Karen has a T7 complete injury and has spent two years in bed because of a recurring pressure ulcer that dates back more than a decade.
“It’s at the top of my leg, It’s right on the crease of the leg so it’s very hard to dress. Back in 2007, when it first appeared, I had it debrided successfully, was in a spinal unit for one month and in four months it had healed. There is some scar tissue, so I’ve always been aware of the risk of a recurrence and extra careful as a result.
“I’ve trained my partner of 28 years, and my support workers, to look out for red marks. And if we’re in any doubt, we’ll contact the District Nurse. It was a support worker who spotted a red mark in the same location. I started bed rest straight away and two days later the DN confirmed a grade 1 pressure ulcer.
“I knew bed rest was the best solution, but I was still getting up for showering and bowel management. If I’m honest, I wasn’t ready to give up on that level of independence and I thought that at least by limiting my time in the chair, that should be enough to let it heal.
“But it wasn’t healing this time as well as it had before. I’m 58 now, am going through the menopause, and I’m very conscious of the adverse effects ageing and hormonal changes have had on my skin’s ability to heal. Hot flushes make it harder to keep cool, which can be detrimental to skin integrity. I’ve also put on weight – the triple whammy of the menopause, enforced bed rest and a need to eat to keep my protein intake up to aid healing – which makes me even more conscious of the importance of relieving pressure.
“District Nurses treat the wound, dressing and medicating as needed. We’ve tried most things. From Medihoney to Aquacel Ag to VAC (vacuum-assisted closure). But it still wouldn’t heal and became infected. This time last year, I had an outpatient appointment with the consultant at Southport Spinal Centre. I was stretchered there in an ambulance and they discovered it was 5cm deep and tracking below the surface of the skin. Diagnosed a grade 4 pressure ulcer.
“I’m now on the waiting list for surgery, which has unfortunately been delayed further by Covid-19 and confusion around which spinal centre I should be under (Southport or Oswestry – I live in North Wales). Surgery will mean a three-month stay in hospital and a 90% chance of healing. I made the decision to stop my usual showering and bowel routine so that I wasn’t having to mobilise and add extra pressure.
“I’ve already invested in a profiling bed, and because I find it hard to turn myself in bed, with the support of DN, the local health authority provided me with a Talley mattress and a ToTo lateral turning system (which sits under the mattress and turns me from side to side). It’s helped a lot with pressure relief, and it’s given me back a bit of the independence and control I had to relinquish.
“In terms of advice, with regards to prevention: stay vigilant, train family members, support workers, PAs in what to look for. Ask them to use a camera so you can see any marks and improvement for yourself, make sure you get involved in the treatment as you’ll feel more empowered. Encourage the same healthcare professional to take measurements (wherever possible) as consistency is crucial, both for monitoring purposes and for your peace of mind. Take bed rest as soon as you spot a red mark and stay there until it’s gone. Whilst on bedrest remember there is a possibility of DVT and consider wearing support socks. I take vitamin D because I need to supplement the lack of sunshine I’m getting on my skin, and vitamin C to help with the healing process. It’s really important to think about your wheelchair cushion and have regular pressure mapping updates to make sure it’s right for you as your posture changes over time.
“And try to keep yourself busy – it’s all about distraction! I was made redundant from my role as an Equalities Advisor for a local authority. But I volunteer for organisations who need assistance, updating policies and advising on access issues which keeps my mind active and my knowledge up to date. I’ve also taken up embroidery – for the first time since leaving school! And I’ve been crocheting and selling toys. It’s incredibly difficult and frustrating to be stuck in bed when you feel well in yourself. Looking after your mental health is as vital as getting the physical, medical care and advice you need for your pressure ulcer to heal.”