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Help raise awareness and funds

Help to raise awareness and funds for Ostomy Lifestyle's Underwear and Swimwear 2010 (see videos and photos on www.ostomylifestyleparty.co.uk) by hosting a Pamper Evening in your home. For ideas how to get started you can download this short guide  or contact Regine for full support & help on 0118 324 0069 or email regine@ostomylifestyle.org

Dreamteams.eu

 Join the Ostomy Lifestyle team league or create your own. Click on the logo to find out more. 

Check out the Colondar video 

The Colon Club have posted a film about the making of their fantastic Colondar.  Every year they bring together colon cancer survivors to produce this amazing calendar, raising awareness of colorectal cancer and inspiring anyone affected by the disease.

Anyone that has seen our Underwear & Swimwear Showwill know the impact you can have by taking your clothes off, showing your scars to the world, and proving that you are still strong, proud, and confident evenespecially after major illness and surgery.

We are really pleased to see an organisation that shares our passion for tackling stigma and being creative in achieving this mission.  Please watch their video and share it with anyone you think needs a little lift.

  Can you help us with a short survey?

We need evidence of the type of support people with stomas benefit from to help us obtain funding and development our services in the most appropriate ways. If you can help please call on 0800 731 4264 (between 10am-3pm, weekdays), or email advice@ostomylifestyle.org(or via Facebook) for a call-back.  It takes no more than 10 minutes of your time but will help us help others affected by stoma surgery.

Thank you!

Ostomy Lifestyle Awards 2009

Nominations are now being taken for the first Ostomy Lifestyle Awards, recognising excellence and commitment throughout the sector.

Awards will be given for outstanding contributions and achievements in many areas of stoma care.  Neil Basil, Chief Executive said “These awards will celebrate the people and organisations that promote positivity and improve the quality of life of people affected by stoma surgery.”

Categories:  

• Most dynamic/pro-active local patient support group
• Fundraiser of the year
• Volunteer of the year
• Most supportive/positive nurse
• Most dynamic/supportive industry professional
  
• Most innovative product 

  You can download the nomination form here . More information about the awards and nomination forms are available from us by phoning

Stoma Information Day in Surrey

Our first public stoma Information Day will take place at Lakeside International Hotel in Frimley, Surrey on the 9th September, 3-7pm.

Representatives from Ostomy Lifestyle will be on hand with information on a range of lifestyle topics, you can also meet appliance manufacturers and support charities like Macmillan, NACC and Bowel Cancer UK, and local patient associations.

The "Understanding your stoma" workshop is a chance to learn more about your stoma and is being run from 4pm and 5.30pm.

Fashion Show
April 2009 - find out how to get involved.  more...  

Be a model for Ostomy Lifestyle 
Are you proud of your stoma surgery? Are you an example of Positive Living?
You could be a positive influence for others and make an impact by helping us to promote images of happy, healthy people who are confident and above all aren't afraid to talk about their stomas and show off their experiences to the world.

We want your positive images to include in leaflets, information sheets and our website, as well as finding candidates for more exciting projects.

If we invite you to take part in further projects you will also receive:

• Professional photo shoot
• Professional make up & hair styling
• Professional styling advice
• Lots of other goodies!

We're looking forward to hearing from you, send us some photos of yourself getting on with your life and state what other sorts of modeling you would like to be considered for (e.g. sport, fashion, medical information etc) to models@ostomylifestyle.org 

Southampton PCT Tender - Update 

After this edition of Ostomy News went to print, we received an update from Southampton City Primary Care Trust (PCT).  The original tender for the supply of stoma care products has been withdrawn, and a major review of this service is underway.

By including stoma care within a wider strategy of 'enabling' patients in the region, the PCT will be able to provide better multi disciplinary support before and after stoma surgery.  The plans include community nurse clinics and a drop in information centre for advice and information, as well as links to other primary/secondary care services and support organisations.

Chris Webb, Specialist and Clinical Equipment Services Manager, said: "Southampton City PCT is committed to ensuring our clients receive the best possible care. We are re-evaluating how we provide services to people with a stoma, to provide an opportunity for focussing on a person's needs and concerns, rather than solely on which product should be supplied."

Ostomy Lifestyle is pleased to see that Southampton City PCT is taking this opportunity to consult with stakeholders:  "By taking a measured approach and reviewing services in this manner, there is an opportunity to improve services for everybody".

We will provide a further update in the next issue of Ostomy News

PCT proposes supply restrictions 

Patient groups have been shocked by a tender issued by Southampton City Primary Care Trust.  It is proposed that one company should supply, customise and deliver all stoma care products (bags and accessories) to patients in Southampton and south west Hampshire.

A list of permitted appliances and accessories will be issued, based on cost, and any changes to a prescription must be assessed by the stoma care team, who will also authorise customisation for patients unable to cut their own bags.

The tender restricts the number of appliances a patient may use, for instance someone with an ileostomy or urostomy will be supplied no more than 15 bags per month, or a urostomy will be allowed a maximum of two night drainage bags per month.

"This approach goes totally against the Department of Health ethos of maintaining and improving patient care", Ray Goddard, Trustee of the Colostomy Association comments. "The reduction in choice is not acceptable and we would encourage patients to raise their concerns."

"Here is another attempt to slash costs without regard for the consequences, before the results of the last consultation have been announced", says Neil Basil, from Ostomy Lifestyle. "If the plan is to reduce costs then we need to improve education, to improve products and reduce waste."

Do you have Crohn's disease?
Considerable research in genetics has lead to greater understanding of the causes of Crohn's disease.  A ground breaking study is seeking smokers who are close relatives of patients with Crohn's disease, to better understand the causes of this condition and how it can be prevented. 

So if you have Crohn's, King's College London would like to hear from your parents, siblings or children if they fulfil all these criteria: 

• Aged over 18
• Smoke 5 or more cigarettes a day
• Do not have Crohn's disease or ulcerative colitis
• Live in the UKor Republic of Ireland 

The study is conducted entirely by telephone so taking part is easy, and relatives who take part will find out more about their risks of developing Crohn's disease and how they might reduce these.

For more information on taking part please contact Sophia Whitwell on 020 7188 9778 or email Sophia.Whitwell@iop.kcl.ac.uk

Ostomy Lifestyle & AW Cycles team up 

Cycling team awcycles.co.uk has joined forces with Ostomy Lifestyle. The Reading-based shop team races in all cycling disciplines and competes in some of the biggest races on the UK calendar.

Former International rower and Team Manager, Tim Bedingfield had just taken up road racing when he had ileostomy surgery five years ago.

Tim quickly got back to an active lifestyle and sporting career, and now wins road, time trials and track races all over the country.

"Dispelling some of the myths about stoma surgery is a big motivation behind my racing", Tim says, "I want to take the opportunity to promote a clear message that although everyone faces different challenges, life can return to normal and indeed be much better."

"I could see that the way that I view my stoma is absolutely the way Ostomy Lifestyle view life after surgery, and the reason behind the work they do."

Ostomy Lifestyle is grateful to the all of the team and Andy Wilkins, owner of AW Cycles, for their support helping promote a positive message across the country.

Visit http://www.teamawcycles.co.uk/ for information about the team and the riders.

Do As I Do - An Ostomate Abroad
Whilst the aim of Ostomy Lifestyle is to promote a "can do" attitude amongst ostomates, it was with a very heavy heart that we said goodbye to Careline Supervisor Helen Farrell, gone to travel the world with suitcase and indeed spare bags in hand. From the start Helen has been an integral part of the success of Ostomy Lifestyle, From training Careline Operators to the development of our information sheets, her role has been varied to say the least. Thankfully, all is not lost, she will be back next year.

Whilst travelling Helen is writing a blog which she will include her experiences, proving that there really aren't any obstacles to leading normal and productive lifestyles after stoma surgery. Read all about Helen's travels here... 

National Launch
The National Launch Evening of Ostomy Lifestyle, on the 29th May, was a great success, with dignitaries, charities, stoma care specialists and businesses representatives all coming together to celebrate this exciting new charity. more..

Attend Awards
Ostomy Lifestyle were proud to be finalists at the recent Attend South East Awards ceremony.
Ostomy Lifestyle have established and developed an independent, free and overall positive telephone helpline service for anyone affected by bowel or bladder surgery. This service is operated by volunteers who have all had stoma surgery themselves, and who undergo extensive training and supervision. This is the first of its kind and fills the broad gap between the NHS and patients associations.
Judges comments: "An Innovative Project providing a Helpline manned by volunteers. An excellent model of good practice challenging stigma. Commended!" http://www.attend.org.uk/index.php

Breakaway 2008
Organisers Rachel Clarkson and Julie Bastin never thought they could better the first Breakaway weekend, but they are just recovering from Breakaway 08 which saw twice as many children with bladder/bowel diversions enjoy a weekend of climbing, canoeing and archery at YHA National Forest.
The whole idea of Breakaway is to show people with stomas of any kind that they can do anything they want, and this year was no exception. With ages ranging from 4 years to adult it was an opportunity to enjoy activities, share stories, have fun and make lifelong friends. This has been a fabulous weekend. "It's been great for both children and adults", said one of the parents. "We all share a common ground and it is fabulous to be able to swap stories and experiences".
Children that were scared of getting wet in the canoe soon started to splash each other with paddles and left all their fears on dry land. That is what Breakaway is all about.
Next year Breakaway will be at YHA Broad Haven, South Wales. For full details see the website http://breakaway-visit.co.uk/2008.php or email break.away@tiscali.co.uk

Department Of Health Consultation
The British Healthcare Trades Association has called on the Department of Health to halt its consultation on stoma and incontinence and listen to the concerns of patient charities and manufacturers.
BHTA President Graham Collyer said: "From the outset this consultation has been seriously flawed as it was published without an assessment of the impact it would have on patient care. Even though they have not conducted the Impact Assessment required by law, government officials plan to make recommendations to Ministers this week."
Patient charities expressed concern as the government prepared to launch its seventh consultation on stoma and incontinence, at a mounting cost - 2.25 million to date. Could this be the longest consultation in history? So much time has been spent arguing over short term costs but almost no consideration appears to have been paid to securing long term value for patients said Neil Basil, Chief Executive of Ostomy Lifestyle.
The consultation, with a risk assessment, will run for 12 weeks, and you will be able to find information as it is available at http://www.dh.gov.uk/

Colondar
Their method may raise eyebrows, but for the fourth year in a row The Colon Club has brought together a group of young cancer survivors to raise awareness in a provocative but educational calendar known as the Colondar.
The 2008 Colondar features six men and seven women that have survived colorectal cancer. Each month features a photograph of an ordinary person with an extraordinary story of survival, all of whom were considered too young to have colorectal cancer. The stories are as unique as the individuals. Rebecca's family history led to her diagnosis and ostomy surgery at just 25. Suzie, a gastroenterology nurse, was shocked to be in the same position as some of her patients when she was diagnosed at 37. By showing their scars and sharing their personal stories, the models hope they will save lives by proving that colorectal cancer can happen to anyone at any age. http://www.colondar.com/