Problems getting medical secretary to type and send referral to Lymphoedema clinic for compression stockings..

[eleanorshutie]

I'm feeling rather stressed, after being newly diagnosed and waiting to see vascular surgeon on 20th to discuss test results fully. My GP completed the referral to Lymphoedema clinic last Friday, for measuring for compression garments, but the medical secretary says she is short staffed and not sure when she will do it. Very frustrating, not sure what else to do or say. My GP surgery measured me for below knee stockings but they caused a lot of pain and additional swelling above my knee plus I had three large rings where the material gathered that was like a tourniquet. Any advice please would be very grateful? Thanks x

[Hidden]

Hello Eleanor,

I know my GP would just fax or email a referral over but I appreciate that I am very lucky.

I am so sorry that everything seems to be against you and I think you are justified to feel upset by it all.

Can you drop your GP a letter marked " urgent " and request that your referral can be expedited do you think ? I might be inclined to address it to the duty GP of the day for tomorrow.

Once you get to clinic I'm sure you will feel hugely relieved that your care is now being taken seriously.

At your appt you will get a package including skin care and the chance to learn simple lymphatic drainage as well as your compression hose.

Wishing you all the best. x

[eleanorshutie in reply to Hidden]

Thanks Wendy, I will ring them again tomorrow, I rang them on Monday too. Hopefully I will have some luck. xx

[Hidden in reply to eleanorshutie]

If you ring can you speak to a Dr ? Does yr Surgery offer telephone consultations ? Ours offers the latter but doesn't guarantee what time of day you'll get a call back though unless it's an emergency of course when you'd get an appt.

I am just concerned that the message goes directly to a medical member of staff rather than an admin or manager and that's why I suggested

an old fashioned letter.

You know yr surgery though and I don't .

[eleanorshutie in reply to Hidden]

I can try that, that's what I did last Friday when I spoke to Dr Tangri. I will ring them and ask them to put it on my medical records that I have rang and what will happen if I don't receive the compression garments soon. Unfortunately I don't think my GPs know very much about Lymphoedema. Or the consequence of late treatment. Thank you for your support, very much appreciated x

[Hidden in reply to eleanorshutie]

Hi Eleanor,

Hope all goes well for you today. I only know what would work best at my surgery hence my old fashioned letter idea marked " urgent for today ".

I always get a response on the same day and you leave a paper trail too that way.

You could, of course ask for an urgent appointment to discuss. That alone would galvanise my Practice into action.

x

[eleanorshutie in reply to Hidden]

She's now done it and in the post. Just rang her, what a relief. Thanks Eleanor x

[veriterc in reply to Hidden]

Isn't it appalling that the Dept. Health is too hung up on being 'popular' to raise NI contributions so that NHS can afford to have enough Secretaries. Hospitals all over London have now made secretaries redundant, so when this happens I phone the CCG - if that doesn't work I get on to my MP. But we shouldn't have this stress on top of what we have already. Best of luck.

[Hidden in reply to veriterc]

Huge cuts to NHS admin budgets have been going on for the last 7 years.

Consequently medical and nursing staff are having to work even harder and have more patients presenting at clinics feeling angry and stressed at the delays.

Staff are very stressed by this too as we all know.

[veriterc in reply to Hidden]

I just wish more of us patients would have a go at their MPs, and say the NI contribution to NHS have got to be increased. UK has probably lowest rate in Europe - hence we are at bottom of survival stats. Friends in Europe have no problems with amount they pay for healthcare, and look how much better is theirs! But we live in a strange world - we buy designer handbags at £1,000 and mobile phones at £500 a year, yet won't pay another £1 a week for better healthcare!!

[veriterc in reply to veriterc]

just wish more of us patients would have a go at their MPs, and say the NI contribution to NHS have got to be increased. UK has probably lowest rate in Europe - hence we are at bottom of survival stats. Friends in Europe have no problems with amount they pay for healthcare, and look how much better is theirs! But we live in a strange world - we buy designer handbags at £1,000 and mobile phones at £500 a year, yet won't pay another £1 a week for better healthcare!!

Reply Like (0)

[eleanorshutie in reply to veriterc]

Yes I agree would make a difference...

[Carolpa in reply to veriterc]

Trouble is, no matter how much we pay health care wont improve. Money is wasted and dished out to all and scumbags at the expense of our health.

[veriterc in reply to Carolpa]

I would love to know what is the deal between hospitals (especially A & E) and phara companies. Every time I visit these I am inundated with packets of pills, most of which are totally useless, and they all have to go in w.p.b. I looked up on Internet last time and it worked out at over £700. I complained, but still no satisfactory explanation.

[eleanorshutie in reply to Hidden]

Yes I know real shame x

[eleanorshutie in reply to veriterc]

She's now done it and in the post, what a relief xx

[ofcourse]

Well Id be a bit less peaceful about it.

I would say that if your legs get worse because you can't go without the compression then the practice will be responsible.

I would also explain that lymphedema can cause split and weeping skin and for which again the practice would be responsible,

This can be said firmly and not aggressively . They have a duty to deal with your stockings expeditiously and I would have thought that putting the referral aside due to 'busyness' is misconduct. Good Luck

Ofcourse

[eleanorshutie in reply to ofcourse]

Thanks I will ring them in the morning, hopefully after telling them what you said I will have a better response. Thank you. x

[eleanorshutie in reply to ofcourse]

It is in the post, rang earlier, such a relief x

[MARILYNFJ]

Try putting body lotion on your legs before you put on the hose. That may help with the rings that felt like a tourniquet. You can put the lotion on right after you shower and it will make the stockings go on more smoothly and quickly.

[eleanorshutie in reply to MARILYNFJ]

Thanks Marilyn I tried doing that too, didn't help xx

[Lynora in reply to eleanorshutie]

It’s not recommended to apply cream or lotion just before donning garments - some of the ingredients react with the textile, and also, if the legs are still damp, it can induce folliculitis.

[eleanorshutie in reply to Lynora]

Thanks for your advice, will hopefully get advice and compression garments soon,Referral is now in the post x

[Broomie]

I definitely agree with of course. Be forceful but not aggresive. I've had a similar situation and ended up in tears, trying to explain urgency, asked to speakto practice manager who was apparently very busy but i said it's ok I'll wait and used the time to bring up an online article to show her. This combined with me in tears in waiting room made her listen and act very quickly upon what was needed.this way i didn't waste gp time either. Hope you get it sorted today. Xx

[eleanorshutie in reply to Broomie]

Thanks Brownie, I was extremely upset last Friday, when I spoke to gp on the phone. We shouldn't have to go through this. x

[CCT67]

Hi Ellie, As the others have said, be persistent! Usually referral letters take 1-2 weeks to be sent by the GP at my practice. Hopefully it's about the same at yours. However, a crying patient at the reception desk does usually result in an immediate response, as Broomie said. It would be worth going in person to try to progress the letter. The Beacon doesn't require a lengthy letter, it won't take much time at all for the Gp to pen it! Catherine xx

[eleanorshutie in reply to CCT67]

Thanks Cat, I'm worried that by time I get an appointment it will be so bad they cannot do very much. Yesterday I felt worse became she couldn't say when she would do it. See you on 1st xx

[eleanorshutie in reply to CCT67]

Hi Cat

The referral is now in the post. Such a relief- thank you xx

[CCT67 in reply to eleanorshutie]

Excellent! Saw Lorraine yesterday at The Beacon and mentioned how difficult your GP had made the referral process when it's really very straight forward! She still hasn't any idea how the rumour started re not accepting new referrals. Hopefully you'll get your appointment before long xx

[eleanorshutie in reply to CCT67]

Hi Cat

I thankfully got a cancellation yesterday and got measured for a new full leg compression stocking. Such a relief. We were not able to go through everything because it was a follow up cancellation but went through a lot. Need to go through self massage in next appointment. Thank you xx

[CCT67 in reply to eleanorshutie]

Hi Ellie, that’s brilliant news I’m so pleased to hear you’re much closer to wearing the right compression! Thank goodness for the cancellation! Usually the letter to the GP (with all the measurement details/PIP codes for the prescription) takes about a week. You can either take your prescription to your chemist or post it to Daylong Compression. If your garment is bespoke instead of ‘off the shelf’ then Daylong is the quickest route. They deal directly with all the garment manufacturers and have a quick turnaround from receipt of the prescription. Daylong has a Freepost and will send you self addressed envelopes for future prescriptions. I’ve found they sort any problems with a script much quicker than the chemist (perhaps it’s only my chemist that cocks things up!) Hopefully you’ll have your garment by our support group on 1st Nov 😊 xx

[eleanorshutie in reply to CCT67]

Thanks Cat, keeping fingers crossed she gets a cancellation, I think she says it can take about 10 days as it is made in Germany and is bespoke. Useful to know who to contact once we find the right garments for my leg. As I think I will need more than two... but really relieved - huge weight off me as I was so worried about it. Now to healthy eating, losing weight and lots of exercise... thank YOU. xx

[CCT67 in reply to eleanorshutie]

All flat-knit bespoke garments originate from Germany. However some manufacturers such as Jobst have garment plants in the UK where they construct the garments. The turn around from GERmany is usually 6 working days or less. The fastest way to get your garment is to send your script once you get it from the GP to Daylong Compression. They deal direct with the garment makers in Germany and the UK. You will receive your garment more quickly going via Daylong than the local chemist. All you need to do is send your green paper prescription to Daylong. Also, you may want to look into the NHS pre paid prescription card. You pay a flat annual fee per year and can have as many prescriptionsthroughout the year and don't pay anything at the chemist, just show your card. It's MUCH more cost effective than paying £8.60 each prescription (unless you have few prescriptionsPer year). Google NHS prepaid prescription card for info/ordering. Xx

[CCT67 in reply to CCT67]

I forgot to mention...flat-knit thigh garments should not be donned the way you would normally put on a stockings - if you try to do it that way you could easily damage or impact the integrity of the garment which you want to avoid! Also, special flat-knit donning gloves (made by the garment makers) make it MUCH easier. I'm happy to show you how to don and can give you a spare pair of gloves (I recently bought 3 more pairs) . I have arthritis in my hands so without the special gloves I wouldn't be able to don my legs and trunk garments. Marigolds work fine for donning circular knit garments but not flat-knit, especially thigh length. I'll bring the gloves to our support meeting on 1st Nov xx ps the video links I sent you a few weeks ago are very good instruction on SLD that you can use until your Beacon appointment 😊 Sadly, the LSN only has a video for arm dranage, nothing for legs which makes me rather cross!

[eleanorshutie in reply to CCT67]

Hi Cat

Thanks for the advice I'm hoping I will get the support stockings by then and the offer of the gloves. Sorry for the late reply didn't see this properly and work has been very busy. I have just received a letter from Mr Gerard to say he's not referring me to Professor Mortimer as my condition is not complex enough. Said he will refer me to St George's lymphedema clinic if I don't improve at the Beacon Centre. Feel so helpless and not sure what else I can do. Very frustrating I have left a message with the Beacon Centre to ring me when they can. Feel Mr Gerrards Secretary had had some input regarding her unhelpful and obstructive behaviour when I rang a few weeks ago. Fortunately my GO referred me straight away. Her ignorance and the way she spoke to me made me very tearful and not sure what my options are. Apart from focusing on exercise and eating healthy. At mo I'm so low I have been comfort eating which I know isn't going to help my situation. Sorry just needed to talk to someone and hopefully I will get some help eventually xx

[Hidden in reply to eleanorshutie]

Hi,

I have been thinking about you this week and from what I've read you have made wonderful progress in a short space of time, even though it doesn't feel like it to you.

I am not clear what's happening now. The protocols are very much as your surgeon said but if you want to expedite an appt at St George's then it might mean biting the bullet and asking him to write a referral for a private appt with either Prof M or Dr Gordon.

( GP's can't make a referral unless you happen to live in Wandsworth and I know you don't.)

I am thinking that won't happen very quickly unless you can, once again, get a cancellation.

Dr Gordon appts come in at around £300 so Proff M will be a little more with probably a longer wait.

PM me if Imcan do anything...

xx

[Carolpa]

Have a word with GP.

[Hidden]

Hi Eleanor,

I'm so pleased the referral has now gone off. I hope you feel you've started on the often tricky journey of finding your way into the right care pathway now.

Hope you can have some relaxing time over the week end.

xxxx

[eleanorshutie]

Hi Wendy

Thanks, feeling more relaxed now. Up in Derbyshire Dales today, beautiful scenery x

[sammyvan]

Hi Eleanor Shutie,

So sorry you are having problems getting the help you need. I recently needed my ''up-date'' wraps, as I had worn the previous pair [ below the knee ] for well over the allotted time. Had a problem getting the GP to realize just how important they were and I needed them asap. I was so lucky that my District Nursing team took the matter in their hands - they went and sat in front of the GP until he signed the script form, then took it to the relevant dept. I have the wraps three days later! I use the CircAid JuxtaFit thigh to knee and then below knee, as well as foot bandages. Very comfy.

Try, if you have nurses involved, asking them to help? Worth trying. Wishing you luck, and a speedy solution.

sammy

[eleanorshutie in reply to sammyvan]

Thanks Sammy, my GP has referred me and finally today the referral is now in the post. Such a relief. Our practice nurse measured me for below the knee she wasn't sure how to measure and was reading the instructions- too painful to wear; like a tourniquet in three places, plus knee swelling and pain. That's why I need the referral. Just wearing over the counter at mo but leg is very bad when I'm working. Thanks for your advice and support xx

[Broomie]

Pleased things are underway now and hope you get some relief when everything sorted. X

[eleanorshutie in reply to Broomie]

Thanks I hope so too, trying to be positive and proactive xx