Kate Linke — Chair

I’ve lived in Enfield for 18 years now. I have three children. My 11-year-old son Noah has autism. He’s non-verbal and needs lots of support and help with life skills. He's now at a residential school where he is very happy and progressing well. I got involved with the Parent 2 Parent group and subsequently Our Voice some years ago because of Noah.

I believe that there is a need for parents of children with disabilities to have a platform. Trying to access facilities for our disabled children can be confusing, disjointed and very scary. I strongly believe that our children need to be regarded holistically. I hope that my own experiences of life with a disabled child will be valuable.

I feel very strongly that families with disabled children need a voice, especially when English is not their first language. I would like them to be much more effectively represented. Given that we are such a diverse borough, it is quite shocking how difficult some things are to access and how little material there is in other languages.

I’m also keen to set up a Parent buddying network as I feel the support parents in similar circumstances can give each other is absolutely invaluable. It would be great to establish a network like this in Enfield.

Carol Mustafa — Development Coordinator

My family consists of my husband Mus, my son Hassan who is 15 years old and my daughter Yasmin who is 8. Hassan has severe physical difficulties as well as profound learning and medical needs. He is a fulltime wheelchair user and has attended Waverley School since nursery age. He's also a very sociable young man who really enjoys school and being around people.

In the early stages of pregnancy I was told that Hassan had a very severe condition called an occipital encephalocoele as well as a cleft lip and palate. It was devastating news as I was told he would be severely disabled and may not live beyond a few minutes or hours. I decided to continue with my pregnancy as I wanted to give my baby a chance. When he was born Hassan was very unwell and could not breathe for himself. Once stable he was transferred to Great Ormond Street Hospital. I did not know then that this would be where I would spend most of the rest of Hassan's childhood, where he would have to undergo many operations and where we would meet nurses and doctors that can only be described as amazing.

We were allowed to bring Hassan home for a weekend before he had major brain surgery. It was thought he would not survive and it was a weekend I will never forget. Unfortunately he suffered hydrocephalus as a result of the operation and the brain condition and needed a shunt to keep him alive. He also needed plastic surgery to repair his cleft lip and palate, and reconstruct his nose. From then on Hassan had surgery nearly every year of his early life for different conditions that developed. It has been very very stressful at times and even now the medical conditions are still present and ongoing.

But amazingly, Hassan has managed to keep smiling through all of this. And if he can still smile then so can I. Hassan has a lot of interaction with close family members who have supported me and my husband through difficult times and he loves to socialise and take part in leisure activities with his uncle Antony.

Having Hassan has been a journey that has made me who I am today. I have met many wonderful people that I would otherwise never have met, and I have had experiences that have made me look at life in a totally different way and helped me realise that every day is very precious.

The care and support we received at Great Ormond Street inspired me to work as a volunteer on their parent's telephone support network. We support parents whose child is admitted to the neonatal or paediatric intensive care units. I do this work from home under the direction of the intensive care sisters.

My background is in education and health - I've worked for the district nursing team at St Michael's hospital in Enfield and also at Chase Farm Hospital in midwifery. For over ten years I worked in special and mainstream schools supporting children with physical disabilities, autism and learning difficulties. I have undertaken level three studies at Enfield College in Nursing and Health. Then at Middlesex University I studied nursing, early childhood studies and social sciences.

I have lived in Enfield for most of my life. For me, one of the best things about the Borough is that you can be in town very quickly yet also have easy access to nearby countryside. Some of my favourite places are the fruit and vegetable farm on Hadley Road and Whitewebbs. Although there are lots of green spaces in Enfield, one thing that I would like to see improve is the equipment in parks and play areas for children in wheelchairs. I'd also love to see more sensory equipment for children with disabilities. And I would like to see better housing services for disabled children.

I have been part of the Our Voice forum for over a year and have found it to be an excellent source of information and support. If only it had been around when Hassan was younger! I decided to apply for the role of Development Coordinator as I wanted to do something different that involved working directly with people and children with disabilities. I also felt that my background, skills and life experiences would help to take the Our Voice parent forum forward.

Fazilla Amide — Committee Member

I was born in Enfield and have an 8-year-old son, Kareem, who has complex additional needs. My family are from Mauritius which is a lovely island in the Indian Ocean. Both my husband and I work and Kareem attends West Lea School. He loves going to school and is progressing well. He has a missing piece of chromosome which has resulted in a number of health issues as well as global developmental delay. He is also on the autistic spectrum. I am very busy as I am also a Parent Trainer for Enfield Joint Service and Our Voice, running self help/support workshops for parents of children with additional needs.

I decided to join the Our Voice management committee because I want to make a difference! Disability rights have been improving over the years and this has only been achieved through the hard work and campaigning of many parents, carers, families and adults with additional needs. Through the important work that Our Voice does, we can continue to campaign, lobby and influence to keep the focus on making things even better.

Through involvement with Our Voice I want to improve the lives of both the children with additional needs as well as their families. We need to work together with the professional services who support us, to influence them and provide important insights into our world, helping them really understand what it’s like to be in our shoes, so they can better plan to meet our needs, particularly in this tough economic climate.

Enfield is so multi-cultural, it's really exciting and varied. Also, it’s not only ideal for getting into central London, but great to go out and get away from it all, whether it's going to the lovely parks or to Epping Forest. However, improvements are needed — particularly the speed of responsiveness of the Service Providers in Enfield. I think they are all working in the right direction and want to improve things, but whether it’s bureaucracy or traditional ways of working/thinking, things seem to move very slowly in some areas. I work for a commercial organisation which is constantly changing. This has its challenges too, but on the upside, it is always adapting and responding to our ever changing needs and I think the same should be happening with all the Services, not just in Enfield but all the London boroughs.