Advice / Information / Support

ADHD Foundation

Information and support for numerous neurodiverse conditions

"The ADHD Foundation is the UK’s leading neurodiversity charity, offering a strength-based, lifespan service for the 1 in 5 of us who live with ADHD, Autism, Dyslexia, Dyspraxia, Dyscalculia and Tourette’s syndrome." Through their Neurodiversity Clinic based in Liverpool they offer ADHD Assessments for anyone aged 6 or over. Their Resource Hub has lots of information relating to Autism, ADHD, Tourettes, Dyslexia, Dyspraxia and Dyscalculia.


https://www.adhdfoundation.org.uk/

ADHD UK

Proof of disability card to help access discounts

"ADHD UK has been created by people with ADHD for people with ADHD." Their website has a wealth of information about ADHD.


https://adhduk.co.uk/

Alex TLC

Leukodystrophy support charity, support grants

Alex TLC support services have a wealth of experience and knowledge to help you through all aspects of living with a leukodystrophy whether you are newly diagnosed or were diagnosed a while ago. They are here to support you, your family and friends, through practical and emotional support as well as accurate medically checked information relating to the many types of leukodystrophy.


They provide means tested grants to help access care, equipment or therapy not available through statutory services, including support during Bone Marrow Transplant or Gene Therapy.


https://www.alextlc.org/

Ambitious About Autism

Autism special schools and information

Ambitious About Autism run a number of specialist schools for Autistic children and also help Autistic people gain work experience and employment. Their website has a large amount of information about Autism.


https://www.ambitiousaboutautism.org.uk/

ARFID Awareness UK

ARFID (eating disorder) support and information

Avoidant / Restrictive Food Intake Disorder (ARFID) is an eating disorder characterised by anything from a limited diet (refusal to to eat certain groups or types of food) to a complete refusal to eat. ARFID Awareness UK are the UK’s only registered charity dedicated to raising awareness and furthering information about Avoidant/Restrictive Food Intake Disorder.


https://www.arfidawarenessuk.org/

https://www.facebook.com/groups/431391660626919

Aspire

Spinal injury support charity

Aspire is a charity that helps people living with spinal injury. It's website has information about spinal injury and details the different ways that the charity can support you.


https://www.aspire.org.uk/

AT Society

Ataxia-telangiectasia support charity, grants

The A-T Society supports supports people living with the disabling and life-limiting condition ataxia-telangiectasia and funds research to find a cure. Their website has a wide range of support and resources available on it.


The A-T Society can offer financial help to people with A-T through their Support Grants System. Here are some examples of the things we can help with, however there may be other items or areas where we can help. Please note that the equipment or service has to be for the benefit of the person who has A-T.


IT Equipment

Wheelchairs

Bathroom Equipment

Specialist Furniture

Hoists

Holidays

Respite Care

Trikes

Scooters

Motability Car (deposit)

Transport Costs

Courses

Therapy equipment

Stairlift


https://atsociety.org.uk/

Ataxia

Ataxia support charity

Ataxia provides information and support for people living with Ataxia (an umbrella term for a group of neurological disorders that affect balance, coordination and speech).


There are also a number of grants available that are listed on their website


https://www.ataxia.org.uk/

Barnardo's

Support charity for vulnerable children and their families / carers

Is a national charity that provides support and advice to vulnerable children, their families and carers. Their website has a search function to find support in your local area. They also offer short breaks (respite care) for children with disabilities.


https://www.barnardos.org.uk/

Batten Disease Family Association

Battens disease support charity

The BDFA provides advice and support for families of those suffering with Battens Disease. They also provide a family grant scheme.


http://www.bdfa-uk.org.uk/

Beacon House

Therapeutic service for those who have experienced trauma (based West Sussex)

Beacon House is a specialist, innovative and creative therapeutic service for young people, families and adults. With a special interest in working with individuals of all ages who have experienced trauma and loss, they are passionate about offering safe and effective therapies in a way that enables people to re-build their lives following stress and adversity.


https://beaconhouse.org.uk/

Brittle Bone Society

Brittle bone support charity

The Brittle Bone Society is the sole organisation set up to address the needs of people born with Osteogenesis Imperfecta (OI). The charity supports people in the UK and Republic of Ireland.


Their website provides a wide range of resources and information.


They also provide grants to pay towards wheelchairs, specialised equipment, holidays and respite care.


https://www.brittlebone.org/

Carers First

Advice and support for carers

Carers First works directly with and for carers to provide personalised information and advice. Making it easier for those caring for someone else to continue living their lives to the fullest.


https://www.carersfirst.org.uk/

Carers Trust

Carers support charity

Carers Trust is a major charity for, with and about carers. They work to improve support, services and recognition for anyone living with the challenges of caring, unpaid, for a family member or friend who is ill, frail, disabled or has mental health or addiction problems.


They have a national network of local support partners which you can search on their website to find appropriate support in your area.


If you are a carer you may be able to receive a Carers Fund grant as part of a package of support from your local Carers Trust Network Partner.


https://carers.org/

Carers UK

Carers support charity

Carers UK is an organisation that provides information, advice and support to unpaid carers. Most counties or regions have their own specific carers support organisations and Carers UK has a search function on their website to help you find what support may be available locally to you.


https://www.carersuk.org/


https://www.carersuk.org/help-and-advice/get-support/local-support

Caudwell Children's Charity

Grants and support for disabled and autistic children

Is a national charity based in Staffordshire “at our state of the art facilities which are dedicated to improving the lives of disabled and autistic children”. They offer Autism Assessments, Occupational Therapy, Equipment, Sensory Packs and various other forms of support. For families with a household income of under £45,000 they can fund up to 80% of the costs for the assistance they provide.


https://www.caudwellchildren.com/


They also provide funding towards life-changing equipment for children with a wide range of disabilities or chronic conditions. They can provide upto 80% of the cost of therapy tricycles, sensory equipment, sports equipment, car sears, car harnesses, buggies and powered wheelchairs.


https://www.caudwellchildren.com/services/equipment/

Cerebra

Support charity for children with brain conditions

Cerebra is the national charity helping children with brain conditions and their families discover a better life together. They provide a Book and Toy Library, Sleep Advice Service, Legal Advice Service and they publish a series of guides and factsheets to help families of children with brain conditions with common problems they may be facing.


The Cerebra Innovation Centre (CIC) designs and builds innovative, bespoke products to help disabled children discover and engage with the world around them. If you have a problem you need addressing or an idea for something that you think could help your child, please get in touch.


https://cerebra.org.uk/

Cerebral Palsy Cymru

Support charity those with Cerebral Palsy in Wales

Cerebral Palsy Cymru's website has information about Cerebral Palsy and the funded therapy services that they offer.


https://www.cerebralpalsycymru.org/

Cerebral Palsy Scotland

Support charity those with Cerebral Palsy in Scotland

Cerebral Palsy Scotland offer support and therapy groups for both children and adults with cerebral palsy. They are able to offer some funding towards therapy for some individuals.


Their website also has a wealth of information on it and some great disability directories.


https://cerebralpalsyscotland.org.uk/

Child Brain Injury Trust

Charity offering support to children living with an acquired brain injury

The Child Brain Injury Trust is a charity that offers support (including legal) and advice to children living with an acquired brain injury, as well as supporting their carers and siblings.


They also operate a small grants program that awards up to £125 towards a social activity for siblings and children with a ABI.


https://childbraininjurytrust.org.uk/

Children's Heart Foundation

Support charity for children with heart defects

The Children’s Heart Federation helps children with heart defects and their families by:


Providing direct support


- Information and advice through our information sheets and information line 0300 561 0065

- Resources for children with heart conditions such as Molly’s Dollies a rag doll with surgical scars and Rosie goes red, Violet goes blue a story book to help small children and their siblings understand heart conditions

- Providing medical equipment for children with heart conditions such as INR machines

- The Heart2Heart newsletter containing information and news for the cardiac community

- Pulse Parents – a private Facebook forum where parents can discuss topics relating to children with heart conditions

- Coffee and questions – online events on a variety of subjects relevant to families with children with heart conditions, each event has a speaker and the opportunity to ask questions from the audience


https://chfed.org.uk/

Children's Trust

Support charity for children with acquired brain injury

Is a national charity that provides help and support for children with acquired brain injury (ie that they were not born with). At their headquarters in Surrey they have a special school, residential rehabilitation centre and they offer affected children short breaks and camps and clubs during the school holidays.


https://www.thechildrenstrust.org.uk/

CMV Action UK

Charity supporting families affected by congenital CMV (Cytomegalovirus)

CMV, or Cytomegalovirus, is a common virus that can infect people of all ages. Once CMV is in a person’s body, it stays there for life. Most healthy adults and children who become infected will have no signs or symptoms and no long term effects from CMV. It can however pose serious risks to unborn babies if a pregnant woman catches it for the first time. Congenital CMV is when a baby has been infected before birth. It is one of the leading causes of hearing loss in children and one of the main causes of childhood disability.


CMV Action is the only UK charity offering advice and support to families affected by congenital CMV (cCMV).


http://cmvaction.org.uk/

Communication Matters

Charity for those who find it difficult to communicate

Communication Matters is a UK-wide charity that supports people of all ages who find it difficult to communicate because they have little or no clear speech. Their website has a wide range of information on Augmentative and Alternative Communication (AAC) and they provide some small grants of upto £200 towards communication equipment.


https://www.communicationmatters.org.uk/

Contact

Charity that provides support and advice for families of disabled children

Is a charity that provides support and advice for families of disabled children. Their website is full of useful information and advice and they offer a “listening ear service” for parents and carers who are looking for emotional support. In addition to this they also operate a not for profit shop that sells toys, clothing and sensory products.


https://contact.org.uk/about-contact/

https://www.facebook.com/groups/ContactFamiliesGroup

CP Teens

Social activities for young people with physical disabilities

CP Teens is a charity that organises social activities for young people affected by physical disabilities such as Cerebral Palsy. While it's name suggests it caters for teenagers, it actually assists those from 0 to 25 years, with primary focus being on 8 to 25. They also host several online support communities.


https://www.cpteensuk.org/

Cystic Fibrosis Trust

Charity supporting those living with Cystic Fibrosis

The Cystic Fibrosis trust supports people living with Cystic Fibrosis. Their website provides information about the condition and information about the support they provide.


They provide a range of welfare grants to help in times of financial need. These include grants for emergencies, transplant assessments, health and wellbeing, holidays and breaks, home care, education and prescription pre-payment certificates.


https://www.cysticfibrosis.org.uk/

Daisy Garland

Charity supporting those with drug resistant epilepsy

The Daisy Garland is a charity working exclusively for children and families whose lives have been touched by drug-resistant epilepsy.


The help they offer is life-changing and wide ranging:


They fund ketogenic dietitians and dietetic support workers.

They give grants for life-saving monitors.

Daisy's Keto Café is an on-line round-the-clock parent support group

They offer vital one-to-one family support

and they award small, one-off grants for special needs equipment


https://www.thedaisygarland.org.uk/

Dame Vera Lynn Children's Charity

Supports children with Cerebral Palsy and other motor learning impairments

Is a charity based near Haywards Heath (West Sussex) that supports under 5’s with Cerebral Palsy and other motor learning impairments to realise their full potential. They provide an early intervention service based on the methodology of Conductive Education. Specific services include small group conductive education sessions, music therapy, swimming, sensory sessions and messy play, portage home play, parent support.


https://dvlcc.org.uk/our-services/

Demand

Disability equipment advice, supply and adaptation

As well as advising people with disabilities on the best equipment to suit their needs, Demand also design and manufacture from scratch & modify and enhance people's existing equipment to help it work better for them.


They help people of any age, and with any kind of disability regardless of their financial circumstance.


https://www.demand.org.uk/

Disability Grants Website

Grants listing website

Disability Grants is a website that lists a massive number of grants that are available throughout the UK. It also has various other information and resources about various disabilities and a map of holiday caravans that are owned by charities around the UK.


https://www.disability-grants.org/holiday-caravans-for-the-disabled.html


https://www.disability-grants.org/

Disability Rights

Information website

Disability Rights has number of useful factsheets on their website, including a really comprehensive one about employing personal assistants (PAs).


https://www.disabilityrightsuk.org/being-control-getting-personal-assistants-pas

Down Syndrome Development Trust

Support charity for those affected by Down Syndrome

DSDT's "service includes support to individuals and their families via research based training workshops, outreach, educational enrichment and social groups for children and young people living with Down syndrome".


https://downsyndromedevelopment.org.uk/

Down's Syndrome Association

Support charity for those affected by Down's Syndrome

"We are parents of children and young people with Down syndrome who understand and passionately believe in the power and value of peer and expert support, together with access to contemporary relevant information. Our aim is to reach as many expectant and new parents of a little one with Down syndrome as we can. We are determined to ensure no parent feels alone, so provide a space where parents have someone to turn to, to share any concerns, ask any question and celebrate all the triumphs.


We believe in collaborating with experts in their chosen field to disseminate information, share best practise and try to prevent folk reinventing wheels! By doing so we can empower, enlighten, and educate our parents, the professionals who work with our children and young people, policy makers, Parliamentarians as well as the wider public."


https://downsyndromeuk.co.uk/


Their website also features a list of support groups across the UK:


https://downsyndromeuk.co.uk/support-groups/

Down's Syndrome Research Foundation UK

"We are the UK’s only Down’s syndrome research charity. Our vision is a long, healthy, happy life for people with Down’s syndrome (DS) and their families.


We will bring the best scientific research to the issues affecting our community by:


Funding and promoting ground-breaking medical research;

Improving understanding of Down’s syndrome;

Supporting the human rights of people with Down’s syndrome and their families through advocacy."


https://www.dsrf-uk.org/

Down's Syndrome Scotland

Support Charity for those affected by Down's Syndrome in Scotland

"Down’s Syndrome Scotland is a member-led charity, established in 1982. We are the only charity in Scotland dedicated solely to supporting people with Down’s syndrome and their families and carers.


We provide “all through life” support nationally across Scotland.


We know that every person with Down’s syndrome is a unique individual, full of potential.


We support people with Down’s syndrome to reach their fullest potential by providing a range of services, influencing public policy and by changing attitudes."


https://www.dsscotland.org.uk/

Dravet Syndrome UK

Support Charity for those affected by Dravet Syndrome

Dravet Syndrome UK is dedicated to improving the lives of those affected by Dravet Syndrome (a severe form of Epilepsy) through support, education and medical research.


They can provide grants for seizure monitors and fund an annual weekend away for families at Centre Parcs.


https://www.dravet.org.uk/

Epilepsy Society

Support Charity

"The UK’s only charity transforming the lives of people with epilepsy through world-leading research, advocacy and care". Their website also contains a wealth of information about Epilepsy.


https://epilepsysociety.org.uk/

Everyone Can

Charity that helps those with disabilities with assistive technology

Formerly known as The Aidis Trust, Everyone Can is a charity which has been doing everything it can so that people living with disabilities are able to control their home environment, communicate, and in short, live their lives with as much ease and independence as possible.


They have been able to transform the lives of hundreds of disabled people by matching them with the best-suited and most innovative assistive technology.


They will conduct an assessment, initially over the phone, but then in person if required, to see what assistive technology would be best suited to help improve your life.


After the assessment they will write up a report which documents the specific equipment or software settings that will really make a positive difference to the disabled person’s life. Unfortunately they aren’t able to fund the technology that they suggest but they will do everything they can to help you find funders or suggest funding options.


They also host regular gaming sessions at their headquarters in Manchester and hold free Assistive Technology training workshops.


https://www.everyonecan.org.uk/

Facebook Groups

There are many national and local Facebook groups focussed on SEND children and their carers. Just search for the relevant

condition and add your town or area if you want to find one that's more locally focussed. Facebook is then pretty good at

recommending other relevant groups. They can be a great place to ask questions as there will normally be someone who has already been through what you are going through to offer advice. It can also be really useful to see what other people are saying / asking so you can learn from their experiences and if nothing else, just realise that there are others out there going through similar things to you. They're normally well moderated and are usually private groups, so you'll have to apply to join and have your membership approved by a moderator before being able to access them.


There are also a variety of groups offering support and advice to those applying for DLA (Disability Living Allowance) and EHCPs (Education, Health and Care Plans).


There are also quite a few groups dedicated to special needs equipment and people selling equipment that they no longer need. Some of this equipment can be extremely expensive to buy new and you can save a lot of money when buying second hand. Just search for “Special needs equipment UK” and select the relevant group.

Family Action

Support for the disadvantaged

Family Action transforms lives by providing practical, emotional and financial support to those who are experiencing poverty, disadvantage and social isolation across the country. Their website features a search function to help you find local support services that they offer.


As well as the support services they provide, they also offer a small grants service for Welfare or Educational purposes.


https://www.family-action.org.uk/

Family Fund

Support for low income families raising disabled or seriously ill children

Is a charity that aims to improve the lives of low-income families raising disabled or seriously ill children and young people. They offer grants for short breaks, essential items and services (eg washing machines, toys, furniture, tablets / computers, bedding, clothing etc) and their website also has a series of guides on various types of support that is available.


To be able to apply for a grant you must meet certain criteria, which are basically that your child must have a high level of additional support needs arising from a long term disabling condition or a serious or life limiting illness and you must be in receipt of a means tested benefit (eg Universal Credit).


https://www.familyfund.org.uk/

Guide Dogs

Charity that supports blind and partially sighted people, providing guide dogs, support and grants

Founded in 1934, Blind Dogs is a charity that helps blind and partially-sighted people through the provision of guide dogs. They also provide support and advice and can give grants for assistive technology and sensory equipment.


https://www.guidedogs.org.uk/


https://www.guidedogs.org.uk/getting-support/information-and-advice/how-can-technology-help-me/assistive-technology-grants-for-children/


https://www.guidedogs.org.uk/getting-support/information-and-advice/sensory-equipment-grants-for-children/

IPSEA (Independent Provider Of Special Education Advice)

Help children and young people with special educational needs and disabilities, and their families and carers, to get the appropriate education, training and support to which they are entitled under the law. As well as having an advice service, their website also offers a number of guides on things like choosing schools, EHCPs, SEN Law, transport to school etc


https://www.ipsea.org.uk/

Kids

Charity providing variety of support for disabled young people and their families

KIDS is a national charity, founded in 1970, that provides a wide range of services to disabled children, young people and their families in England. At various locations across England they offer play schemes, after school clubs and respite breaks. In London they operate four adventure playgrounds and they also have an accessible static caravan available for holidays in the Cotsworlds and a beach hut on Hayling Island.


Their website has a variety of information available on it and they also provide mediation services to approximately 50 local authorities.


https://www.kids.org.uk/

Kids Cancer Charity

Support and Orlando holidays for kids and their families dealing with cancer

Kids Cancer Charity offers support and advice to families of children dealing with cancer. They also offer compassionate care breaks at one of their three UK holiday homes, 3 or 4 day breaks at Disneyland Paris and assistance with organising visits to Orlando, USA, including potentially free stays in their luxury Orlando Villa.


https://www.kidscancercharity.org/

Learning Disability Today

Website with news stories and information on learning disabilities

Their website covers a range of learning disabilities and Autism, with news articles and information.


https://www.learningdisabilitytoday.co.uk/

Lennox Children's Cancer Fund

Charity supports children and their families who are living with cancer

Lennox Children's Cancer fund supports children who are living with cancer and their families. They offer emotional support, practical support and advice on things like financial entitlements and treatment procedures, respite breaks in one of their two holiday homes in the New Forest and financial support through a grant scheme (at the time of writing their grant scheme is currently on hold).


https://www.lennoxccf.org.uk/

Local Offer

Online directory from your local authority of services, support and organisations available locally

Every local council authority in England has a Local Offer website. They are an online directory of services, support and organisations that are available locally to provide support and assistance to children with special educational needs and their carers. Do a Google search for your local council and Local Offer.


You can find your local council here:


https://www.gov.uk/find-local-council


In Scotland, Enquire provides a similar service:


https://enquire.org.uk/service/

Mencap

Charity that provides support and advice for those with learning disabilities

Is a large national charity that provides a wide range of support and advice for those with learning disabilities.


https://www.mencap.org.uk/

Motor Neurone Disease Association

Charity which offers support for those suffering from Motor Neurone Disease

MNDA offers support and advice for those suffering from Motor Neurone Disease. Their website has a search function to help you find locally based support.


https://www.mndassociation.org/

MS Society

Charity offering support for those with MS (Multiple Sclerosis)

The MS Society provides a wide range of support and advice for people with MS (Multiple Sclerosis). On their website you can search for locally based support and grants.


The MS Society used to provide grants, however these are currently suspended due a lack of income as a result of the COVIS-19 pandemic.


https://www.mssociety.org.uk/

National Autistic Society

Charity offering support, advice, guidance and activities for Autistic people

Established in 1962 the National Autistic Society is the UK's leading charity for people on the autism spectrum and their families. They provide a wide range of support, guidance and advice. Nationally they have 116 branches, each of which provide support, advice and social activities for Autistic people and their families.


https://www.autism.org.uk/

National Deaf Children's Society

Charity that provides financial support for those experiencing poverty at a time of crisis

The National Deaf Children's Society offer a wide range of information and support on their website, a telephone helpline and they organise events for parents, carers, families and young people. They also offer a "Technology Test Drive" which is an opportunity to borrow a wide range of equipment for up to 30 days to see what works for you (there is information about assistive technology on their website).


Inclusion Grants are small grants (up to £150) to help deaf children and young people get involved in events and activities, groups and clubs. Examples include after-school clubs, BSL courses and swimming lessons. They can also be put towards things a young person needs to take part, such as football kit. On some occasions they may be able to reimburse travel costs.


https://www.ndcs.org.uk/

Newlife Charity

UK's largest charitable provider of specialist equipment to disabled children

Primarily offer non-means tested equipment grants or loans. They are the UK's largest charitable provider of specialist equipment to disabled children. They have a national helpline that provides information and support to families and professionals who are caring for terminally ill or disabled children. As well as offering access to larger equipment, they can also provide free 12 week loans of play therapy pods. Each pod contains a range of toys specifically tailored a certain age group and certain needs.


https://newlifecharity.co.uk/

PACE (Buckinghamshire)

Charity that provides multi-discipliary therapy for children with neurodisabilities

PACE is a charity that “aims to change the lives of children with neurodisabilities”. They run a therapy centre and special school based in Aylesbury, Buckinghamshire and they also provide online resources and support. They provide very reasonably priced multi-disciplinary assessment and therapy (specialising in Occupational Therapy, Speech and Language Therapy, Physiotherapy and Conductive Education) and are able to fund this for some.


https://thepacecentre.org/

PDA (Pathalogical Demand Avoidance) Society

Charity offering support, advice, training and resources for those affected by PDA

"PDA (Pathological Demand Avoidance) is widely understood to be a profile on the autism spectrum, involving the avoidance of everyday demands and the use of ‘social’ strategies as part of this avoidance". The PDA Society offers help and support to those affected by PDA and their website also has a large range of resources / information, a forum and a shop.


https://www.pdasociety.org.uk/

Portage

Home visiting educational service for pre-school children with SEND

Portage is a home-visiting educational service for pre-school children with SEND and their families. They offer advice, support and learning through structured play. They're very highly regarded, but as with lots of support services they can often have quite a long waiting list.


https://www.portage.org.uk/about/what-portage

Positive About Down Syndrome

Website where parents share their experiences with Down Syndrome and offer support to others

Is a website by parents of children with Down's Syndrome, for parents and parents to be. Parents share their experiences to provide support for others.


https://positiveaboutdownsyndrome.co.uk/

Rainbow Trust

Support for families who have a child with a life-threatening or terminasl illness

Rainbow Trust Children’s Charity supports families who have a child aged 0-18 years with a life-threatening or terminal illness. Each family is paired with an expert Family Support Worker who enables them to make the most of time together, giving them practical and emotional support, whenever they need it, for as long as is needed. Help can include listening to a family’s fears and anxieties, helping to explain illnesses, diagnoses and treatments, keeping a seriously ill child company during hospital stays, driving families to medical appointments to help save time and money, organising fun activities to help sick children, their brothers and sisters and support through bereavement and grief.


https://www.rainbowtrust.org.uk/about/what-we-do

Reach

Support for children living with upper limb differences

Reach provides information, help and support for children living with upper limb differences.


https://reach.org.uk/

Reaching Families

Support for SEND families, publish the excellent "Making Sense Of It All" Guide

Is a West Sussex charity that aims to “empower, inform and support parents and families of children and young people with special educational needs and disabilities in West Sussex”. They offer a number of services including benefits advice, fact sheets, training workshops, support groups and a Facebook group.


They also publish the excellent “Making Sense Of It All” which is available to download for free as an ebook via this link:


https://www.reachingfamilies.org.uk/guides.html


It's a lengthy publication, but it covers in detail everything from the first time you think your child may be having difficulties, getting a diagnosis and then finding the help they need, right through to growing up to becoming an adult with special needs.

REACT Charity

Support children with potentially terminal illness living in financially disadvantaged households

React – Rapid Effective Assistance for Children with potentially Terminal illness is a dynamic charity working to improve the quality of life for children with life-limiting illnesses living in financially disadvantaged households throughout the UK.


https://reactcharity.org/

Sandcastle Trust

Supporting families who have a child with a rare genetic condition

The Sandcastle Trust walks alongside families living with a rare genetic condition to help build lasting positive family memories, strengthen family relationships, improve emotional wellbeing and resilience.


They provide advice and support to families, can fund days out or holidays and can provide a leisure activity or memorable experience within the family home to improve quality of life.


https://sandcastletrust.org/

SCOPE

Charity, originally supporting Cerebral Palsy, now embraces all conditions and impairments

SCOPE is a national disability charity that covers England and Wales. When founded its primary focus was on Cerebral Palsy, but it now embraces all conditions and impairments. Its website hosts an online community and hosts a large amount of information on disability support and they also provide a telephone helpline.


https://www.scope.org.uk/services/

Selective Mutism Information & Research Association

Charity that supports families with selectively mute children

Selective mutism is a communication anxiety disorder. SMIRA is a charity which supports families with selectively mute children and provides information to health and education professionals.


http://www.selectivemutism.org.uk/

https://www.facebook.com/groups/SMIRASelectiveMutism

SENDIAS (SEND Information, Advice and Support)

Advice service focussed on helping SEND children access education and EHCPs

SENDIAS (SEND Information, Advice and Support) Service provides confidential and impartial information, advice and support to children and young people who have special educational needs and/or disabilities and to their parent carers.


They are mainly focussed on accessing education and EHCPs. Each area has it's own individual SENDIAS service, you can search for your local one at the following link:


https://councilfordisabledchildren.org.uk/what-we-do-0/networks/information-advice-and-support-services-network/find-your-local-ias-service

Sequal Trust

Assistive communication technology for those with communication difficulties

The Sequal Trust is a national fundraising Charity founded in 1969 which is committed to bridging the communication gap for disabled people. By providing suitable assistive technology to people who need it most, we aim to increase the quality of life for those who are non-verbal, have incoherent speech, or who have learning and communication difficulties.


Their website has a wide range of information on communication aids and they are able to fund equipment for some through charitable grants.


https://www.thesequaltrust.org.uk/

Strong Bones Children's Charitable Trust

Support, advice and grants for specialist equipment foryoung people affected by bone conditions

Helping families and disabled children with complex needs alongside scoliosis, spina bifida, brittle bone disease or any other bone condition. They provide advice and support. They can also provide grants for young people under the age of 21 for upto 70% of the cost for disability/sensory equipment, manual wheelchairs, supportive seating, acheeva learning stations, portable hoists, educational resource packs, skoog musical interface and communication aid, adapted trikes and hand cycles and smart home technology


https://www.strongbones.org.uk/

Super Siblings

Charity which supports young people who have brothers or sisters with additional needs

Super Siblings UK is a charity that supports siblings who have brothers and/or sisters with additional needs. Their aim is to build a strong, kind, caring and supportive community for all families who understand what it’s like to live with, and support a child that has additional needs, as well as extending their support to all parents, grandparents and guardians.


https://www.supersiblings.org/

https://www.facebook.com/groups/Supersiblingsuk

Together For Short Lives

Charity offering support for children with life-limiting and life-threatening conditions

Together for Short Lives is the UK registered charity for children's palliative care. Together for Short Lives’ vision is for children and young people in the UK with life-limiting and life-threatening conditions and their families to have as fulfilling lives as possible, and the best care at the end of life. They offer a support helpline and various support services


https://www.togetherforshortlives.org.uk/

Tourettes Action

Support and advice for those affected by Tourettes Syndrome, are also able to offer some grants

Tourette Syndrome is an inherited, neurological condition, the key features of which are tics, involuntary and uncontrollable sounds and movements. Tourettes Action offers news, information, advice and support.


They are able to award grants of up to £500 for equipment that supports people with TS in their day-to-day life. Some examples of what we have funded in the past include:


Instruments for people whose tics reduce when playing music,

Beds for people whose tics are so violent that normal beds break.


(Please note that we do not provide grants for activities, holidays or to fund treatments).


https://www.tourettes-action.org.uk/

https://www.facebook.com/TourettesAction

Turn2Us

Help those in financial need access benefits and grants

Turn2us is a national charity providing practical help to people who are struggling financially.


They help people in financial need gain access to welfare benefits, charitable grants and other financial help – online, by phone and face to face through their partner organisations.


https://www.turn2us.org.uk/


On their website they have a Grants search section that allows you to search for grants that may be available to you from both local and national organisations:


https://grants-search.turn2us.org.uk/

Well Child

Help to make it possible to care for children with complex health needs to be cared for at home

Through a nationwide network of WellChild Nurses, home and garden transformation projects and family information, training and support programmes, WellChild makes it possible for children and young people with complex health needs to be cared for at home instead of hospital, wherever possible.


https://www.wellchild.org.uk/

YMCA

Various support across the UK including nurseries, activity clubs, days out, play schemes etc

Offer a number of disability services across the UK including short break play schemes for children aged 5-11, short break activity youth clubs for young people aged 12-18, rebound therapy, nurseries, preschools and various other activities. To find your local YMCA in England and Wales and see what they offer:


https://www.ymca.org.uk/find-your-local-ymca


In Scotland:


https://www.ymca.scot/find-a-ymca/


And in Ireland / Northern Ireland:


https://www.ymca-ireland.net/locations/

Young Lives vs Cancer

Practical support, advice and grants for young people suffering from cancer

Young Lives vs Cancer's care teams provide day-to-day support for each child, young person and family, from information and guidance to clinical care and specialist play during treatment.


They provide grants and help them get the benefits and other support you’re entitled to. They also help liaise with young people’s employers and sort out housing issues to keep families together, because day-to-day life doesn’t stop when you have cancer.


Their nursing teams can provide personal care and support at home, or arrange for treatment to be given closer to home. They also have Young Lives vs Cancer Homes from Home close to hospitals, where families can stay during treatment for free.


https://www.younglivesvscancer.org.uk/