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This newsletter is designed to be informative, helpful and just a little bit inspiring! ✨
Our May edition contains some good news about disability benefits in the UK, (yes, really) your ‘how to be heard’ tip of the month, some reading onEhlers-Danlos Syndrome( EDS), tips for Forest Bathing and being in nature, and tips to get the most from a service like Health Heard!
Globefox Health is now HealthHeard.com!
This new name came out of our conversations with people with complex health issues and hidden disabilities, and our understanding of the barriers people face in getting the healthcare they need.
It’s also a call to those working in healthcare to look out for people like us and to consider our needs! Look out for the #GetYourHealthHeard tag across our socials and beyond.
Good news!
You may have seen in the news that it is becoming even harder to claim disability benefits in the UK. And now there are further changes being proposed to the benefit system
But we are being given the opportunity to have our say - and there is a lot to comment on!
https://www.gov.uk/government/consultations/modernising-support-for-independent-living-the-health-and-disability-green-paper/modernising-support-for-independent-living-the-health-and-disability-green-paper
As part of these many proposals, disabled and sick people who claim benefits are being presented as being lazy and a burden on the state. We are outraged at this, especially as
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many of us who claim disability benefits are working,and pay taxes!
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we under claim benefits - by billions https://www.disabilityrightsuk.org/news/missing-out-%C2%A319-billion-benefits-support-goes-unclaimed-each-year
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What is spent on benefits is saves spending on health services further down the line
And whatever our circumstances, benefits are paid out of our public money, and shouldn't be rationed by arbitrary rules. Let’s not let politicians forget that they work for us!
Help to be heard
What can we do to make sure that our health concerns are more likely to be heard by our doctors and other people who look after our health? Here’s a couple of strategies that we know will help.
Come Prepared
Before your appointment, make a list of the symptoms you're experiencing and any questions you have. This will help you stay on track and make sure all of your concerns are addressed. If you can show what symptoms are happening and when, and if anything you do makes them better or worse, even better. It can be hard to know what questions to ask, however starting a clear picture of your symptoms helps your doctor to work with you to ask them together!
Be thorough
Be specific on what is bothering you most, and how it affects you, but don’t forget to mention other issues or problems. Not only does your doctor need a complete picture, but they may spot something that also needs urgent attention. Some clinics have a policy of 'one issue per appointment'. Don't assume that this applies to you. It's often possible to speak about several issues at one time, and even to book a longer appointment, so long as your needs are made clear. Our Health Story reports are ideal to help with this!
Also, if you are worried about an upcoming benefit assessment, Health Heard can help. We’ve been there! You can book one-to-one support here.
Please note that the service is underdevelopment, and we can’t guarantee that your claim will be accepted. But we will support you to give as much relevant information as possible!
And EDS UK have great specific advice for people with EDS looking to get diagnosed too.
https://www.facebook.com/share/ftSmjHegMAWFYhZv/
Ehlers Danlos Syndrome?
Some people seem to have many more health issues than others. But they don't fit into a pattern that makes sense by commonly diagnosed conditions.
There is new research that states that up to 20% of us have joint hypermobility, and at least 0.3% of people have Ehlers Danlos Syndrome* . Both conditions are often missed, so it could be even more.
The NHS describes EDS like this:
“Ehlers-Danlos syndromes (EDS) are a group of rare inherited conditions that affect connective tissue. Connective tissues provide support in skin, tendons, ligaments, blood vessels, internal organs and bones.”
https://www.nhs.uk/conditions/ehlers-danlos-syndromes/
While the information on this page is useful, we have to question if EDS is really that rare.
And there are serious health issues that go with EDS that aren't mentioned on this page, and that are not taken seriously by the NHS yet, so we have a long way to go!
More info about the health issues that go with EDS can be found here:
https://www.ehlers-danlos.org/what-is-eds/information-on-eds/conditions-linked-to-eds/
And this charity is looking at how EDS and neurodivergence are connected, and interact.
https://www.sedsconnective.org
Perhaps you or someone you know are affected by these conditions? While we shouldn't diagnose ourselves by what we read online, this month there will be a lot of useful information shared that may be able to point you in the right direction.
Look out for these hashtags:
#MyEDSChallenge #MyHSDChallenge #zebrastrong #ehlersdanlossyndrome #ehlersdanlossyndromeawareness #edsawareness #edsawarenessmonth #medicalzebra #ehlersdanlossyndromeawarenessmonth #ehlersdanlos #eds #edswarrior #ehlersdanloswarrior
HealthHeard.com has been designed around the needs of people with complex health issues including EDS, hypermobility spectrum disorders and related connective tissue disorders like Marfans. We are here to help!
‘Dopamining’ for May - Forest bathing
Dopamining is looking for activities that increase our happy hormones and give us a lift. Have you tried forest bathing? This can be a gentle way of enjoying the outdoors without overdoing it. See if you have a group local to you here:
https://www.forestryengland.uk/forest-bathing
Forest bathing exposes you to antimicrobial phytoncides (wood essential oils) that have a whole range of potential health benefits.
If you don't, spending time in nature in a place where you can feel calm and safe can still help your health, reducing the impacts of stress, calming down your autonomic system, and supporting your immunity.
And then if you are able to be a little bit more active then relaxed hiking can be fun too - it's hiking with the pressure taken off, let's call it a ramble :).
And of course it's another way to help us value the natural world.
Some of you may have severe allergies or problems that make being outdoors difficult, but even looking at woods on your screen, in books etc can be calming.
If you do go out, don't forget warm clothes in case the weather changes, a map, a whistle, water, snacks, allergy medication, and DEET free protection against biting insects!
See more here https://rfs.org.uk/news-list/forest-bathing-benefits/
And https://forestbathingcentral.com/phytoncides/
Your Say
"Explaining our health worries can be hard, especially if we are not sure what is important, or we have a lot to say in a short appointment. It's even harder if we have trouble communicating, or if what we say is not being taken seriously, or is at risk of being ignored altogether. Not being believed is hard on us, and harms our health too."
Well, said CS of London!
Want to have your say here? Let us know!
Have you tried Health Heard Yet?
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Try Health Heard, and be part of our journey to revolutionise healthcare for everyone. ✨
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