The best drama/documentary I have watched in a very long time.
Deeply moving, inspirational, funny and so relevant on so many levels. The attitude and insight of the German doctor was remarkable - but his ideologies still remain somewhat remarkable today. Although rehab is widely available for such spinal patients today, the concept of "of course your arms will hurt if you don't use them" is not as integrated in practice to modern medicine as we may have thought. One of the things that stuck me was how much a 'breath of fresh air' the doctor seemed - he was exceptionally revolutionary at the time, but his ideas still seem fresh today - keeping patients mentally and physically stimulated, for example! Although in far better health that the boys of the ward, there is much for me and other people with long term health conditions about regaining our lives and practical approaches to doing so!
I can not wait for the Paralympics, and am sure I will find them truly inspirational, especially given the context of their origins.
Sunday, 19 August 2012
Tuesday, 14 August 2012
The role of the Pharmacy
There is much debate about the privatisation of healthcare services, but right under our noses is a really positive example of private companies complimenting the services of the NHS . . . Pharmacies!
They represent an excellent resource for patients - information, support, signposting etc. It was not until the Expert Patient Programme that I realised what services pharmacies can offer. They are an excellent advice centre for anything to do with medications and side effects - a great port of call before a GP. They also can do quick blood pressure checks. The very nature and location of then takes away the tedious nature of going to the GP surgery - it is in town, so just like any other errand I have to do, and they don't have long waiting times either! It doesn't feel like a medical appointment, which is very refreshing and helps maintain that normality people with LTC crave!
In the scope of self-management, staff are receiving a wealth of additional training and I hope that pharmacies will become well used hubs of self-management advice! I have certainly found them to be an invaluable additional weapon in my fight against my conditions!
They represent an excellent resource for patients - information, support, signposting etc. It was not until the Expert Patient Programme that I realised what services pharmacies can offer. They are an excellent advice centre for anything to do with medications and side effects - a great port of call before a GP. They also can do quick blood pressure checks. The very nature and location of then takes away the tedious nature of going to the GP surgery - it is in town, so just like any other errand I have to do, and they don't have long waiting times either! It doesn't feel like a medical appointment, which is very refreshing and helps maintain that normality people with LTC crave! In the scope of self-management, staff are receiving a wealth of additional training and I hope that pharmacies will become well used hubs of self-management advice! I have certainly found them to be an invaluable additional weapon in my fight against my conditions!
Monday, 13 August 2012
Health and Social Care
Within the public sector, health services and social services are both very large organisations. There exists a lot of overlap between the users of both services. That overlap is 'honoured' with the Health and Social Care Act, and the new cohorts of health and social care study students. But the names still suggest a divide between the two. What is the difference between healthcare and social care?
Healthcare needs to be provided by trained healthcare professionals and involves administering treatments and therapies. Conversely, social care involves the daily personal living activities such as getting dressed, washing, preparing food and general well being.
This presents a dichotomy for me - 'social' therapies such as counselling, relaxation, getting a job and improving my social life has had a greater impact on my physical medical conditions than any drug or medical treatment that my healthcare team have prescribed me!
My physical medical conditions can not be considered in isolation from ME - my social situation and the impact it has on that. So is the divide artificial? In many ways yes. There will be very few people under he care of social services who are not regular users of the healthcare service, and the healthcare service would probably be doing a better job at treating those propels if their social circumstances were taken into account. This means more than just ticking boxes on admission about employment status and housing type - it means assessing the impact of the illness of their life. For a pianist, loss of finger dexterity is a disaster whereas the prospect of a mastectomy for a model could be career ending.
I don't think the answer is just integration - I think the answer lies in getting healthcare workers and social care workers to fully understand the impact social situation has on health and visa versa. You can integrate the two services on a practical and organisational level, but if the staff do not understand well being and it's context then there is little hope.
Healthcare needs to be provided by trained healthcare professionals and involves administering treatments and therapies. Conversely, social care involves the daily personal living activities such as getting dressed, washing, preparing food and general well being.
This presents a dichotomy for me - 'social' therapies such as counselling, relaxation, getting a job and improving my social life has had a greater impact on my physical medical conditions than any drug or medical treatment that my healthcare team have prescribed me!
My physical medical conditions can not be considered in isolation from ME - my social situation and the impact it has on that. So is the divide artificial? In many ways yes. There will be very few people under he care of social services who are not regular users of the healthcare service, and the healthcare service would probably be doing a better job at treating those propels if their social circumstances were taken into account. This means more than just ticking boxes on admission about employment status and housing type - it means assessing the impact of the illness of their life. For a pianist, loss of finger dexterity is a disaster whereas the prospect of a mastectomy for a model could be career ending.
I don't think the answer is just integration - I think the answer lies in getting healthcare workers and social care workers to fully understand the impact social situation has on health and visa versa. You can integrate the two services on a practical and organisational level, but if the staff do not understand well being and it's context then there is little hope.
Saturday, 11 August 2012
When is my LTC just a good excuse?
This post comes after much soul searching when I did not complete an action plan I had set myself one day. I debated with friends what was the route of the problem as to why I did not complete it and we came to this conclusion:
Was I using my LTC as an excuse because I didn't really want to do my action plan? What is the difference between good self-management and being lazy?
With fatigue and this pacing myself being such big issues for me, I was being over-cautious but felt guilty and realised I might just be being lazy, using the need to pace myself as an excuse! What is the difference?!?!
This issue was very stimulating during our discussion, because laziness is what so many people who don't know our conditions can often assume about us. It is embarrassing to be considered lazy at the best of times, but that 'label' has added meaning for those of us living with long term conditions.
One of the points that was raised was that every normal person has lazy days and creates excuses . . . We are also allowed that luxury too and should not punish ourselves too much for it. We are only human. So what is the issue then? if we adopt laziness as a long term option to manage our conditions and can't bring ourselves back from it. A vicious circle awaits! Using our conditions as an excuse is difficult - some joke it is the silver lining to having to live with them, that they create a always available and valid excuse but that would damage the reputation of all of us if we were to really use them as such.
Continual experience of your own body and how it reacts can be a good guide to why you are not doing something. Making yourself think if this activity/task was shopping/seeing friends/something positive would I do it? If the answer is yes, then you are probably avoiding the task and not really self-managing! Importantly, we need to fill our days with tasks that are enjoyable, so we are less likely to avoid the task and then wrangle with ourselves worrying we are simply lazy!
Quite a conundrum and something very difficult to discuss with complete honesty!
Was I using my LTC as an excuse because I didn't really want to do my action plan? What is the difference between good self-management and being lazy?
With fatigue and this pacing myself being such big issues for me, I was being over-cautious but felt guilty and realised I might just be being lazy, using the need to pace myself as an excuse! What is the difference?!?!
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One of the points that was raised was that every normal person has lazy days and creates excuses . . . We are also allowed that luxury too and should not punish ourselves too much for it. We are only human. So what is the issue then? if we adopt laziness as a long term option to manage our conditions and can't bring ourselves back from it. A vicious circle awaits! Using our conditions as an excuse is difficult - some joke it is the silver lining to having to live with them, that they create a always available and valid excuse but that would damage the reputation of all of us if we were to really use them as such.
Continual experience of your own body and how it reacts can be a good guide to why you are not doing something. Making yourself think if this activity/task was shopping/seeing friends/something positive would I do it? If the answer is yes, then you are probably avoiding the task and not really self-managing! Importantly, we need to fill our days with tasks that are enjoyable, so we are less likely to avoid the task and then wrangle with ourselves worrying we are simply lazy!
Quite a conundrum and something very difficult to discuss with complete honesty!
Food for Thought
I enjoyed a very interesting, stimulating and thought provoking discussion with a friend about the benefits of healthy eating . . . What are the real benefits of it - the physical nutritional value or the psychological virtuous feeling you get know you are doing something good for my body?!
They can both be very powerful effects! I will leave it the scientists and research papers to prove to you the benefits of a good diet - they have a wealth of data.
For me, food is one of the only things that I can actually have control over in terms of my health, so I try to optimise my diet giving my body what it needs in an attempt to heal myself in the only way I can. I may sound like a control freak, but I think many other people can empathise with me on this one. I feel sludgy when I eat junk - caused by physical or psychological reactions I don't know. Perhaps my body has acclimatised to the healthy things I give it? There is no doubt, I hope, that this healthy eating will have delayed the onset of further conditions and illnesses, but the jury is still out on the benefit it has had for what I live with now. It has not cured me (I know it wont!), and I still feel grotty most says, but as I alluded to in another post (What is the benefit?), I may be feeling a lot more grotty if I wasn't eating what I do...
But if I can help myself psychologically now and protect myself in the future, that seems a pretty good balance for me right now! It is an added bonus that I find the healthy stuff really yummy as well. I guess this a real case of food for (positive) thought!
For me, food is one of the only things that I can actually have control over in terms of my health, so I try to optimise my diet giving my body what it needs in an attempt to heal myself in the only way I can. I may sound like a control freak, but I think many other people can empathise with me on this one. I feel sludgy when I eat junk - caused by physical or psychological reactions I don't know. Perhaps my body has acclimatised to the healthy things I give it? There is no doubt, I hope, that this healthy eating will have delayed the onset of further conditions and illnesses, but the jury is still out on the benefit it has had for what I live with now. It has not cured me (I know it wont!), and I still feel grotty most says, but as I alluded to in another post (What is the benefit?), I may be feeling a lot more grotty if I wasn't eating what I do...
But if I can help myself psychologically now and protect myself in the future, that seems a pretty good balance for me right now! It is an added bonus that I find the healthy stuff really yummy as well. I guess this a real case of food for (positive) thought!
What is the benefit?
I have just tried a new medication and have not noticed any benefit. I have been doing Pilates and Alexander Technique for months on top of efforts to fit in physical activity each day. I eat well, and do relaxation techniques to look after myself mentally. I get adequate sleep and don't drink. By all accounts I should be feeling on top of the world! But have I actually noticed the benefits of all of these activities? Sort of! But what is the kind of benefit I am looking for?
Sometimes the benefits can be hard to see because it is the prevention of further decline/symptoms and not necessarily a direct positive change in symptoms. That usually means these activities are really important to do, but sadly not seeing direct positive benefits can make it difficult to find motivation for doing them, and sustaining them.
I am beginning to lean that such is life with a long term condition - there will be hoops like these activities to jump through, where there seems no reason. I think its about trying to associate positive emotions/rewards with these activities - for example the psychological benefits of the healthy eating I mentioned in my last post. I find action plans really helpful too (I am very much from the Expert Patient Programme school of thought on self-management in this case), but I am not pretending there is a simple solution out there. Although I must say, fear of what will happen if I don't keep up all these healthy habits is a pretty good motivator!
Sometimes the benefits can be hard to see because it is the prevention of further decline/symptoms and not necessarily a direct positive change in symptoms. That usually means these activities are really important to do, but sadly not seeing direct positive benefits can make it difficult to find motivation for doing them, and sustaining them.
I am beginning to lean that such is life with a long term condition - there will be hoops like these activities to jump through, where there seems no reason. I think its about trying to associate positive emotions/rewards with these activities - for example the psychological benefits of the healthy eating I mentioned in my last post. I find action plans really helpful too (I am very much from the Expert Patient Programme school of thought on self-management in this case), but I am not pretending there is a simple solution out there. Although I must say, fear of what will happen if I don't keep up all these healthy habits is a pretty good motivator!
Social vs Medical Models of Disability
This was something I had not considered before a thought-provoking training course - the definitions of impairment and disability.
Impairments are things like hearing and walking difficulties and pain. Disability, in the social model, is the loss of opportunity created by society because of barriers. In the medical model, disability is an illness that needs treatment.
That model, in which the healthcare professionals are trained in, disempowers patients. But it is more that just the emotions of patients at stake . . . With the attitude of trying to treat these conditions in the traditional sense, many healthcare professionals miss the fact that they can not be treated with drugs and operations. Of course, it is worth trying initially but alternative treatments ahold be considered which are not so much treatments but coping and management strategies for patients. Examples include counselling, CBT, relaxation techniques and other emotional tools.
Changing the minds of patients and healthcare professionals to this social model is the real challenge!
Impairments are things like hearing and walking difficulties and pain. Disability, in the social model, is the loss of opportunity created by society because of barriers. In the medical model, disability is an illness that needs treatment.
That model, in which the healthcare professionals are trained in, disempowers patients. But it is more that just the emotions of patients at stake . . . With the attitude of trying to treat these conditions in the traditional sense, many healthcare professionals miss the fact that they can not be treated with drugs and operations. Of course, it is worth trying initially but alternative treatments ahold be considered which are not so much treatments but coping and management strategies for patients. Examples include counselling, CBT, relaxation techniques and other emotional tools.
Changing the minds of patients and healthcare professionals to this social model is the real challenge!
Friday, 10 August 2012
Power of the Brain in CFS
The BBC has recently reported on a study published in PLoS ONE that suggests exercise and behavioural therapies are the most effective and successful ways to treat Chronic Fatigue Syndrome (the full article is here). Having completed the Expert Patient Programme, this does not surprise me, but it does please me that scientific journals are covering such reports.
Although the focus of the BBC report is on cost savings, I think the personal benefits can also be significant. Professor Michael Sharpe from Oxford University sums up what I hope will be the impact of this study: "this new evidence should encourage health service commissioners to provide these treatments to all those patients who need them."
Interestingly, this study has been criticised by patient groups who prefer "pacing therapies". I am not sure how 'pacing' counts as a therapy, as from my experience it is just limiting everything you do. I have certainly done it, but find the mental consequences very difficult. Exercise and behavioural therapies are a much more positive and proactive way of managing these conditions. If exercise and cognitive therapies work, that by no means makes the illness all in the mind. Getting over that hurdle could open many more people to proactive positive self-management that means they can miss out on less in life!
Although the focus of the BBC report is on cost savings, I think the personal benefits can also be significant. Professor Michael Sharpe from Oxford University sums up what I hope will be the impact of this study: "this new evidence should encourage health service commissioners to provide these treatments to all those patients who need them."
Interestingly, this study has been criticised by patient groups who prefer "pacing therapies". I am not sure how 'pacing' counts as a therapy, as from my experience it is just limiting everything you do. I have certainly done it, but find the mental consequences very difficult. Exercise and behavioural therapies are a much more positive and proactive way of managing these conditions. If exercise and cognitive therapies work, that by no means makes the illness all in the mind. Getting over that hurdle could open many more people to proactive positive self-management that means they can miss out on less in life!
Tuesday, 7 August 2012
A Balanced Argument?
Do rights depend on responsibilities? Is the NHS really that bad? Do we really want a healthcare partnership between ourselves as patients and NHS staff?
I may be unpopular in saying so but I strongly believe that campaigning in healthcare could become much more effective if the issues at stake are presented in a balanced way with perspective, rational and sensitivity.
Daily Mail headlines sell papers but don't get doctors, nurses and other NHS staff on board. They shock the public and lodge the cause in the nations mind, but just foster defensiveness among staff. For change to really happen, both sides of the "team" need to be onboard and to use the phrase "ready, willing and able".
Demanding change and expecting that to be achieved entirely through the efforts of one party of the partnership is not only unfair but illogical and ineffective. The results will not be lasting or embraced.
As an organisation the NHS is impressive. It delivers an excellent service to the vast majority of patients it serves. As much as we feel entitles to expectations of the NHS, the NHS can expect things of us. Acknowledging these responsibilities that cement a successful partnership is fundamental.
The work of charities is amazing, and very much a necessity for millions of people across the country but they can achieve better results for their members if they present a balanced argument, showcase good work and deliver their messages in such a way as not to isolate and loose the vital support of the staff they are trying to influence.
I may be unpopular in saying so but I strongly believe that campaigning in healthcare could become much more effective if the issues at stake are presented in a balanced way with perspective, rational and sensitivity.
Daily Mail headlines sell papers but don't get doctors, nurses and other NHS staff on board. They shock the public and lodge the cause in the nations mind, but just foster defensiveness among staff. For change to really happen, both sides of the "team" need to be onboard and to use the phrase "ready, willing and able".
Demanding change and expecting that to be achieved entirely through the efforts of one party of the partnership is not only unfair but illogical and ineffective. The results will not be lasting or embraced.
As an organisation the NHS is impressive. It delivers an excellent service to the vast majority of patients it serves. As much as we feel entitles to expectations of the NHS, the NHS can expect things of us. Acknowledging these responsibilities that cement a successful partnership is fundamental.
The work of charities is amazing, and very much a necessity for millions of people across the country but they can achieve better results for their members if they present a balanced argument, showcase good work and deliver their messages in such a way as not to isolate and loose the vital support of the staff they are trying to influence.
Is there more to life than being happy
An article from The Times was mentioned in The Week, debating the value of just being happy. Being happy is obviously good and worthwhile for society as a whole, but the author Philip Collins adds to argument the benefit for society, as a whole, of a few unhappy people. As examples he uses musicians and artists, but also comments on campaigners and carers. Although as individuals they may not be very very happy, they have "devoted themselves to causes that defy their own well being". If there is more to life than trying to be happy (which I believe is important, but only half the battle) then what is it????
Using the cases of the carers and campaigners, fulfilment must come into it, as well an contributing to something greater. Society should be very grateful to those people who help the rest of us seek happiness.
This relentless focus on happiness can make one feel very sad - turning unhappiness into a positive is something I strive to achieve having been handed a fair chunk of unhappiness through illness.
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