I am often asked why I dedicate so much time to blogging. One of the reasons is to help disseminate knowledge and to help curate knowledge, i.e. to highlight what is important to pwMS. By doing this I am participating in a ‘healthcare revolution’ that is leading rapidly to an era when people with a chronic disease will be able to self-manage their disease. Another important reason for blogging is to counteract ‘fake knowledge’, ‘pseudoscience’ and ‘fake news’. Unfortunately, the latter often brings out the worst in some of our followers (aka trolls).
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| Trends in life expectancy in the most deprived local authorities and the rest of England, and the relative and absolute differences 1983-2015. (Source BMJ) |
Barr et al. Investigating the impact of the English health inequalities strategy: time trend analysis. BMJ 2017;358:j3310.
Objective: To investigate whether the English health inequalities strategy was associated with a decline in geographical health inequalities, compared with trends before and after the strategy.
Design: Time trend analysis.
Setting: Two groups of lower tier local authorities in England. The most deprived, bottom fifth and the rest of England.
Intervention: The English health inequalities strategy—a cross government strategy implemented between 1997 and 2010 to reduce health inequalities in England. Trends in geographical health inequalities were assessed before (1983-2003), during (2004-12), and after (2013-15) the strategy using segmented linear regression.
Main outcome measure: Geographical health inequalities measured as the relative and absolute differences in male and female life expectancy at birth between the most deprived local authorities in England and the rest of the country.
Results: Before the strategy the gap in male and female life expectancy between the most deprived local authorities in England and the rest of the country increased at a rate of 0.57 months each year (95% confidence interval 0.40 to 0.74 months) and 0.30 months each year (0.12 to 0.48 months). During the strategy period this trend reversed and the gap in life expectancy for men reduced by 0.91 months each year (0.54 to 1.27 months) and for women by 0.50 months each year (0.15 to 0.86 months). Since the end of the strategy period the inequality gap has increased again at a rate of 0.68 months each year (−0.20 to 1.56 months) for men and 0.31 months each year (−0.26 to 0.88) for women. By 2012 the gap in male life expectancy was 1.2 years smaller (95% confidence interval 0.8 to 1.5 years smaller) and the gap in female life expectancy was 0.6 years smaller (0.3 to 1.0 years smaller) than it would have been if the trends in inequalities before the strategy had continued.
Conclusion: The English health inequalities strategy was associated with a decline in geographical inequalities in life expectancy, reversing a previously increasing trend. Since the strategy ended, inequalities have started to increase again. The strategy may have reduced geographical health inequalities in life expectancy, and future approaches should learn from this experience. The concerns are that current policies are reversing the achievements of the strategy.
I still feel uncomfortable with the concept of self-management. Some patients have the skills / inclination / time to do research and think through the risks / benefits of treatment options. They are also happy to challenge the advice of their doctor / neuro. I am one of those patients who decided that a highly effective treatment early on was the way to go and pushed against my neuro who wanted to start "on the less risky treatments and work our way up the ladder if required". I know many MS patients who have no idea what MS is "I was diagnosed after blurry vision and my hand went numb and have been injecting for three years – not sure if injections are doing much". The real inequality relates to the knowledge of the neuro. My first neuro was "Mr Parkinsons" and had little knowledge of MS (apart from reading out the report which came with my MRI scan. The world of neurology needs to sort itself out so there is consistent advice if I see a neuro in Dover, Doncaster or Dartmouth. This disease is not difficult – the brain, spinal cord and opic nerves are being destroyed ( at various speeds depending on the patient). A patient wants the destructive process to stop as they don't want to become disabled. Neuros should be using a firm hand to steer a patient down the path which provides the best opportunity to stop their CNS being destroyed. Patient choice is a wall neuros can hide behind when things go wrong i.e. the patient decided on a weak efficacy drug which is the reason they have now got advanced MS. Monitoring oneself, not missing appointments, following the advice to keep our brains healthy are all important. But the initial buck must stop with the neuro who diagnoses and advises the patient on treatment options. Given how long neuros take to train, isn't it time that patients can expect equality in the knowledge / skills / advice relating to MS from all neuros.COI I don't like neurology. In 2017 we should be in a much better position in terms of treating all forms of MS.
I entirely agree with everything 'anonymous' has raised.I live in one of the most densely populated counties in the country, and yet the most effective treatments are still unavailable here, despite the headcount.I wasn't offered ANY DMTs by my local Neuro when I was diagnosed by him in Spring 2015 (also a Mr Parkinson's). The Neuro discharged me and had to seek a second opinion in order to get any form of treatment or monitoring. It's not just the NHS-funded postcode lottery that needs to change, it is also the 'wait & see' culture that many Neuros appear to practice and promote. Changing culture of practice requires changing human behaviour. It is never an easy task, but it is something that is expected of us patients. Yes, it is very frustrating to clinicians that some of us find adopting new habits far harder than others, we are all expected to self-manage our health to a certain extent, and entrenchment in behaviours, lifestyles and attitudes can seem insurmountable to many. Likewise, disease management practices need to change when new evidence comes to light, and new treatments become available. That's the nature of scientific progress. New knowledge requires new application, and behavioural change. It has long been time for cultural change within Neurology. The evidence that a change in practice is needed has been clear for a while, and reluctance to adopt new practices that would prevent patient suffering is totally unethical. So why is this change so slow, when so many would benefit from it?
Curious, what is a Mr Parkinson's?
A neuro whose primary interest / expertise is Parkinson's disease not MS.
A dinosaur; Mr Parkinson was a surgeon who is dead. He was a GP in Hoxton and described the shaking palsy or Parkinson's disease.
I totally take Gavin's point about the "democratisation" of knowledge and see that as an unintended, but perhaps necessary, step along the route that is the development of human understanding.I realise that may be small comfort to those, like you lot there, who must continue to struggle politcly with the Brexit/Trump crowd but there is a chance of light at the end of this tunnel.I could say more – I would, if urged, but realise that this is not the forum.
NICE, but what is the cost of this self-management revolution? I bet people with all kind of diseases would want that. Since you promote heavy drug use on MS, when talking about knowledge you are really talking about drug-related knowledge, that is applying the use of old (cladribine) and newer drugs at free will.All very pleasant to the ear (not mine), but still sounds like providing pharma industry with a blank check.
Not really; the self-management revolution is more about symptomatic problems that consume about 80% of our #ClinicChat time. In comparison DMTs only consume about 10-15% of time.
I really wish I wasn't so dubious and doubtful about this approach, but my very limited experience of engaging in the world of MS and my prior professional experience of running groups tells me that the potential for success is likely to be limited. Let me take groups: viewed as highly effective and beneficial within Social Services and the NHS there's been increased understanding that group dynamics can be as potentially destructive as positive. To mention a couple of such things: I remember one psychologist talking about bringing together those with depression can result in the severest depressed among them fuelling the depression levels of those not so affected. Then there's other issues such as group members who insist on dominating or even bullying and those who wish to be lead and not participate etc, etc. Then there's the die-hard attitude here in the UK that doctors know best and as an extension of that the resistance to alternative thinking: I meaningfully use the word 'gently' when talking about trying to explain anything in respect to MS to others. This is partly because of the anxiety and resistance I've seen evident in a couple of people recently diagnosed when I've tried to suggest they don't have to accept the escalation route with DMTs. Whilst it might be my communication skills I need to work on, I'm strongly convinced it's because they expect to look to the neuro and their confidence and reassurance lies in 'putting their lives in the hands of the doctors' Another point about any group around self-management – what will be the status of those heading up any group sessions – to what extent will they be perceived as representing the views of Bart's? From experience I know that those new to a situation are very taken with the 'expertise' of those who are more experienced- I've known occasions when some very experienced foster cares have provided inaccurate and potentially damaging advice and guidance. This may mean there's the need for effective monitoring of the advice and guidance provided by PwMS, and this could require additional work from the Bart's team. There's also the need to provide adequate support to the PwMS putting themselves forward in facilitative and supportive roles. It can be distressing to put in loads of time and energy to asssist someone to have it all rejected, especially when that involves someone remaining in self-destruct mode, as I know from previously working with troubled teenagers. I know this reply doesn't reference all the benefits that can be achieved from groups and any helpful provision from your peers, but I think the need-to-know/want-to-know/do the best I can/be in the best shape/receive the best treatment/take on the medics if necessary patients are in the minority. I hope that I have that completely wrong, but well…..
I imagine the Barts group sessions might run the like the EPP? Volunteers with illnesses facilitate the NHS Expert Patient Programme (EPP) group sessions in pairs. They are observed from the back of the room at one of the sessions, by a quality controller. I'm not sure how often this observing is. Though the observing might put off some people choosing to volunteer to facilitate the session. It has to be remembered these are volunteers who give up their time for free which is appreciated by the NHS.
Yes, I'm very aware that my post doesn't acknowledge or reflect the valuable contributions made by volunteers. Since finishing work I have been one of the volunteers for the NSPCC Schools Service in the area where I live, so I'm experienced in what a significant contribution volunteers can make and with adequate management and organisation this needs to continue in a whole wealth of things.
Apologies, I wasn't assuming anything directly about you Fi.
Nice of you to apologise Anon, but I could have clearer that I didn't take it personally, but your reply prompted me to add the additional post to be more balanced in what I'm saying!Thanks anyway