Just been diagnosed, but how long before being treated. - LSN

LSN
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Just been diagnosed, but how long before being treated.

alibali02
alibali02
13 Replies

Hi I live in a village approx forty miles outside Glasgow, can anyone please tell me how long it will be before I am refered for treatment on the NHS. Many thanks in advance for any help you can give me. xx

13 Replies
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AnneBury

I think it varies so much according to where you live and what might have triggered your lymphoedema. I suggest you contact the Lymphoedema Support Network. They won't have a definite answer but have loads of UK wide experience. Just use a search engine, like google, and look for "Lymphoedema Support Network". You will find their email and telephone number on their website.

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Lizziejane
Lizziejane
in reply to AnneBury

As has already been said the LSN,or your GP who presumably diagnosed Lymphoedema,should know of a Lymphoedema Specialist/Physio,usually based in one of your larger hospitals,and get you in to their system!?

I only waited about 3/4wks to be seen in North Cornwalll where I now live.

Having had the condition for over 12yrs,I have been treated in various parts of the Country and Channel Islands,where I was first diagnosed.

There will be somewhere,so keep persevering until you are seen. Good Luck.

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suzie_danger_girl

Depends what kind of lymphedema you have, if it's secondary, not sure, if it's primary well I've been waiting 20 years for some kind of treatment and they won't pay for it so......

Definitely get the help of the lsn to know what to ask for.

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shirty67

Hi ya after the third bout of cellulitse last year i only found out by accident by the district nurse that there was a lymphclinic in Sandwell.Isaw my doctor in May i had an assesment in June at the lymphclinic and started treatment in August.The trouble is nobody will tell you

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gavinlwright

Hi i can only re-iterate what everyone else has said. My GP refetred me to my Lymph clinicin Solihull, strangely a senior dermatologist consultant at the hospital was unaware of this clinic. It just depends i think on where you are. The main thing is keep pushing and dont give up. You are entitled to treatment.

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MarianneC

Hi, not sure where you live but there is a Lymphodema clinic in Greenock which is where I was treated. Your GP will probably refer you to the nearest clinic to you. It may take a wee while to get an appointment through as they tend to be busy places, but it will be well worth the wait. Usually they try and fit in first appointment relatively quickly. When you do get seen it will be very helpful Im sure. Good luck.

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unlucky

hi well ive been waiting 5 years and i still havnt got an appointment or had any treatment i really hope that you are seen sooner than me good luck x

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Hidden
Hidden

I'm afraid, if my experience is anything to go by, you will need to be a pretty active agent in this process! But being diagnosed is a very, very important first step, and one which many people don't get to. So you have done well to get that far, believe me! Find out where your nearest treatment centre is, so that you can support your GP in the process of referring you on (in my experience - 30 years with primary lymphoedema, so lots of GP's seen in this time - most GP's need this active support), and keep on until you get a referral. Sadly, even then it can take a time before you are seen (it took over a year for me to be seen by my local service, but this is the biggest lymphoedema service in the UK, so perhaps that had something to do with it). Good luck - and don't get fobbed off by people who say there is nothing that can be done for it - that is simply not the case!

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morganite

how sad, your gp should start initial treatment after diagnosing it, I had to wait 2 yrs to go to a lymphedema clinic. I did have reasonable treatment from my local services, specialist centres are few and far between, good luck

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goodtimes

I thank God for this site as it gave me info on everything. It is a shame that some dr's have no clue and don't address it outside of giving you water pills and sending you on your way

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Rainbow36

It depends how assertive you are really. Put your foot down and keep pestering and pushing your GP. Do all the research you can as you will know more than them I have discovered! Don't be fobbed off x

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lovesradio

Good luck, LSN as other posters suggest may be able to give you an idea where your nearest service is. It depends on who first made diagnosis in a way, and if it is primary or secondary (i.e. arising following trauma such as surgery, bad insect bite or similar). I live in Fife and I was referred by physio in WGH in Edinburgh to my local service which is offered by a physiotherapist specialising in lymphoedema.

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Ginsing

Hi Alibali,

I must admit I don't know the answer in your area. Wanted to wish you luck and the best suggestion is to take on your own care, in as much as being as proactive as you can be. Do lots of research there is quite a lot on line and this site provides many in sights between fellow sufferers.

I started with triple bandaging following a bout of cellulitis and then after about 2 months farrow wraps sorry I did not say I have primary in my legs. Now when it gets bad I have 5 weeks of tripples then back to farrows.

It seems we have to regulate and do it daily do take great care of your skin wash and emulsify daily.

Good luck hope you find the support you need which side of glasgow are you on?

xgins

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