Karen’s story: life after limb loss
Our office volunteer, Karen, writes about her experiences of undergoing an amputation five years ago and the challenges she has faced as a wheelchair user living in Northumberland.
Issues with my left leg began in 1988 when my knee was injured during an accident. It required two operations before I was fit again.
Some years later, however, I fell down the stairs at home and broke the same knee badly and had to undergo further surgery. Unfortunately, I had a reaction to the metalwork in my knee, which led to an infection. After another fall and a broken leg which took months to sort out, my leg finally gave way and in May 2019, on medical advice, my leg was amputated. I was given no psychological preparation before the surgery; it was treated like any other operation.
I was discharged after seven days despite not feeling ready. It felt very daunting to be on my own. Unfortunately, I had post-surgery complications, however, I had support from carers visiting four times a day, which was a great help.
I have experienced all sorts of challenges since my amputation, both physical and psychological. My amputation has affected my mental health, going from being a happy person pre-amputation to then feeling ground down. My GP offered me counselling, however, the support on offer felt like I was simply answering questions being asked from a form, rather than being an open conversation, which I felt wasn’t what I needed. Having made my own enquiries, I then received six weeks of telephone counselling support through the Bridge Project. I made further enquiries of my own and discovered Talking Matters. I had to wait 19 months to receive support from them, which helped a little, but just scratched at the surface of my feelings.
Most amputees suffer from phantom pains in the amputated limb. However, my biggest issue is that I have been left with severe sciatic nerve pain. Despite seeing physiotherapists, my sciatic pain persists five years on. It wears me down and I often feel that no one is listening to me.
I feel that people in my position would benefit from receiving better support, both physically and psychologically, at the time of amputation so they can be better prepared for what they might face in the years to come, given realistic information about what pain they might experience and being informed of what mental health support is available for them. It can be harder to seek help at the point at which you actually need it.
Whilst I was in hospital, my housing association landlord carried out some planned works to my home, replacing the kitchen and bathroom. However, despite informing them of my recent amputation, no changes were made with the ongoing works to accommodate my new needs. As a result, I struggle with the height of my kitchen cupboards, having to stand up on my one leg, to put crockery away, often leading to me stumbling.
I was offered some basic equipment through my Occupational Therapist, such as a commode, a chair to sit in and my wheelchair, but some of the items offered weren’t of great use, e.g. a stool for transferring from my wheelchair to my shower that I would fall off. Although I have a ramp at my front door for access, there are steps at my back door, meaning I’m unable to hang my washing out, put rubbish in my bins or even sit in my back garden. I always thought that support would automatically be offered to people in my situation, but it feels like even if the support is out there, you have to go and look for it yourself.
Finding reliable support at home has been very challenging. Social services carer support couldn’t meet my needs and was going to cost me more money in the long run, so I have had to seek private support. I now have a carer that visits three times a week, however, when she is off sick or on holiday, there is no replacement carer.
Getting out of the house to visit places of interest is not easy. I don’t feel confident at all using public transport with my wheelchair on my own, so I rely on using wheelchair-accessible taxis, which can be very expensive when living in a village within such a large, rural county. Even accessing my nearest town means a £20 taxi fare. Once there, there are only a couple of buildings I can access, which makes me feel like a second-class citizen. Many shops and businesses still aren’t wheelchair accessible, and this frustrates me to the core. A local pharmacy displays a ‘Disability Friendly’ sticker, however, when I was unable to get in through their main entrance, my carer went inside to ask where the wheelchair accessible entrance was and was told that there wasn’t one.
I feel that society doesn’t fully appreciate the difficulties faced by people who are disabled. It’s not just the getting there that is the problem, it’s then being able to access buildings, negotiate tight spaces or find pathways suitable for my wheelchair. It can be very frustrating and isolating. I am lucky, because I can go online and check which organisations have adequate access for wheelchair users, whereas some people aren’t able to do that. I feel strongly that wheelchair users should be able to access any premises where able-bodied people can.
Following my amputation, I decided I wanted to do something positive with my life. I saw an advert on Facebook from Community Action Northumberland which was advertising its Bridge Project scheme to support people to get back into work or to get into volunteering. They put me in touch with Healthwatch Northumberland, which was looking for a volunteer to assist in the office. Unfortunately, the arrival of Covid meant that I couldn’t start my volunteering work until a couple of years later. However, I have now been volunteering with them for over two years, attending the office twice a week – Healthwatch Northumberland covers my taxi transport costs to get me there and back.
Many years ago, I spent six years working as a Nursing Auxiliary, so I already had some experience of NHS services. I also had some experience of working with the Blood Transfusion Service as a temporary administration officer. On a personal level, I have experience of social care. I believe that it is very important for people to be able to have their say about their experiences of health and social care services, so Healthwatch Northumberland is a good fit.
Volunteering has been a godsend for me. The Healthwatch Northumberland team have made me realise the importance of getting out and about and have helped me with challenges I’ve faced. I have gone from feeling very isolated, having no one to support me or to communicate with, to now being able to see my colleagues in the office twice a week. This helps me a lot. They have given me back some confidence and the strength to carry on with life, for which I am very thankful to them.
