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The Parkinson's Disease Society (PDS) of the United Kingdom The PDS is an organisation of and for people with Parkinson's. There are nation-wide approximately 230 local sections offering extensive help and support. A review of their work is given in this chapter. In the first place the PDS organises a number of welfare services. You can for example contact the confidential Helpline service, where you will find a sympathetic ear. The staff of the Welfare Department will be able to answer your questions, for example questions on practical issues, aid appliances, benefits, insurance, financial problems, employment and driving. You can also raise questions about holidays, including the holidays that the PDS itself organises. The PDS also provides information and awareness activities. You can address all your questions on Parkinson's to the PDS. There is extensive information material available: a wide range of publications, cassette tapes, video's and a CD-ROM. The PDS is also engaged in research. More than one million pounds per annum is devoted to research, distributed over approximately forty projects. To finance this and other projects fundraising activities are organised throughout the UK. The PDS organises special activities for a number of groups, such as young people with Parkinson's (the YAPP&RS) and black and minority ethnic communities. Anyone can become a member of the PDS. Membership costs approximately 4 pounds per year. You will then receive the newsletter quarterly. You are not alone If you have recently been diagnosed with Parkinson's Disease, you may be feeling unsettled and afraid of what the future holds for you. Most newly diagnosed people will find that the period immediately following diagnosis is a very difficult time. You may find you have to deal with moments of uncertainty, lack of understanding and fear while you come to terms with the diagnosis and how it will affect your life If this is how you feel at the moment, be assured that most people find that this initial period of depression and uncertainty does eventually ease and they start coping with Parkinson's and finding ways to overcome problems that occur. Because Parkinson's is such an individual condition, the length of time it may take you to start accepting your diagnosis will depend on many factors. These include what type of person you are, your particular circumstances and the availability of information, advice and support. Please do not feel that you have to cope with Parkinson's alone. The PDS can help you. We have a great deal of knowledge and expertise that you can use to help find answers to the questions you have. However, we don't simply help the newly diagnosed; we can be a continual help to you and your family. We can, for example, put you in touch with other people who have Parkinson's and their families through our local branch network and YAPP&RS groups for younger people with Parkinson's. Many people find it helpful to talk with people who are dealing with the same or similar situations, who will understand what you are going through. Your partner, relatives or friends may also enjoy meeting other people with Parkinson's and their relatives and friends. This contact and the other services that the PDS offers can make a big difference to your ability to cope with Parkinson's. It will also help you maintain a good quality of life and make informed decisions about any aspects of your life that are of concern to you. The following information provides an overview of the services that the Society can offer you. Don't be afraid to contact us: the PDS are here to help. The Parkinson's Disease Society of the United Kingdom The PDS of the United Kingdom was founded in 1969 by Mali Jenkins, a carer whose sister, Sarah, had Parkinson's. When Mali's sister was diagnosed, they were surprised to find that no Society existed to help them with the many questions they had. They therefore decided to found one. The initial purpose was to provide information and support to people like themselves who were coping with Parkinson's. Over the years the services provided have greatly increased and the Society is now a major medical charity helping all people with Parkinson's, their relatives, friends, and the professionals who look after them. The aims of the Society are the same now as they were when the Society was formed. They are: Welfare services The PDS runs a confidential helpline service which you can call Mondays to Fridays from 09.30 - 17.30. The helpline is staffed by two nurses with considerable experience of Parkinson's Disease. They can offer you a listening ear to help you talk about how you feel and discuss any questions you have about Parkinson's and its treatment. The helpline is available on a freephone number: 080 8800 0303. The Welfare Department employs other staff who can help you with information and advice on practical issues, including getting help with equipment, benefits, insurance, financial problems, employment and driving. (For example, see Chapter 24 'Work' and Chapter 25 'Welfare benefits'). The PDS can also help you with information on holidays. PDS organises a special holidays programme at locations throughout the United Kingdom. These holidays are designed for people with Parkinson's and their families and cater for any special needs. PDS can also provide you with information on other types of holidays that may be suitable. (See Chapter 11 'Sports, hobbies and holidays'). As Parkinson's progresses, respite care and residential and nursing home care can become very important. PDS is involved in developing high standards of practice in all these areas and can refer you to appropriate schemes in your area. (See Chapter 22 'Care in a residential or nursing home'). Information and awareness activities The Information Department responds to queries from people with Parkinson's, their families and friends, and the professionals who care for them. These queries may include questions about Parkinson's, its treatment, therapy, complementary medicine and diet. If necessary, you may be referred to another organisation or agency to help you get the information you need. A wide range of publications, cassette tapes, videos and a CD-Rom is available in order to provide you with information about all aspects of Parkinson's. These include information and videos specifically for the newly diagnosed as well as for people who have had Parkinson's for some time. If you become a member of the Society you will also receive a quarterly newsletter, "The Parkinson", which includes information about the latest advances in Parkinson's research, news, and tips and advice from other people with Parkinson's and carers. The PDS is recognised as the national voice for people with Parkinson's, and as such campaigns on your behalf. Using the media, advertising, and information materials, the PDS is determined to improve understanding of Parkinson's amongst the general public. Research The PDS funds over 40 research projects in the United Kingdom and spends more than £1.2 million a year on research. Medical research is dedicated to finding the cause, cure and prevention of Parkinson's and developing improved and new treatments. The PDS's internationally acclaimed Brain Research Centre in London uses donor tissue from people with and without Parkinson's to research the processes in the brain related to Parkinsonism. The PDS also has a special interest group for medical research called the Special Parkinson's Research Interest Group (SPRING). Members of SPRING help the PDS to increase the profile of medical research and raise funds to support projects throughout the United Kingdom. Further details can be obtained from: SPRING, Summer Court, Northdown Lane, Guildford, GU1 3TS. Telephone: 01483 538451 Fax: 01483 506300. The PDS also funds welfare research. These projects aim to develop models of good practice in the management of Parkinson's and improvement of services. Many projects have also focused on rehabilitation and the needs of carers. Fundraising The PDS could not function without money of course and the Society raises money to fund its services and projects. Events and activities are held throughout the United Kingdom. If you are interested in fundraising, there are many ways that you can help. Contact the Society for more information on fundraising events. Local Help and Special Interest Groups Local help and support is very important. The PDS has field staff based throughout the United Kingdom. They develop local branches in their area and liaise with local health and social care providers, promoting the PDS's welfare, education, research, and fundraising work. In 1995 the Scottish Resource, a regional office based in Glasgow, was opened. Another office in Wales will be opened in 2,000. PDS Branches There are 250 PDS Branches throughout the United Kingdom, all run entirely by volunteers. Branches offer you help, advice and mutual support as well as opportunities to participate in social activities and help with fundraising initiatives. They usually meet on a monthly basis and can provide you with advice on facilities in your local area. Many of them also have welfare visitors, who can visit you in your home to discuss your situation and advise you on help that is available. If you would like to make contact with your local branch, contact the PDS and you will be put in touch with your local area officer who can give you details.. YAPP&RS (Young Alert Parkinsonians, Partners and Relatives) This is the young onset special interest group of the PDS and its main aim is to foster mutual support for younger people of working age who are affected by Parkinson's. They offer opportunities to: YAPP&RS encourage professionals to be aware of the individual needs of younger people living with Parkinson's. The group does significant work and focuses on the particular problems of younger people: the problems of work, financial pressures, relationships and the strains of bringing up a family. There are 15 regional sub-groups around the country that arrange informal meetings. National meetings are held every two years, usually over a weekend. A magazine called YAPmag is produced quarterly. Further details can be obtained from: Emma Bennion, Church Farm, Bircham Newton, Kings Lynn, Norfolk PE31 6QZ. Tel:01485 578592 Fax:01485 578603 e-mail: bennion@paston.co.uk Ethnic Groups The PDS is also looking at ways in which it can improve services to people who come from black and minority ethnic communities. The Outreach Service in Birmingham (West Midlands) employs two information officers who provide advice, information and support to people from these communities affected by Parkinson's. They have recently developed videos on Parkinson's for Afro-Caribbean and Asian people, with the help of a grant from the Department of Health. Further information can be obtained from the Outreach Service for Black and Minority Ethnic Communities, Suite 312 Bradford Court, 131 Bradford Street, Birmingham B12 0NS. Tel: 0121 608 1661. Fax 0121 608 1667. International Initiatives PDS has also made contact over the last few years with sister organisations in other countries, particularly in Europe and America. As a result, a European Parkinson's Disease Association (EPDA) has been set up to develop pan-European projects on Parkinson's and raise awareness of the condition at a European level. These contacts are extremely important, because we can learn a lot from one another about coping and sharing information and initiatives on Parkinson's. Joining the PDS Please feel free to contact the PDS if you would like further information on any aspect of Parkinson's or wish to become a member. You do not have to be a member of the Society to receive help, but membership (£ 4.00 UK residents, £ 15.00 overseas residents) will ensure that you receive the most up to date information through our quarterly newsletter. Whether you have Parkinson's or are a partner, carer or family member, don't keep struggling by yourself. The PDS is there to help you find ways of helping yourself. Together we can improve the quality of your life. Address: The Parkinson's Disease Society of the United Kingdom 215 Vauxhall Bridge Road London SW1V 1EJ Telephone: 020 7931 8080 Helpline: freephone 0808 800 0303 Fax: 020 7233 9908 e-mail: mailbox@pdsuk.demon.co.uk |
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