THE PARKINSON’S DISEASE SOCIETY (PDS)
The Parkinson’s Disease Society aims to:
§ Be one of the leading neurological charities in the UK, serving all people with, and affected by Parkinson’s.
§ Help people with Parkinson’s and their families, carers and friends by providing vital support, advice and information.
§ Improve access to, and quality of, services locally and nationally.
§ Fund and promote research into causes, prevention and cure of Parkinson’s disease.
The Parkinson’s Disease Society:
Provides help, information and advice
§ The PDS runs a free phone national advisory service [0808 800 0303 Monday – Friday 09:30am – 9pm and Saturday 9:30am to 5:30pm] that provides advice and information to all people affected by Parkinson’s.
§ The service deals with a wide range of medical and non-medical issues, including social care, welfare and employment.
§ The PDS website is full of news, information, advice and relevant contacts. The domain is www.parkinsons.org.uk
§ Information sheets, booklets, audio tapes, videos, on all aspects of Parkinson’s for people with Parkinson’s, families, carers and health care professionals.
§ As well as the national office in London, there are offices in Wales, Scotland and Northern Ireland.
Funds and promotes cutting edge research
§ The PDS currently commits £3.4 million annually on research projects into all aspects of Parkinson’s.
§ Through its wide-ranging research programme, the Society is looking into the causes of the disease, its prevention, improved care and treatments and possible cures.
§ Brain tissue is being used by an increasing number of researchers to investigate the development of Parkinson’s and identify targets for drug therapy. The PDS Tissue Bank is based in London.
Influences decision makers to make a difference
§ The PDS seeks to influence health and social policies throughout the UK to ensure the needs of all people with Parkinson’s are met effectively.
§ The PDS currently has five key campaign priorities:
o Access to a Parkinson's Disease Nurse Specialist
o Exemption from prescription charges for people with Parkinson's across the UK
o Better access to and management of drug treatment for Parkinson's in secondary care and care homes
o Improved support for carers, including respite care and advanced stage care packages
o Wider provision of information resources and programmes to promote control over and self-management.
Supports the provision of high quality health care
§ The PDS believes that all people with Parkinson’s should have high quality health care and the help and support they need close to home, wherever they live.
§ The PDS operates a network of Parkinson’s Disease Nurse Specialists and aims to have 240 across the UK by 2006.
§ The PDS provides literature and runs conferences for professionals working with people with Parkinson’s with the aim of improving the quality of care and support.
Provides local support to people affected by Parkinson’s
§ There are over 300 branches and support groups with 30,000 members located throughout England, Scotland, Wales and Northern Ireland.
§ The branches are run by volunteers, often people with Parkinson’s and their families, and offer support, information, social activities and practical help at a local level.
§ The PDS’ network of Area Managers, Development Workers and Community Support Workers provide support locally to people affected by Parkinson’s.
§ The Younger Parkinson’s Network exists to support and provide information to people of working age with Parkinson’s and their families.
Parkinson’s Disease Facts:
How many people have Parkinson’s disease?
§ It is estimated that as many as 120,000 people in the UK have Parkinson’s. That is one in 500 of the general population.
§ Up to seven million people in the UK are touched by Parkinson’s.
§ 4,000,000 people worldwide are estimated to have Parkinson’s disease.
Who gets Parkinson’s disease?
§ Approximately 10,000 people are diagnosed each year in the UK.
§ Most people are diagnosed over the age of 60, but younger people can also develop Parkinson’s.
§ It is estimated that one in 20 people with Parkinson’s is under the age of 40 when first diagnosed.
What is Parkinson’s disease?
§ Parkinson’s is a progressive, neurological disorder. It can affect all activities including talking, walking, swallowing and writing.
§ Parkinson’s occurs when cells in the part of the brain that controls movement are lost. These cells produce dopamine, a chemical messenger that enables people to perform smooth co-ordinated movements. It is not known why these cells die. Once 80% of these cells have been destroyed the symptoms of Parkinson’s appear.
§ The three main symptoms are shaking, muscle stiffness and slowness of movement however, not everyone will experience all three.
§ Everyday tasks can become difficult to perform, including walking, talking, writing, speaking, swallowing and even smiling
§ Other symptoms may include a lack of facial expression, an altered posture, tiredness, difficulties with balance, speech and writing, depression. A minority of people may experience problems with swallowing.
The Parkinson's Disease Society was established in 1969 and now has 30,000 members, 19,000 supporters and over 300 branches and support groups throughout the UK. We provide support, advice and information to people with Parkinson's, their carers, families and friends, and to health and social services professionals involved in management and care. It is a registered charity.
Last year the Society spent more than £3.4 million on funding research into the cause, cure and prevention of Parkinson's, and improvements in available treatments. The Society also develops models of good practice in service provision, such as Parkinson's Disease Nurse Specialists and respite care, and campaigns for changes that will improve the lives of people affected by Parkinson's.
Our Founder - Mali Jenkins
Mali Jenkins 4th July 1907 - 11th March 1989
Mali Hilda Christopher Jenkins was born in Chelsea, London, on July 4, 1907. She was the fourth daughter of seven children born to Tom and Sarah Jenkins.
Her parents, although both originally from Wales, met and married in London in 1898, setting up home above the shop on the Kings Road in Chelsea where Tom worked as a Master Dairyman. This was Mali's first home, but the family moved frequently throughout South West London, before finally settling in Southfields.
Mali attended secretarial school, and around 1930 started work as a secretary for A Romary & Co Ltd in Tunbridge Wells. She continued to work with the company for nearly 25 years, living above the premises, a picturesque 16th Century building with a shop at street level.
In 1957, when Mali was Company Secretary and a Director, the company moved to Scotland. Wanting to stay in the South of England, Mali left her post and moved back to the family home in Southfields before moving to Hertfordshire to take up a new position with Schreiber Furniture Ltd. She continued for the business until she retired in 1967.
Once again, she returned to the family home and lived with two of her sisters, Sarah and Eryl. Sarah, who had been diagnosed with Parkinson's some years earlier, was cared for at the family home. Mali had presumed that there would patients associations to help people affected by Parkinson's, but searches of local libraries had shown that no such society existed. She was further frustrated to find that there was an absence of literature in layman's terms about her sister's condition.
Determined to find out what she could about Pd, Mali began an investigation, and it was from this research that the idea of starting a society grew. By late 1967, Mali had set up an exploratory steering group of neurologists, solicitors, relatives, friends and supporters. Working in a bedroom converted into an office in the family home, Mali progressed plans that eventually led to the Society being granted charitable status on 26th February 1969.
Two areas of prime concern were publicity and fundraising, and Mali set out on an almost daily quest for advice, assistance with introductions and financial backing. Her hard work paid off in the spring of 1969, when Mali was interviewed on Woman's Hour. The interview was followed up by an appeal on BBC radio by Stratford Johns.
Mali knew the effect Parkinson's had on people and human relationships, and was determined to provide support at a local level. In 1970, she oversaw the setting up of the first local branch in Tunbridge Wells.
In 1978, Mali's work was recognised in the New Year's Honours list, and she received an OBE at Buckingham Palace. In the same year, she retired as Chair of the Society, but she continued to give her time, travelling the country to attend meetings and campaigning to ensure that the funds raised would be evenly spent between welfare and research. This is reflected in the aims of the Society which are:
To help people with Parkinson's and their carers and families with the problems arising from Parkinson's.
To collect and disseminate information on Parkinson's.
To encourage and provide funds for research into Parkinson's.
Mali died on 11th March 1989 at the age of 81, whilst attending a welfare meeting for branches in Dover. Mali's drive, vision and determination led to the creation of a Society that has been able to grow, develop and respond to the needs of all those affected by Parkinson's over many years.