The forum reaches out to over 800 parent carers all across the borough.
Here are some of our more active members talking about why the forum is important to them.
My Name is Emma Taylor. I am a parent of two children with additional needs. I am also a co-ordinator for Scope’s Face 2 Face service in Dudley and Sandwell.
I wanted to be part of the Forum because I believe it is really important that parent’s feel their views are heard and they are included in the design of future provisions and services that surround their families.
I’m a mum of three, Andy 15 with ADHD, Ethan 7 microcephaly, 7th nerve facial palsy, poor sight through left eye and ADHD – and Erin 4.
I run the ADHD and ASD parent support groups and am also involved with PARTICIPATE at insight house.
I want to be on the group so that I can offer more help to other parents/carers and hopefully be able to give them some of the answers they’re after. It would also hopefully give me the chance to ask their questions for them and help them feel like they have a better voice about the services they receive.
I chose to be part of the steering group for this forum because I am a mom of a special needs daughter. Sarah is now 17 years of age and I am in fact currently going through the transition process. In addition I help to run a special needs Saturday club namely Smile, for parents/carers and their special needs children and siblings. This forum wants to reach out to parents/carers like myself and other families, we all need to work together to support each other and offer friendship to deal with our day to day challenges. Together we can work to ensure we are heard and that we have a say in decisions made with regard to our children and young people. Being a parent/carer of a special needs child can be lonely, you can feel isolated, scared and misunderstood. Let’s work together to change this.
I gave up work 7 years ago to look after my disabled daughter.
I really enjoy coming along and helping out with Participate. It really helps to keep up to date with what’s going on in the “carer community” and the bonus is you get to have a good natter with other parent/carers.
I work as a physiotherapist (adult services) within Dudley and I am a mum to 2 boys, Ben (4), and Zak (3). I have recently become a volunteer with the Dudley Bliss Family Group. Ben was a full term baby but at the age of about 14 months began to show signs of developmental delay. Since starting school Ben has been given a diagnosis of an Autistic Spectrum Disorder and we have been unsuccessful in gaining a statement. Zak was born 8 weeks prematurely but in a very poorly condition. He spent 8 weeks on the neonatal unit and surprised everyone with his progress. He is now a happy little boy who has been given a diagnosis of Cerebral Palsy with a left hemiplegia and will start school this year. I believe all parents should have a knowledge of services available to their children, and have a voice in how these services are developed.
I am currently a Teaching Assistant, working with children who have special needs at a local primary school. I am also a mum to Louis who is aged 8 and Lola-Grace who is 17 Months
Louis was born with a chromosome deletion (5q14.3), which has left him severely disabled. I have had lots of experience working with children who have special needs in a variety of settings. However since Louis was born I have experience on an every day level and I now also understand how important it is for me to be an advocate for Louis.
I joined the steering group, to make a difference in the services that are on offer to special needs children, I am Louis’s advocate and think it is important to fight for the services he requires. I seriously believe as a forum we can influence change and make professionals listen to parents/carers.
I am a mum to two boys, Huw and William. Huw was born extremely prematurely in 2006 and had many medical complications causing him to remain in the neonatal unit for 5 months and on other wards for much longer. Huw continues to have some medical and physical problems and he has been diagnosed with atypical Autism (Aspergers syndrome) and atypical ADHD, pervasive development disorder and sensory processing disorder. In 2009, I set up and now help to run a Bliss family support group for families who have had a baby in a neonatal unit, because I didn’t want other families to be as isolated as we were when Huw was young. Huw is in mainstream school, currently with a full time statement. We were successful in holding Huw back a year from school, as if he had been born when he was due. I joined the steering group because I strongly believe that parents’ voices should be heard when decisions are being made that effect the lives of their children, and I would like to be one of those voices and to involve other Bliss parents.
I am mom to 3 girls, all were premature. Paige was 10 weeks early in 2006 through HELLPS Syndrome and spent 9 weeks in Neonatal. Kayley was 5 weeks early in 2008 through severe pre eclampsia and spent 10 days in hospital and finally Lexi was 9 weeks early in 2010 once again through HELLPS Syndrome, she spent 8 weeks in neonatal. I got involved with BLISS in 2012, initially with the idea of becoming a buddy at the hospital to support families whilst their babies were in hospital but took on a little more. I help to run Dudley Bliss family support group and am a buddy at Russell’s hall hospital. All my girls are doing extremely well and are my motivation to help others who are going through a truly difficult time.
Rachel is mom to a daughter at university and twin boys with disabilities. She is also the CEO of the charity We Love Carers. We love Carers exists to reduce carer isolation and ensure people have access to support they need to fulfil their caring role. We Love Carers is run by carers for carers.
Nicki Burrows and Donna Roberts
Nicki and Donna are excited to be working together along with parent carer groups across Dudley borough and we are very keen to build on the excellent work that is already happening across the borough. We are committed to ensuring that parent carer voices are heard to influence decisions and improve changes to service delivery and redesign. Dudley CVS have recently been awarded the contact a family contract to work with parent carers and facilitate the development of the Dudley parent carer forum 2014/2015. Working together for change is an independent parent carer forum that is endorsed by DMBC and working closely with the Clinical Commissioning Group. We are very keen to build on the excellent work that is already happening across the borough.
The independent forum is supported by staff from DCVS who will host and facilitate the project for 2014/15 with a view to the forum being fully constituted and a stand alone organisation by 2015/16. Working together for change is endorsed by DMBC and works closely with clinical commissioning group who are supporting the development of the forum by contributing staff time and resources.