The Department of Health has just launched a Rare Diseases Consultation. From my learning's recently the care pathways seem to be very well mapped out for the big diseases - COPD, CHF, Cancer, Diabetes and Asthma - with specialist clinics and specialist nurses. These are services that I personally feel I have not has access to (yet!), so would welcome the recommendation! The Rare Disease Consultation recommends that the care of patients with rare diseases should be better co-ordinated.
With it being impossible for clinicians to be experts in every disease, some care provided may have a short-term view, looking at the relapse without taking into account the wider and long-term picture of the patient. Obviously funds have to be used effectively, and that means often it goes towards common conditions. Neither common or rare conditions should be treated at the expense of the others!
Wednesday, 29 February 2012
Tuesday, 28 February 2012
Mental Health Foundation
The Mental Health Foundation focus part of their policy work on physical manifestations of poor mental health and mental manifestations of poor physical health. This page details their work. They call for the routine assessment of the psychological needs of patients suffering from chronic heart disease and other serious physical conditions. Interestingly, they are call for a reduction in the inappropriate use of primary and acute hospital services by people with medically unexplained sympoms (MUS) by referrals to evidence-based psychological treatments. That should not be interpretted as the medical profession just giving up on patients and thinking "its all in their mind" (as I probably would have a few years ago!) - it shows a real forward thinking attitude. If a treatment can not be found, the condition will generate stress and depression which will in turn make the condition worse. Treating the psychological aspects of the condition is as close as it may be possible to get to treating the condition.
Another interesting fact on that page is this:
11% of adult healthcare costs in the UK are attributable to physical symptoms caused or exacerbated by mental health problems.
Another interesting fact on that page is this:
11% of adult healthcare costs in the UK are attributable to physical symptoms caused or exacerbated by mental health problems.
Science of Depression, Stress and Disease
Radio 4 & Claudia Hammond discuss some fantastic health topics! This one (first broadcast in 2008, but still enormously relevant!) looks at the science and molecular reactions to stress and how that can cause physical disease. The mind-body connection is very well documented, and there is a wealth of anecdotal evidence from personal experiences about the effect of depression and stress on physical health. I fully accept it, and believe in it. It is so fascinating (staying true to my science background!) to hear about the science behind it, but more importantly, as Claudia and her interviewees suggest, this research can give scientific clout to these ideas . . . and all the things that then follow (funding, mainstream acceptance, integration into conventional medical practice and investment in treatment!)
Listen to the program here!
Listen to the program here!
Telehealth in Dorset
Yesterday I attended a presentation on the launch of a Telehealth scheme across Dorset, Poole and Bournemouth. With speakers from the NHS commissioning staff, commerical provider (Telehealth Solutions) and a GP who has piloted the scheme, it proved to be a fascinating introduction into this new self-management tool for patients with chronic diseases. Although the scheme currently includes COPD and CHF, the equipment and 'pods' can be used for mental disorders and to log the titration of medications for almost any conditions. The morning did highlight to me the importance and invaluable nature of specilaist nurses in managing these long term conditions. On the whole, these telehealth systems can encourage piece of mind for the users - the value of that should not be underestimated. I was also enourmously impressed by the care-pathway and involvement of nurses, that made it very clinically useful and accurate as well as the sheer technological aspects too!
Pilates have twigged it!
Yesterday I had a class with my Pilates teacher - we got talking about my career ideas (as I tend to do with everyone at the moment!). She had been on a 4 day course about lower back pain and the role that Pilates can play in helping these patients. One whole day out of the four - i.e. 25% of their time - was entirely devoted to being aware, understanding and discussing the psychological, personal and socio-economic effects of such a painful and chronic condition.
How encouraging to hear that some professionals (although Pilates teachers are very holistic to start off with!) are giving due weight to these hidden aspects of long-term illness.
How encouraging to hear that some professionals (although Pilates teachers are very holistic to start off with!) are giving due weight to these hidden aspects of long-term illness.
Sunday, 26 February 2012
Radio 4 HealthCheck: Web information
Again another fascinating Radio 4 program - HealthCheck on 1st February talked about work done by Ellen Henderson at Bath University on the availability of health information online. They looked at the quality, safety and accuracy of information accessed by people online. It highlighted the problems that forums can cause with providing information not medically approved. From experience, forums tend to be very helpful about very specific day-to-day questions, such as which compression stockings are best. Many forum members are active because their condition has such an adverse effect on their life - they need (quite rightly!) that outlet for their feelings and experiences. As a new patient, that can be quite detrimental. . .
The Research by Ellen Henderson looked at the level of literacy needed for people to access accurate and reliable medical information on the web - they found that a reading level associated with a degree-level was needed. The abstract can be read here. That means the majority of patients can't access the right information online. Mis-information is very damaging, mentally and potentially physically too. It is all very well creating all these resources, but their target audience need to be able to access them!
The Research by Ellen Henderson looked at the level of literacy needed for people to access accurate and reliable medical information on the web - they found that a reading level associated with a degree-level was needed. The abstract can be read here. That means the majority of patients can't access the right information online. Mis-information is very damaging, mentally and potentially physically too. It is all very well creating all these resources, but their target audience need to be able to access them!
(listen to the whole program here)
Patients know best
On 14th February, Radio 4 Med Matters program discussed a really interesting topic . . . patient medical information and its dissemination and use. Listen to the program here.
Describing an all-too common experience of difficulties in receiving care in A&E and from non-specialists, a possible solution was raised. The web-based patient information portal, Patients Know Best. An NHS system, Summary Care Records, are based on a similar idea - doctors in emergencies/out-of-hours clinics need to know important medical information about patients. This is of particular importance in two patient groups discussed on the program; complex paediatric cases which are under care of GOSH clinicians, and elderly patients with dementia. Some reports show this information is used in over 1 in 5 consultations by out-of-hours GPs.
The Patients Know Best system can empower patients - giving them control of the processes and treatments affecting them. This could be enormously valuable for patients with long-term conditions (the very people it was designed to help!), but its success depends on the participation of the clinicians involved in the care!
Describing an all-too common experience of difficulties in receiving care in A&E and from non-specialists, a possible solution was raised. The web-based patient information portal, Patients Know Best. An NHS system, Summary Care Records, are based on a similar idea - doctors in emergencies/out-of-hours clinics need to know important medical information about patients. This is of particular importance in two patient groups discussed on the program; complex paediatric cases which are under care of GOSH clinicians, and elderly patients with dementia. Some reports show this information is used in over 1 in 5 consultations by out-of-hours GPs.
The Patients Know Best system can empower patients - giving them control of the processes and treatments affecting them. This could be enormously valuable for patients with long-term conditions (the very people it was designed to help!), but its success depends on the participation of the clinicians involved in the care!
Clinical Apathy
The SDBTT has supported some interesting research at Cambridge University looking into Clinical Apathy in patients who have had brain tumours.It was presented at the BNOS Conference in July 2011. It is really interesting because it takes into account the holistic health of the patient long after the brain tumour is treated. In a very holistic sense, this suggested the 'patient' hasn't been treated, since they are still suffering?! Obviously diseases such as brain tumour do need serious treatments, but that should not rule out the inclusion of psychological therapies to aid additional health matters that may result from the tumour.
PREVALENCE, PREDICTORS AND ASSOCIATIONS OF APATHY IN ADULT SURVIVORS OF AN EARLY CHILDHOOD POSTERIOR FOSSA BRAIN TUMOUR
Cliodhna Carroll, Peter Watson, Mike Hawkins, Helen Spoudeas, David Walker, Tony Holland and Howard Ring
PREVALENCE, PREDICTORS AND ASSOCIATIONS OF APATHY IN ADULT SURVIVORS OF AN EARLY CHILDHOOD POSTERIOR FOSSA BRAIN TUMOUR
Cliodhna Carroll, Peter Watson, Mike Hawkins, Helen Spoudeas, David Walker, Tony Holland and Howard Ring
Author Affiliation: University of Cambridge
INTRODUCTION: Apathy is a disorder of diminished motivation defined as a deficiency in behavioural, emotional and cognitive components of goal-directed behaviour. It occurs in several neurological pathologies and is associated with pervasive and disadvantageous effects on daily life. In this study we examined prevalence, predictors and associations of apathy in adult survivors of a childhood posterior fossa tumour. METHODS: 118 adult survivors of early childhood (diagnosed before 5 years of age) posterior fossa tumours, and 62 of their siblings, were assessed an average of 32 years after initial tumour treatment, using the Weschler Abbreviated Scale of Intelligence, the Marin apathy evaluation scale and the Composite International Diagnostic Interview.
RESULTS: Apathy scores reached or exceeded clinical cut-off in 35% of survivors compared to 18% of the comparison group. In the survivors this was associated with decreased employment, decreased income and lower self-ratings of physical and mental health. Apathy scores at or above cut-off were associated with lower verbal IQ scores and with a current or previous psychiatric diagnosis, but not with age at tumour treatment (all were < 5 years), duration of follow-up, history of radiotherapy or tumour type (astrocytoma or medulloblastoma). Clinically significant apathy in the survivors was not associated with a diagnosis of depression or with performance IQ measures.
CONCLUSIONS: Clinically significant apathy occurs relatively often in adult survivors of childhood brain tumours and is associated with impaired social functioning and increased psychopathology. Further research should determine whether any tumour or treatment-related variables increase risk of apathy.
Biotechnology Industry have opened their eyes to Mental Illness
European Biotechnology News (EBN) is a Europe-wide publication that focuses on trends, research and deals in the area of biotechnology. For such a commercial publication, I was very surprised to read this fascinating article on page 5 back in November . . .Mental Health: Suffering that makes few headlines.
It reports on the findings of a three year study (done by ECNP and EBC) - 40% of the population of the EU (165 million) suffer from one of 100 clinically-defined mental health conditions annually. They found that 27% of DALYs (disability-adjusted life years) are lost due to neurological and psychological conditions - making it more serious than either cancer or heart disease.
I think that is a really relevant statistic to use when thinking about mental health - it doesn't kill people (directly!) but causes enormous levels of angst and unhappiness which can be hidden in their nature and therefore don't attract the same attention as the big killers. It is also very encouraging to see this being reported in such a publication too!
It reports on the findings of a three year study (done by ECNP and EBC) - 40% of the population of the EU (165 million) suffer from one of 100 clinically-defined mental health conditions annually. They found that 27% of DALYs (disability-adjusted life years) are lost due to neurological and psychological conditions - making it more serious than either cancer or heart disease.
I think that is a really relevant statistic to use when thinking about mental health - it doesn't kill people (directly!) but causes enormous levels of angst and unhappiness which can be hidden in their nature and therefore don't attract the same attention as the big killers. It is also very encouraging to see this being reported in such a publication too!
Friday, 24 February 2012
Session 1 of the Expert Patient Program
I started the first session of six of the Expert Patient Program Self-Management Course today, and it was fantastic! It was the first time I had really met a group of people with similar experiences to me - it is so refreshing and comforting and reassuring to not feel alone, or to feel that I have over-reacted to my own situation. Hearing grown men talk about their difficulties was amazing - it illustrates the power of group that everyone felt they could share their thoughts. The content of the course was brilliant - covering dealing with difficult emotions and the challenges of doing physical exercise whilst suffering. It was honest, helpful and practical - completely grounded in the tutors experience and delivered in a sensitive and relevant way.
I am now really looking forward to reading the Self-management of Long-term Health Conditions - A Handbook for People with Chronic Disease!
I am now really looking forward to reading the Self-management of Long-term Health Conditions - A Handbook for People with Chronic Disease!
Thursday, 23 February 2012
Translating DH tools to real patient experience
The DH has published many tools for those working with patients with LTC . . . (see examples here) . . . Of course the quality of the work done by these professionals needs continual improvement and adjustment, like any profession, but I can't help thinking the access and quantity of the service also needs to be increased too! I have never come across any such support in my experience as a patient. Access to these programs needs to be improved so more patients can benefit from the excellent programs of support and management they offer. In a resource-limited situation those most needy must access the service first, but with this approach rolled out across the whole healthcare service, many patients with LTC that are only semi-debilitating miss out on all support until the associated stress has contributed to a deterioration in their physical symptoms such that they are significantly debilitated. Preventing illness is important, but preventing progression of an already present but not yet serious illness is an often forgotten but highly effective approach that should be given higher importance.
Policy and Statistics background
The Kings Fund has produced this really informative page detailing the key facts, publications and current policy ideas around long-term conditions. . . .
Two things really stood out to me:
Two things really stood out to me:
- There are 15.4 million people in England with at least one long term condition
- In 2005 a generic model for LTC management - National Service Framework for LTC - but how much improvement have we seen in clinics since then?!
NHS disparity
NHS Choices has an informative, helpful and practical website for patients with long term conditions about self-care - see here. Why has this sort of advice not yet trickled up to doctors and top consultants?! I completely agree that patients have to take some degree of responsibility for their own health, but it requires a lot of initiative and searching to come across these online resources. Many patients may never come across them. If the NHS really believes in self-management, it needs to convince its consultants of its value and get them to spread the message. Self-management should be actively encouraged by all health professionals and not just adopted by patients because they feel let down by the doctors and have lost hope in the medical teams.
The Kings Fund publication
Recently the Kings Fund published this report - Long Term Conditions and Mental Health: The cost of co-morbidities.
The summary given by The Kings Fund is as follows:
The summary given by The Kings Fund is as follows:
"More than 4 million people in England with a long-term physical health condition also have mental health problems, and many of them experience significantly poorer health outcomes and reduced quality of life as a result. In terms of NHS spending, at least £1 in every £8 spent on long-term conditions is linked to poor mental health and well-being – between £8 billion and £13 billion in England each year.
Long-term conditions and mental health: The cost of co-morbidities, published jointly by The King’s Fund and the Centre for Mental Health, suggests that care for a large number of people with long-term conditions could be improved by:
- integrating mental health support with primary care and chronic disease management programmes
- improving the provision of liaison psychiatry services in acute hospitals
- providing health professionals of all kinds with basic mental health knowledge and skills
- removing policy barriers to integration, for example, through redesign of payment mechanisms.
This paper suggests that developing more integrated support for people with mental and physical health problems could improve outcomes and play an important part in helping the NHS meet the quality, innovation, productivity and prevention challenge. The authors conclude that the prevailing approach to supporting people with long-term conditions is at risk of failing unless we recognise the role of emotional and mental health problems in reducing people’s ability and motivation to manage their physical health."
Overall it is a really interesting report and it is very refreshing to hear the topic being discussed at such a high level and being taken seriously.
Long Term Conditions Neurological Community
An interesting site, with some good resources . . .
The Brief Notes are particularly useful - especially the Brief Notes on Self-Care, Self Management and Care Planning (which have a really great link to this document - Self Care Resource Pack - which provides a really thorough discussion on the needs and programs in the SW)
http://www.ltc-community.org.uk/default.asp
The Brief Notes are particularly useful - especially the Brief Notes on Self-Care, Self Management and Care Planning (which have a really great link to this document - Self Care Resource Pack - which provides a really thorough discussion on the needs and programs in the SW)
http://www.ltc-community.org.uk/default.asp
Defining Mind-Body Medicine
Almost a buzz word, I wanted to get back to what the phrase "mind-body medicine" actually meant ...
The University of Maryland Medical Center has a really good definition:
"Mind-body medicine uses the power of thoughts and emotions to influence physical health. As Hippocrates once wrote, "The natural healing force within each one of us is the greatest force in getting well." This is mind-body medicine in a nutshell."
The University of Maryland Medical Center has a really good definition:
"Mind-body medicine uses the power of thoughts and emotions to influence physical health. As Hippocrates once wrote, "The natural healing force within each one of us is the greatest force in getting well." This is mind-body medicine in a nutshell."
Wednesday, 22 February 2012
National Institute of Whole Health
Another American organisation . . . The National Institute of Whole Health has some great ideas and projects, working towards a healthcare system that looks at patients in a more holistic way and aims to empower them through education. They offer training to bring these ideas into clinics, and have a strong philosophy, which I think is very interesting. Translating these ideas into practise in a resource limited setting is the challenge!
"Nature is the reflection of the innate order, perfection and interrelationships of creation. Life is not only physical and chemical, mental and emotional; it is also an expression of a profound spirituality, which we do not yet fully understand. Given this, it becomes appropriate to approach health care from a whole person oriented philosophy which is educational, focused on disease prevention and, to the extent possible, fully engages the participation of individuals in their health recovery process."
"What does an ideal whole health practice look like?
being with the patient, rather than practicing on him; on educating the patient, rather than merely treating the symptoms. It was a "relationship-centered patient education model"!
"Nature is the reflection of the innate order, perfection and interrelationships of creation. Life is not only physical and chemical, mental and emotional; it is also an expression of a profound spirituality, which we do not yet fully understand. Given this, it becomes appropriate to approach health care from a whole person oriented philosophy which is educational, focused on disease prevention and, to the extent possible, fully engages the participation of individuals in their health recovery process."
"What does an ideal whole health practice look like?
being with the patient, rather than practicing on him; on educating the patient, rather than merely treating the symptoms. It was a "relationship-centered patient education model"!
The Center for Mind-Body Medicine
This is a really refreshing organisation - The Center for Mind-Body Medicine in Washington D.C. - some great ideas supported by lots of research, and a lot of focus beyond western diseases and using these techniques in areas suffering with war and natural disasters.
Of particular interest was their Mind-Body Medicine Training Program Research (A study performed at Georgetown University School of Medicine with first-year students using the Center for Mind-Body Medicine's program and University of Washington School of Medicine study shows decreased anxiety in 2nd year students), which gives strong evidence for introducing these ideas to clinical students. As with anything, a personal positive experience is an effective way to ensure the message is spread - if medical students experience mind-body connections not only are they more likely to recommend such ideas to their patients, they are taking with them through their medical career a strong understanding (or at least appreciation) of the power of the mind, which I feel can be an invaluable attribute for them when dealing with patients.
Of particular interest was their Mind-Body Medicine Training Program Research (A study performed at Georgetown University School of Medicine with first-year students using the Center for Mind-Body Medicine's program and University of Washington School of Medicine study shows decreased anxiety in 2nd year students), which gives strong evidence for introducing these ideas to clinical students. As with anything, a personal positive experience is an effective way to ensure the message is spread - if medical students experience mind-body connections not only are they more likely to recommend such ideas to their patients, they are taking with them through their medical career a strong understanding (or at least appreciation) of the power of the mind, which I feel can be an invaluable attribute for them when dealing with patients.
Invisible Illness Awareness
A really refreshing and wonderfully honest website dealing with the issues patients face when their conditions are invisible.
http://invisibleillnessweek.com
The tag line "when "you look so good" isn't a compliment!" is very true! Although being able to avoid the challenges of physical deformities, there are another set of challenges to face when you don't LOOK ill! Of particular interest to me were these articles. . .
"You look so good!" To wear make up or not?
Am I too invisible for Accessible Seating?
Although American, these are totally universal experiences. It is so reassuring to find others talking about it - easily relating to their stories - and the difficulty of explaining invisible illness to others.
My mother shared with me this technique, and this letter to explain the fatigue of illness. . .
The Spoon Theory: It is such an accurate, moving, and honest portrayal of a life with limited energy reserves! And explains something which I find almost impossible to explain to even my closest family and friends.
Open Letter: again, very honest about the fluctuations of illness and mis-interpretations of these!
Reading of shared experiences brings such reassurance and comfort!
http://invisibleillnessweek.com
The tag line "when "you look so good" isn't a compliment!" is very true! Although being able to avoid the challenges of physical deformities, there are another set of challenges to face when you don't LOOK ill! Of particular interest to me were these articles. . .
"You look so good!" To wear make up or not?
Am I too invisible for Accessible Seating?
Although American, these are totally universal experiences. It is so reassuring to find others talking about it - easily relating to their stories - and the difficulty of explaining invisible illness to others.
My mother shared with me this technique, and this letter to explain the fatigue of illness. . .
The Spoon Theory: It is such an accurate, moving, and honest portrayal of a life with limited energy reserves! And explains something which I find almost impossible to explain to even my closest family and friends.
Open Letter: again, very honest about the fluctuations of illness and mis-interpretations of these!
Reading of shared experiences brings such reassurance and comfort!
Guardian Healthcare Network: Long-term conditions and mental health
The Guardian Healthcare Network recently held a live debate on how the NHS can cope with the growing number of people with long-term health conditions and mental health problems. See the full article here, but here some points which really resonated with me:
"If you get mental health right, then costs elsewhere in the system can go down. Liaison psychiatry services helping people in hospital who have physical and mental health problems can save the hospital four times the money it costs to provide the liaison service."
Chris Naylor
Good mental health benefits physical health - targeting both during an inpatient stay seems a very effective and holistic approach to returning the patient to independent (in every sense of the word) living as soon as possible.
"There's a three-way interaction between the mental, the physical and the social There's evidence from Glasgow showing that the social conditions you live play a big role. If you have physical health problems and you live in a relatively deprived area, your chances of experiencing mental health problems increases dramatically."
Chris Naylor
"The PBR regime for acute physical health is not very well designed for long-term conditions We need to be thinking about developing a payment system which is linked to integrated care pathways, not single episodes of treatment."
Michael Parsonage
SO TRUE! From experience, doctors often neglect the wider picture, instead focusing on single episodes of ill health. If single episodes are rare and unrelated as they are for most healthy people, this approach is appropriate. If however doctors get you walking again after a relapse of a long-term condition, but then "wash their hands of you", the long-term condition remains, and relapses become more frequent with underlying conditions often worsening too.
"Concepts of "mental" and "physical" are unhelpful We need a more person centred, integrated approach and this has to start in primary care and public health. It is too late when people get sucked deep into the health care system."
"The report perpetuate the idea that medical conditions exist separately instead of being part of the person as a whole We need to understand the root causes of health conditions and their fundamental interconnectedness. To some extent the concepts of "mental" and "physical" are also unhelpful. We need a more person centred, integrated approach and this has to start in primary care and public health."
Andrew McCulloch
Couldn't agree more!
"If you get mental health right, then costs elsewhere in the system can go down. Liaison psychiatry services helping people in hospital who have physical and mental health problems can save the hospital four times the money it costs to provide the liaison service."
Chris Naylor
Good mental health benefits physical health - targeting both during an inpatient stay seems a very effective and holistic approach to returning the patient to independent (in every sense of the word) living as soon as possible.
"There's a three-way interaction between the mental, the physical and the social There's evidence from Glasgow showing that the social conditions you live play a big role. If you have physical health problems and you live in a relatively deprived area, your chances of experiencing mental health problems increases dramatically."
Chris Naylor
"The PBR regime for acute physical health is not very well designed for long-term conditions We need to be thinking about developing a payment system which is linked to integrated care pathways, not single episodes of treatment."
Michael Parsonage
SO TRUE! From experience, doctors often neglect the wider picture, instead focusing on single episodes of ill health. If single episodes are rare and unrelated as they are for most healthy people, this approach is appropriate. If however doctors get you walking again after a relapse of a long-term condition, but then "wash their hands of you", the long-term condition remains, and relapses become more frequent with underlying conditions often worsening too.
"Concepts of "mental" and "physical" are unhelpful We need a more person centred, integrated approach and this has to start in primary care and public health. It is too late when people get sucked deep into the health care system."
"The report perpetuate the idea that medical conditions exist separately instead of being part of the person as a whole We need to understand the root causes of health conditions and their fundamental interconnectedness. To some extent the concepts of "mental" and "physical" are also unhelpful. We need a more person centred, integrated approach and this has to start in primary care and public health."
Andrew McCulloch
Couldn't agree more!
When will the NHS start using email to contact patients?
A very topical article on the Guardian Healthcare Network (read in full here) . . .
I completely relate to the anguish of waiting for post, and email would make it far quicker! As for the security of the Royal Mail, several significant medical letters of mine never arrived, despite being delivered to others cc'ed in!
One solution that might bypass the security fear around email would be to use something like HealthSpace, an online service already established by the NHS (see here) - being online it avoids the time and money costs of post, and already boasts a "Calendar" service, for patients to log all their appointments. Can that be shared with health professionals? The service already has "internationally recognised security measures" - does that overcome the issues of snail mail and email?
I completely relate to the anguish of waiting for post, and email would make it far quicker! As for the security of the Royal Mail, several significant medical letters of mine never arrived, despite being delivered to others cc'ed in!
One solution that might bypass the security fear around email would be to use something like HealthSpace, an online service already established by the NHS (see here) - being online it avoids the time and money costs of post, and already boasts a "Calendar" service, for patients to log all their appointments. Can that be shared with health professionals? The service already has "internationally recognised security measures" - does that overcome the issues of snail mail and email?
Vitamin D Dilemma!
The level of Vitamin D in our population has recently been the focus of some concern - The Chief Medical Officer for England has spoken out about this (here). Having recently been told that my own Vitamin D levels are very low, I am really interested in the approaches suggested to increase all of our vitamin D levels.
Vitamin D is "the sun vitamin", absorbed through the skin from sunlight. Modern lifestyles are mostly to blame for these deficiencies, as we now spend more and more time indoors. The Department of Health notes the following groups of people are at risk of Vitamin D deficiency:
The fourth point is particularly interesting. As a result of my primary health conditions, my physical activities were dramatically reduced - I spent more and more time indoors, and although tried to walk at weekends for fresh air, I am significantly deficient in Vitamin D.
When patients become ill and especially with limited energy or mobility, they are very likely to reduce the time they spend outdoors. It is a balance between being completely OTT, providing unnecessary treatment, and preventing secondary condition in patients already suffering with considerable ill health. Maybe patients with vitamin D levels on the low side should be advised to have supplements during a period of relapse?
Although not life threatening, Vitamin D deficiency can cause significant disability, and for patients with already disabling primary conditions, the diagnosis of additional secondary conditions can be very stress full. I am aware of the criteria for screening programs (Wilson & Junger, WHO, 1968), and current screening criteria (UK National Screening Committee) but I feel this could be of great value to patients with long term conditions that limit mobility and energy levels.
. . . It would be interesting to find out about the effect of Vitamin D deficiency in this sub-group (patients with long-term conditions affecting their mobility), since bone has a 'use it or loose it' aspect. . . with minimal weightbearing and use of lower limb bones, would the effects of Vitamin D deficiency be more pronounced in this group?
Vitamin D is "the sun vitamin", absorbed through the skin from sunlight. Modern lifestyles are mostly to blame for these deficiencies, as we now spend more and more time indoors. The Department of Health notes the following groups of people are at risk of Vitamin D deficiency:
- all pregnant and breastfeeding women, especially teenagers and young women
- infants and young children under 5 years of age
- older people aged 65 years and over
- people who have low or no exposure to the sun, for example those who cover their skin for cultural reasons, who are housebound or confined indoors for long periods
- people who have darker skin, for example people of African, African-Caribbean and South Asian origin, because their bodies are not able to make as much vitamin D
The fourth point is particularly interesting. As a result of my primary health conditions, my physical activities were dramatically reduced - I spent more and more time indoors, and although tried to walk at weekends for fresh air, I am significantly deficient in Vitamin D.
When patients become ill and especially with limited energy or mobility, they are very likely to reduce the time they spend outdoors. It is a balance between being completely OTT, providing unnecessary treatment, and preventing secondary condition in patients already suffering with considerable ill health. Maybe patients with vitamin D levels on the low side should be advised to have supplements during a period of relapse?
Although not life threatening, Vitamin D deficiency can cause significant disability, and for patients with already disabling primary conditions, the diagnosis of additional secondary conditions can be very stress full. I am aware of the criteria for screening programs (Wilson & Junger, WHO, 1968), and current screening criteria (UK National Screening Committee) but I feel this could be of great value to patients with long term conditions that limit mobility and energy levels.
. . . It would be interesting to find out about the effect of Vitamin D deficiency in this sub-group (patients with long-term conditions affecting their mobility), since bone has a 'use it or loose it' aspect. . . with minimal weightbearing and use of lower limb bones, would the effects of Vitamin D deficiency be more pronounced in this group?
Sunday, 5 February 2012
Psychiatric drugs 'effective' in treating physical illness
The Nursing Times recently published an interesting article: Psychiatric drugs 'effective' in treating physical illness, (read it here), which raises some intriguing questions.
Although the article is quite misleading and unclear, the title was what really caught my eye. It suggests that there is psychiatric element to many physical illnesses, since psychiatric drugs can effectively used to treat it. I wonder how much doctors consider this, or the wider idea of treating a physical illness with mental therapy? The big challenges with that would be getting both patient and doctor to accept the role (however large or small) of the mind in the health condition.
As it happens, the title is very misleading, and the original paper actually compares the effectiveness of psychiatric drugs in psychiatric patients with the effectiveness of 'normal' drugs in patients with physical illness.
But what a powerful headline!
Although the article is quite misleading and unclear, the title was what really caught my eye. It suggests that there is psychiatric element to many physical illnesses, since psychiatric drugs can effectively used to treat it. I wonder how much doctors consider this, or the wider idea of treating a physical illness with mental therapy? The big challenges with that would be getting both patient and doctor to accept the role (however large or small) of the mind in the health condition.
As it happens, the title is very misleading, and the original paper actually compares the effectiveness of psychiatric drugs in psychiatric patients with the effectiveness of 'normal' drugs in patients with physical illness.
But what a powerful headline!
Radio 4 tackles Conversion Syndrome head on!
Conversion Syndrome - controversial diagnosis discussed frankly by Radio 4.
Always slightly cautious of 'quick fixes' and miracle cures and the case study is quite an extreme one but very interesting!
Listen to the podcast here, and here is the link to a case study reported on the BBC website. This website has some good information about the condition - http://www.neurosymptoms.org/#
Interesting to see what an effect mental conditions can have, although not sure one would feel a patient being told you had this?! As the case study said, its difficult!
Always slightly cautious of 'quick fixes' and miracle cures and the case study is quite an extreme one but very interesting!
Listen to the podcast here, and here is the link to a case study reported on the BBC website. This website has some good information about the condition - http://www.neurosymptoms.org/#
Interesting to see what an effect mental conditions can have, although not sure one would feel a patient being told you had this?! As the case study said, its difficult!
Meditating and Relaxing: Autogenics
I am not one for really alternative things, having had a very scientific education. Too much ying and yang and I switch off. A shame, because I think it has really limited my ability to access some potentially very valuable resource. But as a starting block for anyone looking for some Western meditation that is easy to understand and very grounded, I would really recommend Autogenics.
Check out the British Autogenic Society to find out more.
As a patient you are always 'tuned in' to your body and feel that you are constantly aware of it. Autogenics has taught me a whole new way of being my body and observing it and really 'tuning in' to it in a deeper way than I ever had before.
Check out the British Autogenic Society to find out more.
As a patient you are always 'tuned in' to your body and feel that you are constantly aware of it. Autogenics has taught me a whole new way of being my body and observing it and really 'tuning in' to it in a deeper way than I ever had before.
It is NOT all in the mind!
Reading back my last few blogs I want to emphasise a point I think might not be clear. . . . I do not think that everyone with a long-term condition is 'faking it' nor am I suggesting that 'it is all in the mind'. It most defiantly is not. As with many patients, I have been diagnosed with clinically recognised physical conditions. There are pages and pages of doctors notes from in patient stays and out patient appointments that strongly support proven medical conditions. One suggestion that I was to be referred to a psychiatrist resulted in anger from me, feeling dismissed and let down by the doctors.
I have now come to realise that with any long term condition that requires lifestyle adjustments or any amount of time chasing doctors,picking up prescriptions and managing symptoms is going to have some effect on one's mental health. The illness itself and its associated stresses will have an effect on mental well being.
Addressing these issues is not saying it is going to cure the condition. It won't. But with so many of these long term conditions lacking effective treatment, anything that removes a small layer of it must be worth pursuing, yes?
I have now come to realise that with any long term condition that requires lifestyle adjustments or any amount of time chasing doctors,picking up prescriptions and managing symptoms is going to have some effect on one's mental health. The illness itself and its associated stresses will have an effect on mental well being.
Addressing these issues is not saying it is going to cure the condition. It won't. But with so many of these long term conditions lacking effective treatment, anything that removes a small layer of it must be worth pursuing, yes?
Getting better!
As a patient, "when I am better" is this magical time when one can do everything, is happy, in control and often seemingly impossible to obtain! Everything we do and think about is geared towards recovery, but what do we actually understand by recovery? Are our current ideas of it limiting our ability to achieve it?!
"Recovery is a deeply personal unique process of changing one's attitudes, values, feelings, goals, skills and roles. It is a way of living a satisfying, hopeful and contributing life, even with the limitations caused by illness. Recovery involves the development of new meaning and purpose in one's life as one grows beyond the catastrophic events of illness."
Anthony 1993 - From the Sainsbury Centre (2008): Making Recovery a Reality
Recovery is really more of a mind-set. Our best tool to 'recover' is therefore our minds.
"Recovery is a deeply personal unique process of changing one's attitudes, values, feelings, goals, skills and roles. It is a way of living a satisfying, hopeful and contributing life, even with the limitations caused by illness. Recovery involves the development of new meaning and purpose in one's life as one grows beyond the catastrophic events of illness."
Anthony 1993 - From the Sainsbury Centre (2008): Making Recovery a Reality
Recovery is really more of a mind-set. Our best tool to 'recover' is therefore our minds.
Self-Care
Having just signed up to start an Expert Patient Programme, I am getting really into the idea of self-care. The national health policy is a lot about us taking responsibility for own health - there is a lot that patients with long-term health conditions can do help themselves. This can provide an invaluable sense of independence.
This self-care booklet is fantastic (published by NHS Dorset).
To pull out some quotes that really had resonance with me . . .
"True collaboration with patients and professionals can complement traditional medical care."
"Health professionals often reach the limit of what they can do to improve your long term condition, but you will never reach a limit to your own ability to self care and make improvements to your own quality of life."
"Medicine only ever has limited success if you are not prepared to help yourself as well by self caring to the best of your abilities."
Food for thought!
This self-care booklet is fantastic (published by NHS Dorset).
To pull out some quotes that really had resonance with me . . .
"True collaboration with patients and professionals can complement traditional medical care."
"Health professionals often reach the limit of what they can do to improve your long term condition, but you will never reach a limit to your own ability to self care and make improvements to your own quality of life."
"Medicine only ever has limited success if you are not prepared to help yourself as well by self caring to the best of your abilities."
Food for thought!
Turning experiences into careers . . .
Losing a job I was never that passionate about has really fuelled my desire to find a career that I find worth-while and rewarding, but also uses my experience as a patient to benefit others.
Some-thing that I feel is missing and much needed in the NHS is a well being role - to counsel people with long term conditions, help them manage being a patient (i.e. the practicalities of getting through the NHS system), looking at and supporting self-care with mental health work, nutrition, independent living and lifestyle adjustments, and informing the patient of all the support groups, networks, charities, organisations and strategies out there to help them!
Change is always going to be greater and longer lasting if it comes from inside the individual them selves - empowering patients to do that would be so rewarding!
Some-thing that I feel is missing and much needed in the NHS is a well being role - to counsel people with long term conditions, help them manage being a patient (i.e. the practicalities of getting through the NHS system), looking at and supporting self-care with mental health work, nutrition, independent living and lifestyle adjustments, and informing the patient of all the support groups, networks, charities, organisations and strategies out there to help them!
Change is always going to be greater and longer lasting if it comes from inside the individual them selves - empowering patients to do that would be so rewarding!
The Art of Effortless Living (Ingrid Bacci)
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Someone whom I have enormous respect for recommended this book to me. I am ashamed to say how long it took me to actually sit down and read it from when I was first given it, but it was worth the wait..
Like many similar 'self-help' books, one certainly has to be in the right frame of mind to read, and benefit, from such books. It had slowly been dawning on me that the medical professionals were not going to come up with a quick fix, and that I was going to have a) learn to cope and b) take some responsibility to heal myself.
In short, The Art of Effortless Living by Ingrid Bacci, is one of the most amazing and enlightening books I have ever read - it completely changed my perspective and attitudes almost over night! Clichéd, I know, but true! It was a complete breath of fresh air and opened my mind to new approaches to manage my health. It didn't hold the answers, but conditioned my closed scientific mind such that I could begin to explore on my own the impact of teh mind-body connection, the complex interconnectivity between my mental health and psychical health, and how I could help myself. A few phrases really stuck with me . . .
"When your body collapses, assume that there are emotions that need to be acknowledged."
Like many patients today, I have been diagnosed with a handful of conditions, none of which the doctors seem to be able to explain relapses I have. Maybe in patients like me with a very large and complex medical history and several long-term conditions, relapses are caused by a 'last straw' phenomenon. All of these conditions predispose us to a flare-up or relapse, and bring us very close to the threshold for suddenly becoming very ill. What takes us over that threshold could be our mental health - one bad day too many, one bad meeting or difficult day at work - just pushes our already strained bodies over the edge into a relapse.
We as patients have the power to control that last straw and subsequently, maybe control more of our health than we thought possible!
"I needed to override the familiar program that I held in my mind for years, a program that identified my body with restriction, limitation and pain. By changing my program I changed my body."
Elsewhere in the book she talks about a patient she had who didn't know how to be 'well' because he constantly performed health checks on himself, monitoring his symptoms. This is so familiar for patients with long term health conditions - but when the symptoms do disappear, this checking brings them back! There is the expectation to have them so they do remain. The idea that this is part of wiring system in our brains suggests re-wiring it could solve it! The power of the mind in long-term health conditions is more powerful than I think the medical community often realise.
If our mental power is so important and possibly just as effective as any multi-million pound drug from GSK, shouldn't we all take a little more care of it?
For more information on Ingrid Bacci's work, see www.ingridbacci.com - I would recommend her email newsletters!
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