Had a toe amputated in the last couple of years?

[Secudus]

The granulox link is great, what a product. Why isn't it in general use eh? Something so effective should be the first port of call.

Ali

Hi Ali

I tried my utmost to see if I could have that, to no avail, the Inadine, Iodoflex juggling was also a waste of time, the only way I could get a change of dressing was to show them a montage of images I had taken showing how the slough had basically crept over the open wound and stopped healing any healing.

The Vascular nurses rarely took any photo's and when they did they never brought them out to compare what difference if any had happened - My argument was that no one can rely on memory when assessing chronic wounds without photo imaging being used...

Hence why I always take photo's myself, as below, this I used to get back on NPWT after they stopped using it for one week only, the Consultant asked me why they couldn't get images like mine, as a consequence he put me back on NPWT again for a week.



But it was stopped after 3 days when they looked at an X-Ray they had had for nearly a month, ( Amazes me that a digital X-Ray goes straight into the system and is available to see straight away, but still took them over a month to look at it! ) had shown the tip of the metatarsal had now got infected and would to have another 15 - 20mm taken off, which would put me back to square one again!!!

It was nearly a another 3 weeks before I was admitted, the first date was cancelled at 2.30 the day before and the cancellation note is sent straight to the admittance ward, or what ever they call it.

But when I rang them at 3.00 I was told to arrive at 7.30 the next day?

So the next morning my sister dropped me off and left and I was told to sit down and wait to be seen.

About half an hour later I got up and went to the reception to ask if they had forgot me, as the three people who were there before had all been dealt with by then.

It was then they said it had been cancelled and they would give me another date in the next few days and was I able to get home OK!

Oh yeah, my sister was now 20 miles away and had to get her kids to school, before she could return, and now I had to get my dressing changed as it was 3 days old...

I got home at 12.30...

 

[Secudus]

This first image shows the progression of the slough again after the second operation to remove the infected metatarsal, you can visibly see how it covered the wound face.
Why it wasn't surgically removed when they had the chance is beyond me as this was classed as it was before, as light slough and would cause no problem, Inadine and Iodoflex was used again and did diddily swat...



This is how good NPWT is at promoting fast healing, the photo's show how the wound visible shrunk in 4 days after basically stalling again after the last NPWT was stopped as I had to have the metatarsal chopped...



I've just recently been taken off the PICO VAC again because they can't afford to keep me on it, but my argument is if they had put me on it after the first Operation on the 19th November 2014 and had kept it on and given me antibiotics until Christmas it would have healed and I would be back at work now without doubt...

But they don't put into the equation how much it's cost in all the dressing changes I've had and the antibiotics, both oral and drip fed because of secondary infection due to the length of wound closure and the extra two week visits I had to stay in because of it...

6 week PICO VAC
3.5 days on 3.5 off
3 PICO Kits £120 each
£360 Total

False economy?

 

[Ali H]

You poor, poor soul. That looks just awful, awful in the sense of sore as well as disabling and everything in between. It isn't funny is it. I have nurses swanning around the English countryside here from all 4 corners of the globe, one doing dressings, one doing phlebotomy, another doing INRs on Dad and another ringing with results, week in, week out and often 2 or 3 times a week. How is the current system either cost effective, safe for the patient and providing continuity of care? Add in the dressings debacle, often they don't have what they need let alone cutting edge stuff and you have a huge waste of money. So where are you at now? You have had a toe removed.....

Ali

 

[Secudus]

My toe was removed on the 19th November 2014

If the NHS had Post-Op used a combination of antibiotics and the PICO VAC from the start, I think I would have been able to return to my business just after the New Year festivities.

Take into consideration what one IODOFLEX dressing costs, £27.00 for one package, somewhere around 40x40mm in size, once opened it must be used, the majority of time it was put on the initial size of the first wound to stop slough, only 25% was actually used leaving 75% wasted, Inadine was also used alot also wasted, it wasn't until I kicked up about neither had worked it was changed to Aquacel Ag Ribbon (2cm x 45cm x 5 £28.99 ) which actually worked a hell of a lot better that the other two!

Again, why carry on with the Inadene & Iodoflex that costs £30 and what you don't use is wasted, when you can reuse the Aquacel Ag Ribbon with no waste and it bloody works?

Surely a no brainer?

They have the medication and the NPWT that will get these wound sorted quickly, but they'd rather carry on with stuff that doesn't cut the mustard and lose's them money and patient loss of work and ill heath and risk of infection and limb loss...

Don't forget I had a tiny little ulcer on my little toe that they played with for two years, God only knows what with the cost of the dressings, the clinicians, doctors, podiatrists X-Rays, scans and still couldn't heal it...

Haven't got the older photo's here with me but this photo is back in January 2014, when it started a year before it was a little smaller than here, but not by much.

 

[Ali H]

Just outrageous, no way should that have rampaged out of control as it did. I am beginning to despair.

Ali

 

[rockwidow]

Hi I am so sorry to read of your expereances it is traumatic enough undergoing an amputation without feeling that things are not porogressing.
Work as an NHS podiatrist in a foot clinic and we dont routinely use NPWT on what we term chronic wounds I.e.a wound over 6 weeks old as it does not work as well as on a new surgical wound so here it is routine to use VAC immediately aftrr surgery to get thing moving. Unfortunatley many hospitals have only a few VACS and patients often have to wait which is so frustrating. I totally agree re the inadine/iodoflex if it aint working then why not try something else its usual to say if it hasnt I proved within 4weeks then try something else.
I really hope things get sorted for you

 

[Solestar]

Hi Stu

What an interesting story and unfortunately, I have a similar tale. Skip to the chase and over a 2 year period I had the 4th and 5th toes and the 5th metatarsals amputated on both feet. 2 years of various wound dressings, IV and oral antibiotics, some administered through a PICC line and Tazocin landing me in hospital for nearly 2 weeks as it was killing off all my white blood cells and Vacuum Assisted Closures. Some of the amputations may not have been avoidable but some was as a result of cost saving exercises on behalf of the NHS, such as refusing to order an MRI scan when I was insistent that there was still remaining infection in my foot!

I've recently been diagnosed with PAD and the doctors are talking about putting in a stent near my groin. Do I have faith in their competence? Sadly, not a lot! Although interventional radiology is looking quite promising to aid in diabetes wound healing. http://www.dailymail.co.uk/health/article-2897643/Diabetics-amputation-aren-t-like-Britain.html

 

[rockwidow]

Multi disciplinary foot teams should before widely available not saying they stop every amputation but having the right team in place and getting access to the best interventions certainly helps

 

[Ali H]

Solestar Dad has PAD he can't wear compression hosiery any more.

Ali

 

[LauraMac]

Hi Ali

I tried my utmost to see if I could have that, to no avail, the Inadine, Iodoflex juggling was also a waste of time, the only way I could get a change of dressing was to show them a montage of images I had taken showing how the slough had basically crept over the open wound and stopped healing any healing.

The Vascular nurses rarely took any photo's and when they did they never brought them out to compare what difference if any had happened - My argument was that no one can rely on memory when assessing chronic wounds without photo imaging being used...

Hence why I always take photo's myself, as below, this I used to get back on NPWT after they stopped using it for one week only, the Consultant asked me why they couldn't get images like mine, as a consequence he put me back on NPWT again for a week.

View attachment 13169

Sadly, I think all these experiences of NHS 'foot care' are fairly typical. I have had one toe amputated and am currently awaiting major orthopaedic surgery on my foot and ankle - with great trepidation! I am in constant pain.
I currently spend £80 per month to obtain the dressings and tape I need, mainly from Amazon, occasionally on Ebay. I am no longer in employment, due to mobility issues, so this is quite a struggle. My husband is in work but we get no state benefits, apart from Child Benefit. Last year, we had to sacrifice a family summer holiday, in order to fund my regular wound dressings. That made me feel so bad.My NHS podiatrist is perfectly nice. He is honest. He simply says, "Sorry, this is what you need. I cannot fund it, can you afford to?" So, having paid taxes all my life and worked hard, I now grub around for nearly £1000 per annum to spend on basic wound care and stop my foot rotting away. We shop at Aldi, Lidl and charity shops, car boots etc etc. It is soul destroying.
The NHS no longer takes care of you. You have to fight, fight, fight all the way and to keep meticulous records of your own.

But it was stopped after 3 days when they looked at an X-Ray they had had for nearly a month, ( Amazes me that a digital X-Ray goes straight into the system and is available to see straight away, but still took them over a month to look at it! ) had shown the tip of the metatarsal had now got infected and would to have another 15 - 20mm taken off, which would put me back to square one again!!!

It was nearly a another 3 weeks before I was admitted, the first date was cancelled at 2.30 the day before and the cancellation note is sent straight to the admittance ward, or what ever they call it.

But when I rang them at 3.00 I was told to arrive at 7.30 the next day?

So the next morning my sister dropped me off and left and I was told to sit down and wait to be seen.

About half an hour later I got up and went to the reception to ask if they had forgot me, as the three people who were there before had all been dealt with by then.

It was then they said it had been cancelled and they would give me another date in the next few days and was I able to get home OK!

Oh yeah, my sister was now 20 miles away and had to get her kids to school, before she could return, and now I had to get my dressing changed as it was 3 days old...

I got home at 12.30...

Solestar Dad has PAD he can't wear compression hosiery any more.

Ali

 

[Ali H]

Having to spend your own money on dressings and tapes is ludicrous. No way would I be doing that. I would be insisting my GP place them on prescription and getting them for free under my exemption. I am deeply saddened to be reading these stories, it really isn't funny at all. You poor souls. xx

Ali

 

[rockwidow]

It is really concerning that people are having to buy their own dressings as far as I am concerned that is totally unacceptable granted some treatments might not be available with NHS funding as it is but dressings should be prescribed

 

[Secudus]

Just outrageous, no way should that have rampaged out of control as it did. I am beginning to despair.

Ali

Ali.

The GP was to blame, instead of passing me on to the Diabetic Nurse to deal with it, he should have referred me straight to the community podiatrist, instead of having to put up with a number of surgery nurse's that were not qualified to treat diabetic foot ulcers.

It was very nearly 4 months before being referred to my local community podiatrist and by then it was classed as chronic!

Another 4 months passed with no visible reduction, which led me having to ask my GP for a referral to a Vascular Consultant, which because of the NHS 8 -12 weeks waiting time, I asked to see one privately and did so 2 weeks on, by the end of the month I had an appointment with the local hospitals Diabetic Specialist Podiatrist and then another appointment with the Multi disciplinary foot team 2 weeks after that.

What really p#ssed me off was having to ask for a referral and having to pay or wait another 2 - 3 months...

To anyone who is unfortunate to have an ulcer develop, do not allow yourself to be treated by your GP, or the practice nurses, you ask to see a podiatrist, not next week or next month, but straight away!!

Every podiatrist I've spoken with have told me the horror stories of treatment given to diabetics with foot/leg ulcer's by their community nurses, treating diabetic foot ulcers the same way as they would simple cuts and think of Podiatrist's as little more than nail cutters!

Having over 29 months of dressings applied by both Nurse's & Podiatrist's I would go with the latter every time!

What hope does anyone have if the inmates don't get on with each other!

Stu.

 

[Winnie53]

Stu, thank you for taking the time to share your experiences and pictures with us. These stories need to be told, heard, and addressed.

 

[masonbason63]

Stu, I really do feel for you, foot care is so important, I'm lucky enough with good NHS podiatary card every 2 months and I also pay £20 a visit every 2 months for private podiatrist so I'm seeing someone every month.
The NHS one will give me a couple of days worth of dressings if I ever need them and s letter to GP so that's brilliant and the private one will give me s bundle of dressings as well and a letter so I'm very very fortunate.

I know a lot of people can't afford private but I don't smoke or drink so it's my luxury, and I really had to to fight to get nhs foot care.

I'm absolutely paranoid about getting foot problems so I'm glad I've got good support in place.

Your photos are a good warning as to what can go wrong so easily I do feel for you and wish you the best,

 

[Ali H]

What a terrible time you have had. We have a private chiropodist too and she keeps an eye on things thankfully.

Ali