What does an MS’er look for in their HCP team?
A few weeks ago I was speaking about living with MS to a group of healthcare professionals (HCPs), mostly trainee neurologists and MS nurses. It gave me the opportunity to speak to them about what I look for in an HCP, as a patient who is living with MS. ProfG was in attendance and he asked if I could turn what I said into a guest blog post. So here it is!
*Disclaimer: These are my personal views and I’m fully aware that everyone deals with their diagnosis differently so may look for different things from their HCPs*
It sounds obvious, but the worst thing is to feel that your HCP team aren’t approachable and you’re on your own. Small things like smiling, not clock watching, asking how someone is outside of their MS… they all go towards putting us at ease and building a good relationship. I don’t mind that my neurologist’s clinic often runs late because I know that once I’m in there, he gives me all the time that I need. What would really annoy me is being “pushed out of the door” when my 15 minutes is up regardless of whether I’ve discussed everything I need to discuss.
On the subject of time, remember to give patients time to ask questions. The last thing you need is someone to go home after an appointment and consult Dr. Google. I personally know someone who was given a likely diagnosis of MS, wasn’t told what it is, went home and googled it and managed to convince himself he was dying. Really not helpful for the patient or you!
Be available – keep lines of communication open in a “non-invasive” way
I want to be able to contact my neurology team if I have a concern, especially as I know they’re the experts and not my GP. However, I also know they’re very busy. Rather than taking up a valuable appointment, which might not be necessary, I like having an email contact or mobile number that I can use to speak to my neuro team. Sending an email, text or voicemail means I know I’ll get a response when it’s convenient for them, without feeling like I’m “bothering” a very busy team. Just please remember to respond!
Encourage the expert patient, don’t be afraid of them, especially with shared decision making
Gone are the days when the doctor sits there and tells the patient what to do and the patient just does it, no questions asked. Expert patients are on the increase. I’m one of them. Don’t be afraid of us! We’re not going anywhere and we could make your life easier. I’m able to tell pretty well when something might be my MS or not. That means I contact my neuro team directly, not my GP. That’s more efficient use of time and resources for everyone. Shared-decision making is also much better when a patient is informed. So I’d say encourage patients to be informed and help them to become informed. That way, you can have the confidence that they’re fully aware of the impact of decisions being made about their healthcare.
An MS patient is often not just one person. It’s a network of people. So, encourage carers, family members and those who have a significant role in the patient’s life to engage with you if necessary. Make the patient aware that they can attend clinic appointments with these people if they’d like.
Mind your language!
Again, it sounds obvious, but I’ve had people contact me after coming out of appointments and ask me to “translate” what their neurologist has told them, especially when it comes to test results. Please use plain language, especially at the time of diagnosis.
Look to your peers – the ones who have patient support, the ones who are leading the way and being innovative.
In the interests of protecting my personal information, I won’t say who my neurologist is, however, when I mention him to other people who have MS their reaction is often “WOW! I wish he was my neurologist. You’re so lucky! That HCP team is fantastic!” These are the HCPs you can learn from. Ask yourself why do their patients like them so much? What are they doing that is setting them apart?
Signpost, signpost, signpost!
You don’t have to know everything and you don’t need to have the time to convey every single bit of information a patient might need to know. But make yourself aware of where they can go for further, reliable information if necessary. The MS Society, MS Trust and MS-UK websites are always good places to start. However, you’d be surprised the number of MS patients I talk to who tell me their neurologist has never mentioned any of these organisations to them. It takes some of the pressure off you so why wouldn’t you do it?!
It’s a consumer market…..
Be aware that as patients we talk to each other, especially with the rise in social media. It’s a consumer market out there. I’ll be honest, if someone isn’t happy with their healthcare team they’ll go onto social media and ask around as to who WILL give them the type of care they want. Then they’ll move to a team that they’re happier with. So if you have patients consistently asking for things that others are getting elsewhere, maybe explore why and how their requests can be fulfilled.
AND FINALLY… Don’t take it personally if you just don’t click with a patient
I want to know that my neurologist is on the same page as me and has the same approach to my healthcare that I do. We’re in this together for the foreseeable future so I want to feel like we’re headed in the same direction. Sometimes there’s just a clash. Don’t take it personally. Life would be boring if we all thought the same, right?
Trishna Bharadia is a multi-award winning advocate for people with multiple sclerosis and chronic illness. Diagnosed with RRMS in 2008, aged 28, she’s used her experiences to raise awareness and improve support for people affected by MS and other chronic illnesses. A full-time Spanish-English translator, in her spare time she collaborates with organisations in the UK and abroad, including charities, pharmaceutical firms and nonprofits, to help improve patient experience and engagement. She’s a writer, blogger, vlogger and inspirational/expert patient speaker, as well as advising on projects, research proposals, and diversity strategies, and is a regular contributor in the media for issues relating to MS, chronic illness and disability. She’s a patron/ambassador for several MS/disability charities and is currently a member of “The Ozone” virtual round table for key opinion leaders across healthcare specialties. You can follow her on Twitter @TrishnaBharadia and Facebook www.facebook.com/trishnabharadia2015
6 thoughts on “#GuestPost & #ClinicSpeak: An MSer’s perspective”
Listen to your patients, they know what they are talking about.Sometimes, we stumble on things that help with a symptom – these are tips you could be sharing with your patients that can help with things you can't, but they won't get passed on if the HCP is just sitting there not listening and thinking they know better.The best HCPs have dialogues, not monologues.
I guess though many HCPs follow evidence based practice. If there's not much evidence of something working to help with a symptom they might not pass on the tips. A clinician's task is to interpret best current evidence from systematic research in relation to an individual patient, including that individual's preferences. But what is the value of anecdotal evidence. My view is anecdotal evidence in MS is important.
Excellent advice – I can only add that HCPs shouldn't underestimate the stress that patients suffer if/when (for example) their call isn't returned or their email isn't answered.Issues which healthy individuals deal with as petty, everyday annoyances can easily become the straw that breaks the camel's back for us. There's so much uncertainty around one's MS that you can feel that you're living on a knife's edge. HCPs should impact on that positively, but if communication breaks down for whatever reason, the MSer can be left in a very bad place.
Agree with both the above! Thanks for reading and sharing your views! -Trishna
A great piece – I just hope my neurologist reads this as there is plenty he could learn from it! I don't know whether it is because I have PPMS (and therefore cannot have treatment) that my neurologist shows no interest in how I'm doing, but I always leave my appointment feeling worse than when I went in.
Thanks Sarah! This type of attitude from neuros concerns me when there's trials being undertaken for possible treatments into PPMS. If people aren't able to have conversations with their neurologist how are they going to know about the possible opportunities out there and be given the choice to participate? I know some people who have PPMS (and SPMS) who haven't seen their neuros in years because they're told "there's nothing we can do" but that really isn't the case nowadays!