The Parkinson’s association in your country may also be able to provide information based on members’ experiences. The EPDA website [www.epda.eu.com] contains the contact details for European Parkinson's disease organisations and international Parkinson’s organisations.
Your Parkinson’s association may also advise and provide information and educational opportunities for health professionals.
Website: www.carersuk.org
Carers UK is an organisation of carers aimed at providing a voice for carers.
20-25 Glasshouse Yard
London
EC1A 4JT
United Kingdom
To get advice or support:
CarersLine Freephone 0808 808 7777 (UK only)
Tel: +44 (0)20 7490 8818
Fax: +44 (0)20 7490 8824
Email: info@carersuk.org
Website: www.carers.gov.uk
Website: www.direct.gov.uk/carers
Directgov is the Government portal with information about disability rights and support in the UK.
This website is aimed at professionals who work with carers. If you are a carers lead or other health and social care professional working with carers you will find the information on this site of interest. The site contains Government guidance and regulations affecting carers and details of the Carers Grant.
Website: www.crossroads.org.uk
Crossroads Association is the national charity supporting all Crossroads schemes in England and Wales. The Crossroads schemes in the network provide a range of services that are designed to provide sensitive and understanding support to carers of all ages and those they care for.
Crossroads promotes, offers, supports and delivers high quality service for carers and people with care needs.
Crossroads Association
10 Regent Place
Rugby
Warwickshire
CV21 2PN
United Kingdom
Tel: +44 (0)845 450 0350
Fax: +44 (0)845 450 6556
Website: www.eurocarers.org
Eurocarers, European Association Working for Carers, seeks to represent and act on behalf of all informal carers, irrespective of their age or the particular health need of the person they are caring for. It's aims are philanthropic, educational and scientific pursuits with regard to the representation of carers.
Helen Lear
Eurocarers Administrator
C/- Carers UK
Ruth Pitter House
20-25 Glasshouse Yard
London
EC1A 4JT
United Kingdom
Email: helen.lear@eurocarers.org
Website:www.thefamilycaregiver.org
The National Family Caregivers Association educates, supports, empowers and speaks up for the more than 50 million Americans who care for loved ones with a chronic illness or disability or the frailties of old age. NFCA reaches across the boundaries of diagnoses, relationships and life stages to help transform family caregivers' lives by removing barriers to health and well being.
10400 Connecticut Avenue
Suite 500
Kensington
MD 20895-3944
USA
Toll Free:1-800-896-3650 (US only)
Tel:301-942-6430
Fax:301-942-2302
Email:info@thefamilycaregiver.org
Website: www.parkinsons.org.uk/carers
The Parkinson’s Disease Society (PDS) nurses and specialist advisors on the Helpline offer support and advice, giving people the confidence to manage the condition and plan ahead.
The PDS produce a wide range of information sheets, booklets, and DVDs, answer questions on all aspects of the condition, helping people with Parkinson’s, their families and carers, and professionals involved in the management of the condition.
The PDS network of over 330 branches and support groups located across the UK offer support and services, enabling everyone affected by Parkinson’s and their families to meet others in similar situations.
PDS National Office
215 Vauxhall Bridge Road
London
SW1V 1EJ
United Kingdom
Tel: +44 (0) 20 7931 8080
Fax: +44 (0) 20 7233 9908 / 7963 9360
To get advice or support:
PDS Helpline on Freephone 0808 800 0303 (UK only)
Website: www.carers.org
Website: www.youngcarers.net
The Princess Royal Trust for Carers was created on the initiative of HRH The Princess Royal in 1991. At that time people caring at home for family members or friends with disabilities and chronic illnesses were scarcely recognised as requiring support.
The Princess Royal Trust for Carers is the largest provider of comprehensive carers support services in the UK. Through its unique network of 144 independently managed Carers' Centres , 85 young carers services and interactive websites, www.carers.org and www.youngcarers.net, The Trust currently provides quality information, advice and support services to almost 354,000 carers, including over 20,000 young carers.
In addition, The Trust also acts independently in the interests of carers through:
Email: help@carers.org
Adapted from Maria Meyer's The Comfort of Home for Parkinson Disease: A Guide for Caregivers, “Caring in the Comfort of HomeTM: a Guide for Carers" has been "translated" for the UK by the European Federation of Neurological Associations (EFNA) made possible through educational grants provided by Pfizer, Solvay, GE Healthcare and Britannia Pharmaceuticals.
For most people, there is no place like home. But every year hundreds of thousands of people affected by illness and disability face the heart-breaking situation that they can no longer manage to look after themselves. Some are elderly, some have chronic disease but for whatever reason they can only remain in their own home if they have someone to help care for them. Although the Social Services can provide help with care, unpaid carers (family and friends) are a vital support - their value to the individual is priceless; their value to society in the UK has been estimated at £87 billion each year. Without a carer the alternative for many may be a move to residential or nursing homes. The physical and emotional demands on carers are huge; many feel lost, alone, frustrated and uncertain. Although the government has launched a National Strategy for carers, many still feel overwhelmed and don’t know where to turn to for practical advice and help.
The Parkinson's information leaflet series has been produced in collaboration with the European Parkinson's Disease Association (EPDA) and was supported by an unrestricted educational grant from Novartis Pharma AG and Orion Corporation, Orion Pharma.
Leaflet 6 discusses the central role you, as a caregiver, play in the care of somebody with Parkinson's disease. There is also practical advice on a variety of topics that might make taking on this responsibility easier, and remind you that your own health is also very important. For more information on Parkinson's you may find that it useful to read the other five leaflets in the full leaflet series.
See also PD resources: For Carers
