The participation of adult service users, including older people, in developing social care

Practice example 12: Multiple Sclerosis Society (MS Society)

Characteristics of service users involved

The MS Society is a cross national voluntary membership organisation for people affected by multiple sclerosis (MS) across the United Kingdom.

How service user participation within the organisation is ensured

People with MS are central to the work of the MS Society and are encouraged to get involved in all aspects of our work and at all levels. The organization has over 40,000 members, the majority of whom are people with MS. Many become involved in branch activities, regional committees, as Trustees, on grant and research panels, as assessors and reviewers of publications from the Society, as service development volunteers, volunteer helpline operators, fundraisers, and as paid members of the staff team.

What policies on service user participation has the organisation formulated?

Since user involvement is an essential and core aspect of the MS Society’s ethos, it is built into all policies, procedures and working practices.

How are service users supported?

Users involved in the running of the organisation are supported by way of: training; provision of a named contact; regular reviews; opportunities for feedback and to discuss any concerns; and organising events and newsletters. Expenses are paid for overnight stays and travel.

How are the effects of participation monitored, audited, and evaluated?

This is an on-going process involving collecting feedback from those the MS Society supports and assessing what can be done to further improve their experiences as service users, and as active participants in the running of the organisation.

What makes organisations succeed in participation?

The key to successful participation lies simply in valuing the input of the service users - understanding that it is their engagement that enables the organisation to achieve so much.

Contact details  

Caron Furnival (Head of Service Development) MS Society, MS National Centre, 372 Edgware Road, London, NW2 6ND 020 8438 0700