“I received the following email yesterday evening. NICE, the National Institute for Health and Care Excellence, have released a draft of their MS quality standards for consultation. As an active member of the ABN MS Advisory Group I have a means of relaying information to NICE regarding the proposed quality standards. The following are a list of the proposed NICE MS quality statements:
- 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
- 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 do you think of these statements? Are they too vague? Do they need more meat? Are there any glaring omissions? Please remember the quality statements will form the basis of the next UK-wide MS services audit. This will allow CQC (Care Quality Commission), the commissioners (payers) and the users (you) to assess the quality of your local MS service. I personally think some DMT usage metric should be included, i.e. the proportion of MSers eligible for a DMT under current NICE guidelines who are on a DMT, the proportion on a second-line (high efficacy) DMT and some metric around how well MSers are being monitored for suboptimal response to a DMT and a metric in relation to pharmacovigilance (e.g. the proportion of MSers on natalizumab being assessed for PML risk). What about symptomatic treatments and advanced directives? Do we want MSers who don’t want invasive end-of-life care end up having it because they haven’t signed an advanced directive? What about falls prevention and bone health? Co-morbidities? Pressure sores? Access to an MS clinical nurse specialist and a neurologist? Is the use of the term HCP (health care professional) sufficient? Access to a physio- and occupational therapy? Access to neurorehabilitation? All these issues, and I am sure many more, will provide food for thought and need discussion and debate. Please don’t hesitate to comment, they will be taken seriously.”
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.
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