Behind the scenes of MRF Support

October 2020

Here at MRF, we are proud of the support we have been delivering for 30 years. It’s at the heart of what we do. Over three decades, we have listened to, helped and advocated for thousands of people, affected in so many ways by this awful disease.

I'm Cat Shehu, and I'm the Support & Membership Manager at MRF. One of the many reasons I adore my job is the wonderful people I meet and how, at times, often at their lowest point, we’re there to offer kind, consistent and knowledgeable support to people.

As time has progressed and we have added Live Chat, I thought it important to move away from being known as just a “helpline” - because we are so much more than that. I hope that, by showing you a typical day in our support service, it will bring our work to life.

9 am

I take the helpline on to my phone and check the voicemail messages that may have been left overnight. I have a message from someone with a vaccination query. We always endeavour to respond to messages as soon as possible, and always within 24 hours Monday-Friday. Our voicemail message is clear that if anyone is calling out of office hours about a medical emergency, they should contact the emergency services immediately.

I call back and offer advice to a concerned parent who has a child going to University this year. They are unsure if they had the Men ACWY vaccine in school. We discuss the vaccine and how to find this information out from the GP.

9:30 am

My next morning routine is to check the emails that come into the Helpline email overnight. While are support services are focussed in the UK, we do receive messages from all over the world, and the questions can be around a whole host of issues. In other countries, they may not have access to free medical care or no medical insurance, and this is something that causes huge anxiety for people who may be showing symptoms themselves or a family member. Today I have a message from a person in America who is concerned for their grandparent who is poorly and showing symptoms of meningitis. In this instance I am keen to advise that they need medical care quickly, and we work closely with CoMO (the Confederation of Meningitis Organisations) who have support service members around the world, I give the contact details of the local support service and advise to get medical help right away.

I also receive emails from Health Centres in Ireland and Scotland who would like some of our awareness literature to give to their patients. We send many thousands of our Baby Watch, Tot Watch, student posters, and signs and symptoms cards out every year. Many health professionals add them in a new baby pack, and we include them in the red book for new parents – we get lots of feedback saying how helpful people find these.

Click here to view resources available to order.

We also receive ‘Get In Touch’ enquiries that people can make from the website. Today, someone has got in contact to say they are struggling with the after-effects of viral meningitis, which they had in April. This is not uncommon, unfortunately, and I email back offering a phone call if they would prefer that, a kind word to say that they are not alone, and some information around viral meningitis that they may find helpful.

10:30 am

The helpline rings, and it is from someone concerned that while their child has recovered from Meningococcal meningitis, they just do not seem the same as before they were poorly. They are upset over the phone, and it’s important to give time and space for someone to talk through how they feel. I am always conscious that this may be the first time they have picked up the phone to speak with anyone.

I am a mother myself, and understand how heartbreaking it must be, not only for your child to be so poorly but for them to recover and you feel they are just not the same in personality or behaviour. We discuss the time spent in hospital, the recovery, and how we can help to support her and the family. I give practical advice around support available in secondary school, support available to both her and her child via wellbeing services and the GP, and send over some information about the diseases, recovery and aftereffects that is specifically for parents. This parent would like to talk again so we make a plan for me to call her in two weeks. This is now an ongoing support relationship and she advises that she feels less alone, and I am relieved that she picked up the phone today.

11:30 am

I make a planned call to one of my ongoing support service users. We have been calling this member for over two years as and when needed. Sometimes, they feel alone, and following bacterial meningitis three years ago they have had several hospital visits. So many people explain that they feel meningitis is misunderstood and because they may look well, their friends and family do not understand. That is one of the reasons our support is so vital, we do understand. We discuss how they are feeling, what has been going on in their lives and we talk about making a plan of nice things to do, new hobbies, and online courses that may help ease the loneliness. I also send over some information that they may find helpful to use when sitting down with the family to discuss hidden after-effects.

12:30 pm

I prepare the requested awareness packs, along with some from the previous day, and ensure they are posted.

2:00 pm

After lunch, someone makes contact via ‘Live Chat’ on our website in England who has been diagnosed with a brain injury following bacterial meningitis many years ago. They are happy that Live Chat is available as they are also partially deaf and the phone is not easy for them at times. They would like some advice around brain injury and support available. I advise that we provide a Befriending service that would match them with a befriender who has a similar experience.

I let them know that the Headway charity is a good source of information with local support groups. Before the chat ends, I make sure they know we are here if they need us, and they will think about the befriending service and make contact again.

The helpline rings from someone in Ireland requesting information about the MenB vaccine. I answer their questions and email over the MenB factsheet that we regularly send to people with this kind of enquiry.

3:00 pm

I take a call on the helpline from someone with a Fundraising query. I take their details and ask the fundraising team to make contact.

I also take a Live Chat from a person who lost their partner one year ago to Meningococcal meningitis. They are too upset to pick up the phone and they are struggling with the bereavement. This is a chance for this person to speak anonymously with someone who cares, and understands, who is not a family member. They have not recovered from how quickly their partner passed away, and they are still in shock. We talk about the stages of bereavement, practical ways in which to help them move forward, and provide signposting to specialist counselling and bereavement support available from the GP and bereavement charities. I also emphasise our support, which can absolutely carry on over live chat, or if they would prefer a phone call either now or in the future, we are here for them. These calls always make me think of what a cruel disease this is.

4:30 pm

I respond to a helpline email from a University campus wanting to talk about a virtual freshers’ fair, and I forward this on to the student fundraising team.

I also respond to emails from other members of the team, make sure that all of my notes are up to date, and lock away or shred any personal information before diverting the helpline back to the Helpline voicemail at 5:00 pm.

I hope this has given you an insight in to how we support the wonderful people that make contact with us. I feel very proud to able to do this, and be part of such a wonderful organisation playing our part in defeating meningitis.