“Our Babies” is a collection of personal stories which we hope will give a positive uplift to those with new babies and small children who have just been given a diagnosis of PWS. This booklet was first produced over thirteen years ago, updated in 2007 with a new generation of our babies and an update on the children that appear in the original edition.
We would now like to update this publication again and this is where you come in! We would like to hear from families who have had babies since 2007 and we are looking for your experiences from the moment when he/she was diagnosed, through the first few years of their life. Your experiences and thoughts could be a lifeline to a family with a new diagnosis.
We need in the region of 300 words from when your baby was diagnosed with PWS, bringing baby home, the first few weeks, the impact on family life, coming to terms with the diagnosis through to where you are now. We would also love a photograph!
Please send your contributions to Maggie at the office or email
We will try to include as many stories as possible!
You could get Carer’s Credit if you’re caring for someone for at least 20 hrs a week.
This is a National Insurance credit that helps build your entitlement to the basic State Pension and additional State Pension. It makes sure there are no gaps in your National Insurance record. To find our more, please visit the Gov.uk website here: www.gov.uk/carers-credit
From Prof. Chris Oliver’s Team - University of Birmingham ...
Researchers at the University of Birmingham are starting two new research projects with families that have taken part in previous research studies. It is hoped these projects will capture the lived experiences of these families.
When you think of a researcher what image comes to mind? Is it the stalked neck academic crunching numbers or figures, or is it the Professor boffin pouring over his dusty volumes of long lost research? How close do researchers come to capturing people’s everyday experiences of caring for children with intellectual disabilities?
At the Cerebra Centre for Neurodevelopmental disorders (University of Birmingham) we have always been concerned about the views of parents of children with intellectual disabilities when forming our research questions. Hopefully, if you have taken part in these projects you have found them useful.
Despite this, there still seems to be a gap between those initial rich and complex conversations with parents that inspire our research and the facts and figures that get published in research journals – somewhere the human element gets a little lost. To some degree this is to be expected but ultimately we need to focus on what actually inspires policy change.
What makes services stand up and listen? Facts go a long way but can they ever match up to people’s stories about their experiences – stories about their children’s needs, parents’ perceptions of these needs and the services they may go on to access? We feel that these stories are powerful and that they can make a real difference when appealing to services, professionals and other researchers to step back and then make changes.
Children with intellectual disabilities have complex needs and a vast proportion of families caring for these children will experience difficulties for which they need support. Researchers now know quite a lot about the needs of children with intellectual disabilities, however, very little is currently known about how caring for a child with an intellectual disability affects parents and carers and about the quality of support they are receiving from services.
It is time to close that gap between parents’ lived experiences and published research. We are beginning two new research projects with families who have already taken part in our research studies; therefore, we will be joining two powerful forces: your voices and our facts and figures. This way we can make an even bigger difference to children with intellectual disabilities and their families.
If you have previously taken part in our studies we need your help so please keep an eye out for our questionnaire and interviews looking at children’s characteristics and needs, challenging behaviour, your thoughts and feelings and service provision. Letters or emails inviting you to take part in this research will be sent to you from September 2012. It is the time to have your say!
If you have any further questions or would like to request further information about this new area of research please do not hesitate to get in touch.
Email: Dr Jane Waite -
NHS Choices now have pages of information and a video devoted to PWS on their website. The video features Prof Tony Holland, and one of our parent members, Sharon and her daughter Daisy. It is also accompanied by text about the management and a list of current clinical trials. Please forward the link to anyone you think might be interested.
Aim Awards- Understanding the needs of individuals with Prader-Willi Syndrome
Following a successful pilot course, we are very pleased to offer the above course to anyone working or living with a person with PWS.
It is a recognised unit within the Aim Award (previously known as National Open College Network NOCN) and it is the ONLY specific course on PWS which is externally moderated and accredited.
You may be able to use it as evidence towards other qualifications.
The course covers the following aspects of PWS:
Recognising physical and mental health problems
Understanding the need for support for weight management
Recognising behavioural characteristics
Recognising different ways of achieving effective communication
Awareness of relationship and sexual issues
Special risk factors associated with PWS
The course is mainly via distance learning, with access to your own personal tutor, who will be a qualified PWSA staff member. However, there will be one day of face to face learning, normally in Derby.
The course fees are £295 for individuals - this includes attendance at the face to face day and all learning materials. It does not include your travel or postage costs. There is a discount for people in groups of 3 or more attending from the same organisation.
To register your interest and find out more, please contact Kendra Rhodehouse on 01332 365676 or