Statement by Juliette Buttimore Clinical Lead Nurse– NF2 Midlands/East

My role is based within the NHS at Addenbrooke's Hospital in Cambridge, although I also provide outreach services and advice to those affected by NF2 who attend clinics in Birmingham, Leicester and Nottingham. Around half of my role concentrates on NF2 and the other half looks at people with sporadic tumours, cancers and other rare diseases that affect ENT systems (including people with NF1 and schwannomatosis).

The COVID19 pandemic has meant changes in the services that we provide and in the work that I do. During the peak, I was redeployed to support the inpatient tracheostomy nursing service. This team provide specialist care to people who have had an artificial airway inserted in the neck to help them breathe. This difficulty can be due to obstruction, trauma, breathing problems and fluid in the airways, so some people who were admitted had needed breathing assistance due to COVID19 but many others had needed help for other reasons. My clinical background prior to working in the NF2 post was in inpatient ENT so I have some experience in this area, but there have been a few changes in the last 10 years. The team were very kind and supportive with those of us temporarily joining them and we were quickly able to side-skill to assist them with their normal workload. 

We were still able to provide urgent support services to people with NF2 via email and telephone, and to continue or start treatment for those at highest risk of complications without it. We initially took a lot of calls as people were unsure which government advice would apply to them and what precautions to take, and it was very helpful to be able to continue to provide remote advice for people that I see. We also reviewed our entire caseload to identify potential problem areas so that we could address these preemptively.

Unfortunately, the pandemic has meant that almost all scans and clinic appointments have been postponed and we will now be looking to see how we can start up our routine services again for the coming months. It has also meant that I have been unable to travel to the Queen Elizabeth Hospital in Birmingham where I would normally provide face to face support to people with NF2 once or twice per month, and currently it is not clear when I will be able to resume this. I am very fortunate to have excellent support from Mel Murrell, Nerve Tumours specialist advisor based in Birmingham who also provides input into those with NF2 and we have been able to stay in close contact the last few weeks which has been invaluable. 

In terms of my day to day life, it has been an adjustment having a 5 and 7 year old at home rather than at school and we have certainly had some interesting experiences of home school! However, we've also been able to enjoy the beautiful weather and our garden, and I have finally learnt how to crochet and have just made my first blanket.

I'm very proud to say that I have been able to contribute to the NHS as a nurse during this crisis, and I encourage you to please continue to stay home when you can, wash your hands and follow the social distancing guidelines. I know that this has been incredibly challenging for people not just in terms of physical health but also their emotional and mental health, and that the financial challenges felt by many are and continue to be very difficult; and I have been so proud to see so many members of the public follow these guidelines so accurately under the circumstances. I very much hope that we are now starting to see the benefit of this hard work.