The key factors which enable people with Parkinson’s to remain in or re-enter employment

Final Report - September 2003

Pauline Banks and Maggie Lawrence, Strathclyde Centre for Disability Research, University of Glasgow

Recommendations:

Recommendations focus on the general support needs of younger people with Parkinson’s followed by employment and information needs. We have not directed recommendations towards specific professionals as the increase in interdisciplinary working means that the tasks assumed by professionals in different multidisciplinary teams may vary.

Support needs:

Everyone receiving a diagnosis of Parkinson’s should be given an opportunity to ask questions and be provided with verbal and written information that they can take home.
People newly diagnosed with Parkinson’s should be treated as partners in their treatment, being given full information about the pros and cons of medication prior to deciding on any course of action.
Attention should be paid to the patients’ lifestyle and commitments, e.g. nature of employment, young children, elderly parents, and the need to drive.
Younger PwP should be offered a regular review, or be able to self-refer to a multi-disciplinary team specialising in Parkinson’s.
Multi-disciplinary teams working with younger people with Parkinson’s should include, or have access to a vocational rehabilitation adviser, and counselling or psychological services.
Issues of transport and safe driving should be covered during reviews, taking into account any changes in medication. PwP should be given a copy of the PDS leaflet Parkinson’s and Driving.

Employment
Issues of employment should be dealt with immediately post-diagnosis, including an assessment of the current work-role and any adjustments that maybe required.

• PwP should be provided with an information leaflet designed for employers. These leaflets should include information about Parkinson’s the type of support that employees might benefit from, and the provisions of the DDA, taking care to highlight the advantages of supporting employees.
• Where adaptations and/or adjustments in the workplace are planned, it is vital that these are implemented without delay, and reviewed on a regular basis.
• PwP should be provided with advice relating to a range of adaptations and/or equipment.
• PwP who experience difficulty at work should be offered support through an advocacy service which could liaise with employers and provide information and advice. Where appropriate contact should be made with Union representatives.
• It should be recognised that some PwP will be unable to continue in paid employment for an extended period following the onset of Parkinson’s. Where PwP are considering early withdrawal from the labour market they should be given the Parkinson’s Welfare and Employment Rights Service’s information sheet designed for PwP taking early retirement.

Information
Patients and their families should be given a list of contacts in their area including health and voluntary organisations and information about how to access to a range of information e.g. using the Internet. It should not be assumed that everyone has access to the Internet, and information sheets should include details of libraries where the general public can be supported in the use of IT.
Information packs should include details relating to the PDS including the head office, local branches, the nearest YAPP&Rs group and the Parkinson’s Welfare and Employment Rights Service.
Relevant up to date information relating to benefits and employment rights and how to contact the DWP should be available at all times with updates published regularly e.g. in the PDS and YAPP&Rs magazines.
The PDS should take steps to raise awareness of the special needs of younger PwP amongst GPs, Consultants, PDNS, and vocational rehabilitation specialists.
The PDS should strive to reach as many younger PwP as possible e.g. by raising awareness amongst the general public, and promoting the services and support that the PDS provides.
The PDS should prepare an information leaflet for employers providing information about Parkinson’s and the type of support that employees might benefit from.