MCB: Creation of Helplines

23.12.2025

The Workshop on Creation of Helplines, part of EMSP’s Membership Capacity Building (MCB) Programme, was held in 2021.  In this article, you can explore the main outcomes of the workshop and access the presentation slides for further learning.

Objectives of the Workshop

For members to:

• Establish their needs for a helpline
• Establish their purpose and remit (what the helpline will provide and for whom)
• Identify what channels they want to offer e.g. telephone, email, web chat
• Identify what is needed to set up and run their service
• Identify how to ensure their helpline service is safe and sustainable
• Formulate an action plan for next steps

Converting Needs into Purpose

Members were encouraged to think in wide terms about the needs of people with MS and then convert these into meaningful benefits a helpline would bring for both people with MS and for their organisation.

Key questions:

• What are the unmet needs of people with MS?
  • e.g. the need to connect and reduce isolation, lack of access to treatments and long waiting times to see a specialist.
• How does your organisation already meet some of these needs?
• So what could a helpline do better?
• What else could meet these needs? Are there barriers to address?
  • Consider regional and national agencies or policies such as a national MS registry, more clinicians, better awareness of MS for policy makers.
• How could your helpline contribute to the above?
  • e.g. encourage patient engagement with campaigns for a national registry, providing anonymised data on patients’ needs, supporting patients in communicating needs to their specialists.

Members then listed the benefits a helpline could bring to people with MS and to their organisation. For example, input from helpline users into your campaigns could help grow your reputation as the ‘voice’ of people with MS, leading to stronger links with health policy makers.

The What, Who and How

• What will your helpline offer and not offer? Information, advice, listening support? What you decide to offer should be based on your organisation’s values and expertise, the needs of service users, and what is legal and insurable.
  • Who is your helpline for? People with MS and families? Children and young people? Professionals
  • What are your ‘must haves’? Confidential? Freephone? Do you need any assistive technology for some users, such as textphone?
  • Consider other channels as well as the telephone, such as email, text or web chat.

Members were then asked to combine what their helpline will offer with their two sets of benefits to create a short statement (one or two sentences) which sets out the purpose for the helpline, who it is for and the benefits it will bring.
This statement should explain the specific measurable differences a helpline would make. Use active words like ‘reduce, engage, improve, provide, strengthen, influence’.
This statement can help you form a business plan to engage your stakeholders and attract funding.

Recommendation: show your statement to your trustees, fundraisers and any supportive clinical, research or health industry contacts you have, Ask them what would improve it – what could they gain from your helpline? What changes would make it a more attractive statement for them?

Resources and systems

Resources and systems needed for setting up a helpline include staffing and opening hours, a suitably versatile telephone system and wider support structures, such as IT equipment, utilities, recruitment support, insurance, legal guidance, training and marketing.

A small sample of telephony/multi-channel and VOIP providers in the region were provided (see pdf of slides). These do not constitute recommendations from Helplines Partnership.

Many providers offer call queuing, recording, listening in, statistics and reporting options.

Recommendations: do your own research and consult other members about their telephone systems. You may want to operate with your existing system initially until you work out what you need, as a new telephone system can be a big decision.

Keeping safe and sustainable

Having clear, comprehensive written policies helps to keep your service, staff and users safe. Being able to provide data about how your service is running shows stakeholders and funders that you are committed long-term to your helpline, which can encourage continued investment.

Key policies:

• Managing personal data and privacy, *Safeguarding, *Confidentiality, *Feedback and complaints policy
• Aims and objectives of your helpline
• Finance, Risk register, Business continuity plan – these may be organisation-wide.

Monitoring: what data do you need to capture about your helpline service?

• Your funders or commissioners may want demographic and impact data, e.g. how many callers, who and where they are, and what impact the helpline makes on their lives.
• To improve your service and identify training needs and gaps in provision, you need to ask your users for feedback.

Recommendation: make any user survey short and easy to complete, with options to do so anonymously. Start with what data you need, and then develop questions that give you those answers.

Action planning

Members were encouraged to create a plan that feels manageable and realistic.

• Start with your end goal.
• Pick out key actions that you can’t move forward without. Make sure these are measurable and specific.
• Put actions into order of when you will do them, add who will do them and a date.
• Review your action plan with colleagues and stakeholders to keep it relevant.

Recommendations: Make your end goal realistic. It might not be “create a helpline”, but rather “create a business plan for a helpline” or “create partnership with another charity to jointly set up a helpline”. Use active words like ‘contact’ ‘review and update’ and ‘consult’. Avoid vague words like ‘think about’ or ‘plan’.