OKarray(2) { [0]=> string(4) "Home" [1]=> string(11) "Realstories" } Real life stories
ERIC - Education and Resource for improving childhood continence - Helpline 0845 370 8008
ERIC - Education and Resource for improving childhood continence - Helpline 0845 370 8008

Calls to the helpline will cost 9.6p per minute plus the service provider charge.

Real life stories

These brave people who we've helped over the years have shared their stories of living with and overcoming bowel and bladder problems. We're also featuring the story of Dr Penny Dobson MBE, ERIC's founder.

If you would like to read more real life stories please take a look at the case studies on our blog

 


Francesca and Tom's story

 


I first found ERIC about ten years ago, after doing a web search to find help for my son Tom’s bedwetting problem. At that point, it was the single biggest issue that I thought about, and I was extremely stressed out. We were desperate to find a solution, but nothing we had tried had worked. Tom was 13 by this point and had always had a night wetting problem.


I found ERIC invaluable in terms of offering emotional support and providing practical tips to help us manage and accept the condition rather than the endless focus on stopping the problem. The charity helped me to deal with a sense of guilt at not being able to help my son.


While there isn’t always a solution to bedwetting, ERIC can help young people and parents to deal with the problem and understand that obsessing about it won’t help it to stop! It’s somewhere to turn to when you’re upset and exhausted, and need to talk to people who really understand. Knowing how to effectively manage a continence problem on a day to day basis can help children and parents to feel more in control of things. In our case, this enabled Tom to take part in normal activities such as school trips away and to understand that there are many other young people that experience these issues.


The bedwetting eventually stopped when Tom was about 18 and although life is going very well for him, I do feel the condition scarred him; the emphasis by doctors on exploring physical reasons which proved not to exist has resulted in him having a very negative view of the medical profession as a whole. On the positive side he is very kind and caring towards people in difficulties and helps out regularly with a local street football team.


I wish I had known about ERIC earlier as having the right information and support earlier would have reduced a lot of the stress we experienced as a family.


I really want to highlight that continence problems cut across society, regardless of children’s backgrounds. Tom was generally seen by doctors and nurses as coming from a privileged background and a lot of our concerns were dismissed because the professions in question thought their work should only with be children with disabilities or from challenging backgrounds.


I give a regular donation to ERIC as the work of the charity is very important but it’s a cause that doesn’t get the same exposure or funding as other health charities. Investing in ERIC is a way to ensure that the right support is there in future for other young people and their families.


Connor’s story

 

 

I first found out about ERIC after searching the internet two years ago, when I was 16. I had tried everything to sort out my bedwetting problem and had run out of ideas.


I emailed Jayne at ERIC and she explained about other approaches I could try including an alarm, which I went on to use and which really helped. I don’t use the alarm anymore and only wet the bed occasionally now.


In my early teenage years I never really understood why bedwetting happens. It used to feel like I was the only one affected and that I was doing something to make the wetting happen. I wish I’d known others my age that were going through the same thing so I could have talked about it and not felt so alone. In the past I never told any of my friends about my bedwetting, but recently I’ve told a couple of close friends.


Bedwetting might not seem like a big deal but it affected my day to day life in lots of ways. I would often find it difficult to get back to sleep after the wetting happened, which meant I was often tired during the day and unable to concentrate. I was also constantly worried that someone at school would get suspicious of me and find out about my problem. It also limited the things I could do; for example it was difficult to go on trips away or sleepovers. On the rare occasions I did stay somewhere else, I had to plan things really carefully so no one would find out.


I would encourage more young people to contact ERIC directly especially by email as it can be easier to speak about the issues that way, instead of on the phone or in person. It’s really important that ERIC is around to help more young people in the future and that the charity helps to make these issues easier to talk about.



Pam’s story

 


 

It was 1999 and we were still reeling from the shock of discovering that our beloved elder son had leukaemia. He was just about to celebrate his sixth birthday but looked nearer to 60 - pale, listless, sad and scared; stiff of neck following an operation to insert a permanent medicine port and immobile because he was hooked up to a drip which over the next three years would deliver very many gallons of good blood, platelets, saline and vicious cancer killers into his system.


It was a harsh time and we were faced with yet another challenge. To our brave boy's horror, the constant intake of fluids turned him into a bed wetter.


In the context of his bigger health issues, a sodden duvet probably seems minor. But this was a boy who desperately needed self-confidence and undisturbed rest to carry him through, and a family too pre-occupied with worry, hospital visits and the administering of dangerous pills and potions to also cope with nightly changes of bedding or the constant laundering of PJs and sheets.

 

Then someone told us about the charity ERIC. Within days, we had received special sheets to keep our son’s bed dry as well as advice on how to ease night-time bladder pressures and how to re-establish full continence when treatment ended. Amid all of ERIC’s other good work, it’s probable that our case barely even registered. But – believe me – when all around seems dark, it is magically uplifting when someone steps in, waves a wand and – poof! – suddenly you’ve one less problem to fret about. So thank you, ERIC, and congratulations on 25 years of making family’s lives better.

 

Dr Penny Dobson MBE

 

 

Penny, a trained nurse and social worker, set up ERIC in 1988 with characteristic pioneering energy and vision. She then developed the organisation over the next twenty years to create the effective, influential and award-winning organisation that it remains today.


Penny’s daunting task was to set up a registered charity in a challenging area of child health - and to have achieved financial independence by 1991 – a requirement of its initial funder, the Children’s Society. Based in a tiny office courtesy of the University of Bristol, and supported by David Baum, the distinguished late Professor of Child Health, Penny managed to inspire and engage people with skills and influence on a national scale; clinicians to be part of a clinical advisory group, parents and professionals to join a fledgling management committee and the "great and the good” of Bristol to put their efforts into fundraising!


Gradually the small operating team expanded - and ERIC set up the first national Helpline for childhood continence, published a wide range of information resources for children and families, as well as the first clinical guidelines and minimum standards for service delivery. Over the years ERIC also developed training courses for nurses and doctors, as well as the international conference programme - and later a website and an on-line shop.


ERIC’s pioneering campaign "Water is Cool in School”, launched in 2000, resulted in a lasting improvement to the provision of drinking water in schools around the country. Its subsequent campaign, called "Bog Standard” tackled the need for minimum standard toilet and washing facilities – again necessary for all children – but particularly for those with a bladder or bowel problem. These messages continue with ERIC’s important "Right to Go” campaign.


Research was encouraged from the outset. In 1991 Penny managed to persuade Dr (now Professor) Jean Golding at the University of Bristol to include questions on the acquisition of bladder and bowel control in its major national longitudinal study of the health and development of children. This rich source of data was later analysed by a team at the University, with the support of ERIC - and resulted in research publications of international importance.


By 2003 it was clear that there needed to be a political "voice” to represent the concerns of this group of young people. So Penny set up a national forum of professionals, with family representation, called the Paediatric Continence Forum (PCF). Its task was to lobby Parliament and to ensure that paediatric continence was included in national health policy. An immediate success was for paediatric continence to be added to the 2004 National Service Framework, the Government’s 10 year template for children’s services. More achievements followed and the PCF still remains an effective and nationally recognised lobby group.


ERIC’s research-based information, its sound governance and its impact nationally and internationally led to many awards – recognition that has continued to this day. For Penny it culminated in 2007 with ERIC being chosen as Overall Winner of the prestigious Glaxo SmithKline IMPACT Award, an award that recognises the contribution of small to medium size charities to the healthcare field. A year later, ERIC won the children’s category at the national Charity Awards.


We spoke to Penny about these many achievements. She said:-

"The focus then – as now – is to improve the lives of children and young people with bladder and bowel difficulties. ERIC has supported hundreds of thousands of children, young people and their families over the years, and, as it celebrates its 25th anniversary, should be justly proud of what it has achieved.


Since 2008, and under the leadership of Jenny Perez, ERIC has extended its "reach” to many more families and, through web–based media has managed to engage much more directly with many more children and young people. With new initiatives and a strong ERIC team - I feel confident that ERIC will meet the challenge ahead of reaching the estimated 900,000 children and young people in the UK with bladder and bowel difficulties”.