Having been supported by The CATS Foundation through their own personal grief, Nikki Backus and Emma Murphy know the importance and power of such support. Both women want to give back to the charity through their patient engagement roles and help other families, drawing on their own lived experience
PEO series: meeting the beating hearts behind the rare brands
How new is the patient engagement role in your organisation, how has it evolved and what are your hopes for the role in the future?
Nikki The Family Support Officer role was created in 2014 when I came onboard for the new position. I’ve been in the role in varying degrees since then, but the role really evolved in early 2020 when the team expanded to include my colleague Emma. I think we make a great team and work well within the dynamics of the other charity personnel.
Emma We have had a family support officer for eight years now. I started my position in March 2020 to work alongside Nikki in the role. Since joining at the beginning of the pandemic we have started providing a lot more support online. Through coffee and chat sessions, Christmas events, awareness week and a remembrance event all via zoom. This works well as we are all very spread out across the UK. We hope to build a strong network of support for families not only virtually but through face-to-face meet ups again when covid allows. The group coffee and chats, and the one-to-one chats really help us to feed back personal experiences to help shape better care in the future for patients.
What does a typical week entail for you, and are there any specific projects you can tell us about?
Nikki Each week is a little different and changes with the needs of the charity and the families we support. Typically, though it will include:
Contact with families – checking in one to one or group activities such as our fortnightly CATS coffee chat zoom call.
Administrative tasks such as updating contact spreadsheets, creating services surveys and monitoring feedback, sending out news via emails.
Planning new projects for the upcoming months.
Working on ongoing tasks such as sending out birthday cards and gifts.
Working on upcoming/annual events such as the recent Remembrance day, Christmas zoom party and our awareness week. These events are so worthwhile as they engage the community and raise awareness, but they take an awful lot of planning and preparation in the background.
Emma In a typical week I will reach out to families individually to see if there is anything they need help with and to make sure things are okay. I spend time sourcing equipment that families may need that is tricky to get or not available on the NHS. We send out handmade cards to families to celebrate children's birthdays and to remember children that have passed away. I love this personal touch and enjoy making the cards. We have also been busy recently sending out care packages to families isolated by the pandemic and those who have been stuck in hospital with their children. I speak with the rest of the team a lot and we are constantly thinking of new ideas and ways of connecting with and supporting families.
What were your personal motivations to taking up a role in patient engagement?
Nikki The CATS Foundation supported my daughter Ruby who suffered from Sandhoff Disease. They were a lifeline for us and I wanted to give back to the charity and the wider community after Ruby passed away. I was honoured to take on the Family Support Officer role when approached by CATS.
Emma My son Stanley was diagnosed with Tay Sachs disease in 2014 and sadly passed away from the illness in June 2019 at just four years old. All I want to do now is support others going through similar heartache, help to improve experiences with my own firsthand experience and push forward in helping to find a cure for these awful diseases.
What makes the role of patient engagement officer important to your organisation?
Nikki The CATS Foundation does some extremely important work alongside professional bodies and organisations towards research and a future treatment for Tay-Sachs and Sandhoff Disease. It also strives to improve the patient experience within the medical community, but fundamentally the charity is all about family. We support families from diagnosis through the course of the disease with advice, a supportive shoulder, we connect families together providing a support system and help in many, many practical ways. All of this is coordinated with the help of the Family Support team.
Emma I believe the role is essential to every part of what we do; supporting and empowering caregivers and patients is at the root of everything we do.
In your role, how do you ensure the patient voice remains central?
Nikki We ask for feedback from our families to always strive to improve our services. We constantly try to offer more support, in different ways year on year.
Emma The charity is all about the patient and making their journey as easy and as comfortable as it can possibly be. Feeding back the patients’ needs and wants is key to moving forward and learning and growing.
How do you reconcile operational business needs with elevating the patient voice?
Nikki The patient voice is key and central to our efforts, while operational needs are essential to the smooth momentum of the charity, and they are executed around the support services.
Emma Since we are focused on the patients’ needs, the operational business needs has to fit in with reaching out to patients and gathering their thoughts and ideas on how things can be improved.
What are the most rewarding aspects of your role?
Nikki Knowing that I helped make a difference to a family affected by these diseases.
Emma I love to empower and encourage the patients and caregivers to use their voice and make sure they push to be the invaluable part of the medical team around them. Giving people that confidence to speak up is so rewarding.
What is your proudest moment in your career thus far?
Nikki Not just one, but many. Helping to organise the European conference, delivering the online Christmas party, creating a Remembrance video honouring our children who have passed…. helping families in honour of my daughter Ruby.
Emma I feel immensely proud to be a part of our incredible families lives every day. I am proud to be part of the rare disease community.
What advice would you give someone considering working in the rare disease space?
Nikki The Rare disease community needs warriors and while it can be challenging to make our voices heard the rewards are knowing that all our small steps forward will one day make a huge difference to the life of a child diagnosed with a rare disease.
Emma The whole rare disease community is full of such inspirational and proactive people, to be surrounded by such passion and positivity can only enhance your life. My advice would be to do it, you will not regret it.
If you weren’t Patient Engagement Officer of The CATS Foundation, what was Plan B? What did your 10-year-old self want to do as a job?
Nikki My 10-year-old self didn’t really have a plan! While I enjoyed my former IT career I can honestly say working with families at a time when they need support the most, understanding how they feel as it wasn’t that long ago that I was in their position, making a difference, no matter how small, is so much more rewarding.
Emma I have always wanted to help people since a young age. Before Stanley was diagnosed with Tay Sachs disease and became poorly I worked as a family support worker for Action For Children, which I feel helped to prepare me for this role in so many ways.