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NICE Draft guidelines on treatment of MS

These have just been published for consultation here

http://www.nice.org.uk/guidance/gid-qsd114/resources/multiple-sclerosis-qs-draft-guidance-for-consultation2

​Worth reading, even if it’s just to have a laugh about how far your own treatment has fallen below the guidelines (some people might not find it funny, I suppose).

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Possibly surprisingly, my treatment to date has - broadly - fallen firmly into the terms of the proposed guidelines and has done so throughout my dealings with 2 completely separate parts of the UK (England (London) and Wales (Cardiff)).

Other than my initial dealings with a **** of a consultant who had the people skills of an old flip-flop, my diagnosis and subsequent care has been very good. Of course, the fact that the neuro who diagnosed me in London is a professor and considered a leading expert on MS and my consultant in Wales is a lecturer on neuro issues - particularly MS. She is also a bit of a force of nature and is brilliant at “pulling in favours” from other specialists - I have just had a comprehensive NeuroPsychologist’s report from somebody who doesn’t even work in her team any longer but who she “persuaded” to assess me.

The only problem I have noticed is ADMIN which doesn’t really fall within the scope of NICE guidelines! My local NHS just doesn’t seem able to link a request for a test from my consultant with an actual appointment for said test - eg my consultant asks for a new MRI before my next appointment and this doesn’t materialise. Instead I end up being dealt with as a nominal “emergency” by my Tysabri team who bump me into one of their priority in-patient MRI slots on a day that I am in for my infusion (they can do this because I technically count as an in patient when I go for my infusion).

I have, obviously, been quite fortunate.

Great Quality Statements. Especially the diagnosis support and follow up within 6 weeks. Obviously my experience was so long ago everything has changed, but from the comments on these boards I doubt that the majority of people have had their recently diagnosed MS dealt with as effectively. Typical of NICE really, come up with some great sounding statements, they can then do some evidence gathering with regard to these statements, produce a report, maybe recommend a few more well trained MS nurses are employed. And then the CCGs go back to business as usual. But maybe I’m too pessimistic.

Sue

If MSers or non MSers want to comment on the draft NICE MS treatment guidelines we can submit our comments but this must be by 5pm Wednesday 5th August at the latest. If there are topics missed for example.

NICE do not currently recognise stress as effecting MS. In my opinion this urgently needs to be changed. I know NICE are collecting evidence on this, even if anecdotal.

There is the comments form that must be used.

https://www.nice.org.uk/guidance/indevelopment/gid-qsd114/consultation/multiple-sclerosis-quality-standard-consultation

Barts MS Blog have done a post on it and are asking for us to leave comments on the blog about it.

They are asking us: What do you think of these statements? Are they too vague? Do they need more meat? Are there any glaring omissions?

Hi Today Prof G at Barts MS is asking for our comments on the draft MS guidelines. It’s important as it will effect us.

  • 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.

Statement 7. 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 8. A certain proportion (to be determined) of MSers with relapsing MS need to be on a DMT.

Statement 9. A certain proportion (to be determined) of MSers with relapsing MS need to be on a second-line or highly-effective DMT.

Statement 10. The proportion of MSers having annual MRI monitoring should be above x% (to be determined).

Statement 11. 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 12. The number of UTIs in MSers should be lower than x% (proportion of total MSers covered by the service).

Statement 13. The number of fractures in MSers should be lower than x% (proportion of total MSers covered by the service).

Statement 14. The number of pressure sores in MSers should be lower than x% (proportion of total MSers covered by the service).

Statement 15. 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.”

hi lenney

can i make comments even though i don’t come under NICE, live in Scotland and treatment has been going down the tube over the years

trish

Hi Trish i’m not sure but I would say yes do it. You could mention that on the Barts MS Blog post. It’s important the people writing guidelines know about views.

Totally agree on the importance of people adding their comments. Comments can only be made through a stakeholder. Barts are actively encouraging peoples views, please add yours.

How many times do we read about people not having regular reviews, a delay in relapse treatment, coming away from diagnosis day confused, with little information and not sure who or where to turn to.

NB Statements 1-5 are the draft standards. The others have been suggested by the blog.

well i posted my two penneth… although i hope your above statement numbers are skewed, otherwise my responses to statements 6 to 14 on the blog will be quite confusing for the good doctor!

http://www.mstrust.org.uk/news/article.jsp?id=6833

The MS Trust have launched a survey for people to give their views. Its quick and straightforward to use.