My local Lymphoedema clinic referred me to a London hospital with a view to liposuction. It took almost a year for 1st appointment; then was booked to see another consultant & the surgeon in 9 months time from then.
Well, duly booked ‘Super Advance Off-Peak’ train return 3 months before appointment (to get cheapest price) only to receive a letter 3 weeks before appointment date cancelling it & giving me another appointment in 6 months time. That cost me £20 in cancellation fees by train company.
New appointment was (& I emphasise was) to be on 18 September. After the previous episode I phoned the appointments centre on 9 Sept to check status of appointment: “No problems, still live” they said - so I booked my return ticket & yesterday (15th) received a letter dated 10th cancelling & rebooking appointment to 15 January 2021 [letter was so important it was even sent 2nd class!] - another £20 down the drain in ticket cancellation fees.
Am starting to feel literally like tearing my hair out! Husband has said to wait until day of appointment before getting train ticket online but that could cost double the price of a ‘Super Advance’ (paid £60 return for tickets for 18th & £40 for first cancelled appointment) & could cross with post bringing yet another cancellation letter.
It’s all very well for patients living within the hospital’s normal catchment area (fare with Oyster Card is negligible & can’t be pre-booked) but I do feel that to receive less than 1 month’s notice when expensive tickets have to be purchased in advance really is just not good enough! 🥵
On verge of writing to CEO to complain - I am absolutely disgusted at being effectively put to the end of the clinic list yet again through no fault of my own - and being (so far) £40 out of pocket!
Hospital would have no qualms over marking me down as DNA (Did Not Attend) if I cancelled & then put me to the back of the list but why can’t they rearrange appointments sooner when a cancellation is their fault?
Rant over...
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Sheilamoose
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Oh dear, I do feel for you and hope it helped you feel a little better to be able to rant. I too have received very shoddy service from the NHS (which I always used to defend in the face of criticism) - and it definitely pre-dates Covid (although it's certainly exacerbating the problem). If you have the energy, do write to the CEO to complain. I cried down the phone to my oncologist and it did make a bit of a difference (even if I did feel silly!) Sending you a remote, encouraging hug!
Thanks for your commiserations - I think I might just jiggle MS Word into motion & start drafting a polite but strongly worded letter. Should be able to find who to write to from website.
The real niggles I have are: that I rang the appointments centre to check appointment was still on before booking my train tickets; the appointment was for tomorrow (18th), the letter was dated 11th, postmarked 14th, sent 2nd class & I was very lucky to receive it on 15th - have known 2nd class letters to take up to 5 days to arrive & could have been 'on my way to the hospital & turned up oblivious' when the letter dropped through my letterbox that same afternoon! I would really have exploded if that had happened lols.
The hospital has my landline & mobile numbers & email address - so why send a 2nd class letter for, what I regard as, a late cancellation? Department must have an ultra-inefficient Secretary/PA - what we (pre-metric) used to refer to as 'being a few dolly mixtures short of a quarter'; i.e. little, or no, common sense/brains!
Got to see my therapist next month. Not sure if referral to another (nearer) hospital is possible & still keep the London referral 'live' (to cover my options) in case my appointment is cancelled again? Have heard great reviews on surgeon nearer to me but no idea on his waiting list - has taken me 2 years & 2 cancellations to be seen once, over a year ago, at St George's (sorry, didn't intentionally mean to 'name & shame') 😁.
That's a coincidence: I used to get treated there (more oncology than lymphoedema) - it always felt like people cared but resources were waaay overstretched. Since I've moved to South East Kent I feel like things have got worse (but maybe things are generally just worsening over time) - especially stupid admin stuff such as the things you've mentioned that really mess you around but you're just expected to put up with. Good luck!
One major cause of problems is NHS has got rid of Secretaries, and in some areas out-sourced hospital appointments to one of 'those' mega-companies. They have no interest in patients, just ticking the box so they get paid for handling X amount of bookings. Best thing is to keep on slamming in complaints, with cc to MP and local CCG.
My MP is Thérèse Coffey, Secretary of State for Work and Pensions - maybe she (might) have a word with Matt Hancock, Secretary of State for Health and Social Care? Mind you, haven't seen any 'flying pigs' lately lol
Thanks - best laugh of day imaging the flying pigs!! As you say, there might be words said - but I have found one has to keep drip, dripping away - and eventually something hits the right spot. At least email is cheap!
Exactly - email is cheapest method of virtually instant communication known to man; just think how much money a hospital could save instead of £0.42 per 2nd class letter + paper & envelope!
Actually, if you factor in the time it takes a human to generate and print out a letter, then stuff it into the automatic envelope stuffer (expensive machinery), some companies cleverer than me have worked out it costs about £10 per letter!
A lot more than my estimate of around 50p! It makes me wonder why the CEO of each hospital group (less senior staff needed = significant savings) has not cottoned on to this frivolous waste of money; expand this unnecessary expenditure to include all appointments, discharge letters, screening results etc etc etc & it would amount to a huge saving.
After all, why did hospitals stop sending physical letters to GP surgeries & use email instead? - to save a lot of money!
Come on CEO’s, wake up & see £ signs in front of your eyes! Most hospitals have electronic booking-in now so if a patient can confirm an email address they only have to add a box saying “All correspondence will be via email unless you opt out”.
Every other company is doing it: gas, electric, phone etc - so why not the NHS?
You are almost completely right, except that in the clunky way the NHS goes about things - they haven't taken some things into account - see aftercancers.com/open-lette...
I'm sorry it's been so difficult for you. In the US doctors literally do nothing for us. My mother basically died because they put lasix in an IV and her organs started to shut down. She was so swelled from lymphedema that water poured from her skin.
It's inherited so I struggle trying to keep legs elevated. But I'm sure you know that struggle. We have insurance if we're elderly or disabled. But the insurance companies still decide if you will be treated. I know they have a pulse machine but it's really expensive. I know for some they can have surgery on the lymph nodes. They offered to my granddaughter but not me. I'm old .
That is appalling! My clinic at St George’s in London are doing telephone appointments.
However I received my garments, and they are not what I am used to.
The person who ordered them forgot to order the elasticated grip top. With the result the stockings are rolling down, and digging into my legs. The stockings are not the same as the ones I was used to. They are thin, and I feel will not last six months.
I called and told them. I was told they could order me one more pair of correctly fitting stockings. So in effect I would only have one pair of stockings which fitted properly. They admitted they didn’t order the stockings with the grips at the top. That isn’t my fault, yet I am being penalised. Not fair! It’s just so annoying! It is bad enough suffering with this condition, but not to be able to get the correct stockings through no fault of my own is frustrating beyond belief. Anybody else had this problem?
Only ‘fitting’ problem I’ve ever had was around 6 years ago with a Jobst gauntlet arm sleeve. Clinic could not believe it when they fitted one - elbow joint was halfway between wrist & elbow! After rolling around laughing they reordered through Juzo & hospital demanded a refund from Jobst (both sleeves were wrong but measurements supplied were correct).
Re St George’s - saw Professor Mortimer last time; got to see other consultant & surgeon, so don’t think that can be done via video link. Just feel so angry at getting so little notice of a cancelled appointment; if I lived within tube area of London it would not bother me as I would not lose £20 each time for cancellation of train tickets (there was every chance of a 2nd class letter posted Monday not turning up until after I had left at 08:30 on Friday - would have reached ‘boiling point’ if I’d arrived at St George’s & found appointment was cancelled!)
Agree it’s completely unacceptable - now 2 years from the referral. Saw the Prof almost exactly a year ago & he sent ‘urgent’ referral to surgeon. Two cancellations later... I’m sure computer system is putting me at back of list each time. I do not believe this can all be blamed on Covid-19
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Cautionary tale (consultant referrals)
Dismissed from work for capability issues
ME AGAIN, THE RETURN OF IT IS BACK AGAIN
Overwhelmed 
