MS Trust Conference 2024
It doesn’t take a neurologist and a nurse specialist to manage someone with MS; it takes a healthcare system and society to do so.
The 2024 MS Trust Conference starts today. This is the main conference where MS Clinical Nurse Specialists receive their CME (continuing medical education). I am participating in several events. You can download the programme here.
Seminar - Ageing & MS
Firstly, I am giving a seminar on ‘Ageing and MS’. This is important because as we get better at diagnosing and managing MS, the proportion of people with MS who are older is increasing. In the seminar, I will review the impact ageing has on the diagnosis, profiling, monitoring and management of MS. I intend to use case scenarios to illustrate these points. I have set the following learning outcomes for the seminar:
How does MS present differently in older people with MS?
How does age impact the prognosis of MS?
Monitoring MS in the older patient with MS
Managing DMTs in the older patient with MS
The holistic management of MS in the older person with MS
The intersection of MS with other age-related comorbidities
Will rejuvenation therapy become a reality in the management of MS?
Managing expectations in older people with MS
Have I missed anything important?
You can download my slides here.
MS-Selfie survey and poster
I will present the data from our MS-Selfie survey on using DDAVP. The poster is titled ‘Dehydration as a misused strategy to manage bladder dysfunction in people with multiple sclerosis’, which you can download and read. I hope it will act as a catalyst to improve the management of MS bladder dysfunction and prevent potential complications associated with its management, under-management, or mismanagement. If you haven’t read my recent case study on this, please do; it is sobering. As part of this initiative, we will have a survey on bladder management for HCPs. The results will guide what we do in the future to improve the management of this often-overlooked problem in MS.
MS-Selfie Infocards
We will be hosting an MS-Selfie stand where we will be launching the MS-Selfie Infocards. Yes, we will have physical packs of cards to give away, and we would like to get further feedback on their utility in clinical practice from the HCPs attending the meeting. You can download the cards in A5 format (2 cards per page) for your practice. We are still looking to improve these, so any comments are welcome.
Town Hall Debate
I will then participate in the closing session on Tuesday with a Town Hall debate entitled ‘Challenges following consultations: diagnosis to advanced MS, keeping the relationship, apologising for past consultations and healthcare interactions’. I am the only neurologist on the panel. This may be a problem. When we did our medical gaslighting survey, which is now published, it was clear neurologists were the biggest offenders. This debate will likely focus on the initial or first consultation. I have written about this before, i.e., ‘’Diagnosing MS: what to expect?” (10-March-2023). For me, the consultation when the patient is given the diagnosis is the most important as this is the one most likely to cause post-traumatic stress (please see: ‘How common is post-traumatic stress disorder in people with MS?’, 4-Sept-2021). I am aware that some people dread being told they now have progressive MS. But in my experience, most pwMS who are self-monitoring and self-managing their disease know when they are getting worse or have smouldering MS and don’t need an HCP to break the news. Do you agree?
I have also discussed relationships in the past and the need for the HCP-patient relationship to become a partnership. There is only so much MS HCPs can do with the constraints of the NHS, and hence, there is a need for pwMS, their GPs and their local services to engage with the holistic management of MS. An example of this would be bone, foot and metabolic health. MS services don’t have the levers apart from signposting their patients to the services to help them in these three domains. Similarly, HRT in post-menopausal women with MS. We can recommend it, but we can’t prescribe and monitor HRT. Preventing urinary tract infections and managing bladder problems are other examples. We can help, but we need community-based continence services to be involved and, more importantly, reactive to the needs of patients. This is why it doesn’t take a neurologist and a nurse specialist to manage someone with MS; it takes a healthcare system and society to do so.
Any comments and recommendations for the debate will help me. I will put my head above the parapet; who knows what will come flying?
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General Disclaimer
Please note that the opinions expressed here are those of Professor Giovannoni and do not necessarily reflect the positions of Queen Mary University of London or Barts Health NHS Trust. The advice is intended as general and should not be interpreted as personal clinical advice. If you have problems, please tell your healthcare professional, who will be able to help you.
Thank you for being a neurologist that is really listening closely to pwMS, it makes an enormous difference - as part of the shield for whatever comes flying over the parapet!
I’d agree with it taking more than a neurologist and MS nurse( although I don’t seem to be able to speak to my MS nurses without a 5 month delay- they can’t even manage a holding email managing expectations in response to mine!), however, we’re far from achieving this sadly. My GP’s are less than pro active, and when I do have to contact them, they’re not interested in my MS. It’s frustrating and rather sad that we have to be in this situation where the person that is ill is having to drive, beg and chase everyone and everything. Sad, and worrying for our futures. It takes a long time to change a culture (7 years I believe ) and as I don’t see any will to change- I’m not sure I hold out much hope. We can’t keep using short staffing and the government (for not throwing tax payers money at it)- it will take excellent and inspiring levels of management centred on patient care to change this. Also, not just MS suffering from this situation (apathy)I’m sure. It’s worth saying that not all neurologists are interested, or engaged in patient care either, I had one tell me “I’ve patients much worse than you”- that was helpful information……
For a long time, I’ve hoped that the MS societies would have a list of places and people we may be able to get help from( regional variations accepted) . OT’s/social services/physios are just the same in levels of competence/interest in my experience. I have had help( but actually made my toe worse!) from nhs podiatry but initially the GP surgery said it wasn’t available to me. We need to be warriors in many ways when we have systemic illnesses. Sometimes we don’t have the energy to be warriors…….