“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.
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 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).
“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:”
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
I have PPMS. I read posts like this, most MS posts in fact, and feel this stuff has nothing to do with me.Are there other PPMSers that feel marginalised just by virtue of their disease pathology? It's kind of like how working class black people of America must feel in the current climate.
Re: "I have PPMS. I read posts like this, most MS posts in fact, and feel this stuff has nothing to do with me."I have prepared a specific post and survey to address your point. http://multiple-sclerosis-research.blogspot.com/2015/07/clinicspeak-what-about-me-i-have-ppms.html
Statement 1. What about adults with CIS are they supported by a consultant neurologist? Are they offered support by an MS nurse ? Or is it only when they are diagnosed definite MS there is the funding to see an MS nurse. It is important that this is clarified otherwise it is not helping people left in limbo, there needs to be alternative support available. CIS is probably the stage when people are beginning their own education about MS. I didn't know what MS was when I was first told I had demyelination on my brain. I justified so many of my symptoms on other things. I even thought my numb toes were due to frostbite… I had no idea at the time it was the MS.
Re: "Statement 1. What about adults with CIS …."I think we should include CIS with MS; it would be unfair not to given that most CISers go onto develop MS if they don't already have the disease at presentation.
I agree that CIS must be included with MS – CIS is really only the first IDENTIFIED relapse – there may have been previously unidentified episodes. Not everyone has clear and acute relapses which trigger the diagnostic tests which result in a diagnosis of MS, and I feel for those people who are left in limbo land waiting for a "second" acute relapse before anything is done. (No – I am not one of them, but I am someone who has never had defined acute relapses – which is why it took many years of declining function before I even got to see a neurologist and have an MRI, and by then the damage was quite severe)
Prof G your additional statements imply that all NHS MS Service providers have to have systems in place to count events. Is this reasonable given the current constraints we have in the NHS?
Re: "Prof G your additional statements imply that all NHS MS Service providers have to have systems in place to count events. Is this reasonable given the current constraints we have in the NHS?"If the cardiologists and stroke physicians can do it why can't we? This sort of data is available in Scandinavia, why should we accept anything less? Quality standards are usually aspirational; if you set the bar too low they act as the lowest common denominator and MS services will remain poor. All I am doing is trying to raise the bar and to push the envelope a bit.
I've seen first hand the difference between Stroke services and MS. We sure are the poor relations.
Not in my experience anoyn@10.34 but I think so much depends on where you live. I'm in London with access to an excellent MS nurse in the community, the neuro-response telephone services with a rapid (ish) triage service from the National Hospital for neurology. A good MS neurologist, a good GP who knows about MS, good physio, psychological and OT services. It could always be better but having known two people who suffered strokes that were left to get on with it after 6 months of treatment (it was far from easy), so I feel quite fortunate. It doesn't mean it is easy and I need to push sometimes but a lot easier than it used to be (MS for over 30 years), in the 80s/90s MS services were pretty abysmal. Even much of the last decade was a bit iffy, but things were starting to change. Like with any serious but less known illness, it is unfortunately up to us to help change things in whatever way we can. As Charlotte Church said 'I'm as mad as hell and I'm not going to take it any more'. And that goes for people with MS. From lobbying your MP, involvement with your local MS society, helping shape social and health policies with your council (one of the things I'm doing), or even just keeping your friends and/or colleagues informed about the realities of MS or a small donation to ProfG and team's run for the MS Trust (it all adds up), we can try to make a positive difference.
Anon 11:33 yes I was lucky enough to be diagnosed by Prof Macdonald at the National in the '70s. Recently I've been unfortunate to have two close family members in the different stroke units. I left the National as when I had a relapse it was difficult to get seen. I'm not in any way knocking the hospital it was under huge pressure. Sometimes, patients would sit on coffee tables in the clinic waiting room, because they'd run out of chairs. I dare say after 1997 things have improved You are extremely fortunate to have access to services, but although I live in London and have an excellent GP it doesn't work for all of us.
Hi anony @4pm, yes I understand my experience seems to be not the norm, I realise how fortunate/lucky I am and want to help make it more the 'norm' for others with MS. London is bloody big place so it doesn't surprise me that services are different in different boroughs. It's also often not easy to find clearly signposted help/support.As I said,I feel we can all do something to help create the change people with MS need and deserve. No matter how small your action may seem in the grand scheme of things, it will help to move/push things forward. No one but the person with MS themselves can totally understand what this condition means to them, not even others with MS, but we do share a similar goal to get rid of this wretched disease sooner rather than later. It is like a many-headed dragon, a hydra, that needs to be slain from different angles to chop all the heads (medication, research, health services, social policy to name a few). It can't all be done at once but a fair strategy would be to choose what you feel needs addressing/have knowledge or experience of and dedicate however much time you have to helping to do something about it. PS: the National is under more pressure since 1997 but the appointment waiting area at Basil Samuels is a lot better the times I've been there 🙂
Sorry forgot to mention, I do lobby my MPs and local councillor and one MP met with my local trust CEO, after which I received a written apology. It is constant, new governments, new MPs, new policies and new priorities.
Statement 2 and 5 it mentions healthcare professional with expertise in MS. Does this mean MS nurse?? I guess it would say MS consultant neurologist if that's what it meant. I feel it's important for MSers to be seen by an MS neurologist rather than non-MS neurologist.
Re: "Statement 2 and 5 it mentions healthcare professional with expertise in MS."I suspect either a nurse or MSologist. You have to remember that there are shortages of both MS nurse specialists and neurologists in the UK; hence the OR rather than an AND.
There is nothing for SPMS. We are supposed to have access to physiotherapy, but end up on an endless waiting list. Then, when we have falls and have excruciating pain, we are put on another waiting list for treatment. We know there are no treatments to cure SPMS and PPMS, but at least do something to help us. We are the forgotten people.
Re: "There is nothing for SPMS."I agree with your points, but if we are to approach the treatment of MS holistically we need to think about the whole disease trajectory. We look after SPMS. I agree that once MSers become bed bound it gets more difficult, but that is no reason not to try. In addition. modern technologies may allow easier access to bed-bound MSers.
I think you may all be missing something here. We have worked full time coped with our illness until we develop SPMS, but does anyone ask us how we managed our MS? The Medical profession could learn something. I welcomed the chance to complete the MS questionnaires, but they are quite rigid. Is anyone interested if we are not on a drug trial. We discuss what we do amongst ourselves, my GP even asked me to visit one of his patients. This is just a comment, that maybe when you give your RRMS patients DMTs you'll know how the disease compares with our experiences. I would hate for them to get 40 years down the line and be SPMS. I'm very happy that no young person should be told "go away and try to lead a normal life" anymore. Please don't ignore us. We need help to delay us becoming bed bound.
Prof G Statement 6 is missing?
Re: "Prof G Statement 6 is missing?"Corrected. Thanks.
Statement X: all RRMS patients should have their B cells removed at time of diagnosis. What is the downside of an extreme sending statement like this?Aidan
Re: "Statement X: all RRMS patients should have their B cells removed at time of diagnosis. What is the downside of an extreme sending statement like this?"The downside of long-term B-cell depletion in MS are unknown. I suspect it may result in low immunoglobulin levels. However, these could be replaced with pooled human immunoglobulins. We do the latter for several inherited immune deficiency disorders. Before we adopt such extreme measures can I suggest we wait for the results of the ocrelizumab trials and the extension studies? The latter will provide invaluable information on long-term safety.
Re: "Before we adopt such extreme measures can I suggest we wait for the results of the ocrelizumab trials and the extension studies? The latter will provide invaluable information on long-term safety."There is the 11-year extension study of rituximab in RA, which provides higher-quality long-term safety data than any MS study ever published. I'm not sure that I understand concerns about safety, at least with respect to rituximab.
Sorry, long comment7. Yes, services must have good data about the number of people with MS but how do you capture details on people with PPMS/SPMS who may not be followed up anymore as they are not on DMTs and/or GP happy to deal with UTI, pain, spasm problems etc? Your own clinic may be seeing them still but they may be discharged in other parts of the country or may have decided the visit to hospital is not productive enough. There are also the people with severe problems/bedbound etc who may be attending hospital regularly for intercurrent infections etc on the acute take who are not being seen by the neurology team. Should these people be covered by the service?8. Dodgy grounds in some ways. Can see the drive but could it lead to the situation that happened some years ago when GPs were pursuing women to get cervical smears done so they could meet their targets? 9. should be clinically driven, not target driven10. are you having a laugh? So many senior neurologists do not believe this is helpful and will not MRI even if you are having a relapse. "Relapses happen…..MRI do not correlate well with clinical activity…….the number of lesions does not matter…….". Are there the resources to do this (along with the new 2 week cancer referral criteria)?11. how will this be achieved? Encouragement of early reporting of any problems to MS clinic or GP? But this is still unscheduled though maybe less of an emergency if you catch a UTI early. Will my MS stop relapsing in an unscheduled way because there is a target? Or if I am on decent DMTs will I be getting less unscheduled events? Is that what is meant by this?12. yes, much more proactive management needed but possibly clear guidelines issued to people with MS & their primary healthcare teams would be better than a target. Less acceptance that this is just part of the illness and a move to looking at each individual to see what can be done to improve the situation.12. yes, I suspect that bone health has not made it's way into mainstream MS care yet14. yes, but can targets be set yet? Will they not be completely fabricated targets? Is there the information about this? Where are these people in the system?15. No. Please not targets. The commissioners already believe that if people with long term conditions, the over 80s, all people in care homes, all people who 'you would not be surprised if they died in the next 12 months' SHOULD have advance care directives. Not gently explored or offered, but should have. Mainly on the basis of the assumption that these people will not want active hospital management and that can reduce hospital admissions and fulfil the other target of more people dying at home or in a nursing home not hospital. To be open about thoughts on future care and state of a person's illness and giving them a chance to talk and ask questions is good and is quality care, making this into a target is just processing people and ticking boxes.Please could I also add a plea for early physiotherapy assessment and exercise plan (if wanted). Vital for confidence, mobility and retraining the brain. I want to see a physio early, not just for a Zimmer frame.
Totally agree with you Sue. Two week cancer referral is a myth. When neuros send you for an MRI the wait is months, not helpful when you are in so much pain. Bone health is hit and miss. Physiotherapy, it may never happen. Sitting for four hours in a walk in clinic out of hours waiting for antibiotics. Have experience of all the above. I can't keep going to my GP chasing, it's too exhausting and frustrating.
I've been on Copaxone since diagnosis 3 years ago and completely NEDA. And yet I know the odds are one day I'll have an attack. And I know from experience, that I'll probably be left with some deficit because of that attack. As such, I think Aidan's suggestion is outrageous, and exactly right.
Good luck with the annual MRI. I've heard the leading neurologist in my area say that he didn't do them routinely – he seemed to suggest it was only relapses which show ongoing activity that would impact treatment. Having read this blog, I'm very in favour of a regular MRI as I want the option of moving up the treatment scale asap if the DMT I'm on isn't working.I also think that people diagnosed with CIS should be covered. At my (private) appointment where I was diagnosed with CIS and an 80% chance of another in the future, I was basically told to go away until if and when it happened again or if I wanted to discuss treatment options. To be fair to the neurologist, he did then send me a heap of CIS information in the post which once I'd read, I went back with the specific aim of finding someone who would agree to put me on a DMT (I was advised to head to a different NHS Trust).
Its important MSers if they would like to can see an experienced CBT therapist who has knowledge of MS. I am lucky to have found one, after persevering. The sessions are helping me with anxiety and depression, and how I think about things in my life. They understand how MS can effect me.
Re: "Its important MSers if they would like to can see an experienced CBT therapist who has knowledge of MS."Until the NHS invests in CBT therapists, this goal is unachievable. We also don't have access to CBT therapists via our Trust; they are all community-based with long-waiting lists. I agree in principle this should be a metric, but at present it aspirational as the evidence-base for CBT in MS is relatively weak. The best evidence for its effectiveness is in the general population. On another note what about mindfulness therapy? It got into the last NICE MS management guidelines.
Yes, Mindfulness therapy in ways is connected to CBT. MBCT (mindfulness based cognitive therapy). MBCT is an integration of MBSR with Cognitive Behavioural Therapy (CBT). MBSR is mindfulness based stress reduction. This webpage and short video explains it. http://www.bangor.ac.uk/mindfulness/about.php.enThere's a trial currently of MBSR for MS. Stress and anxiety have effected my MS and I feel it's extremely important stress and anxiety is managed in MS. This should be a priority in NICE MS management guidelines.
Statement 4 needs more clarification. Treatment for relapse as soon as possible but with 14 days of onset of symptoms. A list of possible treatments is needed. Steroids but what else?
Re: "Statement 4 needs more clarification. Treatment for relapse as soon as possible but with 14 days of onset of symptoms. A list of possible treatments is needed. Steroids but what else?"Interestingly, steroid are not licensed for treating relapses. If i recall correctly, only ACTH, a hormone that stimulates the adrenal gland to pump out steroids, is licensed for treating relapses. The lack of clarity means linking this statement to a measurable metric may be hard. ReplyDelete
I think this should include a holistic take, e.g physiotherapy.
Statement 9. The proportion of MSers having annual MRI monitoring should be above x% (to be determined).Yes please. What would be a reasonable target? I'd like to see all people on DMT's offered annual MRI's.
Can individuals add their comments to the consultation or does it have to go through a stake holder?
My interpretation is it has to go via a stakeholder.
I thought the same. Are other stakeholders running a consultation? It's brilliant you are asking for peoples views like this but not everyone visits this blog. The more awareness raised the better. I really hope you get good response.
I think statement 2 should be with a neuro. Diagnosis day can be hard to take in and its often another 12 months before you get to see one again.
Target for people to sign up to an advanced decision? I'm not sure what the reason of benefit of this is. I have one but its personal choice. I certainly would not want the idea being pushed on me.
Re: "Target for people to sign up to an advanced decision?"Yes, it needs to be discussed with them. They can either sign-up or not sign-up or sign-up to being unsure and to delegate any decision-making to their families or the attending medical staff. The issue is about having the conversation, rather than not having the conversation.
Perhaps not a conversation to have on diagnosis day.
Should the target be a % of MSers have had this discussion then rather than a target based on uptake.
And you wonder why people go abroad to seek HSCT and other therapies?