Jan's amputation story: Little victories; lots of frustrations

Jans amputation story: Little victories; lots of frustrations

When 58-year-old nurse, Jan, went into hospital to have her colostomy reversed, she could never have imagined how much her life was about to change.

Jan had lived with the colostomy for a year after a bowel resection for diverticulitis and the reversal operation should have been the final stage towards recovery. She awoke after the surgery in excruciating pain and was given an epidural for pain relief. Over the next two days, her condition was allowed to deteriorate, developing into sepsis. She was treated with ineffective antibiotics and when she was finally taken back to the operating theatre, investigative surgery revealed a leak from her perforated bowel. Despite her continued post-operative deterioration, signs of sepsis and necrotising fasciitis were mistaken for post-surgical bruising and her ineffective antibiotic treatment regime continued.

A change of shift finally brought a nurse who had experience of nursing necrotising fasciitis. The nurse “smelled rotting flesh” and, recognising the signs, called the surgeon to review Jan’s condition. Jan was taken back to theatre for extensive debridement of her right flank, lower back and thigh. “It was huge,” says Jan, “like a shark bite,” and left deep scarring that she still finds upsetting whenever she looks in the mirror.

The infection raged on and Jan underwent multiple further debridement procedures. She became increasingly unwell with septic shock, ending up on the ITU suffering from multi-system organ failure, ischaemia, brachial thrombosis and extensive peripheral vascular compromise, causing gangrene in her hands and feet.

Jan has no recollection of these events throughout which she was semi-conscious from the strong pain medication. Jan’s first recollection is of waking up ten weeks after the original resection operation, completely unaware of her condition. “When I eventually came to, I remember looking at my hand. I couldn’t comprehend it at all.” She struggled to come to terms with the fact that she was potentially facing amputations. It was only months later, whilst sitting in a café with her daughter, that Jan asked to be told what had happened.

Jan was transferred to the Royal Free for the next stage of her treatment; “They did a skin graft on my thigh, removed my left hand and half my fingers [on the right hand], my toes on my left foot and half of my right foot. That was the most awful time for me, probably the worst time ever in my eleven months in hospital.”

Left in a closed room, isolated from the rest of the ward, with multiple recent amputations and the physical and emotional after-effects of her life-threatening illness, Jan received no counselling or psychological support. “I was very lonely. I was away from the nurses’ station and I was scared. I remember the physios trying to get me up walking. They took me down to the gym and I collapsed. I don’t think they believed how much pain I was in.”

The loss of the right leg came in stages. Initially, Jan had a mid-tarsal amputation leaving her with half a foot which never healed, despite five or six operations. 

“I was in so much pain from the sinus wound in the foot, especially when I had the dressings done. They gave me such strong painkillers that I was actually nodding off when I was eating. I remember the wound nurse from Hillingdon coming to see the wound on my foot and I said, ‘I’ve had enough. Let’s just take it off’. When I woke up after the below-knee amputation, it was fantastic. I didn’t have the pain. I was sore but I didn’t have the pain that I had before. When the physio came to see me and told me that he had come to help me with transferring to a wheelchair, I said, ‘What, like this?’ and I got up and did it. Little victories.”

Given her extensive disabilities, Jan understood that it was inevitable that she should lose her job as a nurse, but that didn’t make the news any easier to take. “I had been nursing since I was 17 and worked right up until the day before this all started. My manager and the HR came to see me while I was in hospital. That was very upsetting. I knew I wouldn’t be able to go back to work but when they actually came in to see me and told me…it was very upsetting.”

Going home was tough, bringing Jan face to face with the devastating impact that her sepsis, multiple amputations and consequent disability has had on her previously contented life.

“Three days before I came home the occupational therapist took me home [to see how she would cope]. I remember walking in there and looking at the pictures on the wall of our wedding two years earlier and bursting into tears.” Turning to her husband, Martin, Jan says; “Our relationship is very different. You’re still my husband but you are my carer.”

Ever-supportive, Martin, responds philosophically; “I’ve got another role as a carer and that takes precedence over all the other feelings. What’s happened has happened and we’ve just got to accept it.”

Martin was still working when Jan was discharged from hospital and in the absence of adequate provision for her safety and care, he did what he could to enable her to cope at home. “We had a big meeting towards the end of my time in hospital with the OT, the doctors and the physios,” recalls Jan, “They said I didn’t need a stair-lift. Apparently, you don’t need a stairlift if you can’t manage the stairs - you either have a room upstairs with everything in it or a commode downstairs.” Undeterred, Martin installed a stairlift before Jan came home. Without it, she wouldn’t have been able to cope. 

Martin also extended his daily routine to give him time to help Jan with her personal hygiene before he set off for work. Jan recalls; “I was given an ileostomy, which they tried to get me to manage. An ileostomy is not like a colostomy - it will work when it wants to work - so, all I remember about when I got home is being in the back bedroom, covered in pooh all around me, because it had leaked. Martin had to get up for work at half past two every morning, but he used to do me first before he went to work. Then the carer would come in later and it would be everywhere again. At first, they were giving me bed baths, but when I was able to move onto the commode, they would wheel me through into the bathroom and I would have to sit on the toilet to be washed. That was awful. I hated it. We had a bath but I couldn’t get into the bath. We had to fight with the council to have a walk-in shower put in.”

Given the almost complete loss of her hands and feet, Jan found the inadequacy of her NHS prosthetic provision, and the lack of compassion which accompanied it, particularly upsetting; “When we were at the Royal Free, the OT just handed me a catalogue of all the implements I could use without hands, and said, ‘All we will give you is cosmetic, you’ll get nothing else’. At Stanmore, the cosmetic arm they gave me fell off and the thing they gave me for my foot had a calliper on it. It was just awful.” Later, at the John Radcliffe, Oxford, she was offered a hook. “That was more of a hindrance than a help.” 

Jan and Martin are gradually adapting their lives and environment to meet Jan’s extensive needs. They have moved to a one-level home with a bigger bathroom and a walk-in shower, with further adaptations underway, but Jan has no intention of spending her days sitting waiting for Martin to come home.

 “At home I was very isolated. To begin with, I couldn’t drive, so I couldn’t go anywhere. I was housebound.” Jan is delighted that they have addressed the problem of her isolation with an adapted car which, at last, restores some of her independence. “I’m back driving, which is fantastic. My car’s been adapted. I use my left foot to drive with, so the accelerator is now on the left side. That took some getting used to. Martin can still use it because the left accelerator goes up and the right one comes down. It’s automatic and I have a ball on the steering wheel. I love driving, just my little dog, Molly, and me.”

For all Jan’s enthusiasm, Martin can’t help worrying; “I hate her driving. It’s good, but I still don’t like her driving.”

Having watched Jan’s struggles, it’s only natural that Martin worries, but Jan has learned to celebrate every little step towards her independence. Jan explains, “I would rather try and do things on my own, so I do, and he gets cross with me. I get very, very frustrated. We went out for a meal two weeks ago and I said to the waiter, ‘Would you ask the chef to cut my meat up for me please?’ The waiter asked whether that was all I wanted cut up, but I knew I could manage the rest. That was excellent.”

Little victories. Lots of frustrations. Little things we take for granted that Jan can no longer do.

“I still have tears, but the tears now are really frustration. It’s so hard. I was taking things out of the tumble dryer yesterday and trying to fold them up. I can just about manage to cook but I have to ask Martin to take things out of the oven for me. I can’t peel an apple…”

That’s no hardship,” Martin intervenes. He’s always happy to help.

“I know it’s no hardship to ask you,” says Jan, “but I’d rather do it myself.”

Jan would also rather do her own shopping; “I don’t like Martin going to do the shopping all the time. I like to go, but you’ve got to plan ahead all the time. I drive up to Tesco but it’s no good using my wheelchair because all I can do is put a basket on my lap and I can’t put much in there. So, I go in with my stick and ask for an electric wheelchair, but [when she last went] there were none left. So, I managed by pushing a trolley around. By the end of it they were very sweet. They could obviously see me struggling and they came over and offered me a staff member to push me around in a wheelchair and do my shopping with me, which was brilliant. When I went in again yesterday to do some shopping, they had got some new scooters.”

Jan approached Boyes Turner after her previous solicitors left it until a month before her limitation deadline expired to tell her they couldn’t pursue her claim. “I thought it was finished and I was broken hearted.” However, Boyes Turner were able to overcome these difficulties and obtained a substantial settlement for Jan, bringing to a satisfactory conclusion this highly complex and strongly contested claim.

With the legal case behind her and the security of knowing that she has financial provision for her needs now and in the future, we asked Jan to reflect on the claim; “The biggest relief is that it’s finished. There is no more fighting for anything. They still haven’t said, ‘Sorry, we made a mistake,’ but I suppose they don’t just write out a cheque without some acceptance that they were to blame.”

If you or a loved one have suffered or are expected to undergo amputation as a result of medical negligence and you would like to find out more about making a claim, contact us by email at claimsadvice@boyesturner.com.

The service was personal, professional and considered. I was treated so kindly and in the end I knew that not only had I found the right organisation but also the right person.

Boyes Turner client

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