Part 4 - Living with Dravet Syndrome

Pages 54-95

Pages 57 

Talking about your situation: Support from Dravet Syndrome UK

Whether you just want a friendly chat, need someone to listen while you off-load, or could do with some practical assistance, our Family Support Manager is also here to help. Call 01246 912421 or email

We have a private online forum. If you’d like to join this community, please email

Page 58 

Talking about your situation: Support from other organisations

England: self-refer to the NHS's Improving Access to Psychological Therapies (IAPT) service for talking therapies, cognitive behavioural therapy (CBT) and counselling 

Your GP will need to refer you if you live in Wales, Scotland or Northern Ireland to; Wales: your Local Primary Mental Health Support Service |  Scotland: a local NHS board | Northern Ireland: a regional Health and Social Care Trust

Find a qualified private therapist using the directories of the British Association for Counselling and Psychotherapy (BACP) and the UK Council for Psychotherapy (UKCP)

Mind: a mental health charity offering UK-wide support and information

Page 62 

Exchanging work for full-time care

Carers Trust: advice on working and caring

Page 63 


Disability Grants: more information on holiday grants, funds and locations 

Pages 65-66 

Sibling support

Sibs: a charity which is a source of support for siblings of disabled children, including advice about talking to your sibling child about disability, support for younger siblings and support for adult siblings 

Page 66-67 

Genetic counselling

Information about NHS genetic testing and counselling 

Page 67 

Dravet Syndrome UK events for siblings

Our Annual Siblings Awards recognise unsung heroes of the Dravet Syndrome community 

Our Annual Weekend Away includes a special day of fun activities for siblings

Page 69-70 

Asking for a needs assessment

The charity Cerebra has some template letters for asking for a needs assessment: England | ScotlandWales. They also have a series of other templates to help you write to your local council or health body if you need information or to make a complaint

Dravet Syndrome UK can also provide support and guidance with writing letters. Contact us at

The charity Contact has more detailed advice about accessing support services for families of disabled children 

Disability Rights UK has information for disabled adults

Page 72 

Carer’s assessment

The charity Cerebra has some template letters for asking for a carer’s assessment: England | ScotlandWales

Page 73 

Blue Badge disabled parking permits

Information and advice about Blue Badge permits can be found at Contact 

Page 74 

Challenging local authority decisions

Information and advice on how to make a complaint to your local authority: Disability Rights UK | Contact  

You can also email Dravet Syndrome UK for support and guidance

Page 76 

NHS Continuing Healthcare for adults

Information on NHS Continuing Healthcare (Age UK) | England & Wales (Beacon) | Scotland (Independent Living) | Northern Ireland (My Care Consultant)

You can also speak to Citizens Advice about Continuing Healthcare and other funding: England | Scotland | Wales | Northern Ireland  

Page 77 

Financial support and your rights

Contact: Comprehensive information on benefits families with disabled children might be entitled to

Turn2Us: Discover what kind of financial support your family is entitled to, whether government benefits or other types of grants, and how to go about applying for these

Cerebra: Free guides for parents/carers about the benefits and grants system for disabled children

Disability Grants: A guide to national and local grants for disability equipment, holidays, housing, days out and more

Your local authority website: They should have a welfare adviser who can help with benefits

Carers UK: This charity runs a helpline providing one-to-one advice for carers and has advice on taking a break

Citizens Advice: Confidential advice and support

Government website: Benefits calculators to check what you could be entitled to

Dravet Syndrome UK grants 

Page 78 

Wills and trusts

Mencap has an FAQ on wills and trusts

Contact has an overview of wills and trusts 

This ‘Find an Adviser’ tool from Turn2Us can help with information on creating wills and trusts, as well as many other legal issues

Page 81 

Special Educational Needs (SEN) support across the UK

Information on the SEN system, which varies slightly across the UK: England | Wales | Scotland | Northern Ireland

Page 82-83 

Developing the EHCP or equivalent document

Information on how to appeal if you disagree with your child’s final EHCP or equivalent from the UK government website 

Information from Contact about educational services available for young people aged 16 and over

Page 84 

Additional information and advice

Organisations offering information and advice on schooling and education for children and young people with complex needs include: Independent Provider of Special Education Advice (IPSEA) | The Special Educational Needs and Disabilities Information Advice and Support Services (SENDIASS)

Examples of good practice in Education, Health and Care Plans from the Council for Disabled Children

England: Contact | Cerebra 

Wales: SNAP Cymru | Contact

Scotland: Contact |  Enquire has a telephone helpline and useful information on its website, including this factsheet 

Northern Ireland: SENAC | Contact | The Education Authority

Other useful organisations to contact include:

National Association of Family Information Services (NAFIS) | Cerebra 

Page 86-87 

Different types of short breaks

Homecare Association: directory of local homecare companies

Carers Trust: information on carer support and replacement care services 

Government website: search for disability day care centres

Information on respite care: ScopeMencap 

Page 87 

Respite holidays

Family Holiday Charity: for breaks or grants 

Revitalise: purpose-built holiday centres

NHS: information on carers' breaks and respite care 

Page 89 

Funding for respite care

Search for grants and ways to pay for carers respite: Carers Trust (respite) | Turn2Us | Family FundCarers Trust (benevolent funds)

Page 90 

Living options for young people and adults with Dravet Syndrome

Talk to parents/carers in similar situations on the Dravet Syndrome UK private online forum. If you’d like to join this community, or talk to us about other available support, please email

Page 91 

Securing the funding you need

Information on NHS Continuing Healthcare (Age UK) | England & Wales (Beacon) | Scotland (Independent Living) | Northern Ireland (My Care Consultant)

You can also speak to Citizens Advice about Continuing Healthcare and other funding: England | Scotland | Wales | Northern Ireland  

Page 91 

In the family home

NHS: information on home adaptions 

Page 91-92 

Supported living

NHS social care and support guide: includes a list of housing options

Page 93 

Regulating residential care homes

Residential settings which care primarily for people over 18 (or children for more than 295 days per year) are regulated by: England: The Care Quality Commission | Wales: The Social Services Inspectorate | Scotland: The Care Inspectorate | Northern Ireland: The Regulation and Quality Improvement Agency

Page 94 

Home ownership

Mencap: housing advice and support which covers living options for adults