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 info@dravet.org.uk
We have a private online forum. If you’d like to join this community, please email info@dravet.org.uk
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
Holidays
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 | Scotland | Wales. 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 info@dravet.org.uk
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 | Scotland | Wales
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 info@dravet.org.uk
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
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: Scope | Mencap
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 Fund | Carers 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 info@dravet.org.uk
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
