"I feel very let down and unsupported"

I had my foot and lower limb amputated just below my knee in Sep 2023. After a period of recovery and healing of my wound I was finally able to get a fitting for prosthetic leg which was life line I had been waiting for after several surgeries and being bed bound.

As you can imagine, losing a limb is traumatic and it has been very hard to deal with. It has taken its toll on me physically and mentally to say the least. I am currently attending a psychiatrist to help me work through the PTSD from all the operations and trauma of this and coping with my new way of life.

Initially when leg was fitted I understood there would be tweaks and adjustments needed and was just grateful to get back on my feet. However each time I have had a new mould or adjustment it just doesn’t fit me properly. I am now on my third mould which has been made too big and three members of staff have agreed it is too big but I am no further forward in receiving a new one. This mould is by far the worst and most painful and I am now bed bound again and need to wear up to five pairs of socks to stop my knee slipping deeper into mould which causes extreme pain. I can appreciate that there will be an element of discomfort and pain especially after wearing for periods of time. I can accept that but what I am experiencing is excruciating and surely that isn’t acceptable and adequate to be left in this way. I can barely wear leg for even a couple of hours without being in agony. Every step is unbearable.

On my last few visits to WestMARC I feel I am a burden and do not feel welcomed because I am not happy with the mould and leg I have been provided. I do not feel it’s my fault that the mould does not fit and is too big, and I am not complaining for the sake of it, if it fitted and I had some quality of life then I would not be attending or complaining. I just feel disregarded and not heard. This is really affecting my mental health and I barely leave my bed as I just do not want to face trying to move around and struggling with leg on due to the pain.

The surgeon has also advised I may need more surgery to put more padding at the stump area which I could wait for up to a year to have carried out, surely I can’t be left like this for this length of time,  I also disagree that’s this is what is needed. I think it’s the prosthetic causing the issue and not my stump. No one seems to believe me or try again to get this right with another fitting. Even if I do require surgery, surely there is another solution in meantime to fit a mould that is supporting my knee and stump in the right places; but each time it’s not right so far.

I know life won’t be the same with having this disability but I do not believe I should be left in this predicament and left bed bound and popping painkillers constantly to cope with pain. Surely more can be done here. I just feel helpless and so depressed and don’t know where to turn. I feel very let down and unsupported.