I am currently the UK youth ambassador for International adolescence health week (IAHW). As part of my role with that, I've chosen to try and create a poster. This poster will focus on 'top tips for medical professionals. My hope is to share and spread awareness that young people do get chronic conditions. I myself with diagnosed with Lupus and RA at 15. My experience was awful with my local hospital. I'm hoping just some top tips may then make it easier for young people in the future to be diagnosed.
So my ask to you lot has anyone got any tips or things they'd like to contribute towards that? I know a lot of people were diagnosed as youngsters and adults. Any tips you think would help would be amazing!
I am also trying to gather some small quotes even just a few words about why it is important to spread awareness of young people getting chronic conditions. I'd love to have some patient quotes if possible. I can attach your first name to the quote or leave it totally anonymous. I want to share these during the IAHW which is the 19th - 25th of March.
It would be great to have some contributions for either the poster or quotes. You lot on her have been a major part in my lupus journey over the years. I never imagined I would get a chance to have the opportunity to provide a little bit of awareness for something like this.
Thanks in advance!
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LouLamb
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It's amazing that you're doing this LouLamb.I talk about Lupus and spread some awareness hopefully about chronic illness, as I was the child that 'didn't fit the pattern'. You have to grow up fast, you loose friends and family, and you get tossed around again and again. (And still am, but I have hope in tomorrow).
I also research prevention, treatment and more alternate methods that may benefit those whom have acquired it, as early diagnosis is key in reversal, and it's amazing what we can sort, reverse and prevent with pertinent diagnosis.
For me, life seems so long, and painful, but my motto/mantra is particular to me. It's about personally finding that drive to live, that passion that will and focusing on it, even if it seems impossible...
I lost sight for a long while, especially because others disregard you, palm you off without a second thought, and medical professionals look at you like a hypochondriac. But my personal mantra/focus was; until my dying breath may I follow the Lord, by pursuing medicine, wherever it takes me, however long and however hard, and to show love and compassion wherever I go, and to all whom I come across.
I work, somehow, tis anyone's guess. They said my time was up due to multiorgan failure from lupus in 2012 and I am still surviving today. Today I work in Neonatal intensive care, before in emergency, and soon, God willing, 🙏, in GP land, to help diagnose, manage and treat and form new referral pathways to ensure others have a road to recovery, that may not lead to resolvement, but offers hope, direction and support for those with chronic illness, that are often unheard.
So all I can say for that child, like me, left alone, unbelieved, mistreated, abused, with such a daunting road ahead that still looks day ting now at times... 'still follow your dreams', 'dont give up'. I don't regret the cards I've been given, I am more thankful and feel more blessed by the simple truths and beauty of what life has to offer.
I promise you, this long message is over ☺️ not sure any of that is useful, but I am always willing, if you need anything anytime peeps.
"You don't look sick. "This has been said sadly to me many times In my life. And still is to this day, Professionals, and the public need to understand us better. As PMRpro wrote, listen to your patient, as we are all unique. Best wishes on your new role.
Hi, thank you for sharing your story & your role in making people aware of chronic illness. One rheumatologist told me that there could be a room full of people with lupus but nobody would have the same symptoms. I have lupus & scleroderma along with pulmonary fibrosis, oesophageal problems, raynauds…. I have also been told that having both lupus & scleroderma that I am lucky as having both illnesses, my symptoms won’t be as severe as having just the one illness. I dread to think what I would be like if these symptoms aren’t as bad as they could be! 😟 I hate it when drs say ‘your tests were good’, ‘what usually happens when you have a flare or feel like this?’ Another bug bear is when people say ‘hopefully the medication makes you better now’ along with being told about how they, or someone they know, has breathing issues or arthritis so they know just how I feel and then proceed to tell me what helps & will make me better!
Congratulations LouLamb , i am not surprised you have been offered this role , you will be wonderful in it 🤗.
I think the medical staff should ask the young patient if they have certain symptoms such as pain and fatigue and not just ask them how they are feeling. My son has Lupus and he is not great about talking about how he is feeling, he needs to be asked specific questions, blood tests don’t tell everything!
That is a great one! I know for me as a young person I would just say I'm alright but if asked specific symptoms I would have probably been more truthful.
Hi. This is fantastic LouLamb. The more people that raise awareness the better!A simple quote which might be good for your poster - "You look so well " this has been said to me too many times. It has been said with the right meaning - people assume by saying you look well it will cheer you up. Initially it did but after it being repeated to you numerous times you begin to feel that people do not see the "hidden pain inside". In the end I had to tell my friends and family to stop saying it! Which once I explained to them why most of them understood why it upset me and stopped.
Steroids and other medication make your skin look healthier and the dreaded lupus butterfly rash makes pale people (like myself) appear rosy and well.
Good luck with your educational poster. I hope this may help.
I would love to use that as a quote the 'hidden pain inside' for one my instagram posts during the awarness week. Would that be okay with you. I can keep it anonymous and just write Lupus Patient. Or I can add you first.
No worries if not.
I think that is an amazing way to sum up how a lot of us can be feelings.
Would you mind if I used this as a quote for my social media posts? The top line you wrote. I can keep it anonymous by writing Lupus patient or can add your first name.
I love sharing with this group. I say it a lot but I truly would not be achieving without you all!
of course you can use it! I’ve don’t mind name or anonymous. It unfortunately is a saying I’ve heard many times for myself, daughter and granddaughter over the years. Now I get it’s your age! 😂
Hey LouLamb. I’m not sure i like being referred to as ‘you lot’. But anyway. You were so young when you developed RA. I was 21 when i started getting RA symptoms. (I’m 51 now!!!!) I actually caught chlymidia from my partner. (He was the first man i’d ever slept with. (Nice souvenir). I started getting agonising pain in my right big toe & left shoulder. Then i woke up one morning & couldn’t open my left eye. It was as if someone had put superglue under the eyelid. I thought i was going blind! I saw my optician that day. She told me to go straight to hospital. She said i had Iritis. I was panicking of course. I had to have a steroid injection in the eye. (The first of many, many injections & procedures over the yrs). This then affected both my eyes & i’ve since developed Glaucoma. I also have arthritis in all my joints. But i’m very lucky. I have an Infliximab infusion dvery 6 weeks at UCLH. I’ve been having this treatment for 18yrs. I can’t walk without it.
I am a retired nurse and was in my Fifties when diagnosed with SLE.
When my GP said she suspected SLE, I laughed at her and said that I was the wrong sex, wrong age and wrong ethnicity to be suffering from SLE. She said
"Never say never in medicine."
She was dead right, further tests confirmed Lupus.
Yeah, keep an open mind and listen to what your patient tells you.
Hi Lou Lamb. It’s great you are doing this. I would say ‘Listen to me and BELIEVE what I am saying’. I’ve been told so many times that what I’m describing is very rare and ‘unlikely’ to be what’s wrong. I was eventually diagnosed by a young, keen, out to impress Registrar and I’m so grateful to her to this day!
Good luck and I look forward to hearing how things go
That’s brilliant, I’m glad you’re doing this! Sorry this is super long, but I’ve sadly had a lot of time in waiting rooms in my late teens and twenties to think about this. I think most of these apply to adult patients just as much as young people.
(A) Try to see things from your patient’s point of view. You might see “patient not compliant with drug regime”, they see: side effects which are interfering with their ability to be “normal” and a drug that doesn’t seem to be working yet. Listen without judgement before you advise. If the patient is bothering to tell you about it, it’s something that has bugged them repeatedly. For primary care in particular, recognise that the fact that the patient has booked an appointment (which can be challenging in itself) is not something they did on a whim and take their concern seriously. Chances are if they could be somewhere else, they probably would be. No young person (or even adult) wants to be hanging out in a doctor’s waiting room, even if you do have a brilliant bedside manner.
(B) Be realistic about what is achievable but don’t depress your patients. (Easier said than done). Be willing to admit when you can’t fix things or you need help - especially around hard to treat issues like fatigue which often come as part of a chronic illness. This is as important for GPs as it is for specialists. Things I heard at my diagnosis that my doctor probably thought were helpful but really weren’t: “you can probably have a normal life”, “most of my patients with lupus are still alive” and “80% of people survive two years after diagnosis”. What would have helped? 1) Providing details of an organisation that could help me find support for people my age(ish) with the same condition (no patient should leave without this if they have just been diagnosed) and information about the condition 2) Being honest and admitting it is a massive downer but we can treat it, and it will take some time to process the news and this is totally normal. 3) Be mindful that most people (including young people) only know the word “remission” in a cancer context, so if you use this word be clear to explain the difference.
(C) Learn from other specialties who care for young patients well (as shown by patient feedback). I was recently diagnosed with another non rare chronic illness (Crohn’s disease) and the contrast in bedside manner from the clinical staff and information provided at diagnosis has been astounding. They see a lot more younger patients than rheumatology (and to be fair it is a more common condition) and are good at involving their patients in their own care and working in multi disciplinary teams. My doctor makes me feel like I am part of the team who is responsible for getting my illness under control, not just a vessel for it who has to follow whatever instructions they dictate. I’m not saying all IBD departments are perfect, that’s not the case, but we should recognise clinicians who do this well and use it as an opportunity for learning.
(D) Get your patients to fill in short questionnaires before the appointment or while they are in the waiting room, which should include some questions about their mental health and quality of life. A lot of people are much more honest on a form than they will be face to face or on the phone, and this can help you identify patients who would really benefit from some mental health support. Mental health referrals should be routinely offered at diagnosis of chronic conditions (especially remitting-relapsing ones) but routine triage should be used to identify the most urgent cases if resources have to be prioritised. Be mindful that if a patient has asked for mental health help, sending them back to their GP may stop them from reaching out again, so please have the courtesy to instruct the GP to make a referral if you can’t yourself. All patients should also be provided with the “Shout” organisations text line (giveusashout.org), so they know where they can find non judgemental support if they need someone to talk to while they wait for clinical help (because we recognise that it takes time for referrals to go through). (Shout is an SMS service alternative to the Samaritans).
(E) Set a a goal with your patient - medical or non medical. This will help you remember that they are a person and not a “case study” and will help them remember that you are on the same team with the ultimate goal of keeping them healthy and happy. They don’t necessarily have to be goals that you can directly achieve on the medical side. E.g. one person’s goal might be to get a 2:1 in their first university assignment. Your role as a clinician in that would be helping ensure they are well enough to attend all lectures and seminars for that module and complete the assignment. It’s obviously on the patient to complete the assignment but you can help by checking they are taking their meds, adjusting doses appropriately and providing advice. Quality of life and mental health are so often neglected in appointments due to time constraints, and it can be draining for both the patient and clinician if you are constantly watching the clock. Being able to look back on those goals that have been achieved will also help you and the patient to stay motivated if it’s taking longer than anticipated for treatment to get the illness under control.
(F) This is probably one to work on in tandem with support organisations but think about putting together material or making it available in clinic waiting room areas that shows how to cope with education and / or employment alongside chronic illness, as well as material about benefits if needed so that if people want to continue their education or work, they can do, and if they can’t, support is available. Share case studies if you can, of people who have managed to complete their A levels or get to university / start an apprenticeship despite their illness and how they coped. Hearing from lived experience is so much better than a generic sentence in a leaflet that says “many people are able to go to university despite their illness”. (This is also something I believe adult clinics should do too, even if you are older, if the first leaflet you find is a retirement or benefits one, it doesn’t fill you with optimism).
(G) This goes back to (A) a bit. I recognise that being a health care professional can be draining at times and compassion fatigue and burn out is very real, and you are only human like the rest of us, but do whatever you need to do to park that before you start clinic. What to you may be a rough morning, might be the 20 minutes with you that a patient has been waiting for for weeks. Yes, they might be a bit grouchy, but they may well be in pain (despite appearances) and may not have another appointment for months, so please do your best to listen and treat your patients how you would like to be treated in their place.
Thank you. These are great points. You definitely have spent a lot of time over the years in appointments and waiting rooms. Lots I can relate to myself. Do you mind if I pull some of these for quotes. I would keep it anonymous by saying 'lupus patient' or I can add your first name? Let me know. Once again thank you!
Its amazing what your doing loulamb!. A tip for a poster would be keep it as simple as possible as the messages are clearer then and have more impact. I'm someone whose been ill since teenagehood so my comment to a sufferer is 'Never Give Up'.
A comment to a doctor is 'Keep an Open Mind and Don't Judge'.
I hope you like them. I'm sure you will get a lot of good responses. Look forward to seeing the finished poster. Take Care. Xx
I am 20 years old and I have dealt with several medical professionals who have downplayed or fully discounted my health problems, so I definitely agree with you that there is a need for greater education about younger patients.
I'm not sure if this has been said already, but perhaps something along the lines... "Just because it isn't common, doesn't mean it isn't possible/true".
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