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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

To not understand why I have to self fund this operation :(

43 replies

OhForFrigSake · 12/09/2017 13:28

I had cancer 8 years ago and had lymph nodes removed to check it hadn't spread. Been in remission since but have developed lymphodema (a condition where my legs and feet swell). I try and manage the condition myself with compression garments (prescribed by NHS), antidepressants (for the psychological impact), exercise and weekly massage (self funded at £50 per week).

The impact this condition has had on my life is massive. I can't do many of the things I enjoy with my young children, like enjoy warm weather or holidays, wear nice shoes or anything where my legs are showing.

Psychologically it is very difficult to manage - last week I basically had to wear trainers to a family wedding and felt very embarrassed. Everyone was asking me about my footwear which meant I spent most of the day relieving the cancer treatment rather than enjoying the wedding. I didn't really want to go. It even affects my sex life as I just feel awful all the time and though it doesn't bother my lovely husband it is all I can think about. I have two pairs of shoes I can fit into and it will only ever get worse. I'm 34 and just not looking forward to getting older and worse as it's virtually guaranteed to. I honestly feel like my life is over.

In the long term it could cost the NHS thousands if I start to develop the infections that are common with this condition.

There is an operation that can be done to minimise and in some cases virtually 'cure' this condition but currently isn't offered on the NHS in England, privately it costs £16000. Trials in Wales have been fantastic and have been extended. There's no plans as far as I know to offer this under the NHS.

I just can't understand why patients undergoing a mastectomy for breast cancer are (rightly!) offered remedial plastic surgery as part of their treatment yet I've basically been given socks and told to get on with it even though it affects every aspect of my life.

Please be kind, this is a genuine AIBU - I don't understand! I'm not trying to be controversial, just trying to understand why this is happening (or not happening which might be more accurate).

OP posts:
Onlyonce · 12/09/2017 13:34

No advice but just wanted to offer sympathy as I have primary lymphoedema and am also in my 30s. It's awful. I'm so glad it hasn't been a warm summer where I live. I dread having to cope with a heat wave to be honest. I didn't know there was an operation available but I couldn't afford it either

5rivers7hills · 12/09/2017 13:35

Sounds super crap.

Is taking out a personal loan for the operation an option?

Stuffofawesome · 12/09/2017 13:36

Is manual lymphatic drainage any help? This www.reflexologylymphdrainage.co.uk is currently being researched and looks promising. Hope you get the help you need

araiwa · 12/09/2017 13:38

Nhs cant cover everything, all the time, everywhere sadly

The trials show they are trying to do something but unfortunately these things take time and money. Something people and the nhs are short of unfortunately

Yanbu

Anymajordude · 12/09/2017 13:38

You have my utmost sympathy. It must be very uncomfortable and distressing. My Dad had it in one leg after an op to remove a melanoma. I absolutely agree with you about the funding issue.

MaidOfStars · 12/09/2017 13:41

My Mum had some kind of procedure done after lymph node removal for breast cancer. I don't think it was surgical though.

Have you accurately conveyed to your clinical team the psychological stress this is causing you?

YorkieDorkie · 12/09/2017 13:41

Aw OP I you didn't think anyone would be unkind to you. You're 34 and feel like your life is over. That must be thoroughly shit. I have nothing useful to add but you have my complete understanding - your recovery should of course be available on the NHS. Is this something you could work towards paying for yourself? Your health and happiness is more important.

Original poster
OhForFrigSake · 12/09/2017 13:44

Hello all and thanks for being so understanding and lovely.

awesome I already have lymphatic drainage massage weekly which is great but a temporary fix.

maid my GP knows but I wouldn't know how to escalate beyond that level. I don't really have imvolvement with a clinical team anymore beyond yearly colposcopies.

OP posts:
ladystarkers · 12/09/2017 13:49

That sounds horrible. I agree you shouldn't have to fund it. Can you afford it?

Twistmeandturnme · 12/09/2017 13:50

I think that you are probably referring to lymphaticovenular anastomosis ? I'm not up to speed but I understand that for lower body lymphoedema it isn't as effective as for upper body and there needs to be multiple anastomoses..thereby increasing the risk of venous complications later. My understanding is that it would not be offered if massage and pressure were limiting the swelling, as it's considered a last resort. There seem to be some new publications about this year: maybe they are moving forward with the treatment and making it more mainstream? I know there's a clinical trial ongoing in Japan. Have you discussed this with your consultant: did they give a reason why it isn't suitable for you at this stage, r just that it isn't available full stop?

Original poster
OhForFrigSake · 12/09/2017 13:50

I will of course do everything I can possibly do to self fund if that is indeed the only option (looks it!) but it just somehow feels unfair and will be a real big stretch for us financially. I get that the NHS hasn't got infinite resources but I personally know several people this year who have had plastic surgery on the NHS (breast augmentation and gastic bypass). I know they both will have had extremely good reasons for these treatments otherwise they wouldn't have accessed funding but I can't help drawing parallels with my own situation, and that of other people with lymphodema and wondering why we're not being listened to.

OP posts:
Twistmeandturnme · 12/09/2017 13:51

cross posted: have you asked your GP to refer you? It isn't something a GP can advise on really.

alpinetweed · 12/09/2017 13:52

I know it isn't why you posted but how rude that people kept going on about your footwear! Flowers

SunnySkiesSleepsintheMorning · 12/09/2017 13:52

Do you have a consultant who manages this condition? Would they support you to put in an individual funding request? Flowers for you

SunnySkiesSleepsintheMorning · 12/09/2017 13:53

If you're in England; www.england.nhs.uk/commissioning/wp-content/uploads/sites/12/2015/06/individl-fund-reqts-info-pats.pdf

Oly5 · 12/09/2017 13:54

Can you ask the cancer team at your hospital if they think they might be able to access the op via an individual funding request? It's unlikely to get granted but you could try. Sadly, the NHS can't find everything and people will always think their issue is more pressing. For example, obesity costs the NHS millions so gastric bypass is often seen as cost effective.
Good luck, hope you manage to fund the op

Original poster
OhForFrigSake · 12/09/2017 13:55

Hi twist I've contacted the Oxford Lymphodema Clinic and read their website and source materials - as far as I am aware LVA is more effective for clients with secondary lymphodema (caused by surgery or injury etc) and has a high incidence of success for clients in the earlier stages of the treatment where the lymphatic vessels have not been too badly damaged by the condition. They even carry it out as a preventative treatment. According to the clinic I would be a great candidate (consultation etc notwithstanding) - there's just the small matter of £16000 to overcome! It's a private clinic and they don't accept NHS patients Sad

OP posts:
JemandScout · 12/09/2017 13:55

Yanbu. That's shit. I don't mean to sound crass but have you looked into crowd funding? The operation sounds essential.

Original poster
OhForFrigSake · 12/09/2017 13:58

alpine I suspect people were expecting to say I'd twisted my ankle or something. Everyone is always surprised to find out I've had cancer (and a few not-so-close family members often forget I've had it). It was 8 years ago so people expect it to be 'done and dusted' now, they can't understand that for me I'm still going through it on a daily basis.

OP posts:
Original poster
OhForFrigSake · 12/09/2017 13:59

Jem I wouldn't know where to start and I just don't know if I could ask other people to fund something like that for me. It's such a lot of money and there are lots of very worthy causes out there.

OP posts:
Original poster
OhForFrigSake · 12/09/2017 14:01

sunnyskies no, there's a very poor lymphodema service in my area. It seems like it's a bit of a 'forgotten' condition.

OP posts:
mindutopia · 12/09/2017 14:01

Since you mention trials going on in Wales, I suspect that unfortunately the answer to your question is that there is still some uncertainty about the effectiveness and cost effectiveness of the procedure and that's why it's not included under the NHS at the moment. It's not that you aren't deserving, but just that there are very standard procedures that any treatment as to go through to receive approval for NHS commissioning. It sounds like this is a somewhat new ish treatment and the NHS is currently trialling it to consider how it might implement it. For some reason, oddly, often these things happen in Scotland and Wales before they happen via NHS England, so your mention of the trial in Wales makes me think that's probably the case. It doesn't mean it won't be covered one day, but it's just a process to get to that point. That doesn't mean it doesn't suck for you though and I'm sorry you're having to go through this. I think the suggestions to consider crowdfunding and taking out a loan might be viable if you think it's possible.

becotide · 12/09/2017 14:03

Would it be outrageous to move to Wales?

Original poster
OhForFrigSake · 12/09/2017 14:04

mindutopia I completely agree with you. It sounds like from what I've read that the trial has been so successful that they've extended it further but no word yet on when (or if!) it'll be extended to the rest of the UK. I just don't know if I have the time to wait on an uncertain outcome. I did ask the Oxford clinic if they provided finance but apparently not as it's too much!

OP posts:
wheredoesallthetimego · 12/09/2017 14:04

So, you need to put in an individual funding request. You don't do this - your consultant does. It's the mechanism by which CCGs decide whether to fund surgeries/drug treatments that are so rarely needed that they can't be expected to have a policy on them, and it sounds like this falls into that category as surgery for lymphoedema is uncommon. If you have lymphatic drainage massage weekly then you are presumably under an NHS lymphoedema clinic, it would be the consultant from that clinic who would put in the request - s/he needs to identify a place that would do the surgery and then put in a request for the funding, outlining (this bit is crucial) why you are exceptional and there won't be 100 other people behind you also wanting it.

e.g. I am a lymphoedema consultant in the NHS, I treat 1000 patients a year and in the last ten years I have only seen one other person who would have benefited from this surgery.

please don't ask your GP to fill in the IFR, it isn't their job and they won't have the knowledge

if you aren't currently under an NHS lymphoedema service then you need to get referred to one and ask them to do the IFR.

If there is good evidence for this then there is every chance you can get it funded. if the evidence is patchy, you won't. I sit on our local IFR panel - we go to great efforts to make sure we thoroughly review the evidence and make a fair decision.