The History of Essex Carers Network
The Essex Carers Network held its initial meeting in 2004. Several family carers attended the meeting with two staff members from Essex County Council. The family carers came from various areas of Essex. Within a year the numbers grew and many of the younger family carers had completed the ‘Partners in Policy Making Course’. Several of these carers are still part of the Management Team. Essex Carers Network is now a Community Interest Company.
Over the years, Essex Carers Network has supported many family carers throughout Essex and worked hard to try and ensure that people with a learning disability can lead full and meaningful lives. Family carers have been kept up to date with information and encouraged to attend meetings. Practitioners also seek information from the group and members of Essex Carers Network represent family carers’ views on many Boards and at a variety of meetings locally and regionally.
Meet the Team
During my working life I was a primary school teacher. I taught in several different types of primary school with very different types of children. After several years of teaching I was offered a year’s secondment to study for an Advanced Diploma in Education in Cambridge. Then I became a headteacher of a small village primary school and later the headteacher of a larger and very different school with many social problems.
Throughout this time I had always been an active member of my local Mencap group. After my retirement I worked for them part time as their general manager and their Play and Activity Respite Scheme leader. These two jobs gave me great insight into the lives of people with a learning disability and their families.
I served as the Chair of Mid Essex Community Health Council. I was also appointed by the Essex Health Authority as a lay monitor to oversee the move of people from the former long stay institutions into community residential settings.
Later I was to become the Chair of my local group and a trustee of Royal Mencap and Golden Lane Housing.
Whilst my sister-in-law, who was born with Down’s syndrome was alive, I was her joint carer for several years. She lived in a variety of homes from a residential local authority hostel to her own home in the community. In her later years she lived in supported living accommodation and I was and am still closely involved with the management team. Whilst she was in a residential care home in the later part of her life I made regular visits to her. These experiences made me aware of the necessity of purpose built housing and quality care and support.
In 2004, I was part of a great team that brought Partners in Policy Making to the Eastern Region. This is a life changing leadership development course for parents of disabled children and disabled adults. Funding for this, also enabled the setting up the Essex Carers Network which I am now a director.
I live in a small village in West Essex, I am married to Ashley and between us we have three young people, two of whom have additional needs. Up until meeting my husband, I had always been a lone parent, and so life was always very challenging for us as a family.
I’ve always been a huge advocate for inclusion for my daughter Jessie and sincerely believe that all children should be educated together regardless of their disabilities. Despite Jessie having complex health needs and profound and multiple learning difficulties she had always attended mainstream school, sixth form and college with nursing support. Jessie has lots of labels, but a few of my favourites are:- beautiful, gorgeous, giggly, life changer, pathfinder, mood lightener and best of all ‘the light of my life”! I am her deputy for health and wellbeing, and she has a personal health budget which I manage for her so that she can have a life as wonderful as she is.
My previous roles include being the Chair of Uttlesford Local Action group, I have managed volunteers for IPSEA, Support4sight and Rethink Essex Advocacy. I am a Family 2Family workshop facilitator for Thinking Ahead, which helps families to plan for the future. I also currently work for Caring Together charity which is a regional charity supporting family carers across Cambridgeshire and Norfolk.
I truly believe that knowledge is definitely power, and I am always looking to increase my knowledge to help my own family as well as other families across the counties.
Should there be any spare time left over, I love great food, sunshine, outdoor theatre and picking up a bargain at a Car boot!
I sat on a wide range of Partnership Boards and working parties to make sure that carers and disabled peoples’ views were put at the forefront of statutory services and with the support of my local MP’s set up a Disability Awareness Award where the Award winners were presented with the Awards in the House of Commons. I consider that Essex Carers Network is a vital link between carers and statutory services and look forward to supporting them in such important work.
I was involved in the conception of Essex Carers Network back in 2004.
My daughter Becky was born in 1990 and pre-school was diagnosed with severe and complex learning disabilities, large and fine motor difficulties and on the autistic spectrum. Becky now lives independently in her home with 24hr support, in her local village where she grew up and has a community presence,. Becky’s PA support is funded via her Personal Budget and she lives an inclusive, full and busy life with a good mix of activities including volunteer work. I am my daughter’s Appointed Deputy for Finances and also Health and Welfare. Becky’s team are employed directly and I am the Responsible Employer.
I left school with a handful of O’Levels but took the plunge in my early fifties to study The Applied Psychology of Intellectual Disabilities, I graduated in 2013 from the University of Portsmouth with my MSc.
My career was originally in the Corporate sector, however over 20 years ago I started working for the Third sector. Firstly working for Royal Mencap as a Family Information Officer, then became the Manager of the Older Carers Support Project in Essex, combining this role as a member of the Closer to Home project where I learnt my skills as a Support Planner. Having worked for Royal Mencap for many years I then went to work for Purple (at the time it was known as ecdp) as a Senior Support Planner where I set up the support planning department. In 2015 I started working as an Expert by Experience on Care and Treatment Review Panels (for adults with a learning disability who had been sectioned) and lately as an Expert by Experience on Care, Education and Treatment Review panels (to try and prevent children with a learning disability from being sectioned).
I am a mum of two boisterous young boys, one of who has an ASD and SPD diagnosis.
My working life has involved lots of roles including working as an advocate for Family Carers caring for someone with a learning disability which I LOVED (even if it was very frustrating at times)! I still work in a variety of roles and with vulnerable families, often in caring role, although with a wider variety of support needs whilst trying to juggle it around my own caring role.
My biggest challenge to date has been seeing the world as a family carer rather than as someone supporting a family carer. I ‘know’ lots as a practitioner but it’s still so different to experiencing it and being able to fight for the support and access to services, especially when you are in that situation yourself and exhausted!
I’m pleased to have joined the management team to be able to share support and advice and to continue to support other families on their journeys and challenging statutory services provision.
I live in a town called Wickford in Essex. For 25 years I was a school governor at Moat House, Elmbrook school, and Pioneer School. I have always been passionate about being involved where decisions are made that impact the lives of children, young people, and adults who have profound learning disabilities. I have been a parent/carer representative at various meetings, to ensure that a lived experience view is part of the decision-making process.
I have four daughters and one of my daughters has severe learning difficulties. She was in residential care for around 10 years. It became apparent this setting for our daughter was not the right setting. Our daughter is now living a better quality of life in a house, shared with another adult. Both of them have 24-hour care support which is needed, and my daughter is a much happier person. She can go out in the community with the support that she requires.
Once I retired, I was made aware of the work of Essex Carers Network, so I decided to become one of the directors. I have been with the network since the very start. I felt I still wanted to be part of something that influences the lives of others, but I also have a wealth of knowledge and experience that would be helpful to support many family carers throughout Essex and to try and ensure that people with a learning disability can lead full and meaningful lives.
I enjoy walking my dog and love to do a bit of gardening. I also enjoy spending time with my great-grandson, he sure does keep me busy.
Apart from 2 years in London I have always lived in Essex moving from the south to the north of the county in 1985. I have lived in Harwich since 1986 with my husband and then later on we added our 2 wonderful sons to our family. Both George and Harry have additional support needs.
They are now adults and working towards gaining greater independence and finding their way in life. George loves football and has a season ticket to watch his favourite team and Harry is a black belt in mixed martial arts.
I undertook the Partners in Policymaking course in 2005, which is a family leadership course, this changed my life and that of my family. I have been coordinating the Essex Carers Network (ECN) since November 2007, I relish my role in making sure that family carers have the information they need to support their family member to have a good life. I work to ensure the voice of our carers is heard at boards and meetings, thus influencing policy and service development in Essex.
I am part of the regional valuing carers forum and I am an elected family carer rep on the representative body of Learning Disability England which brings together self advocates, families and organisations to work together on common issues around learning disability. By being in these arenas I am able to make sure our families voices are heard both regionally and nationally and that our views and experiences have an impact.
In my very limited spare time I enjoy spending time with family and friends with good food and a little gin! When time allows I also enjoy various crafts including textiles and art journaling.
I have always lived in Essex but moved from the south to the north in 1982 aged 11 with my family. I remained in Manningtree since then because it’s such a beautiful place. Here I met my husband David and we now have two sons Joe and Sam, who are both in their 20s.
My first career was in banking, but since having my boys and discovering Joe had additional support needs, I grew a thirst for knowledge to enable him to have the best parent I could possibly be to support him. To this end I began an almost 20year career as a special needs learning assistant, in preschool, key stage 1 and key stage two. I also gained Higher Level Teaching Assistant status and was able to teach whole classes and support other teaching assistants in their training. I worked closely as SENDco assistant (special educational needs and disabilities coordinator), preparing reports, assessing students and advising parents through the EHCp (education and health care plan) process. My focus always was to support the children and families through what I knew could be a particularly challenging time, to empower them and give them confidence.
Whilst working at the schools I also began volunteering for Colchester Gateway Clubs, a charity who provide social clubs in Colchester and Clacton for adults with a learning disability and autism in North Essex. They also provide an advocacy service, and I was able to signpost members and families who needed guidance and support. I was offered an employed position and working with the members was an amazing experience and I really enjoyed supporting some to try new activities and gain new skills. My son enjoyed the clubs he attended and even met his girlfriend there which was one of his goals.
Once my sons had left education I decided to as well and began working more with Colchester Gateway. This included during the Covid Pandemic, where I continued to work, but on more of a 1 to 1 basis, supporting members who lived alone to feel less isolated and support practically where necessary. I attended a bereavement course to be able to support members who had lost family or friends through the difficult time.
In my spare time I enjoy walking my two dachshunds with my family. Sewing and crafting are my hobbies and allow me to get creative, which I love.
My association with Essex Carers Network began many years ago, I have welcomed the information and support from the network including many webinars on subjects like Mental Capacity, Appointee and Deputyship and Thinking Ahead. I have also completed surveys and attended meetings as an expert by experience Change Maker for the network.
I am so pleased to be working as an Assistant Coordinator and look forward to helping families to feel empowered to confidently support and advocate for their loved one. I am also keen to ensure the providers of services, commissioners and partners understand and appreciate the role our families play in society and that their voices and views should be the first sought when decisions and policies are being reviewed.
I live in West Essex with my husband and my two beautiful girls. Both my daughters are school-aged and require additional support. My eldest attends a specialist school provision and my youngest attends a local mainstream primary school.
Prior to becoming a parent, I went to university to study finance, and once graduated I went into full-time employment as senior accounts.
Due to the demands of family life, my own illness, and the needs of my eldest daughter, I had to leave my full-time job to become a full-time parent.
When seeking support for my daughters it becomes apparent that support for your child is not an easy process, especially when they need additional support. I am a proactive parent and have taken any opportunity to learn how to best support my children, by attending courses and using resources that help them develop in the way that is suitable for them. On this journey, I have met some wonderful other SEND parents, and it soon came to light that we all are dealing with difficult situations and the lack of support and services there are for SEND families.
I started volunteering for Essex Family Forum around a year, as I felt passionate about the ethos the forum has. Being part of the forum, ensures the lived experiences of our families are heard and influence the decisions that affect our families. The more members they have the louder our voice. In February 2019 I was honoured to be asked to join the Forum team, as one of the development workers. After leaving my role with the Forum I went on to achieve a level 2 certificate in understanding children and young people’s mental health. I have spent the last 18 months supporting my family due to the pandemic. Whilst I have been in between employment I volunteered for a local food bank. Previously having worked in the voluntary sector, whose primary purpose is to create social impact and deliver better services to families, has made me passionate to continue to work in the not-for-profit sector. I also manage the Facebook page for families that attend my eldest’s daughters’ school and help with coffee mornings, and events held at the school.
To keep my mental and physical health in good shape I like to regularly attend a weekly Pilates class, HIIT, and weight training ¾ times a week. This really does help with coping with daily challenges and managing stressful situations. I love a good podcast from comedy to listening to inspirational speakers.