SO glad I went to the LSN conference last week, it was really interesting and good to hear others' experiences.
In particular, it made me realise that being patient for 7 weeks without hearing anything back from my consultant's referral to St George's probably was being too patient, so first thing this morning I rang them up to check that they had received the referral. Turns out they have no trace of it.
So today spent approx 90 minutes (mostly on hold) on multiple calls to the local consultant's secretary and the admin team at St George's and eventually have achieved that the referral letter has been emailed through today. So presumably I'm right at the start where I should have been 7 weeks ago, and IF the referral is accepted, I can expect an 18 week wait time for an appointment.
7 weeks wasted; and having read the referral letter again I'm very nervous about whether or not it will be accepted - the letter is based on an appointment that took place with someone else back in May, at a point when no-one had measured my leg to assess how much swelling I had (so there's nothing in the letter about that), nor does it make clear that I still have no idea whether I have primary or secondary lymphoedema.
So now wasted time = at least a year with GP trying to refer me to local clinic but not understanding the system so referring me to inappropriate service and not telling me about referral (so I wasn't aware should be chasing up); then 2 months wasted waiting for appropriate referral to St George's; then 7 weeks with referral 'lost in system'.
Am feeling very frustrated and even more upset. All the while my lymphoedema seems to be getting worse.
Moral of the story: I guess keep checking and chasing. Don't sit back being patient.
Fingers crossed it goes better this time around....
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DeborahS32
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Thanks Lynora. Yes. I'm now being seen by the community lymphoedema service, which is essentially an excellent and very experienced specialist nurse. She's fitted me with a flat knit pressure garment, which does seem to be helping (or at least, it's not getting any worse now). But she has no access to diagnostic tests and my frustration is around not knowing whether or not I have primary or secondary, and whether I'm at risk of it spreading to other limbs. In fact it was her who proposed the referral to St Georges, but she can't initiate that, so it had to go from her to my GP to the vascular consultant who'd signed me off from her service to St George's, an unhelpful chain which has resulted in a very thin referral letter, and inbuilt delays.
This sounds very familiar to me. Last year February 2017 I developed lymphoedema in my right leg, having had it for six years in my left leg. I asked the lymphoedema clinic to refer me to the consultant - nothing happened for six months. When i asked about it, it seemed the request never went or got lost. Another letter was sent from the clinic in August 2017. Again, I heard nothing. Finally in April this year I got an appointment. I think letters 'getting lost' is just another way of trying to cope with demand outstripping resources.
It is very frustrating. For the information of other patients reading this an NHS lymphoedema clinic can refer direct to St Georges. Your GP can't refer and you don't need to wait for a hospital consultant to refer, although they can. It's all on St Georges website under Lymphoedema Clinic
Unfortunately it seems to be slightly more complex than that - St George's website makes clear that, for people living outside their area they will only accept referrals from consultants.
My NHS lymphoedema clinic is a community nurse-led clinic for all those with non-cancer lymphoedema, and her understanding and mine was that she isn't able to make a referral herself - hence the rather pointless and circuitous route of (specialist and expert) clinic - GP (not clued up about lymphoedema hence long period of inappropriate treatment and referrals) - (non-lymphoedema) consultant - St George's.
Along the way the very detailed several page summary letter from the expert nurse has been condensed into a one paragraph not very informative consultant letter (that omits eg that we don't know whether or not mine is primary or secondary; that my affected leg is 60% larger than the unaffected leg, and all sorts of other to my mind important information).
Are we wrong in our understanding of whether my specialist nurse can refer direct? because that would be a much more meaningful referral.
In our area only people with lymphoedema post-cancer have a hospital-based service, and there are no diagnostics available to anyone so far as I'm aware.
The info states quite clearly that patients under the care of an NHS lymphoedema service can be referred directly. See the last sentence on Adult Referrals. I have done it several times from my clinic. Your best option regarding the comprehensive letter is to ask for a copy and send it in and ask them to attach it to your consultant letter.
Oh that's amazing! Thank you so much for this. I've had another look at the St George's website though, and the bit that we thought excluded my service referring is that it has to be NHS funded services. Mine is a service commissioned by the CCG - does that count as being NHS funded?
I have the letter from the specialist nurse, so could easily scan it and send it through with a request for it to be attached to the referral letter - will go ahead and do that immediately!
A great illustration of why this forum is SO valuable!
I have been referred to St Georges, and yes it was via a consultant from St Thomas' this is because I haven't had cancer, (a strange thing to say you may think) but the Southwark AHA are only accepting lymphedema patients for surgery (mine is a scrotal / lower abdominal beauty weighing about 4 stone and about the size of a large cantaloupe melon), so if like me you got into this situation by infection or blunt trauma, you are basically on the look out for a sympatric consultant.
Yes it makes no sense to me clinically to divide services like this - more like a money-saving exercise I guess. Mine's not cancer related either. Part of the reason I want the referral is to establish what caused it, as no clear trigger. Am anxiously waiting to hear at the moment.
Your's sounds absolutely ghastly, and appalling that you can't access proper treatment. I'm fortunate that so far mine is much less dramatic.
Mine is a sadly a similar story, there is no NHS lymphoedema service in Berkshire unless you have it secondary to cancer. After a couple of years of my GP telling me to go and 'live with it' when the swelling was relatively minor and only in my lower leg I finally paid a private GP to refer me privately to a vascular consultant who told me I had primary lymphoedema and told me to find someone who could provide MLD. Shortly after the diagnosis my lymphoedema deteriorated and now my whole leg and buttock are affected. I found a local MLD specialist on the internet and she did the measurements for my compression which my GP finally wrote a prescription for but there has been no support for the psychological trauma. We really need a group lobbying the NHS/government in England to get this changed. If I wasn't working I'd take up the challenge as its an unacceptable situation.
Oh that's appalling. Are you a member of LSN? They are doing some work lobbying as you suggest, but as a voluntary organisation they can only do what is within their capacity.
Apart from anything else, you need to be remeasured from time to time to see if the garment has improved things - mine was remeasured this week and as a result I'm getting a smaller stocking with a higher level of compression.
If you ever have the emotional energy to do it, I wonder if it's worth writing to your MP and your local CCG pointing out the injustice of this kind of arbitrary rationing of service which has no reference to clinical need.
To update this for anyone who's interested, I'm delighted to say that I now have an appointment at St George's. Not till January, but am very relieved to know I've got it. So - definitely worth all the hassle, and I just wish I had chased sooner, as if I had I'm sure I would have been seen several weeks earlier.
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No lymphoedema help from my gp
Any help with some good advice 
I am new to this.
Cancelled Appointments
