Renata Watts Frsa

Renata Watts Frsa Email and Phone Number

Co-Director Special Needs Jungle, Co-Founder SEND Community Alliance, Foster Carer @ Special Needs Jungle Ltd
farnham, surrey, united kingdom
Renata Watts Frsa's Location
St Albans, England, United Kingdom, United Kingdom
Renata Watts Frsa's Contact Details

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About Renata Watts Frsa

My mother told me that as a child she rarely worried about me. She said that I always knew my own mind, and it didn't matter what the other children all did, if I believed something was right, I would follow my instinct and not the crowd.It also meant that she knew that if I got in trouble, it was entirely my own doing.It turns out it's also a bit of an advantage when you end up being the parent of three biological children and one foster child all with additional needs which include ASD, ADHD, Dyspraxia, Anxiety, Developmental Language Disorder, complex medical needs, physical disabilities, rare disease/ undiagnosed genetic disorders and trauma.This means that over the years I have worked with a wide range of professionals from health, social and educational services. As a result I have a good understanding of what good practice looks like and the value of co-production.Life hasn't always been easy, in fact, often far from it, but I have always felt that my energy is best spent trying to solve the problem rather than simply complaining about it. I also knew that if I was struggling, then other people who aren't in a position to fight their corner must be too.Over the last 15+ years I have juggled family life with working with local authority services, businesses, academic institutions, health services, children's charities and even the government. I also sit on various advisory boards.I am immensely proud of everything that I have achieved so far, none more so than bringing about the world's first nurse for undiagnosed children at Great Ormond Street Hospital.In 2014 I was delighted to be invited to become a Fellow of the Royal Society for Arts for my work towards improving services for disabled and medically complex children and to be nominated for a WeGo health award.I am co-director of Special Needs Jungle, a CIC dedicated to providing information for parents of children with special educational needs, disabilities and medical conditions and those working with them. In 2020 we won the Your UK Parliament Award for volunteers of the year and regularly work with government Ministers to ensure issues facing families of disabled children are heard at national level.I am also a co-director and rep for Herts Parent Carer Involvement, the parent carer forum for Hertfordshire. I was recently awarded the Herts Community NHS Trust ‘Leading Lights’ award for my work helping to develop a care coordinator pilot to support families of children with complex needs.

Renata Watts Frsa's Current Company Details
Special Needs Jungle Ltd

Special Needs Jungle Ltd

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Co-Director Special Needs Jungle, Co-Founder SEND Community Alliance, Foster Carer
farnham, surrey, united kingdom
Employees:
3
Renata Watts Frsa Work Experience Details
  • Herts Comunity Nhs Trust
    Pilot Patient Care Coordinator For Children With Complex Needs Steering Group
    Herts Comunity Nhs Trust Jan 2020 - Present
  • Special Needs Jungle Ltd
    Director
    Special Needs Jungle Ltd Jun 2016 - Present
  • Hertfordshire County Council
    Admission Avoidance: Learning Disability And/Or Autism Keyworking Pilot Steering Group
    Hertfordshire County Council Nov 2020 - Present
  • Hertfordshire Cyp Palliative Care Network
    Herts Children And Young People’S Palliative Care Network
    Hertfordshire Cyp Palliative Care Network Apr 2019 - Present
    The provision of palliative care for children and young people across Hertfordshire requires an integrated, multi-agency approach. Children's and young people’s palliative care should not be seen in isolation, but as part of the wider development of children’s services A multi-agency Network has been established to develop an integrated multi-agency approach to the commissioning, provision and delivery of palliative care for children and young people with life-limiting and life-threatening conditions in Hertfordshire, which recognises and meets their different needs.The Network is linked with the East of England Children and Young Peoples Palliative Care Forum which links into the East of England managed Clinical Network
  • Bmj
    Patient Reviewer British Medical Journal
    Bmj May 2016 - Present
  • Just Bring The Chocolate
    Freelance Consultant For Sen, Undiagnosed & Medically Complex Disabled Children. Writer & Blogger
    Just Bring The Chocolate 2006 - Present
    St Albans
    I'm a passionate advocate for families of children with undiagnosed genetic conditions, complex medical needs and both special educational needs as well as physical disabilities. I have an established reputation for being an effective problem solver and planner, helping charities find new directions and become effective communicators. I have had a significant role in helping the project SWAN UK (Syndromes Without a Name) become well established, shaping new opportunities and encouraging the growth of their online presence.I have acted as an independent consultant for various children's charities and have also written articles, delivered talks and produced information and resources for these organisations.I also sit on the Hertfordshire Parent Carer Involvement Board who help and advise Hertfordshire County Council about services for disabled children and I am also a member of the advisory board for SWAN UK and Roald Dahl's Marvellous Children's Charity. I am also a primary school governor (lead subject inclusion) and recently became a Health and Care change agent based on my work trying to change doctor's attitudes to parent carers and in trying to establish a care pathway for undiagnosed children within specialist NHS hospitals.In my spare time I enjoy designing and illustrating and the website Just Bring the Chocolate is a constant work in process. My website has been nominated for awards numerous times as has been recognised as on of the top 20 special needs blogs in the UK.
  • Special Needs Jungle
    Columnist
    Special Needs Jungle Jan 2014 - Present
    I write about NHS, undiagnosed children, SEN, medically complex and disabled children.
  • Herts Parent Carer Involvement Community Interest Company
    Board Member And Rep
    Herts Parent Carer Involvement Community Interest Company 2013 - Present
    I joined the PCIB with the aim of helping to improve communication between Children Schools and Families/NHS Hertfordshire and parents and carers of children with disabilities.The Board seeks to work in partnership with statutory and voluntary agencies to improve services for disabled children in Hertfordshire. They aim to ensure that the voices of parents and families are heard and that they are able to work with all agencies to shape policy and to influence change.
  • Swan Uk
    Independent Consultant
    Swan Uk 2012 - Present
    SWAN UK is a project run by Genetic Alliance UK which aims to offer support and information to parents of children with undiagnosed genetic conditions. I'm currently helping develop their profile online and have developed and run the SWAN Blog Post Awards including designing the logos. I have also designed the logo for Undiagnosed Children's Awareness Day and am involved in promoting it online. I'm also part of the advisory committee involved in trying to implement care pathways, development of professional network, and influencing government policy.
  • Hertfordshire Community Nhs Trust
    Continuous Quality Improvement (Cqi) Programme Working Group
    Hertfordshire Community Nhs Trust Jul 2019 - Nov 2020
    Hertfordshire
  • Nihr Health Services & Delivery Research Programme
    Concord (Coordinated Care Of Rare Diseases) Study Steering Group Member
    Nihr Health Services & Delivery Research Programme Jan 2019 - Nov 2020
    CONCORD is funded by the NIHR Health Services and Delivery Research programme, and will run until the end of November 2020. The aims of this study are to use quantitative and qualitative research methods to investigate how care of people with rare diseases is co-ordinated in the UK and how patients and families affected by rare diseases and health care professionals who treat rare diseases would like them to be co-ordinated.
  • Great Ormond Street Hospital For Children Nhs Foundation Trust
    Pay More Attention Study: Parents’ Advisory Group
    Great Ormond Street Hospital For Children Nhs Foundation Trust Jan 2017 - May 2019
    London, United Kingdom
  • Genetic Alliance Uk
    The Hidden Cost Of Rare Diseases: Impact On Patients And The Nhs (Feasibility Study) Steering Group
    Genetic Alliance Uk Dec 2015 - Oct 2016
    The Hidden Costs project is a feasibility study to prepare the ground for a full scale research project. We anticipate that the research questions for a full scale project will be:* What is the economic cost of coordinating versus not coordinating rare disease services within the NHS? The question includes costs to the NHS and to patients themselves.* Is there a psychosocial benefit to patients and their families of coordinating rare disease services within the NHS, and if so how is this manifested?
  • Ucl
    Ucl Post-Graduate Clinical Psychology Training Course Service User And Carer Reference Group
    Ucl Jun 2015 - Jun 2016
    Ucl
    UCL is the largest post-graduate clinical psychology training course in the UK, with 42 trainee clinical psychologists per year (+8 international trainees), 126 in total. The service user and carer committee was set up to gain a different perspective on a wide range of areas relating to the running of the course.
  • Enhance
    Project Steering Group
    Enhance Jul 2014 - Dec 2015
    University Of Hertfordshire
    The ENHANCE study stands for “Enhancing resilience and self-efficacy in the families of children with complex health needs and disabilities: sharing and embedding lessons from the Family Nurse partnership.”Research to date demonstrates that families experience physical, social and emotional stress in coping with day-to-day living with their disabled child, and that the burden of care has significant impact on quality of life, utilisation of services and mental health of family members (Whiting, 2009). The introduction of the Key Worker or Lead Professional model of support for families is widely advocated with some evidence of improved outcomes for children and families , though economic evaluation of this approach is somewhat limited. The families of children with disabilities and complex health needs are major users of health services, though there is very little understanding of how a Key Worker approach might impact on care from both service/organisation and financial perspectives. This study aims to explore this.ENHANCE is supported by an expert Steering Group made up of University staff from CRIPACC (Centre for Research in Primary and Community Care) as well as the Children’s Nursing and Mental Health Nursing Teams, representatives of the NHS Trusts, a Parent-Carer representative and clinical ‘experts’ including psychologists, nurses and a paediatrician.
  • West Herts Nhs Trust
    Pals Officer
    West Herts Nhs Trust 2001 - 2002
    West Herts Hospitals
    The Patient Advice and Liaison Service was just being established in the West Herts Hospitals at the time I took the job. Looked after Watford General Hospital, Hemel Hempstead Hospital and Mount Vernon.

Renata Watts Frsa Skills

Blogging Publications Creative Writing Feature Articles Copywriting Research Freelance Writing Editing Copy Editing Writing Policy Web Content Media Relations Editorial Public Policy Public Speaking Photography Magazines Journalism Magazine Articles Wordpress Newsletters Coaching

Renata Watts Frsa Education Details

Frequently Asked Questions about Renata Watts Frsa

What company does Renata Watts Frsa work for?

Renata Watts Frsa works for Special Needs Jungle Ltd

What is Renata Watts Frsa's role at the current company?

Renata Watts Frsa's current role is Co-Director Special Needs Jungle, Co-Founder SEND Community Alliance, Foster Carer.

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What schools did Renata Watts Frsa attend?

Renata Watts Frsa attended University Of Winchester, University Of Hertfordshire, St Albans High School.

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Renata Watts Frsa has interest in Social Services, Children, Civil Rights And Social Action, Education, Human Rights, Health.

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Renata Watts Frsa has skills like Blogging, Publications, Creative Writing, Feature Articles, Copywriting, Research, Freelance Writing, Editing, Copy Editing, Writing, Policy, Web Content.

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