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…

Big Lottery Funding

08/Apr/2011

At last we can go live with the very exciting news that we have been succesful in achieving a National Lottery grant via the Big Lottery Fund!

It’s good timing; Ostomy Lifestyle is still a very young charity (3 years) but has rapidly filled the void between statutory healthcare services and traditional support groups and associations.  By consistently delivering advice, information and support  to people affected by stoma surgery, and training others to do the same we have helped many thousands of patients to lead more positive lives, but this has also highlighted the need for more work to be done.

It’s felt like a long slog at times, and with an annual income of £75,000 there are peers of mine in other charities with bigger salaries than our entire budget, yet through the hard work of volunteers and staff we are making progress and this 4 year funding is pivotal in expanding our services, providing:

  • A stoma care nurse to provide one-to-one support and assist the development of more printed and online information
  • A calendar of patient workshops, on a range of topics, across the country to help people overcome their own stoma related problems and feel more confident about living with a stoma
  • A new range of support group organiser training; helping new and existing groups improve their ability to provide support, information and advice

We will take an opportunity to invite you all to a celebration launch party very soon… watch this space!

Business Charity Awards

10/Feb/2011

The Business Charity Awards nominations close today, which will recognise partnerships between businesses and charities in the UK.  Great news – or so I thought…

On the face of it this is exactly the sort of thing that can help us acknowledge the amazing help and support we have received from B2B marketing agency Onefish Twofish, who have provided in-kind support from corporate videos to our excellent new website and Directory.

But the entry fee is £395 + VAT (nearly £500 net), an extraordinary sum which I cannot justify from charity funds, and by the same token I am not going to ask Onefish Twofish, who have already done so much for us, to pay several hundred pounds for something that won’t help our benficiaries.

Once again a scheme that bigs up the massive companies supporting the Megacharities, and completely excludes small, innovative charities and creative donors.  With big name charity sector partners such as Charities Aid Foundation and Third Sector behind it, you’d expect it to be better thought out especially as those entering will also be buying the top price dinner tickets.

Interestingly the entry fee was previously advertised at £450+VAT…

Patient Workshops

08/Feb/2011

An enjoyable evening spent trying a new method of delivering our Patient Workshops in the community.  We didn’t travel far to do it – a few hundred yards round the corner at a local hall.

I really enjoy these sorts of events; they remind you why you do this job when you’re face-to-face with people who:

  • Know very little about their own digestive and urinary system
  • Have little contact with support networks
  • Do not realise how many other people share the same condition in their local area

And after the workshop:

  • Have had an interesting, educational and fun evening
  • Feel more comfortable about their own body
  • Better understand the surgery they had

The workshops are always really well received at larger events and open days, but this is the first time running it as the sole focus of an event, partly because it is hard to find the funding for travel, venues etc, but we wanted to make it more accessible to people that might not make it to the bigger events.

Nick Howard at Convatec helped out by bringing sandwiches and refreshments, and the feedback was excellent so we hope to deliver more of these in different parts of the country very soon.

Mercy’s video & intro to OstomyAid

30/Nov/2010

Here’s a short film all about Mercy, and Heidi Yssennagger‘s work creating her for OstomyAid.  This was filmed by Tim Bedingfield on the same day that first year Fashion & Marketing students at Canterbury College carried out the final dressing of Mercy, using entirely the waste NHS bedding they designed and printed themselves.

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Mercy – OstomyAid Ambassador

19/Nov/2010

It seems the last few weeks have been a blur of the most tedious elements of running a small charity – accounts, HR, White Paper responses, governance skills audits and repairing a Sage Line 50 nightmare to name a few…

OstomyAid new Ambassador!Anyway, that all changed yesterday when I was privileged to be involved in the dressing of our newest volunteer – Mercy.

Mercy is the creation of Heidi Yssennagger, and will be the ambassador for our new project – OstomyAid - which will provide essential medical appliances to victims of poverty, disease and trauma in countries in desperate need of support.

Made from spare ostomy appliances – seconds from the Dansac factory – and dressed in waste NHS bedding sheets, Mercy embodies everything about OstomyAid, from reducing the waste of appliances in the UK, to the patterns in her clothes inspired by the bowel and stoma, designed, printed, and clothed by the students of Canterbury College.  Additional thanks are due to Dansac for supporting Heidi with the cost of materials (paint etc).

Heidi has created Mercy as a typical patient of the Aaddis Ababa Fistula Hospital in Ethiopia, where women are treated for injuries caused in childbirth which leave them outcast and alone.  She is a symbol of hope for the future, and I am proud that Heidi has extended her talents to Ostomy Lifestyle in support of this project.

Mercy’s inaugral appearance will be at our first OstomyAid fundraiser at Fortnum & Masons on the 2nd December.  And yes before you ask – she does have a stoma and is wearing a real (surplus) bag – I’ve seen it!

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Unity Lottery vs National Lottery

28/Aug/2010

You might have seen we’ve recently set up our Unity Lottery, but what makes it so different?

Well, for every £1 entry, Ostomy Lifestyle receives 50p.  Compare this to only 28p to charity from each National Lottery ticket, and that will be to a very wide range of causes especially the arts, heritage, and sport.  With the 2012 Olympics approaching, expect to see much of this cash eaten up supporting London and the games.

By playing Unity Lottery, you can choose exactly where your money is spent, and nearly double the charity donation in the process.

There’s still a 1 in 63 chance of winning a prize, which is close to the National lottery’s 1 in 54:

  • 6 numbers wins £25,000
  • 5 numbers wins £1,000
  • 4 numbers wins £25
  • 3 numbers wins £5

Your £1 per week gives you a six digit Unity Lottery number, which will remain yours for as long as you play.

To get started, see our website or download an entry form.  Good luck!

Reciprocal links are a poor web strategy

14/Aug/2010

Another week, another request to link to the website.  As ever this is how things proceed:

“Hello, I’d like to put a link to ostomylifestyle.org on my website….”

“thank you, that’s an excellent way to help your users get in touch with the charity”

“…..but only if you post a link back to my site”

“sorry but we can’t.  If we did our site would have hundreds of links that aren’t relevant to most of our users”

“well we’re not linking to you either then”

So it’s not a ‘request’ from a site wanting to offer another avenue of support, it’s just another ‘demand’ for us to link back.  I feel a few words might be useful on why I have removed the links page from ostomylifestyle.org…. Read the rest of this entry »

DH White Paper: Equity and excellence: liberating the NHS

16/Jul/2010

So, we’ve got the document in our hands and the Secretary of State has been briefing everyone on what ‘Big Society’ is going to mean for us, and although it’s got some people running for the hills I’m feeling reasonably positive.

Yes, it is going to be a tough transition, but with the state of the economy and the cost of healthcare threatening to bankrupt the country if it’s allowed to stay on it’s current course, what else should we expect? Read the rest of this entry »

UnLtd Spring Award

28/Jun/2010

Last week brought a very special celebration, as I’ve just won an UnLtd social entrepreneurship award.

This award has a financial element, which at such a time of growth and uncertainty is an immense help to me personally, but more importantly it also provides me with a tailored package of business support.  This will support my work establishing more creative methods for dealing with the challenges we face, especially improving patient care and generating sustainable support services for people affected by stoma surgery.

I’m very proud to have this award, and feel I am in very good company; at the event last week I met UnLtd Award winners past and present, and they are clearly achieving real social change in some of the most innovative ways.  I look forward to helping change the world with them.

Incidentally, the venue for the dinner was the Michelin recommended Hoxton Apprentice, which if you haven’t heard of or visited – do go there.  Owned by the charity Training For Life, it is a social enterprise that creates opportunities for people to get their lives back on track and learn skills that will secure them employment, at the same time as serving excellent food.  An excellent example for the rest of us.

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