Sally Wemyss is a community staff nurse in our School Health team in Redbridge, she is a full-time carer to her daughter Sienna and has worked part time at NELFT for over 11 years. She has very kindly shared her story with us in hopes to highlight to other colleagues with carer responsibilities who might be struggling that help and support is available.

Sally’s story

In 2022, our previously healthy 14-year-old daughter Sienna was diagnosed with severe Myalgic Encephalomyelitis (ME) following a common virus. Myalgic Encephalomyelitis (M.E.) is a long-term (chronic), fluctuating, neurological disease that causes symptoms affecting many body systems, more commonly the nervous and immune systems. ME causes profound intolerance to exertion and significant disability. Research has demonstrated that the quality of life for those with ME is significantly impacted. 

Sienna’s health deteriorated rapidly. She went from a talented ballerina to being largely housebound within 18 months. Sienna was very academic and in the top class for every subject. Sadly, by 2023, school became impossible. Sienna missed Year 11 yet was so driven that she achieved excellent grades in every GCSE.

My husband and I became unpaid carers for our daughter. Sienna is unable to prepare meals and unable to dry or style her hair. She requires support with almost every activity of daily living. Sienna is unable to socialise and spends the vast majority of the day resting. The smallest of activities cause the most debilitating fatigue and post exertion malaise.

Juggling working and being a carer is a very tricky balancing act. It relies on careful planning as we have to ensure that Sienna is rarely left alone. My husband and I have little practical support as have no family near us and we do not receive any financial support. At work, I requested flexible working so that I could ensure that I was able to attend Sienna’s multiple health appointments and to her fluctuating health needs.

Outside of work, I have also joined Concerts for Carers. I have won tickets to several concerts which provided me with an opportunity to let my hair down and enjoy time with friends. This is vital for my own wellbeing.

My advice for other colleagues with carer responsibilities would be to be open about your situation to your management and team. You can do this without sharing specifics or personal information if you don’t want to. I have found that if those working around me have some understanding of my caring responsibilities, they are more understanding in the case of an emergency or if I need to change my working hours. I also try to be flexible where possible in order to demonstrate willingness to support the team and needs of the service.

I appreciate that I am lucky to be working in a role which is very flexible. I know that for many staff, such as those working on in-patient wards, it can be far more difficult to implement flexible working, but not always impossible, it is always a good idea to discuss with your manager if something can be done. I previously worked as a Uro-oncology clinical nurse specialist but had to leave that role due to my own deteriorating health. I applied for my current role specifically because of the availability of flexible working and I know there are other clinical roles at NELFT that also work well with flexible working.

I feel that my health needs and being a carer have impacted on my ability to consider applying for promotions. Additional responsibilities are likely to impact on my ability to juggle life as a working carer. However, I feel content knowing that I can still give a positive contribution to my team and continue to work in the role that I am passionate about. Although I do not personally feel I could manage a promoted role, I understand that each carer’s circumstances are different, it is worth discussing with the hiring manager if you see a promotion advertised as there can be creative ways to work flexibly that still meet service needs.

To find out more about ME, visit: What does M.E. feel like? | Action for ME

To donate to Sally’s JustGiving page, visit: Sally Wemyss is fundraising for Smile For ME (justgiving.com)