How our supporters will shape our future

Thank you to everyone who took part in our survey over the last two months. Over 1,200 people responded and provided us with incredibly valuable views and feedback.  

All of your responses are being used to develop Vision 2016 – our goals for the future – and they have helped to confirm the essential need for our support and continued awareness raising.

Survey in more detail

There is a lot of information that we got from the survey. Below is a summary of some of the key data and how it is influencing what we are doing as we look to the future.

Knowledge of meningitis

80% of people said they did not know about meningitis at all or very little before it touched them or their family – it shows we have so much still to do raising awareness of the signs and symptoms. And we have a lot that we are progressing in light of this including:

• Our iPhone app has been a huge success (with over 12,000 downloads so far) and we are looking to use other technologies to raise awareness of meningitis symptoms.

• We now have a partnership with St John Ambulance who trains over 800,000 people a year – everyone who attends their training sessions will get a symptoms card and we will be producing an education package for them to use. We are also working with the St John units at Universities to reach even more students.

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Finding the Meningitis Trust

64% of people who responded found the Trust through the internet or friends/family. Only 23% had found out about us from a health care professional (hospital staff, health visitor, GP).

Of those people who know about the Trust, less than 50% found out about us quickly, and for 1 in 5 people it was more than a year later. When you then consider that there are than many more people who do not even know that we are here for them today, reaching people quickly remains a key goal for us. 

We are therefore pursuing a number of activities to both reach more people and quickly. This includes:

• Increasing our digital activity including new forums, blogs and extending social media as we know this is a key way of reaching people.

• Development of our Partnerships Programme, working with other organisations who can sign post people to the unique range of support that the we provide.

• Asking volunteers to regularly visit their GP surgery to ensure they are both stocked with information about the Trust and the disease awareness, but also reminding surgery staff that we are here.

• A new national campaign which will launch in October highlighting the impact of meningitis, raising the profile of the Trust and encouraging people to come to us for support.

• A programme relating specifically for health professionals.

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Importance of support from the Trust

But just how important is it that people know about us – almost 100% of you thought it was important and over 80% of you said you would have loved the Trust to make contact with you proactively. We would love to be able to do this, and do where we can, but so often we do not know who you are and can not make contact – again another strong reason for us to have make sure Health Professionals / GP’s make tell people aware that we exist.

It is essential that we are led by what the needs of people affected by meningitis are. So your responses on our support, what you had used or why you had not used a service was really valuable.  Overall it seems we are providing the support that people want and this includes information (printed, via phone, on our website), the ability to participate in forums, social media, the ability to volunteer and involvement in fundraising – all of which you see as support that helps you to move forward. 

You said some incredible things about us:

• “I couldn’t have got through it without you”

• “I felt empowered to do something to fight back”

• “It helped me DO something and raise awareness, even though he had died”

• “The support has enabled us to start living again”

• “It was such a relief to finally speak to someone who totally understood what I was saying”

• “You helped my husband and I regain our mental health and saved our marriage”

These quotes motivate us to deliver on our vision of SUPPORT FOR LIFE knowing that support is as important as ever – and we are determined to ensure we are always here for you. 

Sadly, there were a small number of responses that showed we had not helped the way people hoped we would. It is key for us if someone is not happy with anything they need to let us know as more often than not, we can address right away. We strive to provide the best possible level of support we can and all feedback is greatly appreciated.

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How can we reach more people?

We had an unbelievable response when we asked you to let us know what your thoughts were on how we could reach more people. This was a free text response and over 300 of you took the time to put your thoughts down – thank you so much.

So what were the key things you said? There were two key themes.

By far the one suggested the most was to get health professionals to let people know the Trust is there for them. There are lots of things we are doing here including:

• Working with the Royal College of GP’s to see how we can best ensure that GP’s let their patients know about the Trust.
• We are part of the Network for Patients (alongside over 30 other charities) campaigning to get GP’s to refer people to relevant patient groups who provide support.
• Continued relationship development with hospitals.
• Articles in relevant publications/websites. 
• Promote what we do more,more; possibly advertising on TV etc – the challenge for us with this is money! We would love to advertise but the cost is prohibitive. Therefore, we take every opportunity to get free media coverage. Your willingness to share your own experience greatly helps us with this.

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What else do people need that the Trust could help with?

You made three key points here:

• The range of support we provide enables you to access what is appropriate for you.

• Knowing that you can access any of the support at anytime throughout your own personal journey after meningitis, and for as long as you need it, is very important.

• You want us to be a voice for all those affected where there are big issues that need addressing such as obtaining appropriate educational support for your children – this is now a key priority for the Trust.

You also let us know of some other organisations that you have accessed help from and that is helping to inform our Partnerships Programme.

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Your continued help

By responding to this survey, you are really helping us to ensure we continue to provide what people need and take action on the areas that will make the greatest difference for people affected by meningitis. 

But we need your continued help and there are so many ways you can do this including:

• Support our campaigns whenever you can – we will always let you know what we are doing and you will be able to help by signing petitions, spreading the word to your friends, family  and local communtiy. We are currently working on a campaign to get the appropriate and timely educational support for children – watch out for this in October/November.

• Ensure your GP surgery/local hospital is always stocked with our information and reminding the GP’s that they need to refer people to us – just contact your local Community Development Officer and let them know you can help in this way.

• Help us raise the £3million - we need each year to keep doing what we do and enabling us to reach more people. We have seen the demand for our financial grants double so far this year so far and we need to ensure make sure that we can meet the increasing demands on our life-enhancing support. There are so many ways you can help raise funds – have a look at the website or contact your local Community Development Officer.

• Continue to respond surveys, like this one, as they really do directly influence what we do and how we do it – we will always email you to ask you to take part or you will find information on our website. 

We cannot achieve our vision of SUPPORT FOR LIFE alone.  

By taking the time to respond to our survey, you are playing a vital part in the work and future of the Trust. Please help us to be there for others and provide support for life.

As the survey was anonymous, we sadly can not respond individually to those of you who used the survey to ask for more help, but please we would urge you to just give us a call (0800 028 18 28) or drop us an email and we can then come back to you – please know that you are not on your own.

Remember, we are always here for you whenever you need us.

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