The Meningitis Trust

Since writing the testimonial below, Sue Davie has led a merger of The Meningitis Trust and Meningitis UK. They merged together stronger as Meningitis Now in October 2013, and Ali Stewart & Co completed some further work to merge the two cultures quicker. They would not have been in a position to merge without doing the vital work below. Watch this space for further developments and a new case study.


The Meningitis Trust is the only charity in the UK focussed on supporting people affected by meningitis. Celebrating its 25th anniversary in 2011, the Trust supports over 20,000 people a year through its professional services and community based support – helping people to rebuild their lives after meningitis strikes.

The Trust has a team of nearly 50 staff, 1/3 of whom are based in the community throughout the UK. We work with a network of over 100 counsellors, and art, play and music therapists to ensure people get the help they need, when and where they need it. Our commitment is “support for life” as the impact of meningitis lasts a lifetime. Sadly another 300 families are left every year facing a future without a loved one. Thousands more are left facing a life changed forever, as meningitis has resulted in after-effects including limb loss, deafness, brain damage, epilepsy, learning difficulties and memory loss.

To provide this unique support, the team at the Trust has to raise nearly £3m a year in voluntary donations as we do not get any Government funding.

People are at the centre of all aspects of our work – externally and internally.

What was the need?

In 2007/8, I was appointed as a new Chief Executive. The organisation undertook a major strategic review. The Trust was looking at significant change in its market place, some of which had already occurred, some of which was yet to occur, but the impact was going to be significant. Key factors in this were:

    • With vaccines now introduced for all but one of the primary causes of bacterial meningitis, complacency was increasing across the general public, meaning it was only going to get harder to raise funds
    • Competition in the charity sector was increasing
    • The need for support for people affected was still clear (both due to the nature of the impact of meningitis and the continued cases, even if lower)
    • The organisation’s profile was low and the demand for its support services had changed very little over time
    • The Trust had always been “lucky” with its income staying at reasonably consistent levels, but this was noticeably starting to drop
    • The Trust had to learn to achieve more with less, whilst wanting to reach more people to support them.

As a support organisation, the Meningitis Trust was very people centered, but mostly externally. Under the previous CEO, the internal people aspects of the organisation had not been a focus and this resulted in staff turnover of 20% plus (and with recruitment being expensive and very challenging in a rural community, this was a huge issue); absenteeism and sickness were high, and training was ad hoc, with those who shouted loudest getting the most. Teams were not encouraged to work together and individuals believed it was up to their manager to develop them.

It was clear we needed to find a way to:

  • Enable the organisation to survive – ensuring people are not left to suffer in silence after meningitis
  • Enable the organisation to “grow” in its ability to deliver its vision in an increasingly challenging environment
  • Improve effectiveness of the organisation – enabling more to be done with the same or less, with strong team working
  • Provide an environment where personal development is encouraged and achieved, and instigate effective succession planning

What other solutions were considered?

I met with two other companies who put forward relatively traditional training programmes, but I did not really connect with them. I felt they were training programmes rather than development programme – that it would end up on the shelf, rather than fundamentally change how we work and have an ongoing personal development impact throughout the organisation.

What was the reason for choosing us?

I immediately connected with Ali and the programme she proposed with Insights, Liberating Leadership and Pioneering Professional. It felt appropriate right across the organisation. I have been involved in many leadership, personal development, training programmes in my career – most of did not fundamentally change how people work. This programme felt as if it would be transformational under Ali’s direction.

What has changed/improved since you did this?

The impact of the programme is significant, exceeding initial aspirations, and strengthening the organisation considerably:

    • Staff turnover halved
    • Absenteeism rates cut by 1/3
    • Retention at all time high with 92% of staff having over 12 months service, compared with 79% three years ago
    • Recruitment expenditure dropped from £30k in year before programme to £7k in the last year
    • PR coverage increased by 60% and the Communications Team won CIPR West of England Pride Award in late 2009 for Outstanding in-house PR team
    • Our supporters nominated us and we won a Local Heroes Award
    • Our core services are supporting 20% more people than before without any increase in cost
    • We have established a major donor programme due to increased confidence and knowledge-base in the organisation

Specific examples of how performance has changed:

  • Trust runner up for 2 national “Best Employer” awards in 2010, Institute of Fundraising Annual Awards and Third Sector Annual Awards; nominations for both initiated by staff, for the first time.
  • IIP Audit 2010, exceptional, very positive comments from the assessor who randomly picked 25% of staff to speak to.
  • Comments from staff in Me PLC reviews, consistently positive
  • Poor performance quickly identified and appropriately managed, has primarily resulted in improved performance rather than disciplinary procedures.
  • “Training” no longer seen as simply going on a course – staff now use other approaches to aide their development including on-the-job training, shadowing, coaching, talking to peers and other organisations.

We have been told by staff the difference that it’s made:

  • “Thank you for making my time at the Trust such a wonderful learning experience. The Insights training has been absolutely incredible ….the impact on my life has been huge, and I would like you to pass on my thanks to the Trustees for allowing this to happen.”
  • “Over the past twelve months I feel that my skills and expertise within the Trust have ignited. I have thoroughly enjoyed the past year taking on new challenges and getting involved with various projects.”

What would your advice be to an organisation in a similar position?

Go for it! It is worth the investment in staff time and money. It is incredibly cost effective (particularly important for a charity). You need to see it as a journey which is ongoing. During that journey you need to sit back occasionally and reflect to see what has been achieved and ensure the development continues. It is essential that it “lives” from the top and you need to ensure those that naturally take it on board are supported as ambassadors for it, with clear recognition of how they have changed for the good and how they are influencing others as well.



men now

“Ali is fantastic and inspires you to want to keep moving forward. As a somewhat reluctant CEO, this programme has personally enabled me to develop confidence I did not know I had and made me a better leader for the Trust – and that is largely down to Ali and how effectively she supports you through the programme as well as delivers it.”Sue Davie, 23rd June 2011