“Based on the response to my posts on quality metrics, I suspect you are all worn down by repetition and survey fatigue. I have assimilated some of your discussion into my thinking and will draft a response to NICE in the next day or so. I will need to submit these to the ABN MS Advisory Committee for consideration. I suspect they will cull some of the more controversial ones, so I have done that for them.”
“If I can reiterate ‘what gets measured, gets managed’ (Peter Drucker). If we don’t measure something, or insist that it gets measured, we can’t use the data from the metric to drive change. If don’t measure it will not be a problem worth addressing. For example, if we don’t know how many MSers on DMTs are having regular monitoring MRIs we can’t extrapolate how many MSers are being treated-2-target.”
“All 5 of the provisional quality statements are no-brainers, but represent low hanging fruit.
- Statement 1. Adults with MS are supported by the consultant neurologist at the time of diagnosis to understand the condition, its progression and the ways it can be managed.
- Statement 2. Adults with MS are offered a follow‑up appointment with a healthcare professional with expertise in MS to take place within 6 weeks of diagnosis.
- Statement 3. Adults with MS have a single point of contact to co-ordinate access to care from multi-disciplinary services.
- Statement 4. Adults with MS who have a relapse are offered treatment as soon as possible but within 14 days of the onset of symptoms.
- Statement 5. Adults with MS are offered a comprehensive review by a healthcare professional with expertise in MS at least once a year.
“I am have been told that NHS England will be collecting some data on DMT usage and pattern of usage via the Blueteq data portal, or case management system. All MS service providers in England will have to use this system to prescribe high-cost MS drugs. It will be like an electronic Big Brother set-up to make sure we are prescribing in accordance with NICE guidance.”
Statement 7. A certain proportion (to be determined by the ABN) of MSers with relapsing MS need to be on a DMT.
Statement 8. A certain proportion (to be determined by the ABN) of MSers with relapsing MS need to be on a second-line or highly-effective DMT.
“The following is the letter I received that has triggered this series of posts:”
Dear colleagues
We are pleased to announce that the draft multiple sclerosis quality standard is now available on the NICE website for consultation. The consultation period starts today, Wednesday 8thJuly, and finishes at 5pm on Wednesday 5th August. We greatly value all contributions into the quality standard development process and have found consultation feedback extremely helpful in our work on previous quality standards so would encourage you to comment.
The draft multiple sclerosis quality standard, along with the instructions and documents required to submit your comments, can be accessed by following this link:
If your organisation wishes to register as a stakeholder for this quality standard further details can be found by clicking here. Please note if you are submitting comments as an individual there is no need to register.
We would be grateful if you could ensure all responses are submitted electronically using the comments proforma (ensuring all relevant fields are completed, including your organisation’s full name, if applicable). Responses must be submitted to QSconsultations@nice.org.uk by 5pm on Wednesday 5th August.
Following consultation a summary of the consultation comments, prepared by the NICE quality standards team, and the full set of consultation comments will be shared with the Quality Standards Advisory Committee (QSAC). The QSAC discussions on the stakeholder comments and the associated decisions will then be summarised in the QSAC meeting minutes. When the quality standard publishes all stakeholders that submitted comments will be sent a link to the minutes on the NICE website so that they may see how their comments were considered by the committee when finalising the quality standard. Comments received from non‑registered stakeholders and individuals are reviewed by the Committee. A formal response is not given and these comments are not made available on the NICE website. However, if they result in changes to the guideline this is recorded in the Committee meeting minutes.
Supporting organisations
Those who formally support quality standards must be:
· National patient, service users, carer, voluntary, charity and non-governmental organisations that are run by, or directly reflect the perspectives of people who use services, carers or client groups, and represent the interests of people whose care is covered by the quality standard.
· National organisations that represent the professionals and practitioners who provide the care or services described in the quality standard.
· National organisations that represent commissioners or providers of the care or services described in the quality standard.
· Statutory organisations (an organisation set up by government for a specific purpose) including Ofsted and the Care Quality Commission (CQC).
Please do not hesitate to contact us if you have any queries.
Kind regards
The Quality Standards Team
National Institute for Health and Care Excellence
Level 1A | City Tower | Piccadilly Plaza | Manchester M1 4BD | United Kingdom
Web: http://nice.org.uk
CoI: multiple, ABN MS Advisory Committee Member
Prof G,Thanks. Sometimes small is beautiful. We can all come up with a thousand things to measure, but are they all equally important? Is there a risk that you need armies of statisticians recording, analysing, reporting etc. a classic example is all the performance data posted at train stations. All i want is my train to arrive on time! I know a restaurant on the Suffolk coast which is tatty inside, service isn't great, no parking nearby, a bit dark inside, but the seafood dishes are out of this world. You could develop lots of performance indicators, targets etc. and it would score poorly for most, but I'd keep going back there for the fantastic food. Patients want a few things: kind / caring staff; clarity about what the options are (treatments); and their choices to be respected. Patients always remember a doctor who showed empathy and was caring, they won't remember the dozens of leaflets passed to them, the mission and values statements on the wall of the clinic etc. We've lost our good health, we want to retain what we have left, just measuring lots of stuff won't necessarily achieve the latter.
Sorry, but speak for yourself, while of course I want respect, clarity and caring staff, I want more than anything is effective treatments and to get these you do need metrics!
Prof,Nice graphic, but a bit like the EDSS. Once we are on the MS train the destination is death by MS. Is there nothing the researchers / neuros can do to stop the train, or divert it somewhere. We've had 60 years of MS research and a range of treatments, but your graphic could have been produced 100 years ago – relapses, moderate disability, severe disability, death. We don't seem to have come very far, and apart from measuring things, not much hope!
But if you don't try for the annual MRI, you definitely won't get it! I am happy to be under the care of someone who will do monitoring scans. If there's sub-clinical activity, i'd rather know about it and reconsider treatment options before another potentially disabling attack. Or before I lose more braincells than I have to! Even if annual is asking a bit much once treatment established, is it not worth rewording to add it in as an option for a few years to monitor when trying a new treatment. A relative of mine was diagnosed years ago off the back of one MRI. About 15-17 years later, she's finally having a second MRI to see how she's doing (and there have been relapses in the meantime).
It's hard enough to get an MRI scan when you've got absolute need for one. Maybe the drug companies could provide the money for extra machines. That would solve the neuro sceptic problem.
Having had PPMS for 15+ years, I am SO fed up with this constant reference to an inevitable journey that all people with MS are supposed to make. Nobody with MS, not even PPMS, is "guaranteed" to reach any predefined state of disability. Not that I would wish to make light of what is certainly a potentially devastating disease. But to present MS as a disease with an inevitable outcome is simply false and unhelpful.
Well said.
Hear, hear. I too get sick of hearing this. Nothing is guaranteed, and while we need to have awareness of this as a potential outcome, not everyone with MS will die from it. I could be run over by a car, be struck by lightning, murdered, or have a heart attack among so many other things. I might also die at 90, peacefully in my sleep -wtfks! How about focussing on the present, no one can predict the future with complete/any certainty, and I don't feel it helps the Cassandra-like fortune-telling individual or those that have to hear it.