This is Care Opinion [siteRegion]. Did you want Care Opinion [usersRegionBasedOnIP]?

"At this point I have zero trust in the entire service"

About: WestMARC (West of Scotland Mobility and Rehabilitation Centre)

(as a service user),

I had my first appt after my upper limb amputation earlier this year, and after my initial appt I saw OT every 2 weeks. Each OT appt ended with them saying they will get me back in a couple of weeks and get prosthetics to see me then as well. At each following appt with OT it was the same thing, no prosthetics and just the OT spouting the same line at the end.

After the 3rd or 4th time of expecting to see prosthetics and it not happening I eventually told them that they said them same things to me every time and it hadn't happened so far and I didn't believe what they said. 

I was emailed my next appt from the OT to confirm that I would definitely be seeing prosthetics at the next appt they had given me.

At this point I had no trust in the OT, having been let down so much but prosthetics were at the appt and I finally thought I was getting somewhere and when a mold was taken of my stump to make my test socket at that appt, I was told it should be around 2 or 3 weeks for the test socket to be ready and they would contact me once it was. 

After hearing nothing for 5 weeks, I got in touch and they told me to go in the next week. 

The day I arrived for the test socket fitting the prosthetist mentioned that the socket had only been made that same week before my appt. So had I not been in touch there is every chance I could still be waiting for that part to be done. 

Again, after this appt I was told they would be in touch with an appt and to my shock I got a call the next morning to make an appt to return to fit & collect my prosthetic in 3 weeks' time. I was literally counting down the days ready to start on this next part of my journey. How foolish was I? I had learned nothing from my experience with them to date. The day before my appt I had a call to say they were missing a part and canceling my appt and they had no idea when this part would arrive and to once again wait on them getting in touch with me. 

At this point I have zero trust in the entire service and decide to call each Friday for an update. The first week after the cancelation there was no update but this second week after I was told the part had arrived and an urgent message had been left for someone to call me on Monday as this was Friday afternoon, to give me an update. No surprise to know I didn't get a call about it.

I called again today as I am still waiting on someone to call me back and I am now being told that the part has not arrived. It's now 12 weeks since the mold was made to start making this prosthetic and I seriously have my doubts that I will even get a prosthetic at all. I would rather have nothing to do with them at this point and am making enquiries as to how and if my care can be transferred to the Edinburgh centre. 

Do you have a similar story to tell? Tell your story & make a difference ››

Responses

Response from Angela McLaren, Operational Service Manager, WestMARC, NHS GreaterGlasgow and Clyde 8 months ago
Angela McLaren
Operational Service Manager, WestMARC,
NHS GreaterGlasgow and Clyde
Submitted on 14/08/2023 at 13:23
Published on Care Opinion at 13:23


picture of Angela McLaren

Dear Foreverwaiting42, thank you for posting your comments and experiences on care opinion. I am sorry to read of your challenges in engaging with the service. In order to assist you, as your post is anonymous, I would like to invite you to contact me on 0300 790 0129 to discuss and allow me to see what I can do to support you as from the detail you have given, this is a less than acceptable situation.

Kind regards

Angela

  • {{helpful}} {{helpful == 1 ? "person thinks" : "people think"}} this response is helpful

Update posted by Foreverwaiting42 (a service user)

I have tried to call but this is just the general number and I wasn't able to get through. I can send my details if that would be an option?

Response from Angela McLaren, Operational Service Manager, WestMARC, NHS GreaterGlasgow and Clyde 8 months ago
Angela McLaren
Operational Service Manager, WestMARC,
NHS GreaterGlasgow and Clyde
Submitted on 16/08/2023 at 13:47
Published on Care Opinion at 13:47


picture of Angela McLaren

Dear Foreverwaiting 42, thank you for getting in touch. I am sorry you were unable to get through this morning, our telephone lines are very busy.

To ensure the security of your personal information, it would be advisable not to send details within this post as Care Opinion is a public website. You can contact me directly on 0141 201 2392 and I would be happy to speak to you in person.

Regards

Angela

  • {{helpful}} {{helpful == 1 ? "person thinks" : "people think"}} this response is helpful

Update posted by Foreverwaiting42 (a service user)

Hello,

I have been debating whether to respond to this as it seems futile at best, as despite contact numbers being provided and promises made, I still have not been able to get a call back from WestMARC.

I have left 2 messages on the number provided with my name, contact telephone number and the reason for my call. The first in August and again at the beginning of September, and have had no response to either. When I received the initial reply to my post I was grateful that someone was willing to hear how my experiences had left me feeling but at no point did it occur to me that it would turn into yet another negative interaction with WestMARC and add to the trauma of my ongoing debacle with the service.

Having my dominant hand amputated has been utterly devastating to every aspect of my life and from the moment I wake each day my challenges begin, and I struggle with everything from the most basic tasks of self-care, washing, dressing, preparing, and eating meals, a simple trip to the shops and the list goes on and is never-ending and doesn’t stop all day every day.

While I am aware a prosthesis will not eliminate the majority of my challenges, it is an important step for me in terms of my recovery from my amputation and moving on, it will also help me regain a small fraction of my independence which is something I am acutely keen to do.

I am sure most people are aware that any amputation will take its toll on mental health so when I initially started to attend WestMARC my mental health was fragile at best, each following appointment when I was expecting to see both OT and prosthetics which turned out to be only OT only chipped away a little more each time at the mental health I had left. Thereafter it would be the initial excitement at the next step due to happen coupled with the crushing devastation by it either not happening or delays to the timescales.

It has now been almost 3 ½ months since I had a mould taken to make my prosthetic while others in my amputee support group have had prosthetic legs made in a matter of weeks. I was informed in a call I received after a made a complaint that “it just takes longer to get upper limb parts”. I don’t feel that’s reasonable that upper limb amputees are forced to wait a much longer period for a prosthesis and if these parts take longer then why can WestMARC not have some in stock to alleviate the suffering that the waiting period causes?

As I said I have now been waiting almost 3 ½ months now for my prosthetic, I had an appointment last week to finally receive it. After the delays waiting on parts and the 6 weeks for a test socket to be made with no explanation as to why this took so long I was beyond excited to be finally able to start the next step in my recovery. I cannot put into words how I felt when trying on my prosthetic to find it was far too small and would not fit on my residual limb no matter how many adjustments were made in an attempt to get it to fit. That fragile mental health that had been chipped away at by WestMARC was shattered and has left me absolutely broken.

The whole process has to be started from the very beginning now, yet my return appointment for the whole new prosthetic to be made and collect is next week (I will believe it when I see it)

If they can make a whole new prosthetic for me in just 13 DAYS then explain why I waited 6 WEEKS alone just for a test socket? There is something far far wrong and needs looked at to spare someone else the trauma I have been put through.

Response from Joanne Hebenton, Physiotherapy Team Lead, WestMARC, NHS Greater Glasgow and Clyde 7 months ago
Joanne Hebenton
Physiotherapy Team Lead, WestMARC,
NHS Greater Glasgow and Clyde
Submitted on 07/09/2023 at 17:25
Published on Care Opinion on 08/09/2023 at 09:57


Dear Foreverwaiting42,

I am really sorry to read your response and would appreciate having the opportunity to arrange for a member of our prosthetic clinical team to discuss your WestMARC prosthetic experience with you.

I appreciate that you are further frustrated following no response to your messages. In order to ensure we can contact you as soon as possible, I am requesting you send your details to the WestMARC physiotherapy email address and I will ensure a member of the prosthetic clinical team contacts you directly - westmarc.physiotherapy@ggc.scot.nhs.uk

If you do not have access to email then call 0141 201 2639 (WestMARC Gym) and leave a message for me, to allow me to contact you.

Kind regards,

Joanne

  • {{helpful}} {{helpful == 1 ? "person thinks" : "people think"}} this response is helpful
Opinions
Next Response j
Previous Response k