information. On a personal level I went through avery messy period in my life were in effect I was pressured to sign a consent to what in effect amounted to a dismissal from my employer whilst in a secure mental health unit. Once I was out of the unit and a bit better I fought against this and had to go to appeal stages with lawyers and union involvment which I rightly won. The reason I raise this was that one day a very large brown envelope arrived from a solicitors office which I opened and realised it contained copies of all my mediacal records and all the letters which had been travelling through the system in a complex case. I did not ask for this rather a clerical assistant had sent it out as a matter of course with little thought. I had never previously felt I needed to see any of my notes, I did not want to read them this time but felt compeled to do so. Some of the information was confidential and not even intended to be seen by me as it was personal opinions, a lot of it felt brutal. Other pieces of information such as notes from counselors giving feedback to my GP and notes from my GP to the psychiatric nurse were encouraging of my efforts. The hardest things to read were notes which were generated around my suicide attempt which revealed their real and genuine concerns for my well being you could sense the fear when discusing whether or not being in a secure unit was the answer as they felt if I really wanted to take my life there was little they could do given my personality and black and white thinking, in some ways they were expecting a bad outcome.

 

At the time reading my notes led to me taking sides and the consultants were definatly the bad ones in this as was anyone involved with handing out diagnostic badges or opinions. The good people were the ones who delt with the symptoms and handed out words of encouragement, but when my contact with them ended, they moved posts or services were restructured the severing of these relationships felt almost like betrayal. In hindsight I can see all my notes are within a context, the consultants maintain their heierarchical authority by using a certain style, their notes are short to the point, rushed they say I am a really busy expert this is my decree from on high. In contrast the counselors are supporting thier own cause, I am a caring individual and offering really good value here, I even write to you with full updates to prove my value. I am not trying to be scynical here but rather I suspect this is kind of inevitable and how things will be.

 

Tally you raise some good points about conflicting information and questioning did you read these people wrong at the time. Likewise there is a lot of conflicting information in my notes in many ways i am carrying conflicting diagnosis at present and the efforts involved in striking one out of my records is not worth it. I think the only way not to get conflicting views on mental health is to only ask one persons opinion and stick to it. With time and the fact issues can continue in an ever developing field i think many GP's will say ok go and see this person to see if it works. This can be particuarly true of a GP who's basic inclination is to fix people. My GP has been like this at times and so it felt like always trying another medication regime, another set of therapy getting another opinion because he was out of his depth. This can be really confusing for the individual concerned and for me I was carrying around one belief system and if faced with another my confusion arose from why do you believe something different. In many ways it would be easier if they agreed with my belief system that I am a complete mess and there is little hope of a happy ending. In hindsight it is sometimes hard to remeber how strong our emotions might have been at the time.

 

To conclude I feel for many adults who have had to go through the NHS system and the changing landscape of mental health over an extended period of time for me 20 plus years the process is bound to throw up a lot of issues. At one point in my life I reject it all medication and did not see a professional for 3 years and simply tried to cope as best as I could, some would say I was strong, others I put my head in the sand, they would both have valid points to make. Since my diagnosis of AS I have been able to rationalise what has happened over these past 20 years or so and what it might mean to me, this is how i see it;

 

I view it as a journey going around a number of food producers who give me a single item a pices of meat, a vegetable a loaf of bread etc.... I have come to the point where I have got enough produce to make a good quality meal, and i value everyone for their contributions to my food basket. The hard bit is what shall I make. The starting point is I have a piece of fish and a piece of meat (these are my two main diagnosis one a personality disorder the other AS). I know it is in the interests of the meal to choose just one and so I go with what feels right and on balance when I look at the other items in my produce basket they lend themselve to a meat dish because they have strong rich flavours than they would for my piece of fish which they would tend to overpower. I also know that I want the meal to be balanced and a concept which holds together in a simple way, as a result I also decide pick two vegetables for the dish and to put some of the ingredients to one side to make a simple stock which is the basis for a sauce.

 

In this way I now see AS as my meat at the centre of my plate. I know my clinical depression and anxiety are large components in my make up. The more difficult area and a complex one which required time to develop is the stock and from it the sauce. In this mix are issues which are there from time to time panic attacks, self harm, suicidal tendancies, low self esteem. Many of these have been looked at with counselors and therapists so I am not throwing away my experiences or their input rather am trying to blend it together as a whole to create a background flavour which has value.

 

What I do know is that I have had to work hard at this meal in creating something rational and balanced. I am happy in my life with my 'personal diagnosis' which is made up of all these factors. What I have decided is that it tastes reasonable to me and as such I can live with it. I am also pretty tired having got this far and so I have no intention to go around collecting opinions again its too exhausting and confusing. My brown envelope of medical notes is put away and has been sellotaped up, hopeully I will never need to open it again. My GP is there for anything other than my mental health issues and as a result my realistic expectations on him mean I had the confidence to see him when I had a recent physical problem which led to tests for prostrate cancer which thankfully came back clear. A few years ago I would have ignored such things as the relationship had broken down. When he asks about AS I say it can't be fixed and I am working on managing it and am ok most of the time, he knows to leave it.

 

Tally as we get older I hope for many things start to drop into place, I hope that happens for you. I think you have decided what kind of feels right and that is Asperger's I would trust your gut reaction on this you are your own special expert. Even when we get a diagnosis we have to decide whether to accept it or not so gut reactions are key. I think the next thing is to build past experiences around this idea and see how as a concept it plays out in your life. I can remeber post AS diagnosis and reading about 'face blindeness' and thinking I suffer from that and had never made any conections, for a short time it was a negative but then it went into my sauce and helped to support the meal. As a result it makes me more understanding of the person I am and brings an interesting element into my life to try and manage. What I am saying is once we have a strong and positive concept of ourselves other things can be fitted in over time as they come up. Being positive is really important, and it can be so hard at times but we owe it to ourselves to try. I can see in you post the positive slant you are putting on this by pulling other peoples perceptions into your own rational this is a good thing they are not here to ask so interperate them in a way which works for you as long as this supports a positive notion of yourself. My advice with statements and evidence which does not fit with a positive notion be neautral on it and leave it to one side, it is easy to focus too much in trying to make sense of it, far easier to push it to one side. In my experience often these experts do not really know us so why should I take everything they say to heart they are only trying to do thier job. I had a consultant like this, my piece of fish, I dealt with it by leaving the fish there while I looked at the possiblities of the meat. I didn't say it was a bad bit of fish rather I saw more in a good bit of meat. What has happened is that in the time I have created my dish it has started to go off a bit and I have realised writting this post that its now ok to throw it away. I do not need to go back to the provider and tell him this rather let him carry on doing what he does, the next person along might be a fish lover and his diagnosis is right for them.

 

Just a few thoughts not sure if they are relevant for anyone else out there but they helped me work out where I am up to in my own mind and thanks for reading if you got this far,

 

best wishes Tally, take care you have had a hard few weeks nuture yourself through this time.

[darkshine]

I just feel like I've spent a lot of effort trying to explain how bad things are, and just get told I'm wrong about my own experiences. It's nice to know that I was listened to and my difficulties acknowledged in at least this case, even if I didn't realise it at the time.

I keep toying with the idea of getting copies of my medical notes - I wonder why I spent so long in the MH service with nobody listening to me, and nobody caring what my experiences are. Years of trying to explain basically and its taken me to learn the ability to talk and describe things (this has taken a little over 10 years) and even now I struggle to explain things.

 

Still, its good when someone comes long who listens and seems to understand - even if it takes hindsight to realise it

[LancsLad]

Darkshine in respect to getting copies of medical notes.

 

On balance I wish I had never seen mine. Whilst there are some notes in there which are Ok for me to read, on the whole they are very cold and calculating pieces of paper, this is the nature of things. I would ask yourself what would be the positive benefits for you that might get out of seeing your notes and what might be the potential negative impacts. It is then a case of weighing up these two possibilities in reaching a decision on the matter. What I will say you have no way of filtering out only the good stuff , it will come as a package. As I said in my post once I started to read them a big message inside my head said stop there this is doing yourself a lot of harm, but I couldn't stop reading, I doubt many people could.

 

Be carefull, what you don't know cant hurt you. If on the other hand you think finding something out in your notes might lead to getting someone to change something for you then it might be worth it. What I am advising is there has to in my experience be a reason to do so beyond mere curiosity. Tally has a reasonable experience here and you must bear in mind the context for her. Her doctor filtered out the stuff which they felt would be supportive for a DSA application. This obviously has to indicate Tally has needs and that is for many a difficult thing to read. In contrast Darkshine what would be the context for asking for your notes. I suspect it might be a bit different from Tally's and more of a case I have a right to see my notes if I wish, and your doctor would be obliged to hand over all of your records, there would be not filtering of information on their part. They could say i am not sure about you seeing some stuff but i doubt they could or would. Even if they did and this was in your interests you might feel what are they trying to hide.

 

Just a few thoughts but the decision is obviously yours to make.

[darkshine]

Thanks LancsLad - hearing your experience helps too, I'm not bothered about my doctors notes - I moved away from home when I was 18 and my notes where I live now only go from 18 onwards (had a psychiatrist go through them on screen with me a few months back) there's not a lot there since I avoided the GP here like the plague.

 

What I'm interested in is the massive folder that the mental health service has on me.

 

I'm studying psychology so that's part of my interest, but the bigger part is that I want to see why next to nothing has been done over the last 12 years, I want to know why nobody listened and what they said in the notes, and to see if this tallies up with what I know I've said throughout that time. (I have extensive personal notes)

 

I understand the risks of this (hence the reason why I've never asked for a copy) but in terms of understanding how the system here is dealing with people - using myself as an example - I feel a copy would be valuable and as such this is another big part of why I'd like to see them, BUT, to do this I would have to feel able to put my own stuff to one side which is not an easy thing to do.

 

Having said all that - I do not feel that I am able to do that at this time - I think it would bother me, and it would make me angry, because I already know that they did nothing for a large part of the time because I lived through it. It would make me angry to see myself as I was at 20 for example and know that they didn't do a damn thing to help, to read throwaway comments on that time would probably make me angrier.

[trekster]

i got quite annoyed at my notes because they were so inaccurate. However my doctor did permit me to change my notes

to say 'this is more than ME' to get rid of the implied hypochondria.

[Tally]

I don't think I'd ever request to see my notes as it would be too upsetting. They are allowed to deny you access to medical records if they believe it would be harmful for you to see them, which I expect would be the response if I made such a request. I didn't actually request to see any notes, I asked my GP to write a letter addressed to the DSA people to confirm my diagnoses of depression, anxiety and ME. He chose to give me these records instead and allow me to see them. But maybe my records aren't as bad as what I think anyway, since what I was told verbally is very different to what has been recorded on paper. Either way, I'm not going to chance it!

[darkshine]

i got quite annoyed at my notes because they were so inaccurate. However my doctor did permit me to change my notes

to say 'this is more than ME' to get rid of the implied hypochondria.

Yes, this could be a factor (inaccuracy) I feel it would be the case for some of mine too.

 

@Tally - what you say makes sense too - I know that I can have a copy of my MH notes any time I want - I'd have to pay though (its like 5 or 10 pence per page) and this is the reason I'd started thinking about this again (I've thought of it often over the years but obviously being in the system still, the notes get more, and as such the cost would be higher)

 

I wonder what I would do if there are inaccuracies, or if the way they are written would bother me - cuz when we talk to doctors and such, we feel one thing/are coming from one point of view, while they may be viewing us in a completely different way (if that makes sense?).

 

 

I think I'll put it off for another few months and consider it again - its certainly useful hearing what other's felt when they saw theirs!!! (or part of them)

[trekster]

ive been told that to view the notes in the surgery costs nothing but to have copies of them would be 10p per sheet.

[LancsLad]

I think Darkshine makes a massive point here and that is we are the people who have had to live through this stuff. I think a big issue is that a lot of stuff in medical notes within the remit of mental health describes life experiences and they are simply not as simple to describe in blunt terms such as a 'compound fracture to the lower fibula', but my consultants tend to write in such cold terms. When i read them it was a case of "###### mate, have you got any idea what that was like to go through". The point that has been made about different interpretations was also true in that I thought from meetings my consultant felt I was functioning quite well and making progress, the notes were quite different and in hindsight I think he was trying to keep me going whilst the notes highlight real concerns about a lack of progress. All felt a bit two faced to be honest.

 

I can easily see that looking through stuff for many people would simply generate anger and I am not too sure if that is the case whether it is a productive exercise. I believe Tally is right that in some cases they can withold information from you for your own protection. When I recieved all my notes by accident and made a point I did not particullary welcome them I think I was told I was fully entitled to them as long as I was not under a section order from memory, note too sure on this because I was not in the best state of mind at the time.

[darkshine]

I can easily see that looking through stuff for many people would simply generate anger and I am not too sure if that is the case whether it is a productive exercise. I believe Tally is right that in some cases they can withold information from you for your own protection. When I recieved all my notes by accident and made a point I did not particullary welcome them I think I was told I was fully entitled to them as long as I was not under a section order from memory, note too sure on this because I was not in the best state of mind at the time.

In all honesty, I can say right now, that when I finally get my notes copied

 

1. They will upset me

2. They will start my brain into hypermode (my term for my mind questioning and racing faster than supposedly possible)

3. They will make me question the "help" I have received

4. They will make me very very angry.

 

Does this mean I shouldn't get them copied?

 

No, I don't think its does because my reasons are far more important reasons than just looking for a sneak peek

 

I think Darkshine makes a massive point here and that is we are the people who have had to live through this stuff. I think a big issue is that a lot of stuff in medical notes within the remit of mental health describes life experiences and they are simply not as simple to describe in blunt terms such as a 'compound fracture to the lower fibula', but my consultants tend to write in such cold terms. When i read them it was a case of "###### mate, have you got any idea what that was like to go through". The point that has been made about different interpretations was also true in that I thought from meetings my consultant felt I was functioning quite well and making progress, the notes were quite different and in hindsight I think he was trying to keep me going whilst the notes highlight real concerns about a lack of progress. All felt a bit two faced to be honest.

And this brings me on to my reasons for really wanting them.

 

As I said earlier I'm interested in psychology - this is only an aspect to this - but it is an aspect.

 

More importantly, when I was able to go out and do more (this is a few years back) I used to be involved with 3 or 4 groups - they were different voluntary groups but all had the common interest of how people can access services, be listened to, and helped.

 

Being a "service user" (god I hate that term and am only using it sarcastically) I have from the beginning wondered how they treat people and help them manage their difficulties. Later, after the groups I joined I wondered how effective the services are at helping people with mental health problems have a better and more fulfilling life by gaining skills and things like that.

 

The thing is that as LancLad has said, the discrepancy between the contents of medical notes (especially mental health) and the actual lived experience of the person going through times of crisis or depression or whatever, is massive. And this is another key thing I hope to point out with mine - as I said, I haven't seen them, but I'm pretty damn sure that there will be that discrepancy, and lets face it, it wouldn't do professionals any harm to stop treating people as biological objects (as in with pills for everything most of the time) and to start treating people as living, experiencing beings who need help. Our experiences should be validated because to people in those times, those experiences feel very very real, they are not things to be ignored, they shouldn't be brushed aside.

 

From my experience of the system, and from hearing other people complain about their experience, I think that people really want to be listened to and understood - and they value that highly - then they want to be enabled not belittled.... I have a pretty good idea that my mental health notes - when compared with some of my own personal notes over time, will not match up - I think they will tell a totally different story.

 

I hope to use my own records as an example at not only showing where the services have short falls, but also to try to suggest ways that things could have been dealt with more effectively.

 

In short I want to find a way to change the system somehow - my biggest problem in even trying to achieve this is myself and the problems I have - but still, I do hope that maybe I'll get enough knowledge that someone will listen one day.

Edited March 19, 2012 by darkshine

[trekster]

darkshine ive also got a case study for my course.

 

A few things based on your above post, 1st i guess as the term client could be used with prostitutes and their customers that's why service user came about? My care manager and other support team tend to use the term client. i dont have a problem with it and find service user long winded.

 

2nd according to my health services course patients tend to be more satisfied with their medical appointments when they get a prescription, NTs can be weird in that aspect. Some of my problems i prefer to be treated medically others i prefer the talk therapies or just some understanding.

[Tally]

Many businesses use the word "client" without being confused with prostitutes, I don't think this is the reason the NHS has stopped using it. It's probably more to do with people thinking that customers have rights, whereas service users are not paying customers and theNHS would like us to be grateful for whatever we get.

[Sally44]

Your original question is a hard one.

 

When you think you have something wrong, or are a parent to a child that you think has something wrong, you tend to listen to and believe and trust the professionals that you see.

 

But remember that many of these disorders are not an exact science.

 

And professionals do have differences of opinion, even to the extent of believing that certain conditions don't exist, even when everyone else thinks they do ie. CFS and Fibromyalgia for example.

 

And from reading posts by other parents, and hearing some awful stories of them being labelled as "attention seeking" or even "munchausen" because they 'felt' there was something wrong with their childs development and were fobbed off time and time again.

 

I think that some people are too naive, believing, unsure, lack confidence etc. And that trait can cause them more problems eg. a mother who is more confident or sure of herself may see her GP and ask for her child to be referred for assessments because they believe they may be on the autistic spectrum. The GP may grant, stall, reassure or refuse that request. A mother that is more sure will probably repeat the request followed with reasons why. A more unsure parent might go away and go back to the GP again 6 months later or never.

 

The same can apply to parents being offered "parenting skills courses". Some parents may accept that offer and then be surprised to find that file notes state that they are not confident in their parenting skills! Other parents may ask the relevance of them, or even refuse if they other kids that are okay.

 

Don't know if you are getting what I am trying to explain???

 

But if you have a diagnosis, you have a diagnosis. And it is rather rude for another professional [who is not a specialist in that field] to suggest that the diagnosis maybe incorrect?

 

And it is also so much harder to get a second or third diagnosis on top of the primary one. CFS maybe confused with lacking motivation due to ASD etc etc.

 

And as far as reading people incorrectly, I think the best thing to do is to politely say what you think they are telling you. Eg. are you saying that you do not think I have CFS? Then there can be no doubt.

 

You are not the only person to leave an appointment feeling like you didn't ask the questions you wanted to ask and don't understand the answers or explanations you were given.

 

Yes we can misinterpret what people are saying to us. But most of the time we get it right. And if you are unsure, or even if you are not unsure - but want to check anyway, then do a kind of summing up sentence such as "so you are saying that I do have CFS, but not to a severe degree - and will you be including that in your letter to my GP."

 

With mental health issues [and we have enough of them in our family], it can easily get to a stage where paranoia sets in. Try to remember that in general most people, most of the time, are being nice and trying to be helpful and do a good job. Having that mindset in itself can help with social interaction because if you are parnoid, or thinking that people are working against you that shows in your voice tone and gestures and could affect how the professional is dealing with you or your concerns.

[darkshine]

darkshine ive also got a case study for my course.

 

A few things based on your above post, 1st i guess as the term client could be used with prostitutes and their customers that's why service user came about? My care manager and other support team tend to use the term client. i dont have a problem with it and find service user long winded.

 

2nd according to my health services course patients tend to be more satisfied with their medical appointments when they get a prescription, NTs can be weird in that aspect. Some of my problems i prefer to be treated medically others i prefer the talk therapies or just some understanding.

Hi Trekster,

 

I'm inclined to agree with Tally on the client v service user explanation - what she said makes sense about sort of being happy for whatever we get.

 

As for your second point - I can see that if a person goes to a doctor they may have greater satisfaction when they leave with a prescription - but does this count the same for people in the mental health services too?

 

My current course has little to do with this (in some respects) but there are relevant aspects, and my previous courses have covered this kind of topic only very loosely.

 

My main experience is my own, from being a patient/client/service user for the last 10-12 years, and during that time I've heard about plenty of other people's views on the services - and they have all moaned about the medications at some point.

 

Having said that, I understand why some problems may be better suited to talking therapies and some may require meds.

 

The main point to my posting is that I'm looking for change - not just for me, but for the people in my area to get better access to services, to improve and increase services, for them to feel listened to and involved with their treatment and finally to increase public awareness of various conditions or disorders in order to reduce stigmatisation.

 

If you are doing a mental health course - what sorts of things does that say (from its content)? (curious to hear other things).

 

Best Wishes

 

Darkshine

Edited March 23, 2012 by darkshine

[LancsLad]

Think the idea Trekster raises about patients being more satisfied when they have a prescription is very interesting. I think GP know this and often they misread what our attentions are when we go to see them.

 

With my own GP in the past our relationship broke down because i rejected the medication regime I had been prescribed. To be fair i have been throught over half a dozen different regimes in 3 years so it wasn't as if something had a proven track record by his own admission. When it comes to talking therapies we both know waiting lists are long, finances limited and the service believes I have had a couple of go's at this sort of thing and it is someone else's turn now, in a way I can live with that. The really interesting thing for me is what Trekster raises at the end of the post as 'just some understanding'.

 

A lot of the time I feel I want to simply flag to my GP that I have been feeling pretty low for some time, or that I am currently having to deal with some big issues in my life. I am not saying I have problems I can not deal with and as such am not asking for an intervention, rather I might if things turn for the worse. This sort of non action on their part is something i feel the medical profession is not well equiped to deal with. I know when I was released from a secure psychiatric unit I had a care plan which lasted for a year or so. In that time I could have turned up on the doorstep of the unit and self admitied myself which was a real comfort. A lot of people on the unit were there through those means. When that plan expired as a result of not activating it we are left in a world where we are either well or ill with very little in between, in reality i do live most of my life in this grey area and it would be really comforting if the medical profession understood that.

 

Through my training I keep an online electronic diary every day which monitors lots of things. Every morining i get up weigh myself for hydration levels, take my resting pulse, but I also put in how I am feeling emotionally and how much sleep I have had and what was the quality like. I can plot all of these things as trends quite easily. I think having a similar thing to do online which was glanced at for a second each day in my GP's practice would go a long way to developing a starting point for creating a level of understanding which many of us feel is simply not there.

[darkshine]

Think the idea Trekster raises about patients being more satisfied when they have a prescription is very interesting. I think GP know this and often they misread what our attentions are when we go to see them.

 

With my own GP in the past our relationship broke down because i rejected the medication regime I had been prescribed. To be fair i have been throught over half a dozen different regimes in 3 years so it wasn't as if something had a proven track record by his own admission. When it comes to talking therapies we both know waiting lists are long, finances limited and the service believes I have had a couple of go's at this sort of thing and it is someone else's turn now, in a way I can live with that. The really interesting thing for me is what Trekster raises at the end of the post as 'just some understanding'.

 

A lot of the time I feel I want to simply flag to my GP that I have been feeling pretty low for some time, or that I am currently having to deal with some big issues in my life. I am not saying I have problems I can not deal with and as such am not asking for an intervention, rather I might if things turn for the worse. This sort of non action on their part is something i feel the medical profession is not well equiped to deal with. I know when I was released from a secure psychiatric unit I had a care plan which lasted for a year or so. In that time I could have turned up on the doorstep of the unit and self admitied myself which was a real comfort. A lot of people on the unit were there through those means. When that plan expired as a result of not activating it we are left in a world where we are either well or ill with very little in between, in reality i do live most of my life in this grey area and it would be really comforting if the medical profession understood that.

 

Through my training I keep an online electronic diary every day which monitors lots of things. Every morining i get up weigh myself for hydration levels, take my resting pulse, but I also put in how I am feeling emotionally and how much sleep I have had and what was the quality like. I can plot all of these things as trends quite easily. I think having a similar thing to do online which was glanced at for a second each day in my GP's practice would go a long way to developing a starting point for creating a level of understanding which many of us feel is simply not there.

And that describes in a nutshell why I stopped bothering with a GP over 6 years ago - it has been a shock to my system now that I have a new GP (old one retired) who wants more involvement - but doesn't speak when I'm there in the room - but send me letters every month or two asking about something I've done with the other side (mental health services).

 

In my opinion the whole mental health system needs overhauling in a lot of areas of the country/UK - and the effort required to do so would be so great initially that it won't happen any time soon, because I don't think the right people care about it - and from what I've seen its gonna take years, just plodding away at it - because the people who do care, just don't get listened to.

[trekster]

Many businesses use the word "client" without being confused with prostitutes, I don't think this is the reason the NHS has stopped using it. It's probably more to do with people thinking that customers have rights, whereas service users are not paying customers and theNHS would like us to be grateful for whatever we get.

 

Ah that makes sense thanks for clearing that up for me.

[trekster]

Lancslad, couldn't you alternatively keep a diary then flat it up with your GP when/if it becomes serious?

Hard to judge when the 'it needs a doctor' situation had occurred which is probably why the bowel cancer

campaign is highlighting you need to see a doctor 'now'.

 

Unfortunately the NHS being as stretched as it is, they prefer if you only see them when you really need an

intervention, however i have been told sometimes doctors counsel the patient.

[trekster]

Darkshine, the mental health budgets have been drastically cut and now other services are unable to take the

strain. If they dealt with causes of mental illness and secondary effects of mental illness effectively we wouldn't be

in this mess, but as you say the caring people dont get listened to.

 

Leaving in patient mental health care should be worked on as well, the 'taking responsibility' report said this back in

2001!

 

Lancslad would a complaint to PALS be any use to getting some care plan properly actioned?

[LancsLad]

To be honest guys on a personel level I am far more relaxed these days by having no engagement in the system than I have ever been. Not saying this is the answer for everyone far from it. I have my own care plan of sorts and have become very self aware. If I have an issue with the current situation or lack of support is that my partner has to take a lot of the strain, and I am forever gratefull that she does. I know that if things got really bad in my life she would be very direct with my GP's practice and insist that they do something as she has seen this happen before when I was refered into a psychiatric unit. In this respect I feel relatively safe in worse case scenarios and believe we a capable of self managing anything up to that point. Should it be this way? I don't think so, but would rather spend my energy pursuing other issues.

 

thanks for the comments, they are appreciated.

[trekster]

Can she get carers allowance to help you?

[LancsLad]

Trekster, thanks for the comment, I get the lowest level of disability allowance which I am happy that she spends on a bottle of wine each week which she has a glass of in front of her favorite American crime TV shows most evenings and getting out with her mates once a month for a girlies night out. I think we are happy with that.

 

Amazingly she feels this is a fair exchange with having to put up with me, still not fathomed that one out, but do not push too hard, know when I am on to a good thing.

 

At a serious level I think there is a question here of 'need'. There have been times when i have been more engaged in mental health services and to be honest I am not sure if I was in 'need' or was becoming 'needy'? I think there is a fine line to tread here and I am very carefull not to become reliant on a system and thus fall into the 'needy' bracket. I would rather battle on my own with my partners support through issues and only calll on services in times of real 'need'. If this frees up limited resources for others I am happy to play my part. I think the issue I was raising earlier in the post is that GP's often are there in times of extreme need but tend to view you as 'needy' at any other point along the way. I do not see it as such but would rather be engaged in saying yes I do have needs but am capable of managing them at present. That level of respect and dialouge to me is often not there in the system.

 

Hope this makes some sense.

[darkshine]

Darkshine, the mental health budgets have been drastically cut and now other services are unable to take the

strain. If they dealt with causes of mental illness and secondary effects of mental illness effectively we wouldn't be

in this mess, but as you say the caring people dont get listened to.

I just wish there was a solution - but while the people in power don't listen to the people struggling with these things everyday, not a lot is gonna happen.

 

Anyway, even if everyone got magically "fixed" - there wouldn't be jobs for us all anyway