Useful links
Useful links
We know only too well how stressful it can be supporting or living with someone with swallowing difficulties.
Support is available so never feel you are on your own
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IDDSI
The International Dysphagia Diet Standardisation Initiative
IDDSI is a global initiative to improve the lives of over 590 million people worldwide living with dysphagia
The British Dietetic Association
The BDA is a UK-wide membership organization representing over 9,000 dietitians and dietetic support workers. Getting the correct nutritional intake can be a challenge when you have swallowing issues and they may be able to assist.
Dementia UK
Dementia UK is a specialist dementia nursing charity that is there for the whole family, working towards a day when no one has to face dementia alone.
Dementia often has an impact on people’s appetite and ability to eat and drink, including swallowing issues. The Dementia UK web site provides advice on some of the changes you might notice and how to support the person you care for.
Dementia often has an impact on people’s appetite and ability to eat and drink, including swallowing issues. The Dementia UK web site provides advice on some of the changes you might notice and how to support the person you care for.
Cancer Research UK
Cancer Research UK is the world's largest independent cancer research organisation.
Head and neck cancer patients, in particular, may have swallowing issues.
Motor Neurone Disesase Association
MND is the short term for motor neurone disease, which affects the nerves known as motor neurones. These nerves are found in the brain and spinal cord and they help tell your muscles what to do. This can have an affect on the ability to swallow.
Knowledge Oral Health Care
KOHC is a
group of dental care professionals that deliver accredited oral care training to health care professionals and caregivers. Its website includes information on
dysphagia and mouth-care management and strategies for people that resist mouth-care.
Multiple Sclerosis Trust
The MS Trust is a UK charity that provides guidance, support and coordinated care to help people to manage multiple sclerosis , from the moment of diagnosis and throughout their journey. Its website includes information
about MS and dysphagia.
Facebook - Dysphagia Foods and Recipe Group
This is a private group based in the USA that provides a forum for exchanging information on recipies and meal ideas.
Facebook - Dysphagia Support
This is a private group based in the USA that was created to provide support for people who are diagnosed with dysphagia.
NFOSD
The National Federation of Swallowing Disorders is a USA based organisation. Their commitment is to provide patient hope and improve quality of life for those suffering from all types of swallowing disorders. By enhancing direct patient support, education, research and raising public, professional and governmental awareness. Their mission is to advance the prevention and treatment of swallowing disorders in our lifetime.
Facebook - NFOSD Online Swallowing Support
The National Federation of Swallowing Disorders is a USA based organisation.
This group is open to those impacted by swallowing disorders including patients, family members, caregivers, and friends as a way to easily share your stories, resources, questions, answers, and support with others
The Samaritans
Providing support when you need to talk to someone You don’t have to feel suicidal to get in touch. Only 1 person in 5 who calls Samaritans says that they feel suicidal.
Things to look out for in yourself when you're finding everyday life hard. Maybe you can't quite put your finger on it, but you’re not feeling okay.
Samaritans are here to listen.
National Health Service
The NHS provides support to people with swallowing issues. Its web site has links to useful information.
Royal College of Speech and Language Therapists
The RCSLT provides support to people with swallowing issues.
Speech and language therapists have a key role in educating/training others in identifying, assessing and managing dysphagia.
Speech and language therapists have a key role in educating/training others in identifying, assessing and managing dysphagia.
Alzheimer's Society
Dementia is a general term for a decline in mental ability severe enough to interfere with daily life, while Alzheimer's is a specific disease. Alzheimer’s is the most common cause of dementia. Many people with Alzheimer's have difficulty swallowing food and drink.
Macmillan Cancer Support
Macmillan Cancer Support is one of the largest British charities and provides specialist health care, information and financial support to people affected by cancer. It also looks at the social, emotional and practical impact cancer can have, and campaigns for better cancer care. Macmillan Cancer Support's goal is to reach and improve the lives of everyone who has cancer in the UK
Scope UK
Scope is a disability equality charity in England and Wales. It provides practical information and emotional support. Its information includes help with dysphagia and swallowing issues.
Stroke Association
After a stroke some people have difficulty swallowing (dysphagia). The Stroke Association aims to support people to rebuild their lives after a stroke, through information and support with dysphagia.
Headway - The Brain Injury Association
Headway provides information, support and services to brain injury survivors, their families and carers including a Factsheet on dysphagia. Local Headway branches provide a wide range of face-to-face services including day service,
neurological therapies, rehabilitation, carer support, social re-integration, community outreach and
respite care.
The Brain Charity
The Brain Charity helps anyone affected by a neurological condition, and their family, friends and carers. Through its centre in Liverpool and by phone and email the Brain Charity provides:
practical help with matters such as claiming benefits and seeking career advice; emotional support
through phone befriending, counselling and support groups; and social activities. Its website includes
information on dysphagia.
Parkinson's UK
Parkinson's UK is the operating name of the Parkinson's Disease Society of the UK.
Some people with Parkinson’s may find they have problems with eating, swallowing and controlling
their saliva. Parkinson’s UK provides information on the issues they may face and the help that is
available.
Living with Parkinson's can feel overwhelming if you don't have the right support. The Society is here to help everyone feel in control of life with Parkinson's. From support with welfare benefits, to managing your Parkinson's symptoms, to just having a friendly face to share with. You're not alone. Help is out there. And they can help you find what’s available to you.