Themes:
- Personal motivation for volunteering in a health care setting
- Volunteering across health and social care
Volunteer motivation from personal experience
Carole Ions is the Chair of the local branch of the Parkinson’s Disease society and a Trustee of the National Office of the Parkinson’s Disease Society. Her husband was diagnosed with Parkinson’s Disease in his 20s and died aged 53. Parkinson’s Disease is a little known illness which is unique in every case, with symptoms ranging from rigidity to shaking, and Carole and her family felt that lack of knowledge on the part of the medical profession, and lack of support for the whole family contributed to her husband’s death, and her own health failing. After finding a hospital consultant who was incredibly supportive, Carole decided that she would like to give something back, in the form of support to patients and carers who had suffered in the same way as her family had. She received a call from the consultant who asked if she would be interested in supporting other patients of Parkinson’s, and their carers.
As Chair, Carole now organises and helps run the branch of 300 members and sets up small support groups for people who may feel too intimidated to join larger support groups, arranges venues, speakers, programmes, and helps with fundraising ventures. Five thousand pounds was raised to take children of parents with Parkinson’s on an activity holiday. Children in particular are overlooked because Social Services often do not understand the immobility problem, or the social isolation which comes with the illness. Often they may even be bullied at school. Carole volunteered to take the children on the holiday, with help from her teenage daughter, who herself often acted as a befriendee and mentor to the younger children who had queries about the illness but who preferred to ask someone more their own age.
She is also a delegate for the EPDA (European Parkinson’s Disease Association) which means travelling annually to whichever country hosts the General Assembly conference. She has also set up a Former Carers’ project to help people whose loved ones have gone into nursing homes or have died and is currently in the process of setting up a Palliative team, looking at the needs of people in end stage Parkinson’s.
Networking
A great deal of networking is carried out with service providers, including NHS services, (such as nurse specialists and therapists) and Social Services. Through the movement disorder clinics, nurses often approach her to ask her to talk to recently diagnosed patients, families who support long-term sufferers, or long-term sufferers themselves; some who may even be at end-stage of the illness.
Working across health and social care settings
A large part of the volunteer role involves Carole lecturing. Working on behalf of 3 Primary Care Trusts, she may receive a call from the Nursing Manager of one, asking her to contribute to the teaching of a class by lecturing alone, or assisted by a medical specialist, about caring roles and managed care. She often advises on ‘plain speaking’ in text books, so as to keep information for patients and carers jargon-free and simple and easy to understand. She frequently works across Trusts, for example teaching in the neurological department of Newcastle General Hospital, and then being asked by a representative of another Trust who may be attending a Steering Group at a day centre where she is giving a talk. Social Services often request that she gives information talks in nursing homes. Through these talks, patients are guided through the transition from health to social care, and are made aware of resources available to them; what they are and are not likely to be able to access.
Challenges
Working across different boundaries for social care can often be problematic as there is disparity in the way that Social Services work in different areas. Directors of Social Services departments have differing approaches to volunteers; some are happy to recognise the role of volunteers, while others are less likely to do so. It is frequently a problem when Carole makes calls to a benefit office or a Social Services office on behalf of patients or carers as they are reluctant to talk to a ‘volunteer’.
“I’m not a do-gooder, I’m a person with experience.”
Although Carole works from home, her health problems often limit the amount of hours which she can work. Often too it can be tiring when patients and carers phone at all times of the day and week, yet many of the people she deals with have now become friends, so her role as mentor or befriendee can take place in a social setting.
Additional help
Through word of mouth, Carole now has additional help from two volunteers, who carry out some of the administrative work, releasing her to spend more time in her befriending role. Both of these volunteers have their own health problems, but feel that their work on behalf of the Parkinson’s Disease Society has helped their well-being.
Recognition and reward
Carole’s daughter nominated her for the ‘Extraordinary Woman of the Year’ award in 2002, which she won, and her branch of the Parkinson’s Disease Society presented her with a crystal plaque as a thank you for her hard work in 2003.
delegate for the EPDA (European Parkinson’s Disease Association) which means traveling once a year to whichever country hosts the General Assembly conference. I have set up a Former Carer’s project to help people who’s loved ones have gone into nursing homes or have died. Also in the process of setting up a Palliative team looking at the needs of people in end stage Parkinson’s
Contact
Carole Ions
Tel: 0191 273 0109
Email: carole.ions@blueyonder.co.uk
