Can we please think about the NICE MS quality standards? A response is due on 5th August. #ClinicSpeak #MSBlog #MSResearch
"My post last week has not generated the discussion I wanted it to. I assume all 5 of the provisional quality statements are no-brainers.
- 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.
What about my suggestive statements 6, 7, 8, 9, 10, 11, 12, 13 and 14?
Statement 6. An NHS MS service provider must know how many MSers should be covered by their service and how many are being regularly followed-up by them.
Statement 7. A certain proportion (to be determined) of MSers with relapsing MS need to be on a DMT.
Statement 8. A certain proportion (to be determined) of MSers with relapsing MS need to be on a second-line or highly-effective DMT.
Statement 9. The proportion of MSers having annual MRI monitoring should be above x% (to be determined).
Statement 10. The number of unscheduled or unplanned emergency assessments and/or admissions of MSers should be lower than x% (proportion of total MSers covered by the service).
Statement 11. The number of UTIs in MSers should be lower than x% (proportion of total MSers covered by the service).
Statement 12. The number of fractures in MSers should be lower than x% (proportion of total MSers covered by the service).
Statement 13. The number of pressure sores in MSers should be lower than x% (proportion of total MSers covered by the service).
Statement 14. The number of MSers would have signed-up to an advanced directive should be x% (proportion of total MSers covered by the service).
"This list is not meant to be exhaustive, but designed to be both provocative and to generate discussion about what is needed in the NHS to look after MS and reduce the MS disease burden."
"The following is the letter I received that has triggered this series of posts:"
Consultation is now open on the draft multiple sclerosis quality standard
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:
Multiple sclerosis: quality standard consultation
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.
As you may be aware, NICE is proud to jointly badge quality standards in order to help to achieve maximum dissemination among relevant audiences. If you would like your organisation to formally support the multiple sclerosis quality standard please email QSsupportingorgs@nice.org.uk to express an interest or indicate your interest on the comments proforma.
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.
The Quality Standards Team
National Institute for Health and Care Excellence
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CoI: multiple, ABN MS Advisory Committee Member