Referred back to GP from lymphedema nurse: I was... - LSN

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Referred back to GP from lymphedema nurse

galtyboi
galtyboi
20 Replies

I was referred to a lymphedema clinic from my gp and was getting first class treatment from the nurse ,and getting measured up every six months for compression stockings which was fantastic.Unfortunately the last appointment was to be my last and was told I am been referred back to my gp .It doesn't sound right to be sent to a clinic and sent to the gp again but thats what has happened.I dont know if it is because the clinic are not doing lymphedema patients anymore or if there is nothing more they can do ,but since then I have seen nobody and my legs are going back to where I started ,swelling and fluid.On a recent lymphline magazine I saw a lymphedema pump which looked fantastic,and I was wondering if these are available to purchase or if the Nhs could help me get hold of one ,then I would be able to manage the problem myself without ever going to see my gp,but I suppose that will not happen,we read about all the helpful machines that are available and the surgury thats available but unless your name is rochafella,you got no chance of ever getting hold of any pumps or machines that can help,its just like everything else ,you get help some of the way ,then you got to do the rest yourself.I'm getting older and finding it a struggle to put on compression stockings,surely some where out there ,there must be an easier way ,even if there was something in hospital that could drain the fluid from the limbs would be a help but there is nothing for lymphedema patients ,sweet fa,just put up and shut up,and get on with it.

20 Replies
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Good morning Galtyboi, hope you are well. I have had a similar experience, excellent treatment available but too far to travel on a regular basis as is necessary with this condition. I have looked into buying a pump, several on the market but as you say, very expensive.

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galtyboi
galtyboi
in reply to Hidden

Yea I know what you mean Jessie,we are both on the same boat,it's not fair,but its the way it is unfortunately.

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veriterc

Do you have this service in your area?

aftercancers.com/2017/02/my...

If so, I found them very helpful in arranging appointments in a similar situation.

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galtyboi
galtyboi
in reply to veriterc

I am not sure if I would qualify as my lymphedema is secondary and only got it in my early fifties,and it's not as a result of cancer,so aftercancers .com may not be a help to me but its worth looking into,thankyou Veriterc for your reply.

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veriterc
veriterc
in reply to galtyboi

I wouldn't worry about HOW you got L. But I often write about things that would interest any patient on aftercancers.com

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galtyboi
galtyboi
in reply to veriterc

Ok thanks Veriterc ill look it up now.

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jjbinks

Hi. I had a similar problem with my clinic. I have primary lymphoedema and have been going on regular visits just like you. I told them that unless they could find me a suitable clinic as an alternative I would take my case to my MP etc and fight them all the way. I live in Hertfordshire who send primary cases to Cambridge and as Herts rules haven't changed they cannot do this.

Well it worked. I think they are just trying to get their list down for money reasons but as I said that they were getting paid by Herts that did the trick.

If I was you I would question their reasoning. If need be take it to your MP he is there to help.

Best of luck.

3 likes
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galtyboi
galtyboi
in reply to jjbinks

That's a good idea jj why didn't I think of this,I was getting seen in Mount Vernon in Herfordshire and it was brilliant ,now im back where I started at the gp who have no experience in Lymphedema,ill definately question it now and if need be see my mp,thankyou jj for your reply.

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jjbinks

Also your GP can write to the area health authority asking for a lymph machine for you. Mine did but the machine was no good for me as it gave me problems with my balance and congestion at my neck.

It's worth a try. You shouldn't have to pay for a machine.

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Aprille

Budget cuts....so very frustrating.

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galtyboi

Your right there Aprille.

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Mitzy

I have also been referred back to my GP by the team at Mount Vernon. My primary lymphoedema is thankfully fairly stable but I do worry about future management if I have any problems. I did have a bit of a problem when trying to order my stockings on prescription for the 1st time through my GP surgery. The team at Mount Vernon did come to my rescue and helped me sort things out. I also believe it all boils down to budget cuts. With my lymphoedema being stable I was unfortunately a candidate to be referred back to my GP.

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galtyboi

It's not going to be the same Mitzy,my Gp is first class ,but unfortunately with most Gp's ,lymphedema is not something they are experienced in treating,whereas in Mount Vernon,they have experience in treating the problem,I will miss Mount Vernon and the lympheodema team they were brilliant.

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Oonagh1
Oonagh1
in reply to galtyboi

Once again cruel and unusual treatment of a chronic lifetime affliction which needs ongoing treatment and compression garments that fit properly. lymphedema reverts to square one very rapidly and the; its Downhill all the way unless proper and regular professional treatment is given and properly measured garments are prescribed. We have to figh5 our corner robustly, nobody else will

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Lynne-byn

Sorry you've had an awful experience, these replies are great, hope you get sorted x

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galtyboi

Thanks Lynne,I will get sorted .

1 like
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Lynne-byn
Lynne-byn
in reply to galtyboi

Hope so hun keep pushing x

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galtyboi

That's all we can do Lynne x.

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BedfordBoy

Hi, There's quite a few machines for lymphatic drainage on Amazon. Take your time to read all the reviews as they range from under a hundred pounds to a few hundred pounds! I also bought a circulation booster machine like the one Ian Botham advertises. They are good in my experience. My one is made by Revitive. Again ,read all the reviews. Hope this helps.

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Lizzy69

Yes I got discharged and mines getting worst Pharmacy’s are suppose to measure ur for new ones if u have a change with I did but they can’t get the right mine cut in to my ankles as I have in both lower legs I had it for 25 yr now and it cause loads of mobilty issue

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