COMPLETE: Optimization of community resources and systems of support to enhance the process of living with Parkinson’s Disease: a multisectoral intervention (Linked to PARTNERS)

Chief Investigator:  Professor Mari Carmen Portillo – University of Southampton

Funder :

Background:

This ongoing project looks at strategies that could help people live with Parkinson’s disease in the community through better use of resources and systems of support. It has worked with other organisations and community groups to test out an intervention to improve the coordination of services and resources for people with Parkinson’s disease, along with their and family carers, in 4 European countries.

The overall aim of this project was to establish the feasibility and acceptability of an intervention that will enhance the lives of people with Parkinson’s disease (PD) and their family/carer. It has helped build a multisectoral care pathway. Iin particular it has focussed on how to optimize the use of resources and systems of support in the community, for disadvantaged populations of different European countries.

We have looked at personalised assessments of needs and priorities, the role of a Parkinson’s disease coordinator, and navigation of resources in the community. In the UK we are working in collaboration with Hampshire and Isle of Wight Integrated Care System, Solent NHS Trust, and Parkinson’s UK.

Who did we work with?

Coordinator/chief investigator of the project: United Kingdom: University of Southampton, Professo Mari Carmen Portillo

Country leads:

• Spain: Autonomous University Madrid, Dr Victoria Navarta Sanchez Spain, Fundación La Princesa, Dr Lydia López

• Denmark: VIA University College,  Dr Anita Haahr

• Norway: University of Oslo, Dr Line Kildal
  

Partners: Parkinson’s disease associations in the four countries

What did we learn?

During the qualitative phase: 47 people with Parkinson’s disease and 39 family carers were recruited

The themes emerged were the following:

• Personalised care for individual needs

• Collaboration of different key agents

• Accessibility of different types of support systems

• Self-management

Intervention

86 participants took part in the intervention (data being analysed)

What difference will this make?

Based on this project, partnerships between individuals (person living with Parkinson’s disease, family carer, and healthcare professionals) and across sectors in the community were developed. These can optimize the use of resources in the health-care system and personalise the information about disease, treatments, and the use of community resources/professional services in Parkinson’s disease management.

A feasible intervention has been developed across countries that could be embedded in care pathways for people with Parkinson’s and carers.

What difference can this make to people with Parkinson's disease (PD)?

• It can promote a change of culture and roles that enables the dialogue between sectors and levels of care

• It will empower people with PD and families to be at the centre of the decision making process of the multisectoral intervention

• It can enhance health and create the foundation of a transformative framework of bottom up strategies to create an overarall approach across Europe. This could enhance equity, continuity and transparency, as well as mobilise resources in health and social care. This would have a clear impact on people with Parkinson disease and families’ to make important decisions on their care and improve quality of life

What's next?

This project has become the basis of a submission for futher funding to test our intervention with people with MLTCs Multiple Long Term Conditions (MLTCs ) and how to implementation it

Our partners hope to develop and implement a digital tool, through cross sector collaboration, to improve:

-          support and self-management for people with Long Term Conditions (LTCs)

-          communication and quality of cross sector care