Support for parent carers

Bristol Parent Carer Forum covers the A-Z of special educational needs and disabilities (SEND) in Bristol. We provide information to all SEND families, with or without a diagnosis. This page was created to bring together all of the support that Bristol has to offer. For a calendar of SEND events in Bristol, click here.

As a parent carer, you may sometimes feel a little bit like an imposter if the child you care for doesn’t have a diagnosis. It is essential to realise that your child, or the child you care for, does not usually need to be diagnosed in order for you to access support and advice. It’s really important that you seek help and support as soon as you feel you need it.

Many of the organisations on this page are run by parents and carers. They know exactly what it feels like to wait for a diagnosis; they will make sure you feel welcomed and included. That’s not to say that diagnosis isn’t important, we believe that it is, but we also believe that lack of diagnosis should not be a barrier to accessing the right support, at the right time and in the right way, for each family.

You can find details of each organisation listed below as well as in our SEND leaflet, along with a short description of the group, who they aim to support and how they generally operate. Please get in touch with any that you feel will be able to support your family.

Bristol Parent Carers Resource Library

What is a parent carer Forum?
Information on local special educational needs and disability support organisations

In January 2023 we worked with other organisations across Bristol to create a leaflet of all special educational needs and disability support organisations – view it here

Information on local health services and courses

Information on Autism across Bristol, North Somerset and South Glos also see Bristol Autism support organisations here

CCHP information on the autism assessment

CCHP Autism resource pack across Bristol, North Somerset and South Glos

School nurse info – covering various issues including sleep, difficulties with eating and food disorders and emotional well being.

Sensory Processing – a short video

Sensory Processing difficulties – leaflet

Sensory Processing difficulties – a free online webinar created by our colleagues at North Somerset Parent Carers Working Together. Use the slider to skip to the relevant section if needed

Support to calm children with sensory needs – this leaflet helps explain how proprioceptive activity can be used to help calm an overactive and excited child

Supporting sensory difficulties connected to noise – this leaflet can help families understand how to support children and young people who struggle with noise

Information on the vestibular system

Supporting brushing teeth – a helpful leaflet for those with sensory needs who struggle with teeth brushing

Supporting chewing and biting – a leaflet with support ideas for children who like to chew and bite items

Supporting children and young people to use visuals – a leaflet that explains how to use visuals, this can be particularly help for children that may be autistic and those that have disordered or delayed speech

Supporting co-ordination – this information supports children many families may describe as ‘clumsy’. Your child may need help to put clothes on, do up zips, tie shoe laces, balance or climb on play equipment, write letters or draw

Supporting dressing

Supporting emotional regulation – a helpful leaflet on helping your child stay regulated, this can be helpful for children who have meltdowns

Supporting hair brushing – hints and tips for families

Supporting repetitive behaviours – this leaflet helps families understand repetitive behaviours, these tips will be helpful even if your child has not received any sort of diagnosis

Supporting showering and washing

Supporting social skills – this leaflet helps families understand how to support the development of social skills, these tips will be helpful even if your child has not received any sort of diagnosis

Supporting understanding & communication – this booklet explains ways families can support children and young people with their communication needs

Speech support (coming soon)

Paediatrician info (coming soon)

Information on support & breaks away from you child or accessing community events

For more information on support to access support and breaks away from your child and support to access the community, see our page here

Support for parent carers

Benefits

For information and support connected to any benefits, see:

Turn to us: here and here

Contact: here

For information specifically connected to Disability Living Allowance (DLA) see:
Contact Webinar: here and here
For help completing the DLA form in:

English: see here and here
Arabic: see here, here and here

For help appealing a DLA decision see here.

For help appealing a DLA decision see here.

Bristol Pink Card

Bristol City Council is required to keep a register of disabled children and young people in the city.  Families who are part of this register are given a pink card which means they can access events and activities and be recognised as a carer. See here for more info.

Carers Support Centre

Carers Support Centre is a charity which provides support, information and advice to carers of any age living in the Bristol and South Gloucestershire areas.
They provide information on money and benefits, legal rights, support for yourself as a carer, practical support in the home such as disability adaptations, residential care and support in paying for care. For more info see here.

Families, Local Offer, Resources and Advice (FLORA)

The FLORA team forms part of Bristol City Councils’ offer to families. they are essentially human navigators of the local offer. The local offer is a phrase used to describe the support that is available locally for children and young people with special educational needs and disabilities. FLORA are available to support schools and parents and carers of children and young people who have, or may have, special educational needs and disabilities. Click here for more info.

The Local Offer

The local offer is a Bristol City Council website which outlines the support available in Bristol for families, children and young people (0-25 years) with special educational needs and disabilities. You can view it here.

Listening Ear

The Listening Ear was developed by our partners at Contact (for families with disabled children). They offer one-to-one telephone appointments with a family support adviser for parent carers looking for a listening ear, reassurance and practical and emotional support. See here for more info.

​​Murmuration Community Therapy

​​Murmuration Community Therapy believes that community and individual well-being are intertwined and mutually beneficial.  They seek to enable people to access therapy groups and form ongoing micro-communities that support and nourish.

They provide a combination of therapy and community development regularly throughout the year to support parent carers to work through feelings. For more info click here.

Self Care

Many times our own self-care can slip way down our to-do lists. Bristol City Council created a series of support videos for parent carers to explore cultivating a compassionate attitude towards ourselves and our well-being.

Wellbeing video: Click here to watch it

Staying focused and present: Click here to watch it

Understanding anxiety: Click here to watch it

Siblings

We know that balancing the needs of siblings can be really tricky. There is support out there for siblings. Sibs exists to support people who grow up with or have grown up with a disabled brother or sister. Click here for more info.

Our partners at Contact have developed a very helpful guide which you can view here.

Support from organisations that are pan disability – this means they support families, children and young people with any type of need or disability

Bristol Parent Carer Forum

Bristol Parent Carer Forum is run by volunteers to help shape SEND services in Bristol. We use parent carer feedback about services and work closely with health services, local schools and families to ensure services work for children, young people and their families. 

To stay up to date with local news and SEND service changes, as well as support courses and webinars for families, please be sure to join our community here and follow us on Eventbrite here.

Bristol EHCP Experiences

Bristol EHCP Experiences is a Facebook Group run by parent carers to support other families that have children and young people going through the Education, Health and Care Plan (EHCP) process.

They provide information and signposting for all things EHCP related and most of their admin team are IPSEA trained. For more info see here.

Barton Hill Activity Club

Barton Hill Activity Club is the voice of Barton Hill community. The club aims to help the residents and improve their quality of life by providing them with support and activities. Since the community is so wide the club caters to everyone rather than a specific demographic.

They provide a number of activities for children and young people, such as holiday activities, football clubs and tournaments, healthy cooking and different trips. They also offer free tuition services and mentoring schemes. For more info see here.

Extraordinary Links

Extraordinary Links is a charity that was established by parent carers for parent carers after the trustees were unable to find the right sort of support for their own children. They have established a safe and well resources group of like-minded parents, who understand and accept the needs of children with SEND – without judgement. The children who attend Extraordinary Links are provided with a fun, safe space with access to various resources to support their needs.

They host weekly activities in term time and several more during the holidays for all SEND children, young people and their families. For more info see here.

Incredible Kids

Incredible Kids was created by parents in Bristol when they lost access to a local disability centre. Parents worked together to bring toys, support each other and create a safe place for their families to continue to play together and look after each other.

They have an extensive list of activities that they provide each week and through the school holidays for children and young people with SEND and their families. For more information see here.

Nothing Special

Nothing Special was set up by a father in Bristol who couldn’t quite find the right support for his child in March 2018. Since then the group has gone from strength to strength and has a large and active community

They host local activities and meet-ups, not only for young people but also for parents/carers to enable everyone to get to know each other and feel really supported on their SEND journey. For more information see here and here.

SEND and You

SEND and You provide information and support to parents and carers of children with any type of special educational need (SEN) from 0 – 25 years in Bristol, North Somerset and South Glos. You can find them here.

ADHD Support

The Community Children’s Health Partnership

There is a very informative booklet here

The Community Children’s Health Partnership website has some great information and resources connected to ADHD here.

And don’t forget to check out the pan-disability groups here and the webinars for all parent carers here.

Autism

Bristol, North Somerset and South Glos Parent Carer Forums

Bristol, North Somerset and South Glos Parent Carer Forums work together on all aspects of SEND health services, we use parent carer feedback to shape local services.

The three forums recognised that too many local families were struggling with the lack of support during the long waiting times to receive an autism diagnosis. We worked with our local health services to develop various courses to support children and young people living in these areas, who were waiting to be seen on the autism pathway. You can view them here.

Autism Independence

Autism Independence was founded to ensure that every child and their families have access to the best quality of life even if they have autism.
They seek to raise awareness and work closely with migrant communities. For more information see here.

Bristol Autism Support

Bristol Autism Support is a charity run by parent carers who have been around for many years and is a firm favourite for families in Bristol with over 3000 members. 

They provide information, support and training for parents and carers of autistic children in BS postcodes, most of which are completely free of charge. See here for more info.

Bristol Autism Project

Bristol Autism Project provides family holiday activities for autistic children and young people aged 4-18 years – or those with similar Social & Communication Interaction Needs (SCIN) – and their siblings who live in Bristol. For more information, see here.

The Community Children’s Health Partnership

The Community Children’s Health Partnership website has some great information and resources connected to Autism here.

Neon Daisy

NeonDaisy is a start-up social enterprise community interest company that was established to help create an online community for parents and carers of autistic girls. They are for girls and gender-diverse young people who are autistic and their parents and carers from all communities.

Neon Daisy runs events and activities and has an incredibly informative website and a very active online community. For more information see here and here.

Down Syndrome

Ups and Downs South West

Ups and Downs South West are on a mission to support every child and young person with Down Syndrome to ensure they enjoy a secure, informed environment that meets their emotional, social and educational needs. They aim to support families, professionals and all those involved in the care and education of children and young people who have Down Syndrome.

They provide information and advice to families, schools and other professionals, host local events in the community, offer a volunteer befriender service and provide information and support on benefits. For more info click here.

Dyslexia, Dyscalculia, Dysgraphia and Dyspraxia

The British Dyslexia Association

It is estimated that 3 children in every classroom have some degree of dyslexia, which is a difficulty with reading, writing and spelling. There are also usually difficulties with verbal memory and verbal processing speed.

Parents often tell us it can be difficult to have their child screened for dyslexia and for the right support to be in place in education settings. The British Dyslexia Association has a helpful website here which talks about screening tools and getting the right support in school. There are also videos here that some families might find helpful.

Understood.org

This website is very helpful for families to understand more about dyslexia and there is a great section here on the support that should be in place in the classroom.

There is a fantastic page on understanding Dyscalculia (difficulty with maths) here

Dyspraxia Foundation & Movement Matters

Coordination difficulties are the main feature of dyspraxia/DCD, affecting large (gross motor) and small (fine motor) body movements. Children with dyspraxia/DCD can also experience difficulties with organisation, planning, attention, memory and processing speed. Some have difficulties with speech and language.

Movement Matters is the UK umbrella organisation representing the major national groups concerned with children and adults with coordination difficulties, a condition called Developmental Coordination Disorder (or DCD) and sometimes referred to as ‘dyspraxia’. They have a very helpful website with resources for families and schools that you can view here.

Dyscalculia Information Centre

Dyscalculia is an inability to learn how to do basic maths in the way that the majority of the population can do.  It is generally considered to be a genetic problem, and as such, it can’t be overcome by taking medication or by being taught maths in a conventional way. There is more info here for parents and here for schools.

The British Dyslexia Centre also has a helpful information page here that covers Dyscalculia.

Ethnic minority Groups

Bristol Black Carers

Bristol Black Carers has been supporting and empowering carers across the whole of Bristol for over 25 years by providing services which encompass their cultural background. 

They provide person-centred and holistic care, recognising and acknowledging that people from the Caribbean, Africa and Asia have vast social and cultural similarities and differences. For more info see here

Khaas

​Khaas is a small team of talented outreach workers and sessional staff that are able to speak many community languages, such as Urdu, Punjabi, Bangla, Somali and English. Khaas combines cultural competence in working with the black, asian and minority ethnic (BAME) community with a workforce that has the skills and knowledge to deliver services that meet the needs of the community they work with.

They offer a range of support and advice including recreational, respite and educational activities for black, asian and minority ethnic (BAME) disabled children and their families.. Khaas combines cultural competence in working with the BAME community with a workforce with the skills and knowledge to deliver services that meet the needs of the community we work with. For more info click here.

The Somali Resource Centre

The Somali Resource Centre represents the Somali community and advocates for their rights within the wider Bristol society, promoting greater integration and cohesion at neighbourhood and citywide level. In assisting the Somali community, they draw on their own skills and resources and pull in specialist help when needed, so that those they support do not face these challenges alone.

They provide information, advice and guidance on issues such as benefits, housing, employment and consumer rights. They also support their community by providing individual support with mental and physical health issues, engagement with local services and social prescribing to alleviate stigma and isolation. For more info click here.

Hearing Loss

Family Centre for Deaf Children

The family centre provides support to all deaf families in the region, enabling a social network for families and a peer group for the children and enabling access to local leisure facilities

They host family activities where there is an opportunity for parents and carers to come together with other families so they can meet those in a similar situation and benefit from their knowledge, experience and support. This allows families to get a fuller picture of the choices available to them and their children, and understand the practicalities of these options. For more information click here.

Learning disability

Brandon Trust

Brandon Trust is a southwest-based charity supporting around 1,600 children, young people and adults with a learning disability, autism or both. They aim to enable the people they support to live their lives in the way they choose. To reach for their dreams and be all they can be. For more info see here.

Bristol Community Arts

Are a local charity which aims to improve personal well-being through art, mentorship and education. Their goal is to be a positive influence on society, starting with the individual and the community. They provide a range of unique creative education opportunities for the communities working primarily with underprivileged young people and adults, aged 14 and above. For more info see here.

Occupational Therapy

Community Children’s Health Partnership

The Community Children’s Health Partnership website has some great information and resources connected to Occupational Therapy needs as well as information on an advice line you can contact here. There is also a very helpful video on sensory needs here.

Sight Loss

Sight Support

Sight Support aim to improve the quality of life for blind and partially sighted people in the West of England. They host events for families to ensure they have access to the support and information that they need. For more information see here.

Bristol Sight Loss Council

Sight Loss Councils are led by blind and partially sighted members and funded by Thomas Pocklington Trust. They advocate the needs of visually impaired people in our communities and work to improve access to goods and services at a local and national level. For more info see here.

Macular Disease Society

Bristol Macular Society Support Group meets on the 3rd Wednesday of every month from 10am-12pm. For more info see here

Speech and Sensory needs

The Community Children’s Health Partnership

The Community Children’s Health Partnership website has some great information and resources connected to Speech and Language needs here.
They also have an advice line you can contact here as well as a collection of assorted videos here and towards the bottom of this page, there are some great top tips on Specialist Speech and Language Therapy.

The Autism Page

This page is run by a parent that lives locally and offers great support and information on picture exchange communication systems (PECS) which can be helpful for all children with speech difficulties, not just those with autistic needs. For more info see here

North Somerset Parent Carer Forum Sensory video

North Somerset Parent Carers Working Together, worked collaboratively with a host of professionals, to bring you an informative video aimed at supporting children or young people which you can view here.

Social Emotional and Mental Health

Leading Lights

Leading Lights is based in Bristol and was founded in 2014 by an experienced group of children’s experts. They recognised the huge shortfall in services available for young people who knew what their aspirations were but who were missing out on their potential because of social, emotional and mental health needs. They provide imaginative, carefully curated and case-managed programmes for children and families with social, emotional, and mental health difficulties (SEMH). For more info click here.

Off The Record (OTR)

OTR is a mental health social movement by and for young people aged 11-25 living in Bristol and South Gloucestershire. They host regular hubs and other events. For more info see here. They also have a support service in schools see here.

Happy Maps

A national charity that provides reliable resources recommended by parents and professionals for families that are worried about their child’s behaviour or mental health. For more info see here.

Kooth

Kooth is an online counselling and emotional well-being platform for children and young people, accessible through mobile, tablet and desktop and free at the point of use. On Kooth you can chat to our friendly counsellors, read articles written by young people, get support from the Kooth community and write in a daily journal. For more info see here.

On My Mind

On My Mind aims to empower young people to make informed choices about the mental health support they want, the treatments they receive and the outcomes they desire.

It is a free digital resource that contains information, advice and resources to help young people support their own mental health, including signposting to sources of support in times of crisis and tools to help young people manage their own well-being For more info see here.

PAPYRUS

PAPYRUS is a national charity dedicated to the prevention of young suicide. Our suicide prevention helpline, HOPELINEUK, is staffed by trained suicide prevention advisers, who work with young people – and anybody concerned for a young person – to help keep them safe from suicide.

HOPELINEUK is a free and confidential call, text and email service, which is available from 9am to midnight, every day of the year. For more info click here.

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