Getting used to the new normal
Jennifer Pearl is an Expert by Experience for CQC, a member of TLAP’s National Co-production Advisory Group (NCAG), and lives with a spinal injury. For our day in the life series she talks about the impact the virus has had on her life – the positives and the negatives.
Like everyone I am getting used to a new normal. Eight years ago when I was first diagnosed with a spinal tumour I spent over six months in hospital and had numerous hospital admissions and rehab as my condition got worse. Then when I was stuck at home, I felt very alone and it took a long time to adjust. Part of that process was helped by some fantastic voluntary organisations such as the BackUp Trust and the Spinal Injuries Association (SIA).
Now with COVID, I don’t feel alone. Everyone is in the same boat. To start with I did feel miserable being stuck at home but again I’ve had great support from the SIA from the helpline. Charities such as Inclusion Barnet are now offering Zoom yoga for people with disabilities. I have started doing Zoom yoga. I spend a lot of time doing my daily exercises. My physiotherapist will be thrilled that I am completing the routine every day - unlike when I go out to work.
I have gone to the Zoom room at BackUp Trust for people with spinal cord injury. It is so good not to feel alone, and to have peer support. I’ve gone back to doing craft activities and started to paint at home.
Lockdown has meant I have had more time to spend as a trustee of Inclusion Barnet - I recently had my first experience of being on an interview panel using Zoom. I’d like to see more things like meetings online, that suits me as travelling isn’t so easy. The best Zoom recently was a coffee lounge for people with spinal injuries run by the BackUp Trust. They had surprise guests at the end – several new born lambs, alpacas and llamas on a farm.
Dealing with the challenges
My carers all have the correct PPE. I have a very hands-on agency that has made sure that all their clients and staff are all well cared for. I really appreciate this and know that others don’t have such good providers.
My usual pharmacy was not particularly helpful and couldn’t get hold of some of my medication. When I asked if they could bag up medication and hand it to my daughter at the door they refused. As a result of this very poor service, I contacted a different pharmacy and they got the medication I needed straight away and provided a delivery service. It is such a relief to have a decent pharmacy to hand. I will never set foot into the other pharmacy again.
I get great support from Barnet Clinical Commissioning Group about my care package - whether it’s advice about how to minimise risk to myself; suggestions about what I could do when I go to hospital appointments; addressing my fears of getting the virus; or simply explaining what to do if my husband was to get sick and I would need more support.
I am on the NCAG (National Coproduction Advisory Group). We have a fortnightly call with Helen Whately, Minister for Care. I am really proud to be part of the call to let Helen know what the issues are for people with lived experience of disability. On one call I was able to share what happened when my carer had to leave just after I had my shower, and before I was dressed. Her partner works for a care home and thought he had COVID-19. At that point carers were not able to access testing in the same way as NHS staff. I have really appreciated the support that the team at NCAG have provided since this all started.
It seems a million years ago at the end of February that I had my first experience in a rally car with hand controls with Spinal Track. I really look forward to being able to do some of my dare devil activities again.