Access to podiatry

[Flower]

Exasperated rant. Apologies.

I've got very high risk feet, right foot totally deformed with bone collapse and no ankle joint. I'm in a plaster cast, been in a cast for years as my bones won't grow to fuse my foot to my leg. My only surgical option is a below knee amputation which I've refused as I can manage on crutches and amputation increases chances of cardiac problems etc. My left foot is held together with metal and props me up.

Pre Covid I had excellent NHS podiatry every 8 weeks and that was such a safety net. For the last 3 years I've been paying for private podiatry every 7 weeks and had 2 NHS appts in the past 3 years. My last NHS appt was Nov 2022 and I was told I'd be seen in 3 months. Since then I've tried to ring for an appt & email without answer. I eventually got through earlier this week to be told there were no appts in the next 6 week block and to try again after that. I spoke to a really helpful person at Diabetes UK & was advised to contact my ICB. I hung on for 2 hours today but couldn't get through to PALS. I'm now discharged from orthopaedics unless I ask for a referral to discuss amputation although I can get a new plaster cast as and when I need.

My GP has previously referred me to the same clinic waiting list I'm already on. I feel like I'm going round in circles to get any help to check my circulation and neuropathy sensation loss whilst being terrified of ending up with an amputation because I can't get any help.My private podiatrist doesn't do Doppler scans or other tests. Any other ideas where I go next. I actually feel really down and scared about all this.

The guidelines taken from NICE for Charcot foot diabetes podiatry applies to me as my foot is totally deformed.

1.7.8People who have a foot deformity that may be the result of a previous Charcot arthropathy are at high risk of ulceration and should be cared for by the foot protection service. [2015]

Help!

 

[rebrascora]

Afraid I can't offer any advice but sending empathy and (((HUGS))) with what must be a very worrying and frustrating situation. @MikeyBikey is having similar issues with getting the care he needs to try to retain his remaining foot. It is quite shocking that there is no joined up system for treatment in such cases. Why don't they offer an online booking system for these services. Once you are in their system it surely wouldn't be difficult to allow you to make appointments instead of having to sit on the phone for hours only to be told there are no appointments left. I really feel for you and it must be especially challenging when your sight is also not good.

 

[Flower]

Thanks @rebrascora , I don't know where the podiatry clinics have gone, presumably people left during lockdown and maybe others have gone into private practice. It is really frightening, I'm trying my best to remain as well as possible but rearranged feet take so much excess pressure in the wrong places and the slightest skin damage can rapidly escalate.

I've just read @MikeyBikey posts and that is so upsetting to hear without any joined up care or multi disciplinary teams with such serious issues. I'm going to have to write to my MP when he gets back from Manchester.

 

[Leadinglights]

You may find that some private podiatrists do do doppler assessments, just not yours.
Worth looking on the internet for what services are offered.

 

[everydayupsanddowns]

So sorry to hear how your foot care has played out (and gone missing!) since the pandemic @Flower

Have you spoken to the Diabetes UK helpline? I wonder if the Advocacy Team may be able to help.

Hope you get a good response from your MP.

 

[MikeyBikey]

Hello! My DG @rebrascora has flagged this up to me. I will reply tomorrow (together with an update on my personal situation) as I am absolutely shattered having been awake since 1:30 this morning - the first eight hours with severe phantom pain. This is something I knew nothing about and was not in the information sheets they gave me as I waited for the surgery! More tomorrow as my eyes are drooping...

 

[AJLang]

Hello @Flower I've been thinking of you. I'm sorry that I haven't got much help or advice. Good luck with getting the help that you need. Lots of love xxx

 

[MikeyBikey]

Hi... I will try to reply later today. After my exhausting Thursday I went back to breakfast to get a text that a surprise visitor was on their way. Que wash, dress and a frantic bit of tidying. We had not seen each other for six months and in the interim they had lost their mother, their father and their younger brother (all unrelated deaths). Then in the evening I got a call from another friend who is giving the ruin around by his local opthalmology department!

 

[soupdragon]

Sorry to hear that @Flower
Podiatry seems a real postcode lottery. I was recently at an appointment (6 months of compression stockings whilst in hospital did some interesting things to my toenails!).
On the wall of the waiting room was a very clear flowchart for diabetes footcare for low, medium and high risk diabetic patients. I remember seeing that high risk patients were seen very regularly. I think it might have been every 4 weeks or more when needed. I was thinking of you as I looked at it. Nearly took a photo, decided I'd do it next time but after the appointment have now been discharged.
Face to face appointments in my area restarted quite quickly during the pandemic.
I hope you get the support you need and deserve soon.