Abbie, 31, is a mum of two who has two ‘invisible’ conditions Meniere’s Disease and Migraine Associated Vertigo (MAV).
As a result, Abbie suffers with severe migraines, tinnitus, constant dizziness and hearing loss in both ears. Her conditions have affected her everyday life, her career, and have even impacted her closest relationships.
“Every day is a battle. The things that used to be easy for me, like going out with my friends or taking my kids to the park, are so much harder now.
Abbie often feels nervous when going out in public, due to a general lack of understanding of her conditions and their symptoms.
“I find that people don’t understand the struggle I go through every day. It’s hard for most people to understand Meniere’s Disease without understanding my symptoms – dizziness, migraines, difficulty hearing. Sometimes the dizziness is so bad that I lose my balance. I worry that strangers will think that I’ve been drinking!”
Throughout the last 10 years of treatment, Abbie has had both good and bad experiences of care.
“When I first started having migraines doctors seemed either unsure or uninterested with my symptoms. My diagnosis with Meniere’s disease only came in 2014, after I had dealt with a bout of vertigo that lasted four months.
“I’ve found that care on the NHS has not always been consistent. Although I did receive great care from my complex balance clinic and a private consultant, which has helped me a great deal.
Abbie has ideas on how healthcare professionals can improve care for people with long term conditions.
“I’ve often felt that I was being rushed out the door during my appointments. I think that for health care services to improve there needs to be more ‘caring’ in care. I’d like the opportunity to talk to my doctor about my conditions and feel listened to. I make fewer appointments now as I feel that they don’t listen to me.
“I would also like health care professionals to provide more information at the time of diagnosis. Information on the condition, including how it will change day to day life, what support is available, and direction on where to go for more information has been lacking in my experience. This has left me feeling confused and frustrated.”
The Meniere’s Society is the only UK charity dedicated to supporting people with vestibular (inner ear) disorders. Louise Banks from the charity comments that Abbie’s experience isn’t completely isolated;
“We provide a busy helpline for those needing support and unfortunately, we do hear from people who come home from hospital appointments full of questions. Having a chronic, unpredictable condition naturally creates many questions for the person going through it, but some people find they just aren’t given the time to tell their doctor about each symptom they’re experiencing, let alone ask all the questions they want to.
We hear from people who feel rushed out of the door, having pinned a lot of hope on a particular medical appointment. We are keen for people with vestibular symptoms to get a confirmed diagnosis quicker and for them to be given the time to discuss the progression of their condition, all of the pros and cons of the various treatments offered, and anything else they want to cover.
We’d like to add that we also hear from people on the other end of the spectrum who have a really fantastic experience with the care they receive so we’d just like to hear this from more and more people.“
If you have an invisible condition, you may use health and care services regularly and know a lot about the quality of care. CQC need you to tell us about your care, good or bad. Your information will help CQC inspectors decide when, where and what to inspect and it could stop poor care happening to someone else in the future. Use our online form to tell us about your care.
If you would like more information about Meniere’s Disease, visit www.menieres.org.uk