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.


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!


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.


Community Based Support Special Interest Group – update

15/Apr/2010

We recently held the first meeting of a Special Interest Group, to look for ways to improve Community Based Support (CBS) opportunties for people affected by stoma surgery.  There are many different types of CBS; for example local support group meetings, hospital open days, information days, or other events.

The premise of the meeting was that more people could benefit from CBS initiatives in their local area, and that the multiple stakeholders i.e. local support groups, nurses, companies and national patient organisations, should be able to plan collaborative methods of achieving this.

To start the group off 22 people involved in setting up, administering or promoting such activities discussed ideas to raise awareness of CBS activities, increase attendance, and make them more inclusive to marginalised groups.

The notes from the meeting can be downloaded here: SIG meeting flipchart notes

We will be exploring the ideas raised and seeking solutions to the problems identified; if anyone else would like to take part or can volunteer to help solve these problems – please get in touch!

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Coping with excessive demand vs limited funds

11/Apr/2010

Crikey, what a busy couple of weeks.  You realise the vulnerable nature of a small growing charity when the small things start to cause disproportionate levels of disruption.

Firstly a problem with the server. Although this is an excellent opportunity to test the organisation’s disaster recovery policies, and to learn some important lessons for the future, it cost a great deal of time for staff and volunteers alike, which would be much better spent supporting our beneficiaries.

Secondly, the impact of a key member of the team falling sick quickly escalates the burden and, as in the case of the IT problem, the remainder spend more time ‘coping’ with the regular workload.

The effect of these challenges?  Projects slow down, we struggle to meet the demand on the helpline services, cancel/rearrange important meetings and, dare I say it, lose valuable time that could also be spent raising funds for the charity. Read the rest of this entry »


Community Based Support Special Interest Group meeting

25/Feb/2010

On Wednesday 17th March we will host a Special Interest Group meeting to discuss how more people affected by stoma surgery could benefit from community based support initiatives such as local support group meetings, hospital open days, and information days.

These events give people access to a wide range of support, advice and information in their local area, but often they do not know they exist or decide not to get involved.

This meeting will involve various stakeholders; if you have an interest in organising any type of local support group or open day then you can find more details by downloading the preparatory note.  If you would like to attend it is vital you let us know as space is limited.  Download Preparatory note

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Anatomical Apron teaching video – What is a colostomy?

19/Feb/2010

For anyone that has purchased an Anatomical Apron for teaching about stoma surgery, this video is an excellent introduction to explaining a colostomy and how it is formed:

Joy’s also produced some notes on her website to help you get started:
Sigmoid Colostomy

If you don’t have an Apron and would like to order one in the UK, call Helen on 0118 324 0069 or return this Order form

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Anatomy Aprons now available in the UK

29/Jan/2010

I think this is one of the best tools we’ve seen for educating people about stoma surgery, or even just so they understand how their digestive system works (very few people know their colon from their ileum).

The Anatomical Apron was designed by Wound, Ostomy & Continence Nurse Joy Hooper, in the USA, to help patients understand the physiological and structural changes that ostomy surgery brings.  This revolutionary tool clearly demonstrates what occurs inside and outside the abdomen, enhancing patient’s understanding of what will occur and alleviating fears, helping to speed recovery.

We’ve found them to be invaluable for training nurses, medical companies, and local support groups at our Maximising Support course, as well as ostomy patients at our local workshops.  Nurses in the UK are always wanting to get hold of an apron for their own use, so we are now distributing them directly for £145 (+ p&p).

To order your apron call my colleague Helen on 0118 324 0069.  I’d be very interested to hear anyone’s experiences of the Anatomical Apron and how it has helped them…

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Ostomy Lifestyle Industry Professional of the Year 2009

22/Jan/2010

Jane Adams, Territory Manager for Dansac Ltd was the winner of our Industry Professional of the Year Award 2009.

I’m very pleased with the result as I’ve got to know Jane well over the last couple of years, and know from personal experience how proactive she is in supporting charities and ostomy support groups.  I remember arriving at the official national launch evening of Ostomy Lifestyle to be greeted by Jane directing traffic, completely unbidden.  This is typical of Janes attitude, quietly helping in the background and rarely being recognised for her support.

L-R Jane Adams, Laurie Clark (Ostomy Lifestyle Chair), Nancy Jackson

When she received the award Jane said “I was really, really surprised to be nominated and delighted to have won. At Dansac we strive to make a positive difference to people’s lives and I see this as recognition of the hard work of the whole team.”

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Local Stoma Support Group of the Year 2009

21/Jan/2010

I took a trip to Hampshire to meet the team at Wessex Urology Support Group (WUSG)the winners of the Ostomy Lifestyle Award for Best Local Support Group 2009, and was very impressed by the enthusiasm and professionalism of the organisation.

WUSG offers help, advice and support to all Urinary Diversion Patients in the the Wessex Region,but they do this in in close partnership with statutory health services as well as forging collaborative partnerships.  One such project is Macmillan Solutions,with ten WUSG volunteers becoming trained by Macmillan Cancer Support to increase the level of independence, choice and control for people affected by cancer locally.

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