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…