MS Ireland

Your Society Your Say

2015 – 2019

Executive Summary

EXECUTIVE SUMMARY

MS Ireland (MSI) commissioned a survey to help inform the 2015 – 2019 strategic plan which is currently being drafted. Broken down into 9 sections the survey covered the 6 strategic goals of MS Ireland as well as collecting demographic data and allowing for ideas/ suggestions with a number of open questions.

The section headings were:

  1. General details
  2. Living with MS
  3. SupportandServiceProvision
  4. Information & Education
  5. Research
  6. Advocacy
  7. Strengthening Organisational Capacity
  8. Funding the Strategy
  9. Open questions around activities

General Details

(Main report pages 16 – 18)

680 people completed the survey. This is down on 2011 when 930 people completed the survey. As this survey was completed mainly online through Survey Monkey there may be a bias towards those familiar with technology or access to a computer. This bias was managed to some extent by allowing people the opportunity to fill in a paper version and have it entered into the system by support staff.

There were two primary observations in this section.

Over 40% of the respondents completing the survey lived in rural areas. This raises a question around accessibility to supports and services. This observation was validated to some extent later in the survey by responses from some respondents around services and ability to access them.

The second observation is around the high percentage of people (just under 40%) still working either full or part time. Later responses to questions demonstrate a need/ expectation for MS to advocate on behalf of people who still want to work but are restricted for various reasons. There is also a question raised by respondents around employer education.

Living with MS

(Main report pages 19 – 23)

Over 21% of respondents have lived with MS for 20 years or more. The Multiple Sclerosis Foundation states that MS is not a fatal disease and in fact MS patients have essentially the same life expectancy as the general population.

With regard to mobility over 58% stated they walked unaided.

Respondents were asked to rank the impact MS had on them across a number of areas. The top three areas worst impacted by MS either as moderate or severe were:

-Fatigue at 68.43%

-Finances at 52.83%

-Employment at 52.55%

Respondents were then asked to rank the top 10 services and then the 3 most important. The outcomes here were:

-Getting the Balance right

-Online information

-Written information

-Regional community worker

-Information days

-Symptom management

-Regional newsletter

-Information sheets and booklets

-Counselling

-Local branch meetings.

Advocacy and Research were two other themes that came through consistently across the report with respondent’s expectant that MSI play a strong lead role in both.

One final comment here would be to mention those in the workplace and a need for meetings and information sessions or other get-togethers to sometimes be held outside of working hours so that those in work can take an active part in MSI.

Support & Service Provision

(Main report pages 24 – 28)

This section continues the theme on core services identified under Living with MS. With hot topics being: changes around meeting and information session times, advocacy and lobbying. Other comments were around consistency between branches and increasing communication between MSI and HCP’s and other professional groups.

A question asked around usage of service would suggest that as people progress with MS they tend to use services less with only 18% of respondents using services more than 15 years However on the other side almost 1 in 2 use the services monthly.

The question on satisfaction levels for both MSI staff and volunteers scored highly at 79% and 72% respectively. However when responding to MSI’s capability to manage change this score dropped to 46.5% with 41.9% stating they don’t know. Is there a communication issue here? How does the executive and management team keep the organisation and members abreast of any changes affecting MS Ireland? Yet when asked about communication 74.2% responded positively to this question!

40.5% of respondents selected “don’t know” when asked about boards commitment and motivation. How ‘Public’ are the board in dealings with members or in attending events? How much information is communicated down to branches about the board?

Information & Education

(Main report pages 29 – 31)

This section takes four questions and looks at the information provided by MSI and preferred mediums of communication (email or hard copy). It also looks at the education and training services provided.

Information services are well received with the majority of respondents being satisfied with the level of and timeliness of information provided. Also on average 60% preferred to receive communications in soft copy although this figure may well be skewed by the fact that this survey was an online survey.

The question around education and training provision threw up an entirely different set of responses. Here there was a large swing away from the ‘Agree’ camp to ‘Don’t know’ with the response rate across the four questions ranging between 61% - 71%. This is a significant increase in uncertainty and whilst it doesn’t assume lack of training perhaps there is a question here around awareness/ communication with regard to education and training opportunities within MSI. This needs to be investigated more and addressed.

Research

(Main report pages 32 – 34)

Three questions were asked around research and whether it was something that MSI should be involved with and fund. As one would expect the overwhelming response with 85.6% was that MSI should be engaged in research with 65.6% feeling that MSI shares information on research well.

There was a wide range of categories that respondents felt MSI should be supporting however the two most popular were:

  1. Researching a cure and cause of MS (28%)
  2. Drug treatment and the use/ impact of drugs (22%)

Given that this question allowed respondents to enter a written response a wide variety of suggestions/ comments were made a large sample of which are captured in the main report.

Advocacy

(Main report pages 35 – 36)

When asked about advocacy respondents were almost unanimous (91%) that MSI should have an advocacy agenda. 69% went on to say that MSI is a good advocate for PWMS. However 23.6% did state that they were not aware of what MSI’s advocacy role was. Why is this – Is it breakdown in communication? A lack of awareness?

When asked about whether MSI is good at identifying the most relevant advocacy issues 33% don’t know with 11% disagreeing.

This percentage of unknowns again asks the question around MSI’s communication strategies and should be incorporated into any future work done on advocacy.

Respondents were again given the chance to enter a written response and as one would imagine almost every type of suggestion was given. The hot topics that appeared consistently were: Accessibility; Medical cards; Neurologists/ Nurses; Employment & entitlements and Finances. A fuller list is detailed in the main report.

Funding the Strategy

(Main report pages 37 – 42)

This section examines fundraising and use of funds at both an organisational and local level. It starts by asking the question “If MS Ireland received a windfall of €1m how should it invest this? A significant response was generated to this question with 455 respondents giving anything up to five suggestions. The top five that came through consistently were:

  1. Research
  2. Respite services outside of Bushy Park and lengthening hours
  3. Physiotherapy/ pain management/ occupational therapy classes
  4. Staffing levels across all areas. Also investment in training and equipment
  5. Advocacy

Other comments of interest which come up again later in the survey are around the timing of classes and meetings and the need to accommodate the PWMS who is still in the workplace.

When asked about MSI’s management of resources it is interesting to note that between 45% - 59% of respondents either didn’t know or disagreed that MSI manages resources including finances well. Whilst the majority of these were in the ‘Don’t know’ category it is still worthy of attention and action be taken to understand this more.

In terms of personal fundraising activities less than half of the respondents had run a fundraiser themselves. In a number of cases there was willingness and it would be beneficial to look at the detailed responses further and look at how this readily accessible target audience could be used to support fundraising activities.

Organisational Capacity & Structure

(Main report pages 43 – 44)

When asked how well MSI utilises its manpower both staff and volunteers only 44% & 45% of respondents agreed or strongly agreed that this was the case. The same number stated that they didn’t know in each case. These figures are concerning and a suggested action plan would be to try and establish the cause behind this ‘Don’t Know’ population to establish what corrective action needs to be taken.

When it came to media and public profile the figures improved with between 55% and 65% strongly agreeing or agreeing with these statements. There were still a significant number of don’t knows and again worth looking at as part of the bigger piece of analysis. Social media and Website scored 55% & 71% respectively.

Membership is the last piece looked at in this section and over 72% replied that they were members. Of those that didn’t some either stated they were staff or no answer was given. Of the 78 who followed up on the ‘no’ response with an explanation reasons such as: not enough money; still coming to terms; you don’t need to be a member as you can get the information anyway; were all common themes.

Some of the statements would suggest that there is lack of clarity with some around membership and again the area of membership and fees is worth exploring in terms of income and also the strength of the voice of MS in representing a significant number.

Closing Section

(Main report pages 45 – 47)

The final section of the report provided opportunity for written responses to the following three questions:

-What is MS Ireland not involved in that it should be?

-What is Ms Ireland involved in that it should no longer be?

-What other comments would you like to make.

At this stage in the survey the number of respondents had dropped significantly with over 45% skipping the first two written response questions and over 73% skipping the final question.

When asked about new areas MSI should be involved the majority of statements are repeats of what has gone before and in some cases may not be new per se but perhaps need more communication around them e.g. counselling; advocacy; training and support. A fuller list is included in the main report.

Only 52 people responded to the question about areas that MSI should no longer be engaged in. There were no major themes but again management should review the main points listed in the main report.

In closing the survey the last question asking for any other comments clearly shows that MSI is doing a very good job and is appreciated by those availing of the service. As with any organisation of this type there are some personal issues coming through and these can be seen in the main report and dealt with in whatever way needed. Some other comments made and would be reflected in earlier responses are:

-Better communication between branches/ branches and the national office and regions.

-Value of staff and volunteers

-Realism around priorities and focusing on the positive messages

Summary

This survey holds a significant amount of information and given the feedback under each of the sections it is clear that the voice of the people expects MS Ireland to continue with a strategic focus across all six strands. The message that is coming through whether clearly or subliminally is that advocacy and research are two keys areas. However, services and delivery are the core of what MS Ireland is about and should therefore not suffer. In fact there is opportunity to look at services and the population impacted and consider how these services can be rolled out to a wider audience, specifically those who work and those who live in rural areas.

Training and education are other key areas of focus that require attention. This may be as simple as more effective communication strategies around training delivered and availability of same. As stated earlier further investigation is needed.

The significant numbers of ‘don’t know’ responses throughout this survey, especially in the latter parts should be investigated further. Whilst no major issues arose around negative responses this is an opportunity to make sure that these don’t knows do not translate in disagree statements. Simple communication strategies may be sufficient here and should be incorporated as part of the development and launch of the new strategic plan.

Finally membership, an area worth looking at to clarify the reason for being a member and the benefits associated with membership. Or indeed is membership relevant? How does MSI garner a strong voice to enable it to be a strong advocate and lobby government?