Parkinson's disease: forming partnerships
Janet Sanders has Parkinson's and is the chairperson of the UK Parkinson's Disease Association. This fact sheet is based on a talk given by Janet at the 1998 EPDA conference in Barcelona.
There is more to managing chronic and degenerative neurological disorders than making the diagnosis and handing out a prescription. People are now better informed and have higher expectations about treatment and quality of life. They will not (and should not) accept the edict: 'There is nothing you can do, just keep taking the tablets.'
The onset of Parkinson's starts a journey into the unknown — a journey which is uncharted, unwanted and which can be very lonely. This is the time to form partnerships, partnerships which should last a lifetime. These partnerships, if effective, can determine the optimal management of the disorder and can help resolve often conflicting opinions on treatment and care. They can inform, support and enable the person with Parkinson's and their carer. They can just be someone to talk to.
The reasons for forming partnerships are for coping with the diagnosis, obtaining information, developing a long-term management plan, having choices and improving quality of life.
When a person is first told they have Parkinson's, the impact of the diagnosis is such that they may feel devastated, powerless, and that there is nothing they can do — life is suddenly out of control. They think of questions — after they leave the doctor's surgery. They can become depressed and not really understand that having been told they have a condition such as Parkinson's is a type of bereavement. A person can start as an individual and end up with a label, feeling without an identity. People can feel lonely and that there is no-one to help or talk to. GPs may discourage contact with the Parkinson's association, feeling it would be depressing to join.
In managing Parkinson's, the primary need is for information and support. The social and economic impact is rarely considered and there is often no one to give advice on telling other people such as friends and family. In one Parkinson's members' needs survey, the most important need expressed was for information. Other needs highlighted were:
- to be referred to a specialist;
- for a sensitive telling of the diagnosis;
- for information and ownership of a care plan;
- for emotional and psychological support;
- for continuity of care; and
- to be listened to.
It is all about information (listening to each other), education (learning from each other) and communication (talking to each other).
As soon as a diagnosis is made, partners should be found. From GPs, neurologists and geriatricians to social workers, therapists and the local Parkinson's association. And, like true partnerships, each partner should have equal status. They share the problems, they share the choices and they share the decisions.
The first and closest partnership is between the carer and family. Family relationships can be put under strain and members may need professional care to support and maintain this partnership.
An important and long-term partnership is with GPs, who are the first contact and provide regular input and monitoring. Consultant neurologists or geriatricians are the experts, and here, experience is the key factor, as many do not have a special interest in Parkinson's and its psychosocial aspects. Early partnerships with therapists and other health care professionals pay dividends. This leads to optimal management and improved quality of life.
The other member of many teams is the Parkinson's nurse specialist, who has specialist knowledge, a holistic approach, is always available and can make a tremendous difference to life with Parkinson's.
Parkinson's associations need not be depressing and can help by giving information on Parkinson's and services, providing someone to talk to and give understanding, companionship and hope.
Support groups are a part of Parkinson's associations and support group involvement can help reduce stress, provide a forum for exchange of ideas and feelings in an uncensored atmosphere, reduce social isolation, offer information about available resources and services, dispel misconceptions and foster self-confidence.
Partnerships work by team work, and long-term management of Parkinson's needs a management plan and a team which provides medical, social and functional aspects of care. The management plan is a dynamic entity owned by the patient and carer. The person with Parkinson's is the chairperson and the expert and the professionals are there to guide, but not direct.
The other vital aspect of team work is education. Health professionals may have limited knowledge and the person with Parkinson's can provide continuous training and education, leading to greater interest, understanding and knowledge.
The informed patient is changing established roles and the old certainties that the doctor knows best are dissolving. Compliance is being replaced with concordance and the patient has the right to know. The doctor may still feel that the patient can't cope with the complexities of the disease and that they need to take control, telling the patient only a certain amount and making decisions on management. Patients, however, want and need to know as much as possible and to take control of their lives and their condition.
There is life with Parkinson's and that life can be enhanced and enriched by the formation of true and effective partnerships — starting at the telling of the diagnosis.
Last Reviewed: 24 July 2002
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