Lymphoedema petition

Dear All

As a sufferer from from both breast cancer and lymphoedema (both arms!) I would like to draw your attention to a lymphoedema petition on the Downing St website. If you have developed this condition as a result of your cancer treatment (as I have), you may well feel disappointed that there is only very limited help available, that current treatment methods are rather primitive, that the condition remains incurable and that it can sometimes feel like the last straw after everything else that has happened. I know that many of you will still have more pressing issues on your minds (snap!), but if you do feel you would like to add your support to the petition, the link is:

petitions.pm.gov.uk/lymphoedema/

Only your name (no other details) will appear on the petition.

Only UK residents/British citizens (expat is fine- there is a drop-down box to check for this) may sign.

I don’t expect miracles from this, but it is possible to add your voice to those calling for action on provision for lymphoedema in the UK (the lymphoedema charity, the Lymphoedema Support Network is one) by signing, if you’d like to.

Thank you for your support.

Hi
You have raised a good point and I think the more we can do the better, I have signed.
Mary
x

Signed
Best wishes
Alison

Good idea
I’ve just signed

Magsi

Hi
Signed the petition
Mizzy XXXX

Signed and forwarded link to two other sufferers.

The top of my compression sleeve rolls down and cuts my arm in two. Any tips, anyone? I’m fairly new to this malarky and don’t know if this is what happens to other sufferers.

Good luck to us all.
xx

Hi

I signed, but I also looked at a few more and signe them as well, Free prescriptions etc

Marilyn

Signed.

My lymphoedema is mild. I wonder that if I had had the information that I have now, from my lymphoedema clinic, would I have developed it at all?

I tried to find all the info I could about reducing the risk, but nowhere was I told to massage moisturiser into my arm with an upward motion to help the lymph fluid drain. I was massaging it in anyhow. I would have done it properly if I’d known.

Signed.

Me too

Well I confess to signing a few No 10 e-mail petitions but actually I think they are a splendid device for no one doing anything about important issues.

Does anyone really think the PM is able to do anything about lymphoedema??

Jane

Prob not, but anything is worth trying

Mary
x

Doesn’t he have to respond in some way?
L x

I too have signed it, good luck

Mary

Hi there everyone. Actually Jane, perhaps not the PM personally, but there is a huge need for more funding for lymphoedema clinics. When I used to run the one at Lewis Manning Hospice I was totally amazed that it was run as part of the charity, and not with NHS funding. Also the lymphoedema sleeves are not available on prescription (unless that has changed now). We used to give them out, but the money was raised from charitable donations. This is not unusual. Many parts of the country still do not have lymphoedema clinics at all.

Granny Scouse - your sleeves should not roll down, check back with the clinic that they are the right size. If they are, the clinic will (should) be able to provide you with a skin glue that you dab on your skin to stop them rolling down. Good luck.

Granny scouse - as seabird says,it should not be rolling down. They can do made to measure sleeves on the NHS but they like to keep that quiet. I need one as my hand is one size, my wrist another and the top of my arm another so standard sleeves don’t fit and I’ve got long arms and off the shelf ones are not long enough.

Hi All - thank you for your support. As I said, I expect no miracles from this petition, but I thought it was the least we as individuals could do to draw attention to this issue. The Lymphoedema Support Network is doing everything that it can to get a National Lymphoedema Framework in place for treatment and is working with NICE - in short, putting pressure on the ‘suits’ to help us.

I endorse the comments about sleeves above. The should NOT roll down. Your lymphoedema clinic needs to check the fitting - perhaps a different brand would be also worth investigating in addition to the solutions suggested above. (I’ve got Haddenham’s sleeves myself and they are brilliant - they have the most authentic ‘skin-tone’ (lol) that I’ve come across. They also have a grip at the top. You can also get them in white, black, chocolate brown, navy and grey/blue, if you fancy a bit of colour co-ordination! I’ve been able to get white and beige through an NHS lymphoedema clinic (ie, free) in the past.

Again, thanks for signing. If you know anyone else (friends, family, carers, colleagues) who might consider signing, do pass the message on…

When the e-petition system started in 2006 Tony Blair didn’t know about it for several months (he wasn’t very computer literate after all)

Sorry…when I read the petition it seemd so funny and there are so many funny petitions. As a bit of democracy in action I think its all a bit of a con…though maybe the system sometimes draws attention to causes which might otherwise remain hidden. But if the Lymphoedema Support Network really wants some changes for people with lyphodoema (and I agree they are needed) it needs to develop a few more sophisticated campaiging techniques targetted where a difference can be made.

Jane

Jane - I understand your point of view on this and I think I need to say that first of all that the petition is nothing to do with the LSN - I started it myself.

I think the LSN is in a ‘chicken and egg’ situation here; they are a small charity with limited resources, hence the amount of action they can take is limited, whilst still trying to support those who have no other help whatsoever (usually primary lymphoedema sufferers, but that’s another subject) and I think they feel they cannot afford to alienate anyone in the NHS if they are to get anywhere towards improving care for all of us and eliminating the current postcode lottery for lymphoedema services.

As far as the itself petition goes, if it makes a few people browsing the Downing St website go and find out about lymphoedema, I see that as a good thing. If it makes a single Downing St aide go and look up ‘lymphoedema’ before producing what I strongly suspect will be a formulaic response, then I see that as a good thing, too. If I get lots of names on the petition, then hopefully that will translate as lots of ‘voters/constituents’ in someone’s mind and I see that as a good thing, too.

I feel very strongly about lymphoedema! I could rant about it for hours, but I’ve gone on long enough here already!!!

i too have signed the petition ,i feel that not enough is done for us sufferes of this condition,which is reallylimiting i cant return to my job because it involves lifting,so existing on benefits,which by the way i had to fight for! lets hope everyone signs it and maybe we can get some action !!! i notice there isnt a forum for this condition on this site ,maybe we should have one ? lynn x