I have grown up twins; one with Cerebral Palsy (CP).
From November 2007 to 2016 I served as Vice Chair before taking up the chairs position.
The best bit about LPCF for me is supporting parents, giving them lots of information and organising events for them to gain as much information as possible. This relates to the fact that when my daughter was diagnosed I was given little information about Cerebral Palsy and I became a regular at the library, reading anything and everything I could!!
My pet hate - for me it has to be meetings that don't achieve an outcome.
My strengths -organisational skills, patience!
My weaknesses -have a constant chimp on my shoulder!
What the LPCF has given me? More confidence in my own abilities, feeling of belonging and that I am not alone, helpful strategies through the parent's workshops and lots of useful information!
What I have learnt along the way - it's useful to have a sense of humour and be able to laugh at yourself and believe you me, I have had plenty of opportunity!!
Tim (Trustee) Vice-Chair
I have worked with carers previously so whilst not being a carer myself I feel I have some understanding of the issues faced by parents.
I have also worked with young people for 25 years..
I also have a background in group development and fundraising so will be able to support the charity behind the scenes.
Rachel (Trustee) Treasurer
Originally I went to one of the LPCF coffee mornings when my youngest child went to primary school and offered to do some voluntary work for the group.
I now attend many meetings, meet with Service Providers, Local Authority, Workshops, large events and I am still learning new things, as well as helping other Parent/Carers by letting them know what information/support is out there for them.
Currently I support 2 coffee mornings and meet many like minded people.
My background was in Community nursing.
I am a mum of 3 girls and the eldest is a young adult with Severe Learning Difficulties, complex needs and GDD and after 11 years of asking was diagnosed with ASD.
My child has the mental age of a 5/6 year old, inside a young adult body which presents many challenging problems now and in the future.
Michelle (Trustee) Secretary
We are parents to two beautiful children.
After researching on the internet support groups for children with special needs, we came across the Lincolnshire Parent Carer Forum.
William visited the next coffee morning in Louth and was pleased to meet a group of like minded parents in a relaxed atmosphere over coffee. Our main interest in the forum at the time was people's own experiences of getting a statement and transition from primary to secondary school.
Since then, we have attended some very useful and informative workshops about the changes to the SEN system due to take place in September 2014.
As parents, we have made new friends, who understand and have similar experiences to ourselves, we have become much more informed and confident in what the future holds for our children as a result of being part of the Lincolnshire Parent Carer Forum and as a result now want to help and support other parents.
The forum is a valuable voluntary group which provides a vital link for parents who at times may feel isolated and not listened to.
My name is Carol and I am a Grandma of a child with Cerebral Palsy. I joined the LPCF in 2012 as they help to support families of children with disabilities around Lincolnshire.
I help them by giving practical help at their Parent Workshops and Information events and help to sustain them through fundraising by joining their lottery club.
I enjoy baking cakes for the events.
I love being part of their group and have learnt a lot about being part of a family with extra challenges.
I have two girls Chloe and Emma who are both now adults. One of the reasons I wanted to become a Trustee of this wonderful group is because of the support they offered me over the years as one of my children has a genetic disorder.
Also, I wanted to offer my experience as an Early Years Teacher especially with my skills and knowledge relating to the challenges faced by children and their families.
The social side of LPCF is something I love, getting the opportunity to chat with like minded people and not forgetting the delicious cakes that are always on offer from the marvellous Carol.
I am a parent of three children, one of whom has a diagnosis of ASD.
My background is in nursing.
Since 2011 I have attended the LPCF Coffee Events, on and off before deciding to volunteer to help other parents and let them know they are not alone.
Hello! I am a mum to four children... twin boys ....one who had cancer at 5 years and the other who developed epilepsy at 19 years! I also had two girls, the youngest was born with severe dystonic athetoid Cerebral Palsy plus epilepsy. We spent 17 years of living in various hospitals on and off as a result.
My background was that of a Primary school teacher.
I was a founder member of the LPCF many years ago , but have kept my 'eye'
on its' progress!!And my, what progress!!
I was also an IPS ( Independent Parental Supporter) from 2000 - 2007 , which included helping parents fill in the never ending forms once their child is suspected as being ' a little bit special'.
I started two Parent/Carer groups with the intention of providing information and support plus the opportunity to exchange ideas and experiences with each other. Our lives are so busy caring for our children we tend to forget to nurture ourselves.
Sadly our youngest,Lucy, aged 17, passed away in 2011. We were able to provide love and care at home - where she wanted to be, surrounded by family, friends and her wonderful carers.
I would like to use our experiences of her end-of-life care in a positive way.
Finally, I would like to bring my compassion, personal experience and good listening skills ( or so I've been told!) to the LPCF and hopefully repay a fraction of the support and strength I was given in the past.
As a retired Children's Services worker of 30 years I initially came across LPCF by providing their Website and DataBase management, although I was aware of their existence previously.
In my past life I worked within Youth Centres and Careers Centres and was always on a mission to address Discrimination and Equality, especially having experienced its impact on people within my life.
At 15 my stepson was suddenly, diagnosed with Type 1 Diabetes and it was a game changer for all concerned.
There were positives to report, and the school was excellent as are his current employers but the effects of such a change were, at times challenging, as all around had to adapt, change and learn.
Moving on to the present I now have a partner with a child with CP whom I enjoy and treasure. A genuine hidden gem ! !
But in becoming involved with my partner, my understanding of Disability and the snowdrift of bureaucratic tape which one has to navigate came more to light.
Quite definitely, my eyes were stretched wide open by the challenges, even more as I came to realise the enormity of raising disabled youngsters even into their adulthood.
The main difficulties of raising a child with disabilities, in my view, are often not the disability, they are the hurdles and hoops parents have to overcome to get even the most basic movement from providers and the lack of co-ordination between services run by professionals
And so it was I have chosen to volunteer to assist and help Parent Carers.
If I have one appeal to these who read it is that LPCF's funding is partially based upon its membership numbers so PLEASE EVERYONE, make sure you get people registered AND make sure you update your details every 2- 3years.
I am a mum of 1 girl and 3 wild boys. Also an auntie to 4 crazy boys who keep myself and my sister on our toes. My eldest has now been diagnosed with ODD after years of battling it.
My youngest nephew has been diagnosed with ONH & SOD and he is also severely visually impaired it's been a rocky road for my sister too who I have tried my best to support.
I am a parent carer, I have 4 boys, my youngest boy is 6 yrs old, at 6 months old he had a diagnosis of Septo-Optic dysplasia and Optic-Nerve hypoplasia and totally blind in both eyes.
Its been a bumpy road along our journey, with health services to education services and EHC plans and lack of services for visually impaired children in Lincolnshire.
When I heard of LPCF, I felt it was lovely to know there were others that understand this feeling.
I am looking forward to being able to signpost others to services that could help with their needs, as well as giving them the opportunity to give feedback on their experiences and getting them heard by others.
My name is Lorraine and I am a retired Community Midwife. I am carer for my eleven year old Grandson who has complex needs including ASD, ADHD, learning delay and attachment disorder.
My decision to join the volunteer team was based on the brilliant work they do, being the voice of carers and organising signposting and information days.
What I can offer is a knowledge of the NHS and how Health Organisations can impact of families facing the many and varied challenges our children give us on a daily basis
I'm a Gran Carer supporting my daughter and really wanted to support LPCF as I believe they work hard as volunteers to help improve things for all parents and carers across Lincolnshire.
Relatively new to team but already feeling very welcome and involved.
Lots of information and they really support their volunteers.
Hi Pam here.
I help out as and when I can at events.
Love meeting people and enjoy the catering with Carol
I am a mum of two girls, my eldest has a few SEND issues and is currently undergoing assesments to get her the help she needs. It has been a long journey that has not quite gone the way we want, and still have many hurdles to jump, but main issues seem to be dyslexia, dyspraxia and possible ADD.
My background is mainly in childcare, I worked as a nursery nurse for over 10 years before entering the fun of becoming a mummy.
I am also a fully qualified dental nurse, but am not practicing at the moment, but still fascinated by everything NHS and dentistry.
I love spending quality time with my large family including long walks with my beloved dog, games days and socialising with other mum friends
I understand the journey can be hard for parents, I've fought for many years (7 in total) to be heard regarding my daughters issues, I can lend a sympathetic ear, I am a great listener.
I am Mum to two lively children, one of whom is diagnosed with ASD, Global Development Delay, epilepsy and learning difficulties. Our journey through assessment, diagnosis and educational support are what brought me to join LPCF, first as a member and later as a volunteer.
I am a qualified secondary teacher and tertiary lecturer and have also worked in a pastoral role with young people, facilitating liaison with parents and other agencies. My passion for education has always been driven by the desire to help young people to raise their aspirations, and my main aim in volunteering with LPCF is to help parents and carers to advocate for their children's progress and development.