“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
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 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.”
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
The statements are ok. I wish they were in place 3 years ago. Statement 1. I was diagnosed with possible RRMS in March 2013 by a registrar. I had no support from a consultant neurologist. Statement 2. This didn't happen for me. I got to see a general neurologist five months later in July 2013.Statement 4. This didn't happen for me. My first relapse: I began steroids for my eyes on the 32nd day of this symptom which was the 51st day of being very very unwell. It was far too long making me wait when I told the registrar I was stressed. I went on to have a massive severe relapse after that for 12 months triggered by stress, anxiety and sleep depreviation. It was horrific. So yes stress, anxiety and infections are all my relapse triggers. Please please please get NICE to recognise stress and anxiety effects MS. I could write a documentary on what happened to me.
Aren't these quality statements a bit behind the curve? What about NEDA and annual MRI scans?
Statement 1 and 4 and 5 are a bit vague and perhaps leave too much room for interpretation. Statement 1 – I'd like to see verbal information backed up in written format. This needs to be informative and adult to adult. I'd like to see a contact number given for an MS Nurse or at minimum a helpline to contact an MS Charity. I'd like at least 30 minutes for the consultation. I'd like some sort of action plan to be put together at least indicating what happens next – I guess this links to Statement 2.When I was diagnosed it was after one acute relapse. My consultation lasted around 15 minutes. I was told I had a few white spots on the brain and most people go on to lead a normal life. I was not told what type of MS I had or given any leaflet or contacts, just to come back in 6 months or before if anything else happened. I was devastated and terrified, The bottom had fell out of my world and I was left to get on with it. I Goggled a local MS nurse and rang in floods of tears. It took me a long, long time to get over that day. I was later diagnosed with PTSD. A little bit of kindness, better information (scrap white dots and refer to them as what they are) and some sort of reassurance that I had someone to go to for help would have made those first few weeks a little less dark.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. – What does this mean exactly? Steroids I'm assuming but not all relapses are considering disabling enough. I'd like to see this incorporate a holistic approach to treatment such as physiotherapy. I'd also like to see a relapse trigger an earlier review – statement 5. Statement 5. Adults with MS are offered a comprehensive review by a healthcare professional with expertise in MS at least once a year. I'd like this to include an MRI – particularly if on a DMT.
Statement 4. I've had relspes of numbness between legs and inner thighs that went after 3 weeks, no steroids needed. Although I do think more extreme numbness such as I have hear of MSers being numb from the waist down. I think steroids could be offered for cases like this as this I expect it would be quite distressing. Eye problems such as a VI nerve palsy and optic neuritis – a VI nerve palsy has the potential to be a very nasty symptom and cause hypervigilence, phonophobia and hyperacusis and might be best to treat with steroids as soon as possible, especially if the double vision is constant. CIS and diagnosed MS patients need to be warned as soon as possible that infections and stress may trigger relapses and make MS symptoms worse.
They are too vague and the suggestions above all work. I was lucky enough to have a good team at diagnosis and that made a huge difference from the stories above.I echo that annual MRI is missing, I am am fortunate and take BG-12, however, with monitoring (I only had MRI for diagnosis) I might push fr Alemtuzumab. I don't know and I need to….