I joined the charity Bladder Health UK a couple of weeks ago and I was so impressed that I decided to write a blog post about it. If you’re already a member, as I know several visitors here will be, please feel free to go and find something more fun to read – you don’t need me to tell you how great the organisation is! However, if you suffer from a bladder illness and are not a member, please read on to find out more about this fantastic charity.
Bladder Health UK was founded as the Interstitial Cystitis Support Group in 1994 by two sisters, who both suffered from the disease. Very little was publicly known about the condition back then, so the sisters started a national charity to provide information and help to fellow sufferers. Some years later the charity changed its name to the Cystitis and Overactive Bladder Foundation (aka the COB Foundation) to provide support for a wider range of bladder issues. Then, in 2017, it became Bladder Health UK. It now provides resources for sufferers and the medical profession, with the aim of helping people to live more positively with bladder illness through the provision of support and personalised care.
I had been aware of the charity for a while – both Tiny Pioneer and Desert Harvest have advertised in its magazine, and it also had a stand at the 2017 BAUN Conference in Glasgow. I’ve spoken with quite a few customers on the phone who discovered Tiny Pioneer after reading the Bladder Health UK magazine, so I was keen to see the charity for myself from a patient perspective. To be honest, I wasn’t expecting much – the joining fee is extremely reasonable and it’s not as if I’m a novice when it comes to bladder issues, so I didn’t anticipate being so excited when the membership pack arrived.
I received the pack less than a week after joining and I was absolutely blown away by what I got. I should point out that I joined as a real person and paid a proper membership fee to do so – this post is not sponsored and the material I received was typical of what any new member would get. I was genuinely excited when I opened it – it was beautifully presented and I could not believe how many items there were. It is quite astonishing to think that the organisation is a charity and that the materials are not provided by the NHS. The exact contents change a bit seasonally, but I received the following items, all presented in a very smart cardboard file:
A welcome letter.
A summary welcome sheet that gives you an overview of the whole organisation, like a ‘start here’ kind of thing.
A cystitis handbook, full of useful information.
A biofilm infection pack full of research.
A Bladder Friendly Diet handbook.
A Bladder Friendly Recipe booklet (you’ll know I’m not an advocate of following the IC Diet word for word, because I firmly believe that gluten, dairy and sugar should also be avoided, but I can see that it would be a great starting place for people who haven’t even started to make dietary changes).
A copy of Your Bladder Health Magazine.
An information resources list, where you can order extra fact sheets and booklets – some for free and some for small charges.
A resource library, where you can rent out specialist books on IC, bladder health and pelvic pain conditions (this is a great idea to try books before you buy them, or as inspiration for books you might like to purchase).
A poster about Bladder Health UK that could be displayed in a doctors’ surgery, pharmacist, or other public place.
A ‘Just Can’t Wait’ card that you can carry with you to help you gain easier access to restrooms if you’re away from home. These are also available to order in other languages, should you want to purchase extra ones before going on holiday.
As you can see, that is quite an impressive list of resources. If you’re a newly diagnosed IC patient, confused about where to begin, or you’re a long term sufferer who is feeling a bit desperate, I imagine it would be really comforting to receive all that. I think it’s just a fantastic idea to have a list of fact sheets and booklets that can be ordered – a brilliant way to make information available to people without over facing them. I also think it’s lovely to have a lending library of books. While many of the titles are specifically about IC or bladder conditions, one of two titles are also about more general pelvic pain disorders, so there might be material to suit those of you with conditions like vulvodynia, vaginismus, lichen sclerosus and similar conditions too.
Your Bladder Health magazine is published three times a year and contains news, interviews, adverts and details of support groups. Bladder Health UK has over 1500 members and there are local support groups across the country that members are free to attend should they wish to do so. While Bladder Health UK is not a medical authority, it does have a medical advisory panel who contribute to its publications. Sufferers are also welcome to share their experiences to help other bladder illness patients.
Besides the material that you receive in your welcome pack, Bladder Health UK offers numerous other benefits to its members. It has a comprehensive website and online forum where news, research and support may be found. It has social media presence on Facebook, Twitter and Instagram, as well as a LinkedIn profile and a YouTube channel. It has a confidential advice line that operates from 9am to 2pm Monday to Friday and many people who take calls on this line are themselves interstitial cystitis sufferers, so they are able to offer empathy and guidance to those who are struggling. There is also the opportunity to speak with a urology nurse, a uro-gynaecological nurse, a continence nurse and a male sufferers advisor. Free appointments with these can be booked in advance should they be unavailable on the day you ring. You may also use the line to book a paid appointment with a nutritionist – £20 for a twenty minute appointment, which is very reasonable.
All in all, I feel that Bladder Health UK provides an unrivalled advice and support service, especially for those with interstitial cystitis, but also for a range of other bladder conditions. Really, it is fulfilling the role that we wish our doctors and specialists could offer, giving comfort, direction and the benefit of experience in an area where all too often, medical professionals are at a loss.
You can join Bladder Health UK no matter where you live – overseas members are welcome. For UK residents, the cost is £20 per year; for overseas members it is £25 per year. For the first year only, there is also an extra £5 fee, presumably to cover the cost of the welcome pack. Male members are welcome too! If you would like to join, you can do so by clicking this link, or you can phone 0121 702 0820. Please do NOT phone Tiny Pioneer to join or to ask for more information about the welcome pack – we are not connected to Bladder Health UK!
Finally, as mentioned, Bladder Health UK is a charity. If you would like to donate or fund raise, you can visit the website to find out how to do this. There is also a portal into Amazon on the website, so that you can raise money for them while you do your shopping.
If you do go ahead and join, I hope you find it very useful and please do mention this article so that the Bladder Health UK team will know how you found them!
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