When you assess the value of a healthcare system you want to get the biggest bang for your buck. In general the UK does reasonably well, but has dropped recently, particularly in relation to efficiency (see Bloomberg Health Efficiency Index). When you are managing chronic diseases an important metric is keeping people out of hospital. Unplanned, or avoidable, hospital admissions cost the NHS money and are a crude index of how well, or not so well, we are managing MS in the community. Sadly we have seen a rise in avoidable hospital admissions for pwMS, which indicates that there has been a fall in standards in how we are managing pwMS in the community. Almost all unplanned admissions are avoidable and are linked to MS related problems. In our last survey the top causes of unplanned admissions were:
1. Urinary tract infections and urinary catheter associated problems
2. Relapses
3. Falls and fractures
4. Faecal impaction
5. Aspiration pneumonia
By treating MS early and effectively all of the above are preventable. In other words preventing pwMS becoming disabled should reduce these admissions. Despite this being obvious the UK still has one of the lowest penetration of DMTs, and particularly second-line more effective DMTs, in the developed world. So despite having the tools at our disposal a large number of pwMS have no access to DMTs.
The report below from the MS Trust using hospital admission records of people in England over the past two years found that there were a staggering 26,679 emergency hospital admissions for people with MS in 2015/16, compared to 23,665 in 2013/14; an increase of 13%. They estimated that these admissions cost the NHS ~£46 million. Please note that 1 in 5 of all people living with MS in England were admitted to hospital as an emergency in 2015/16. If you ask me this is shameful. We are clearly not giving pwMS the necessary care they need to prevent complications and when they get complications we are not treating them properly.
Who is responsible for this crisis and what can we do to improve it?
Do you think it is a resource issue and that austerity Britain with its budget cuts is responsible? Or is it the fault of the HCPs; are we not doing our jobs properly? Are pwMS responsible; should they learn to self-manage their disease more effectively? Clearly this problem needs to be addressed and in my opinion is a crisis already.
I am involved with a small initiative to try and get several key centres in England to engage with reducing UTIs, and bladder-related hospital admissions, in pwMS. The idea is to start with one well defined, albeit a complicated, problem to learn the ropes of implementing systems change that could then be expanded to address the bigger issue. I will keep you posted as things develop.
Sue Thomas, Geraldine Mynors, Siobhan Simpson, Nathan Meade, Amy Bowen. Measuring the burden of hospitalisationin multiple sclerosis: A cross-sectionalanalysis of the English Hospital EpisodeStatistics database 2009-2014. MS Trust 2017.
This report has been jointly written by NHiS Commissioning Excellence and the Multiple
Sclerosis Trust to highlight how better, more cost-effective services can be delivered for
people with MS.
Care for people with MS, especially unplanned care, is currently a huge burden to the NHS.
In 2013/14 non-elective hospital admissions for people with MS in England cost the NHS
£43 million.
The most common reasons for these admissions are infections, urinary tract and
respiratory, pneumonia and MS itself (including MS relapse). With more focus on
anticipatory care, many of these costly admissions could be prevented and the quality of life
for people with MS vastly improved. Furthermore the money saved could be invested in the
provision of more proactive care.
An important factor is identifying at-risk patients and addressing the issues before the
onset of a crisis. MS nurse specialists are ideally placed to identify this group of patients
and provide proactive care, also involving GPs, neurologists, allied health professionals and
community services.
Better data is key if commissioners are to make these much needed improvements and
plan better services for people with MS. A better understanding of the prevalence of MS
both nationally and locally at CCG level, as well as improving the admissions data that
CCGs are using and more accurate and consistent coding are essential and present
opportunities to reduce cost simply through strategies that target the reduction of
non-elective admissions.
As for people with MS themselves, well planned services that provide intervention through
sufficient provision of skilled clinicians are vital to their wellbeing. High quality, proactive
care is needed to prevent many of the secondary complications of MS and to ensure that
people with MS stay as well as they possibly can.
I guess it's rather obvious to say that the crisis is a combination of all the points raised, though that doesn't make it any less true. Further to which in the 18 months post diagnosis of living in NHS land I've found all health care professionals having to operate at a perfunctory level, leaving their knowledge of me as a person and my MS limited. Best wishes for your initiative. Maybe silly to highlight this, but in the years before I knew of MS I saw two gynaecologists at different times who gave me very similar advise that has reduced my UtI's to pretty much zero. When using the loo when you've finished wait a few seconds and then see if you can go again. Also at night go then move around for 15mins or so and then go again. I was told I'd be surprised how much you can go the second time and this is true! Silly little something but it has proved beneficial.Btw ProfG I may have failed to comment earlier in the week in a sufficiently light-hearted, ribbing manner in saying that your posts are dramatic in style, but today I want to say that your strongly worded position statement about this crisis resonates with me!Thanks so so much for the posts on this website from the whole team – uber beneficial and in my case, and I'm sure in many others, assisting self-management.Hope you all have a good weekend and some well deserved sleep – MD comes to mind!
Hi FiAs the song goes, "We'll sleep when we're dead" 😉
After a lousy nights sleep due to neuropathic pain, thanks for making me chuckle this morning 🙂
The pharma love-in by the medical system, government and the MS charities contributes to this state of affairs. Don't upset pharma is the mantra, don't do anything that will challenge this position. If we look at the pipeline of many of the phama companies, there is not much in their phase I/phase II pipeline that is going to be new. One of the MS Society priorites was to address the value of early and effective treatments. Where is the answer to this question? It could be done even without Big Pharma.It is years since this priority was set. For example early HSCT. We know that it works for relpasing MS as good or better than other DMT. There must be many centres in the UK where HSCT is being undertaken for cancer. Is there any slack in that system, that the NHS can use to undertake this study? It would ultimately save on DMT associatded costs.
Our experience with generic cladribine would support some of your views.Opperrtunity missed. But you know what I think on this one.I suspect you Will have to wait until generic small molecules arrive but if we think they will cost pence and would become freely available, I would say don't hold your breath.Also at present their licence is second line so, no joy from them.DMF looks like the best bet at presence unless Teri saves the day.
Should be more aggressive. The written word is out there with brain health. We are not violent by nature:-)
Why not start being aggressive with your treatment advice? You could highlight the realities of MS if untreated (Teresa May's mother died in her early 50s, J.K. Rowling's mother died in mid-40s). We have treatments which pretty much stop relapses and provide NEDA out to c.6 years for most. You should be steering patients away from no treatment or opting for safe but low efficacy treatments. Patients aren't best placed to make these decisions as they will focus on side effects (e.g. Thyroid issues) and not the long game (you see advanced MS in your clinic). Patient choice is all very good but what if they choose a treatment which won't do much in terms of reducing their risk of getting advanced MS? Getting newly diagnosed MSers on to a treatment like Alemtuzumab (with post treatment monitoring) will reduce unplanned admissions from relapse, will keep most recipients in work for longer, and will save the NHS money in the long run (compared to 10-15 years on an injectible or a tablet).
I agree but the reality is risk aversion. Not sure if inventors of alemtuzumab would put someone on their drug without evidence of alot of activity. So there is neuro aversion. Why are some of the CRAB drugs the big sellers, is it pwMS not willing to take the risk or (lazy) neuros not wanting to monitor and manage.
I say what I say because I have heard it from the horses mouth. Not say that view is current so no need to slag me off.
Everything you say resonates, I've got the T shirt, read the book and seen the film. There are three words that will reduce the number of times a person with MS has to go to hospital. EDUCATION, EDUCATION EDUCATION. People with MS need to be told how they can be a danger to them selves and not left to find out the hard way. People do have relapses, that is a fact. However it is very easy to supply basic information on reducing chances of a fall or UTI. We do not need experienced and expensive clinicians to provide this care. The investment to do this would be comparitively small and the return on investment should be very good. For example supply more educational info in the MS magazines. Tell people what is out there that can help them.It makes me very cross that I have had to learn so much the hard way and there is so little available to supply a little bit of simple education.
Well said Patrick.
I keep thinking a free online basic course in MS self-management might help. Like a 101 basic course. That would cover things like falls prevention, dealing with and minimising UTI's as mentioned. When people are diagnosed with CIS or MS they can get a link to this course. Also MS nurses could promote it.
I've contacted the MS Society and asked them if they would consider making a few videos for their website, on falls prevention and UTI's. The National MS Society have a video on their website on falls prevention which is helpful.
Just want say that I'm glad to read this and that I hope the MS Society and maybe other charities will take up this idea.
https://support.mstrust.org.uk/shop?prodid=249MS Trust provide fantastic info