Time is Brain

So what has the UK’s poor performance in relation to cancer survival has to do with MS? A lot. These cancer statistics are collected as part of a national audit and are a bellwether for NHS services in general. If we had national MS statistics they would indicate similar problems, i.e. delays, delays, more delays and poorer outcomes. This is why we wrote a policy document ‘MS Brain Health: Time Matters’ to try and get the MS community to treat MS more urgently and effectively. This is also behind the motivation of our ‘MS Service Provision – Raising the Bar’ initiative to improve MS services and outcomes across the country. 

I would be interested to know if the same issues exist with MS as the do with cancer diagnosis and treatment? 

How long did it take to see your GP?

Did you feel you were wasting your GP’s time?

Did your GP interpret your initial symptoms correctly?

Were you promptly referred to see a neurologist?

How many GP visits did it take to get a neurology referral?

Were you forced to go via accident and emergency to see a neurologist?

How long did you wait to see a neurologist?

How long did it take to get a diagnosis of MS?

How long did it take to be started on treatment?

Are you being monitored for subclinical MRI activity with annual MRI scans?

Have you been offered escalation therapy or an immune reconstitution therapy?

Were you involved in the decision making around your treatment?


These are the kinds of data we need via a national MS audit to benchmark MS services. The idea is to use the data to get rid of unnecessary variation in the provision of MS services. 

Ruth  Thorlby. UK’s poor performance on cancer survival. BMJ 2019;367:l6122


…. the UK had the lowest five-year survival rates for four out of seven cancers….

…. If international variations in cancer survival are real and represent important differences in healthcare systems, what have ICBP studies revealed about their causes? A 2015 survey of around 19 000 people aged ≥50 found that public knowledge of possible cancer symptoms was not substantially worse in the UK than in other countries, but people in the UK were more likely to worry about wasting their general practitioner’s time (34% agreed with this in the UK compared with 9% in Sweden)…..

….. A parallel study of GP referral practices across countries found an association between higher survival rates and GPs’ willingness to investigate or refer quickly, which led some to argue that health systems where GPs have a gatekeeping role were more likely to have poorer cancer outcomes….

…… Although differences between countries existed in the time it took for patients to see their GP for the first time and in time to onward referral, diagnostic tests, initial diagnosis, and start of treatment, these were not obviously associated with survival differences. Each country had a long “tail” of patients waiting many months to start treatment…..

….. Closing the gap between the UK and other countries will require further progress in all four devolved countries. In England, the NHS Long Term Plan, published in early 2019, contains a comprehensive plan for improving cancer services, including multiple strategies for earlier diagnosis with the aim that by 2028, 75% of cancers will be diagnosed at stage 1 or 2. This is ambitious in the current climate….. 

……  Interviewees for our 2018 report Unfinished Business were clear that the 2012 Health and Social Care Act brought unwanted organisational upheaval—for example, to cancer networks. A period of relative austerity in the English health service since 2012 has magnified other problems too. These include worsening workforce shortages in essential professions (such as general practice, diagnostics, and specialist nursing), the diversion of capital funding into everyday expenditure at the expense of maintenance and investment in new equipment, and, more broadly, a short term approach to planning services. Without tackling these fundamental problems, England will struggle to make its contribution to closing the survival gap between the UK and other countries…

CoI: multiple

17 thoughts on “Time is Brain”

  1. While UK Citizens struggle with the unintended consequences of a Socialist approach to Medicine,
    USA Citizens fight each other, one proclaims “Healthcare For All” “Government Run Healthcare” “Medicare for All”
    The Status Quo in USA is Public and Private Insurance.
    Some Government controlled:
    Medicare benefits of aged and disabled workers,
    Medicaid: State run benefits for poor and children with special health needs
    Private: Commercial Insurance and HMO plans, Employer sponsored Or Self insured individuals
    Private Pay: no insurance. Several reasons: can’t afford, Preexisting conditions make premiums unaffordable,
    May be Irresponsible, lazy, sick, depressed, didn’t think they’d get sick
    Last the Non Profit Hospitals under Hill Burton Act must provide some free care in order to maintain their Non Profit status.
    Some people in USA say we should just let The Government run this.
    I feel like our system is working as well as it can at the moment.
    Incremental changes to insure a safety net.
    Mandate free care provision in non profit healthcare systems.
    Just don’t let the Government take care of you.
    We can’t afford that.
    About a Questionnaire study of the Diagnosis-Treatment-Outcomes comparison,
    Might want to do a worldwide study.
    Don’t forget Serbia where patients get the Least.

    1. So sorry to see Trumpian dogma creep in here. The NHS, free at the point of service, is the gem of our troubled society. Despite glaring politically motivated inequality all the way from cradle to grave, patients are treated equally rather than their treatment being a reflection of their social status, income, or inherited wealth.

  2. The population of the U.K. was 58.4 million in 1998. 20 years later It was 66.4 million – an increase on 8 million or 13.7%. Most of the increase was a result of immigration. I don’t believe any european country has experienced growth of that amount in the last 20 years. Is it no surprise that all public services have been under increasing pressure- health, education… It’s impossible to train enough teachers, doctors etc. and build more schools and hospitals to cope without this e er increasing demand. I think it’s scandalous that one solution is to poach more nurses and doctors from abroad – don’t the countries they come from deserve good health care as well. Why should we as a rich country make the healthcare services of poorer countries worse?

    We also need to look below the surface of the cancer figures. I worked with a Romanian man who told me that the main reason for his family moving to the U.K. was the healthcare system- his father had cancer and the latest drugs weren’t available in Romania or were just too expensive. There was a report out a fortnight ago about women in the UK of Pakistani / Bangladeshi heritage and the issue about breast cancer. Even if they found a lump in their breast they tended to ignore it for complex cultural reasons. Many who did seek treatment had left it very late and the cancer had spread.

    We need to be very careful interpreting stats relating to things like cancer. On the surface it may look like we are falling behind the best in class countries, but it’s more complex.

  3. Agreed with Mary. Socialized health care just leads to shared misery. Have experienced MS healthcare on the NHS with family members and my own MS care in the US. Far superior here.

    Socialism doesn’t work, never has, never will.

      1. MD2,

        Completely agree that we need to address drug pricing. There are serious problems with the US model, but it is still a better system than the NHS.

      2. No, it isn’t Aidan but glad you’re happy with your treatment. The NHS is underfunded, particularly over the last decade (I wonder who’s been in power). As ever we want Scandinavian levels of services on US levels of taxation. As it is the NHS (which saved my life last year) does a remarkable job.

        In the US, health insurance is central to the healthcare system, but more than 30 million people remain uninsured. Though the system fosters excellence and innovation in places, the messy combination of underinsurance and overinsurance has left the US with the highest healthcare costs in the developed world and some of the worst overall health outcomes


      3. The Lansley reforms of the NHS in particular have been subsequently admitted by Jeremy Hunt to have been “very damaging”.

      4. Of course I am biased as the NHS was set up by my fellow Welshman and political hero Aneurin Bevan 😉

    1. I am french and I can tell you that our ‘socialism’ heath care system like you said is just awesome. Of course to get that you need to paye taxes, a non financed system (public or private) of course does not work. As I am in the top 5% according to my salary I pay quite a lot taxes but it is worse it. I (we) can have every MS DMTs avalabe on the market with zero co pay (including off label like high dose biotin). I have two 1 hour appointements with my neuro every year. Free MRI every six months. Etc.

      1. The high dose biotin is surely state subsidy of a French company, which one thinks is not supposed to happen.

  4. The more I read about medical care in the world the more I realize the ‘system is broken’ pretty much everywhere. Here in the US there are many areas which need a lot of work. But in the UK it seems to be much more of a Herculean effort to get anywhere. I started having distressing symptoms in 2001, and my gp was part of my HMO (pretty much the cheapest form of employer sponsored health insurance), and he was terrible. It took eighteen months to finally get to a neurologist and get a Dx of MS, after which I started on interferon almost immediately. In that time I was told it was everything from anxiety to drinking too much. I even paid my own money to get an appointment with the neurosurgeon my father was seeing for spinal degenerative arthritis, who gave me a Rx for MRIs of the head, cervical and thoracic spine. Unfortunately I couldn’t get insurance to pay for the MRIs because the gp had to approve, and he wouldn’t… arguing that a neurosurgeon is not a neurologist [yes, he was that bad], and I didn’t need expensive radiology for panic attacks. By the time I was Dx I was already progressing fairly quickly within a few months—I figured I had already started developing the disease years before, but never caught it because I never experienced acute symptoms before 2001. It was and is reprehensible and regrettable that there wasn’t another way. I went from stumbling, to using a cane, to using two canes, to using a four-wheeled walker within about 3 1/2 years. After I was diagnosed, I dumped the gp and paid for the somewhat better insurance and living paycheck to paycheck to fully attack the disease. Unfortunately I believe I lost a lot of important time to events that definitely could have been avoidable, and continue to be aggravatingly persistent in society. These days I am relegated to a nursing facility, which is another disaster of modern healthcare.

  5. Misdiagnosis and delays accessing treatment are also a big problem in Australia – See SBS program ‘Insight’ on https://www.sbs.com.au/ondemand/

    You’ll need to use the search function to find the program and possibly a VPN set to Australia (not sure if the website is geoblocked).

    It’s worth watching.

  6. If you don’t tax the rich you cannot have a good health care system. Full stop.
    That is the discussion in the US and that is the root problem of NHS.
    Guess which ex(?) EU country is a tax paradise for the rich?? (Ok, I helped too much 😉 )

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