This is the last of my planned posts challenging the view that ONLY biomedical remedies are needed to help manage RLS.
Like previous posts this is a presentation of information found in the literature.
WHAT IS AN EXPERT PATIENT?
For the chief medical officer (UK), expert patients are “people who have the confidence, skills, information and knowledge to play a central role in the management of life with chronic diseases.”
The term “expert patient” first appeared in a report presented to the UK Parliament in 1999 as a “healthy citizen” initiative to help deal with chronic illness.
This initiative was further developed in report by the UK’s Department of Health. The report suggested that expert patient programmes in the UK should be based on: “developing the confidence and motivation of patients to use their own skills and knowledge to take effective control over life with a chronic illness”
The first level is a patient who is enabled to manage their own care
The second level includes that but goes further i.e. -
Expert patients should be able to both help other patients will illness self-management and work with physicians in ensuring the development of comprehensive care and disease management.
Expert patients have the unique opportunity to clarify patient values and priorities, which in turn may better inform clinical decision-making.
As holders of personal and experiential knowledge about their illness, expert patients are adept in identifying some needs that are not considered or are only poorly considered by doctors and other healthcare professionals.
Expert patient is A popular term for a UK patient with a chronic disease whose knowledge and experience about it empowers him/her to play a part in its management, and whose advice the NHS may seek to improve various processes in managing that particular disease.
Expert patients could increasingly fulfil diverse functions not only in patient education and self-management, but also in the education of healthcare professionals, especially doctors and nurses, who sometimes neglect the importance of illness and the experiential knowledge of patients by focusing only on disease.
Other roles of this second level of expertise could include advocacy.
Patients with a lower education level, who are children, or who are older with cognitive limitations imposed by acquired (or inherited) diseases will have difficulty deciding in favour of or against a given intervention.
In such situations, expert patients may be valid advisers by proxy, helping patients (and/or their families) to decide whether to opt for an intervention.
The suspicion is that for many doctors, the expert patient of the imagination is the one clutching a sheaf of printouts from the internet, demanding a particular treatment that is unproved, manifestly unsuitable, astronomically expensive, or all three
As there are two levels of expert patient then there are two means of preparation -
1) Self-management courses
2) Expert patient programmes.
However in practice these two appear to be used synonymously. The content may be similar. There are additional courses for those wishing to influence health service development.
Patient self-management is the individual's ability to control their symptoms, treatment, the physical and psychological consequences of their condition, and the lifestyle or behaviour associated with chronic conditions.
The objective of self-management is to control the condition with clear strategies to achieve desired outcomes.
Programmes are based on the theory of self-efficacy. Self-efficacy is confidence in one’s ability to carry out an action in order to achieve a defined goal. Self-management does not consist of solving a particular problem but in learning how to solve it.
Improvement due to self management programmes mainly impacts on illness, rather than the disease.
Programmes teaching self-management skills are more effective than information-only patient education in improving clinical outcomes.
Expert patients are able to take more control over their health by understanding and managing their conditions, leading to an improved quality of life.
People who have trained in self-management tend to be more confident and less anxious
Self-management education complements traditional patient education in supporting patients to live the best possible quality of life with their chronic condition. Self-management education teaches problem-solving skills.
It has been long recognised that to cope with rising demand, health services will need to ensure that people living with long term conditions are fully engaged with the management of their own health and wellbeing;
Policy makers across the UK have concluded that current models of care for dealing with long term conditions are not sustainable.
These are in essence, cognitive and behavioural strategies for managing chronic illness.
RELEVANCE TO RLS
I can foresee some responses to this being, RLS is different to other chronic illnesses, CBT doesn’t work for RLS, RLS is a physical disease and needs (only) physical treatment, more research is needed into the causes of RLS etc.
RLS and PLMD are appropriate targets for chronic disease management interventions with which practitioners in general behavioural medicine will be familiar. There are also some data that support the direct and targeted treatment of RLS/PLMD with cognitive and behavioural interventions; some coming from general behavioural medicine.
EXAMPLE OF A SELF-MANAGEMENT PROGRAMME FOR RLS SUFFERERS
A study of a CBT based “programme” for RLS demonstrated the feasibility and high acceptance of a newly devised therapy programme. The application of RLS-oriented specific psychological strategies is a step toward an integrated treatment approach in RLS. The programme was in effect a self-management programme and included
Mindfulness
Sleep disturbances
Stress reduction strategies
Impact of RLS on the social life
Depression in RLS
Individual analysis of situations aggravating RLS
An unexpected effect of the therapy was the significant improvement in RLS severity.
Furthermore, a change in the cognitive interpretation of RLS symptoms and its consequences during the course of therapy had possibly occurred—that is, a change in the subjectively perceived “bothersomeness” of the disorder.
I think it’s pretty much the norm now. Drs like patients to be knowledgable about their illnesses now. Expert patients were presented to me at educational courses at least 15 years before I retired which would make it at least 25 years ago. The days of paternalism in medicine are largely long gone. I think folk tend to discuss the few ‘rotten eggs’ rather than the many ‘good eggs’. It spreads fear and resentment rather than trust & I think does a disservice to all.I worked in the service, jn a training practice for many years. I know what the training and treatment ethos was like.
For many many years it was taught that a condition ( call it what you like, illness, disease or whatever ) affected the entire person, as well as the entire family & psychological aspects were extremely relevant.
I wish people would ‘get’ that all in the health service have a strong desire to help them & help each other. There is no ‘them and us’. either between staff and patients or between different professions. It is all team work.
I learnt as the most junior of Drs from 1975 that I could learn from all staff members & listening to patients was vital.
Please trust your care team & believe they want to do their best for you, even if sometimes their knowledge is a bit lacking or resources limited.
The only ones who actually know what Drs think ( or plumbers, electricians, artists, or whatever ) are doctors.
My father was a surgeon in the 1950’s onward. He taught me the importance of treating the whole patient when I was a young kid. He showed me what dedication & caring was. He died from a stroke ‘
& exhaustion age 57. He showed me the value of team work & valuing colleagues.
Please believe in and trust your nhs to try to do the right thing for you.
RLS is a dreadful condition. This is not the fault of the medics & they didn’t create it. Nor are nhs staff immune from all the same conditions as everyone else. They are people after all & not some separate alien species.
Just to say this post isn't about doctors. It's about the expert patient.
I believe that a doctor's or other health professional's perspective on RLS, as an "illness" is probably always going to be different than the doctor's (or other health professional's) perspective on RLS, as a "disease".
That probably holds true for the difference between how doctors see themselves and how patients perceive them.
Being an expert patient isn't about not trusting a health professional and checking up on them or telling them what to do, it's partly about representing the experience of having the illness and also it's partly about being an advocate (for yourself or others).
The BMJ does recognise that doctors may feel threatened by this, but there's no need for anybody to be defensive about it.
Many thanks, Manerva, for this clear and cogent presentation. It's enormously helpful in identifying the gradation of knowledge and awareness the RLS/PLMD sufferer has to achieve in order to offset the ignorance, and sometimes indifference, of GPs/Physicians to these two enervating disorders. The more informed the patient is the more potentially empowered they are. With that knowledge must come confidence for the patient has to be quietly but tenaciously ready to self-represent within the various levels of medical hierarchy. If a doctor is responsive to a patient's clear authority of knowledge then the symbiosis can be highly effective. If a doctor feels that their status and skill is under attack, as does happen (witness many posts to this group) then that tenacity will be needed to tough it out!
Just a swift PS to my reply above. I've had two excellent GPs who showed great interest in my empirical accounts of PLMD and without their interest and support the early days of this awful condition would have been much more challenging. But my subsequent experience in the same practice has been much less positive with phone appointments managed by a series of clockwatchers determined to cram a consultation into a 10-minute slot. I understand the pressure under which GPs operate, but current conditions in some 'streamlined' practices are compromising their duty of care. And this one-size-fits-all approach obviates any possibility of the patient benefits clearly apparent from Manerva's excellent breakdown of the Expert Patient status.
I am so glad to read about some excellent care reported. It is human nature to mainly discuss the bad out of frustration and worry but it gives a skewed view and instills fear and a potentially combative atmosphere & mind set.In general Drs don’t care about status. It is not what they are about, they are about helping.
They may be paid a reasonable amount but they don’t start earning until their mid 20’s by which time they have large debts and are taking people’s lives in their hands, a responsibilty which weighed heavily my entire working life & some of which still haunts me now - same as for my poor Dad who I watched as a kid worrying & sometimes visiting his patients to check on them at 2am.
Most drs really love expert patients. They make their lives so much easier not harder.
They have no option but to clock watch. These are the conditions an underesourced & underfunded nhs forces them to work under, with big queues of frustrated patients waiting behind. The very last patient can be the illest of all. It has happened to me that the very last, after a long day of juggling balls in the air, had a ruptured aneurysm. Thankfully I still had enough thinking power left to recognise it & the guy survived but that might not have been the case.
After hours of thinking, juggling, listening,talking & stress eventually brains give out & need a break.
The answer is more trained Drs. More trained nurses, psychologists & counsellors to help in this vital team work & so more money spent so agreeing to hgher taxes, not having a go at those already struggling to cope.
Please yes, all become expert patients / care partners ( and the expertise & shared experience on this site is very useful for this ). It will be very beneficial.
But this is to create partnerships, not combat zones, not ‘you have to battle your dr who ‘thinks’ whatever attitude / idea some folk alot to him/her & assumes most are autocrats in it just for themselves rather than caring, empathic, exhausted people who will be delighted to meet an expert willing to do some self care & help with personal knowledge
The language has moved on, we don't call us/them Expert Patients anymore. Haven't for a long time. The terms are generally 'Experts by experience' who assist CQC with inspections/policy & procedure or Peers/Peer Mentors.The information is standard for most chronic illnesses. CBT is just abt changing the way you look at things & the things you look at change...alledgedly. I'm a fan of CBT for some illnesses but not others & it entirely rests on the individual. CBT is very structured & a one size fits all prescriptive therapy.
All it can help with is managing behaviours we developed alongside our RLS (& the evidence is far from compelling), not the sensations themselves. CBT is criticised hugely within services because we know its a cheap plaster we use as a first go to before we try the more expensive efficacious therapies.
Most patients don't complete a full course of CBT, the drop out rates are high because the cost/benefit to the patient are high/low.
Personally, I've never known it work for chronic insomnia in patients in over 20 yrs. Mainly because it takes years of practice to overcome decades of insomnia.
There are things we can all do to improve our wellbeing & thus improve our attitude to this God awful afflication..but in my experience all it does is make life a smidgen more bearable but does not improve the distress in moderate/severe cases.
Thank you I wasn't aware of the term "Experts by experience" as used by the CQC . That may be a term that is used by the CQC.
However whatever you call it, this doesn't mean the concept isn't obselete (not moved on).
You may be referring to the second level I refered to.
Not all Expert patients are involved with the CQC or with helping evaluate (i.e. what the CQC do) services or even help develop services., (which the CQC don't do). Most may be simply knowledgeable about their illness in such a way that it helps them contribute to the self managment of their condition.
It may be that "expert patient" programmes aren't called that any more. From personal experience of the Macmillan Cancer Support "Hope" course it is about patients becoming experts in self-managment.
As regards your over empahasis on CBT, this is possibly a misrepresentation of what I wrote.
Your experience is noted, what is your experience of?
Where lived experience/experts by experience/Peer Support workers/Peer Mentors etc etc..all began.. in Mental Health & addictions, Dual Diagnosis in particular. In the battle to de-stigmatise, those with lived experience who were managing their conditions were embedded within NHS institutions/hospitals/Docs training/charities etc to educate profs & support other patients on a recovery journey to self - manage. The AA fellowship began the Expert Patient phenomenon back in the 1940's.
Thanks for the information. I'm not sure what your point is.
This post was aimed at people who aren't professionals like, apparently, yourself, with the intention of informing them about something they probably won't know about.
Unfortunately, the title I gave it was a little misleading because my main intention is to encourage self management. This is something I feel is rarely mentioned in this forum nor in all the papers referred to about the medical management of RLS.
This I believe it could be of benefit to people and therefore helpful.
You asked me what my field was...I answered accordingly. You also forget professionals with this disease are patients & experts by experience too.
Plenty of us here are experts by experience & practice it with our Doctors/Neurologists if we're lucky enough to have receptive medics.
The admin & others on this site are very knowledgeable & involved in RLS research.
You're promoting quite out of date info & practices which hv been ongoing for many many years...& don't really achieve anything towards allievating symtoms/distress. Moderate/severe RLS is impossible to self manage without pharmaceutical intervention as well as generally looking after your wellbeing. Which is just simply good advice for anyone.
I can see you have some personal experience of some of the things I have written about which you appear to be very negative.
As I previously wrote this post was aimed at lay members who aren't familiar with some of the ideas I've introduced.
Tnis was with intention of helping people in managing to improve if possible, their quality of life, well being etc. to any degree and where possible.
It's a shame you are so critical of some of the material being out of date. I'm not so sure that this means that some people might not get some help from some of the things I've written. e.g. self management is STILL a key component of NHS policy. This is not just a matter of being given advice.
I am a trained facilitator for a self management programme for people living with and beyond cancer. This programme is still running and still relevant.
It appears you have dismissed everything I've written about. It would have been helpful to offer some constructive criticism rather than just negate everything.
What you've written again isn't helpful.
If you dismiss everything I've written, what would you put in it's place?
I apologise for not including my usual disclaimer to prevent the misunderstanding that I have ever written that non-drug strategies should ever replace medication They are an adjunt only.
Most of my comments are about medical treatments and based on up to date recommendations e.g. July 2021.
You say "Moderate/severe RLS is impossible to self manage without pharmaceutical intervention as well as generally looking after your well being."
Several medics offered me no treatment or drugs that were not acceptable. I had to experiment on myself until I found a partial relief that made my life worth living. In fact I could not have survived until my now ripe old age (only 75 but doing well) unless my experiments had been successful. I was mocked by a neurologist when I asked for help. Unfortunately my personal statistical survey showed that most doctors didn't care or didn't know or didn't want to pass me on to specialists, in other words were no help. The best doctor I found was cooperative and willing to offer help or to help me experiment. Unfortunately he suddenly went home to Canada and I had to face the reality that he was the best doctor in the clinic and I had been very lucky to find him.
I wanted an IV iron infusion but, without my Canadian, I had to go doctor shopping to five doctors before I found a very helpful doctor who spent a Saturday afternoon of her time ringing specialists to find one who would do it.
So self management is possible you "just" have to be very lucky and very persistent. I agree that its not easy and there is no guarantee of success but giving up is just a guarantee of failure. You might have to compromise drastically on the quality of life and accept the drugs in the end.
I don't think that RLS responds to generally looking after your well being. That's victim blaming.
Couldn't of said it better. I have several first hand experiences with CBT/DBT presented as the Holy Grail for many of my afflictions. When it doesn't work as planned blame almost always falls on the patient who if really committed should make it work. Shame of failure is a serious side effect of CBT or DBT for patients who dont respond.
That's an excellent article, thank you so much for the time and research. A lot to take in but many themes recur. Some quick takeouts for me:Expert patient .. or Experts by Experience (feels like starting to overthink this) is a really vital concept. I see so many people new to RLS on forums who benefit from the longer view and wider experience of some long term sufferers and it frustrates me that this experience isn't immediately available to people in a structured form as soon as they are diagnosed rather than having to cast about and ask on forums. We need this information concisely available so people know the Pharmacological AND Behavioural options in front of them
Doctor attitudes. I think it is still pretty mixed and I see people in both camps (them and us and sympathetic/holistic) and also many in-between. I feel one thing which is still widely prevalent is a reluctance to discuss the whole picture with a patient, almost all doctors I've seen have focused purely on the immediate issues and not looked any further or explained the possible treatment pathways or options. I don't know if this is a time thing, if they don't want to give the patient ideas and by implication generate hypochondria and demands for treatment which is unjustified but in my experience I was very frustrated with being left in the dark for many months with my previous neuropathy and had to do a load of research myself. Doctors are NOT good at educating patients in my experience. I am also still in the position where a doctors is happy to refer me for drug treatment when most are known to have signifiant side effects and impacts on life and mental wellbeing while refusing an iron infusion because "not aware of studies showing this might help". Hardly focused on the best outcome for the patient is it?
The patient with notes pic is both funny and infuriating. That has been me and still is with my attempts to get some decent iron therapy and it's infuriating because patients shouldn't have to fight to find knowledge about a condition which is already impacting their lives.
Expert courses .. I did actually go on one of these for managing nerve pain without realising that's what it was but looking back it was exactly as described. I came out of it not particularly impressed but I now realise I've learned a massive amount which has been useful to me in managing health in general as well as the nerve pain AND the RLS which wasn't clearly diagnosed at that point. I think these courses are very important but require a longer term outlook and acceptance that there may not be one single solution. Interestingly, much of the material describing the nerve conditions and approaches to managing it came from New Zealand and Australia when they appear to have a much more pragmatic and open approach to managing illness and educating patients in all the options.
Once again thank you for a very thought provoking and useful piece.
I think it’s great if we can research for ourselves. Our time for our own conditions.The conditions where there is the facility to discuss at length all the wider ramifications tend to be those where there are big teams of eg nurse specialists as well whose remit it is to do all the explaining.
At the coal face Drs often have no other option but to prescribe as there are no other options available to them, no other team members to call on or non ‘medical’ to refer to ( or a year long waiting list! )
Many patients express feeling let down if they don’t receive a prescription.
Drs are actually under financial pressure not to prescribe but often have nothing else available.
I say again our health service is seriously underfunded and lacking in personnel.
Honestly often practices are faced with constant firefighting & somehow getting through the day.
The campaigns we need are for extra funds and people, paid for by more taxes.
Staff need support and not ‘bashing’ and a recognition of the constraints they work under. Otherwise they get more and more demoralised & find it even harder to do a decent job.
I understand what you are saying and I never support "bashing". I know the NHS has to cope with simultaneous reduction in funding and increase in demand for many reasons increased longevity, greater treatment options, diseases of modern life etc. However it doesn't mean you just have to accept the unsatisfactory responses and I believe we have a duty to ourselves to work constructively for the right treatment - and ultimately it benefits both the NHS and society if we have correctly targeted and appropriate therapies without the car crashes of side effects and unaddressed issues.
Just to say, my post isn't about doctor bashing, I don't know how it got into that subject.
The word "doctor" only occurs in my post as part of a direct quotation from the literaure or as part of a URL.
The main point of the post is that people who suffer chronic conditions can benefit from self-managing and suggest ways in which they could be enabled to do that.
I agree post is about expert patients but they don’t operate in a vacuum as doctors are the gateway to NHS services and therefore the interaction with doctors is bound to come up in any discussion and they are indeed mentioned in your article briefly. I think the piece is very constructive and balanced and the doctor comments mostly from respondents.
I quite agree that expert patients (although I'm rapidly gloing off the term) shouldn't operate in a vacuum, how could they anyway? However, it's also up to health professionals to recognise the role too.
Hi, I had an emergency neurology appointment just over a week ago where I was absolutely refused an iron infusion, "too dangerous etc etc etc."
Interestingly I have since noticed that there is a link on the NICE Restless Legs Syndrome page to an excellent 2018 research paper entitled 'Evidence - based and consensus clinical practice guidelines for the iron treatment of restless legs syndrome in adults and children :an IRLSSG task force report.'
The paper goes into details of when an iron infusion is recommended and success rates etc.
Knowing that this paper is listed as one of the references on the NICE page has given me confidence to have a go at writing to my GP to see if it is in fact possible.
To access the paper visit the NICE Restless Legs Syndrome page - Investigations - Basis for recommendation (click on the Garcia - Borreguero 2011 link) and you will see a long list of excellent research papers.
I hope this helps you and myself to get what could be a game changing treatment 😊
Thanks that's great. I'm preparing my next constructive communication so if that article is referenced it could be very useful. There are absolutely risks with infusions but they are also a fairly standard treatment in other circumstances and the risks associated with the other treatment options which were not developed for RLS are no better.
Your perception of your experiences of doctors are quite valid and nobody is in a position to disagree with you.
Patients and health professionals may often misperceive each other, however. For example you may see the doctor as being uncaring because they seem to be unwilling to discuss some things with you. It may be that they're unwilling because they find the subject difficult to deal with or that they cant offer any help anyway.
Maybe there needs to be more dialogue between patients and professionals about their misperceptions of each other and more opportunities to do this.
This would help break down the "us and them" perception that can often surface.
It does appear as if some health professioinal feel there is too much "bashing" going on which isn't helpful for either patient or professional. In particular it may lead to professionals being more defensive than they need to be and patients feeling dissatisfied.
This doesn' mean that when professionals misconduct themselves, when it occurs, shouldn't be challenged. It's a matter of judging what is actually misconduct and what is just a matter of differing perceptions.
However, patient-professional relations apart, irrespective of any disagreement about what treatments work or not, the idea that "patients" can be "experts" about their are own ilness and can, with support, self manage it when they can and to the extent that they can is, I believe, very important.
Unfortunately, I feel that some comments, apparently by professionals, have detracted from this message. I feel if they would deny enabling people to self-manage, they are doing everybody a disfavour and may be contibuting to the collapse of the NHS.
A last thought, the problem with the term Expert patient is perhaps the word "patient". That's another story.
• in reply to
I am pretty certain that every health professional in the land would be delighted to help patients self manage. In some specialties the services are set up with this in mind as it is absolutely essential ie type 1 Diabetes & others can learn from this.I doubt there will ever be any conflict.
The health services actively want patients to become experts. It is the only way it is sustainable.
It isn’t a new concept and is to be encouraged.
The final responsibility lies with the prescribers though - and I agree, how on earth can some risky treatments be acceptable and others aren’t.
But it’s the guideline writers who are responsible for this as going out on a limb against guidelines is a personally risky thing to do.
It is a huge and scary responsibility being a prescriber.
• in reply to
This post is directed at lay people who have RLS and may know little about the concept of expert patient. Whether it's a new concept or not isn't therefore relevant, it's new to them.
I hope that for those who find it new information, they can gain from it.
I didn't mention prescribing.
This view seems to reflect the view written of in the BMJ i.e.
"The suspicion is that for many doctors, the expert patient of the imagination is the one clutching a sheaf of printouts from the internet, demanding a particular treatment that is unproved, manifestly unsuitable, astronomically expensive, or all three"
• in reply to
Hi, my last reply wasn’t in response to your original post, it was a follow on from all the various comments that had arisen as today had progressed, including the one mentioning that iron was deemed to be risky but other worse things seemed to be acceptable which I was agreeing was crazy & was explaining how this can arise.
• in reply to
It would have been better to reply to munroist then, not me.
• in reply to
Sorry, I just clicked reply below what I had just read
On the one hand I can see, as in the picture and as the article in the BMJ says about patients clutching printouts from the internet would be a nightmare for a GP.
However, it is a different matter where patients refer doctors to verifiable authoritative evidence which is apparently rejected by the doctor. Presumably if the doctor were to search for information for themselves they would find the same evidence. You could say you're doing them a favour.
You do have to accept some limitations however. Doctors, or any medical prescriber, have to take the responsibility for whatever the consequences are. Thus they may be reluctant to prescribe something without themselves fully understanding the benefits and risks.
You could say if they have this information then and risks were acceptable that there is no reason for them not to prescribe other than their own insecurity.
That is perhaps a general principle.
The case of IV iron, is I believe a little different. I'm not entirely sure but I don't think giving IV infusions, of anything is within a GPs remit. Except perhaps in an emergency.
I believe you'd have to consult a haematologist. The issue then might be that the GP isn't willing to refer you to one as they might see this as improper use of resources.
I do appreciate how frustrating this must be. Unfortunately this may continue to happen until IV iron becomes a recommended treatment for RLS by NHS authorities.
There is another side to this and that is the inappropriate prescription of treatments, e.g. in the case of dopamine agonists which can cause long term problems. This may be a matter of ignorance. Ignorance about RLS I believe is frustrating but acceptable. Ignorance about drugs isn't excusable.
Generally, I'd expect, for example, if you were taking a dopamine agonist and went to see a doctor and referred them to the NICE CKS guidance for GPs on restless legs and how to deal with augmentation, then they'd do as it advises. Why wouldn't they? It's within their remit and capacity. The NICE CKS is not dr Google or some popular blog about health.
Sorry, I went on a bit. I'm with you. It's awful that you can't get an IV infusion if it's appropriate for you.
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Psycho-social factors in RLS
American RLS study 
Opioids for RLS- some useful information
