A brave new (online) world

06/Dec/2011

Last week I spoke at a regional support group meeting, about some of the innovative work the charity is doing.  I always enjoy this as there’s plenty to talk about right now, and always lots of interesting projects happening.

Of course I told them with some pride about our varied online resources and the amazing results we get from channels such as Facebook and Youtube in reaching new audiences.  This is especially powerful with projects such as the Underwear & Swimwear Show, using powerful images and video that can be spread easily.

And that’s where things go downhill; cue the usual rolling of eyes, tutting, and complaints that these are all very well for ‘young people’ with computers, and what are we doing for people like them.

To be honest this conversation frustrates me, having started off keen and proud of how we are forging ahead I am now feeling like we are neglecting a core group of our service users!  I have to remind myself, and them:

  • we are not cutting any of our existing services, by phone, print, or face to face.  These are still being provided and growing as ever.
  • using the internet is reaching a whole new group of people, of all ages, who are otherwise isolated or would not consider accessing those traditional forms of support.
  • these channels have vastly increased opportunities to provide face-to-face support; our events listings let people find support groups and meetings in their area and is the springboard to provide workshops and training in new regions.

I could keep going on, about the many ways the internet is enhancing our charitable work and increasing our range, but the thing that really struck me in this exchange is the patients sitting in the meeting are the patients who have already have the resources, support, and community around them when they need it, and frankly are not the people we need to be striving to reach.

The internet, including Facebook, Twitter, and Youtube is just one (albeit very powerful) tool in our charity’s armoury for reaching those that are missing out on support, either through their circumstances or unwillingness to participate in ‘traditional’ support methods.


Ostomy Lifestyle Underwear and Swimwear Show 2011

07/Nov/2011

One of the most common issues we help people overcome, before and after surgery, is that of a changed body image.  Stoma surgery can result in abdominal scarring and means wearing a bag, not exactly attractive right? Well, our Underwear & Swimwear show proves otherwise.

This is only the second time we have produced this event. The first Underwear & Swimwear Show was at Café de Paris in London’s Piccadilly and was an immediate internet hit with over 20,000 people watching the show online and the film being used to inspire patients all over the world.

This year the format remained the same, but was bigger and bolder with 14 models from a wide range of backgrounds and experiences stepping out in front of the cameras, and the crowds, in a variety of attractive and sporty outfits. Once again the show included garments from mSee all of the volunteers on the catwalkany high street stores and boutique designers, as well as some created especially for people with an ostomy.

Our aim for the event is to raise the profile of ostomy surgery in a positive way, to help tackle the fear and stigma before the operation, stopping it take root and impairing patients’ quality of life before they even have the surgery.

When someone finds out they are going to have stoma surgery the first place most people turn to is the internet, which can be the worst introduction to the subject for a patient, with images of very ill, emaciated patients covered in staples and surgical wounds, and usually a clear post-operative stoma bag with its contents in full view. Add to this the myriad of forums and websites which may be cathartic for the authors but often very scary to vulnerable patients awaiting surgery.

Our show, and the associated media campaign and Facebook traffic, provides much more positive images and personal stories from people whose voices wouldn’t normally be heard.

Deborah volunteered to model in the show to help people overcome their fears and have surgery before it is too late: “I lost out on three years of my life with ulcerative colitis.  If I had known the quality of life that I would have gained by having a stoma I wouldn’t have wasted any time”

Hayley-Jade had her colostomy after her bowel perforated during a caesarean section 3 years ago: “I had never even heard of a colostomy before. I came home from hospital on Christmas Eve so between that and the fact that I had a new born baby son, with cerebral palsy, the stoma had to fit in around me, after all this is my ‘new normal’ so I just decided to get on with it.

My body image has definitely changed since having a stoma. In some ways I’m less confident as my tummy area is covered in scars from the operations which I don’t like, but in other ways I’m more confident, I now have a greater appreciation for bits of my body that I never used to like. My partner says that he doesn’t even notice the bag anymore and I’m happy to go on the beach wearing a bikini now, which I wouldn’t have done before!

Being involved in the show is my way of saying to the world – ‘I’m happy with who I am’ and it’s a great opportunity to explain more about my colostomy to my friends as I think they’ve all been a bit scared to ask before!”

Rosemary has modelled in both our shows and is becoming something of an ambassador for the message it sends: “Being part of the show changed my life, and it can change other people’s, whatever their experiences.”

Ostomy Lifestyle’s support services are here to help ensure people affected by stoma surgery are able to lead a full and active life by providing them with knowledge and inspiration. Our models are living proof that beauty comes in many forms and a positive attitude is the most beautiful feature of all.

Video interviews with all of the models are on the Ostomy Lifestyle website, and photos and films of the event itself are going live this winter.


Buckingham Palace

28/Oct/2011

They’re changing the guard at Buckingham Palace…. And serving tea as it happens.
Last week I had the privilege of meeting the Duke of York who takes an interest in health charities and volunteering, especially in his patronage of the representative body Attend.

Had a very nice time, not least of all as seeing the inside of the Palace is hardly a regular event for me, and very pleased he took the time to see us.

Things he likes talking about:

  • Roadworks – not impressed
  • Bendy Buses – not at all impressed

Much more positive conversation:

  • Diversity in healthcare volunteering
  • Innovation in healthcare volunteering

To be honest I don’t think he was quite prepared for a graphic conversation about ostomy bags, or bowels and bladders, but I lightened the mood with some pictures of our very sexy Ostomy Underwear and Swimwear Show model, Krystal!

Left the building still munching a Duchy Original, didn’t get any photos I’m afraid (security and all that) but pleased to know we raised the profile and the cause at a much higher level.


Underwear & Swimwear Show is NEXT WEEK!

28/Oct/2011

Well what a busy, busy couple of weeks.  It’s usually hard enough to stay up to date with everything happening at the charity but of course right now we’re in the throes of organising our next (world famous) Underwear & Swimwear Show.

This years event is bigger, better, and more wide reaching than before; considering over 20,000 people watched the last one that’s quite something – if you haven’t watched it already do so now:

http://ostomylifestyle.org/content/underwear-and-swimwear-show-2009

To be honest it’s been a rocky road, with only a small team in the office an event of this scale is a major commitment for the charity, both financially (we hope to break even on ticket sales and other fundraising) and emotionally (I think everyone has come pretty close to a nervous breakdown dealing with every type of stress from ticket sales and corporate support, to filming interviews with the models and organising the stylists and photography).

The concept has proved to be controversial, there have been a couple of raised eyebrows and even a letter concerned about using sexuality and nudity for a charity.  The National Secretary of another ostomy charity even helps prove how groundbreaking it is by describing the event as ‘disgusting’.

Detractors are in a very small minority however; this event has captured the imagination and enthusiasm of thousands of people who want to show the world that having a stoma is not a barrier to leading a full and active life, and to push back against the negative images that are often painted of body image by people who do not understand what an ostomy is, or what it means to the 22,000 people having the surgery every year in the UK.

I’m looking forward to seeing many friends of the charity, old and new, on Wednesday night. If you don’t have tickets I’m afraid all the VIP seats have sold out, but there are still free ‘Show Only’ tickets available on the website.


The new Health Lottery – a threat to charity income?

28/Sep/2011

Richard Desmond (owner of the Daily Express) has launched his “Health Lottery” to compete with the National Lottery. The news on my way to work today was all over it and sounding very positive, and on the face of it a very nice thing to do – who wouldn’t want to take part in a lottery scheme that provides donations to charity?  Well anyone that already plays the National Lottery or any of the charity organised lotteries such as Hospice Lotteries or Unity Lottery for a start which donate more than the Health Lottery.

The Health Lottery gives 20p in the pound to health charities, whilst the National Lottery gives 28p all types of charity.  Our charity has achieved Big Lottery funding to expand our Helpline services and training opportunities throughout England, helping thousands of people over the next four years.

The Big Lottery Fund has an extremely rigorous process for applying for funds, and it is very competitive meaning only the best cases are supported.  I wonder if a competitor will be able to apply the same level of accountability and provide the same level of trust…

If a donor wants to guarantee how their lottery spending is used thay can take part in much more equitable schemes run by the charities themselves – for instance we have our own Unity Lottery in which 50% of proceeds go straight to Ostomy Lifestyle.

In its name the comparison with the much publicised healthcare ‘postcode lottery’ is just too obvious, and I feel trying to undermine existing initiatives will only damage charity income across the sector, and sounds more like a PR stunt than anything else.


2011 Underwear & Swimwear Show tickets

29/Aug/2011

Very, very exciting time now…. The tickets for this year’s Underwear & Swimwear Show will be going live this week, as well as excusive interviews with the models so you can get to know them a little before the main event!

Last time we did this we had an amazing response with over 20,000 people watching online via Youtube, Facebook and our own website – see for yourself here

Feedback from last time round was that although everyone had a great time, it would have been nice to see more patients at the event.  As they are the people we started the show for we have worked hard to make tickets availableto everyone that needs them, regardless of financial situation.

We are working with several companies who have block purchased tickets to give away either free or at a heavy discount, so far including Salts Healthcare (VIP sponsor), OstoMart, Peak Medical, and CliniMed.

Unfortunately we only have a limited number of subsidised tickets, but we hope to get more companies involved in bringing patients along – if you or your company is interested in helping subsidise patients tickets please call me in the office on 0118 324 0069 asap, as we already have a waiting list of over 300 guests!


What a lovely message!

16/Jul/2011

I love getting feedback from people working with the charity, either as a beneficiary, supporter, family member or just someone with a padding interest.

One of our regular fundraisers sent us this, I thought I’d share as it’s just the sort of thing anyone working for a charity likes to read:

Fundraising by taking part in a sponsored event is not simply about getting money off kind individuals to help support a cause of your choice, although when trying to drum up support it can often feel a little like that! In the last few years I have undertaken various challenges in aid of Ostomy Lifestyle, including climbing Ben Nevis, running the Bristol 10k and cycling the Coast2Coast challenge from Whitehaven to Newcastle, and in the process I have learnt the many other benefits of doing things like this. For me, one of the chief reasons I got involved is that my older sister was afflicted with a chronic bout of colitis while I was on my gap year in Australia, and at the time I was in no position to help, practically or emotionally. Sponsored challenges have allowed me to connect and to help in my own way, and have enabled me to learn more about not just the charity and what it does, but about what people like Helen and others have been through and will go through.

Furthermore, asking people to sponsor me in aid of Ostomy Lifestyle has brought about inevitable questions from people like “What does the charity do?” “What is a stoma?” “Does it change or inhibit your life having one?” I used to find some of these questions difficult to answer, however the more people I talk to about it, the easier and more rewarding it is to do so. Working in the NHS, I have encountered a lot of support and compassionate interest from health professionals, particularly nurses. Perhaps the best people to speak to, though, are those whom unbeknownst to me are going through something like this, or know someone who is, and feeling uncertainty and perhaps fear. It feels great to be able to share my own family’s difficult experiences and turn these into a positive thing for others, and to spread the word about the great work Ostomy Lifestyle does.

Flying the flag for Ostomy Lifestyle!

Tom on Ben Nevis

This might all sound a little altruistic, but it really isn’t. Sponsored challenges are as beneficial to the individual as they are to the cause. Firstly, but perhaps least importantly, people will think you’re really nice! Secondly, they are a great excuse to achieve life ambitions. The feeling when I got to the summit of Ben Nevis with my climbing wingmen Matt and Andy was quite amazing. Being able to see Loch Ness in one direction and the sea in the other and know that this wasn’t purely a selfish accomplishment felt brilliant. And thirdly, knowing that you have to do something physically difficult and that you have gotten yourself into a contract with the many generous souls supporting you means that you push yourself all the harder to get there, when you might otherwise flake out long before the day comes. In other words, it’s a great excuse to get fit knowing that you can’t stop just because you’ve decided you can’t be bothered with it anymore. I would strongly urge anyone tempted to push themselves through a challenge to just go for it!

Tom, Bristol

Nice!  Hope you enjoyed reading that as much as I did; anyone else wants to take part in a fundraising event, or wants to find out more, drop us a line here


Feeling sore today…

12/Jul/2011

I’m writing this lying down, trying not to move for fear of hurting my back…

Having spent Sunday running round London at the Asics British 10k, I shouldn’t be surprised that I’m feeling a bit sore – but having raised £545 through my JustGiving page makes the pain a little more bearable.

It really was a fun event; there were nine of us out running for Ostomy Lifestyle, from far across the UK, and even a few from the Netherlands.  This being my first running event I can see why so many people take part, especially for fundraising.  Once I’m back on my feet I think I could be tempted to do another one, or maybe something a little more challenging.

I’m personally pretty pleased with my finish time, a tad over my target 50 minutes, even though my back injury put me off training for a fortnight before the event I can’t help feeling I would have shaved a few minutes off if I hadn’t been struggling to overtake about 25,000 runners & walkers on the way!

Thank you to everyone that donated, as I wash down an analgesic I feel I’ve earnt every penny!


British 10k London Run

05/Jul/2011

Oops, in a brash moment earlier this year I signed up for the Asics London 10k run, and the reality is just starting to sink in….

Although I’m not as fit as I used to be (in my youth!) and carrying some excess weight I reckon I’m in with a chance of doing it within 50mins, but really I’m doing it to raise some money for charity.
My target:  Ostomy Lifestyle has recently kicked off a national project funded by the Big Lottery Fund, providing workshops for people to better understand their surgery and feel more confident after having a stoma.
These workshops are happening all over the country but as many of our beneficiaries may suffer with hearing empediments I would like to raise enough sponsorship to purchase sound equipment to use wherever we go.

Please do visit my fundraising page: justgiving.com/Neil-Basil

Big thanks to my many friends and family that have donated so far!


LinkedIn company pages – security is a joke

13/Apr/2011

Seemingly endless emails with Linkedin customer support now leaving me in a very, very bad mood… I’ve been a user of Linkedin pretty much since it started, long before Facebook even existed, and in the main think it is a valuable asset… until this last few weeks.

Aside from being a great networking tool for people they have been creating more opportunities to showcase and connect to organisations with their ‘company pages’.

This is very useful as you can follow those companies etc and their people, however upon trying to update our page I find that we are not authorised to do this as someone else has registered the page!

Apparently it’s a first past the post system, already well known for ruining democracy and now frustrating people like myself all over the world.  As long as you are the first person to bag a page then you can register as any company of your choice, and do what you like with it.  The system (and Linkedin customer service) will then block everyone from the real company from accessing their company page

Their advice to me?  set up another company page called Ostomy Lifestyle UK and then transfer our staff and volunteers to that – sorry Linkedin, this is not the name of our charity and an utterly riduculous suggestion.

Try it for yourself – why not add a company and see who you can pretend to be?  I set up a Linkedin UK page as my own, but funnily enough they were able to repair the ‘error’.  Still waiting for our own page to get sorted…


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