Hi guys, I plan to go viral on Facebook and twitter to tell about how much the way we are taking care of is a disgrace. Trying to get the support we need cause it is not good enough. Is anybody that would like to get connected on Facebook to fight this together? The only thing i need is your email adress to get connected. the more email adress i get, the better. We can all be connected on Facebook and tell them all the truth about what is really going on !
My plan is to do something similar to the ice bucket challenge. This condition needs to be finally recognized as serious. If Specialists don't want to help us, we need to be as loud as we can. This is truly unacceptable to be treated that way! I am going to make a video of me explaining it all in short word why nobody wants to truly help us and let us get worse!
Written by
Bluedolffin
To view profiles and participate in discussions please or .
Since I have been diagnosed with lymphedema I have recieved the best of treatment from my Gp and the lymphedema nurses at the hospital,they have all been brilliant.I would just say that lymphedema is not getting the recognition it deserves,its a life long condition but not enough GP's are aware and theres not enough places available on the N.h.s to get treatment.It needs to be highlighted more so people are aware of what it is and how to find help and where help is available.
Hey Pjtrant, join the international petition Europe and US included to fight your cause and your life, if you want things to change for you, sign this petition, the only thing we need is your name and country :
thanks Christo, we are all going toward a unique goal! Fully recognition of this condition and a real solution available. Merry Christmas and all the best for 2015. Things are going to change.
This year the LSN did the Sock it to Lymphoedema to raise awareness, which I assume we hope to build upon next year and raise some funds in the meantime! Additionally I was involved in creating a calendar which is for sale via the LSN for £5.
In addition there is already a number of us connected via Facebook and a number of groups about Lymphoedema in existence already, a petition was doing the rounds earlier this month.
There has been numerous tv slots and newspaper slots this year too, so there is already a lot going on.
Whilst I applaud any organised and individual effort for awareness, it takes a long time for things to move despite of TV and newspaper slots. From what we are all reading here and in other forums, the help is minimal and sometimes non existent!
One has to address the NHS and those responsible for making the changes, the public can help but to a point. If there are no specialists available if the condition is not recognised by GPs or even surgeons and radiologists themselves, talking about it and making it know is not going to help much. Sorry for sounding negative but, as far as I am concerned despite all the media exposure, so many people are going und/underdiagnosed and un/undertreated for known cancers so, not sure how much will be done for a "side effect" of treatments! When I went to the Macmillan GP conference last year, in their booklet which hosts all recommendations towards GPs, MLD was shown as not necessarily effective or of importance in the early stages of lymphoedema which is obviously wrong as, like cancer, you want to catch it early! I pointed out all the research available and hope that in the new edition it will be changed to "yes, treat early lymphedema so that it does not become worse".
My email address is athinakay@gmail.com, count me in. Show them how lacking in knowledge, awareness, funds, specialists, facilities, you name it, is affecting people with lymphedema, in their face! It has been a silent disease for too long!
thank you so much for your support Athinakay! You are awesome. Let's become a big organisation with the help of so many others and let's show them as you said how lacking in knowledge, awareness, funds, specialists and facilities is affecting us. You can count on me, I am going to be loud.
(If it has been a silent disease mostly is because so many GPS practises the ostridge ritual !)
Sorry I disagree I may have been lucky but once diagnosed my treatment has been satisfactory in every way. I deal with my own compression now but before I had help at both Hosptial and GP level . I special shoes made and my wraps every three months as the elasticity wears down. Legs are good ! I thank all the brilliant people who have helped me along the way!!
Yeah. I agree with yur first line ginsing.They might be good to DIAGNOSE in some countries but what solution did u get? They are not able to find a solution. Did they talk to u about LVA? Did they tell u it is progressive and a life threatening disease. how long do u have LE for?
Observing a problem is so easy but don't u want to be cure someday? What exactly do they do to make u think u will be able one day to get your limb back to normal? Is it not what is all about? Did they tell u about health abroad treament abroad?
No, because they are good at DIAGNOSE. With all respect, Do u have the
money to pay for this the LVA operation? Maybe u have the money for it. I don't. You will soon discover it is not pink world and all they want is you to enjoying seeing your limbs deteriorating one by one !
What makes you think that this operation will 'cure' our problem? I, for one, even if it wason the NHS, wouldn't have it. I went to a lecture and was told that the patients have been followed only for two years. I would like to hear that hundred and thousands of people have been cured in order to start thinking about it. It took a whole year until I was sent to a special clinic and after about six-seven sessions, I had to start doing the massage myself. I would like to be able to have at least once a week MLD plus the use of a compression machine at home paid by the NHS. Any operation has its own drawbacks. Are you aware of that?
Thanks for your message. I am so happy to get your thought on this.
yeah I totally agree with you Rebec and sorry if i made you think i was not aiming at this as well. We are all aiming at better treatment condition and financial help. I have to pay myself for my garments for 7 years. My health insurance does not want to hear anything about it although i appealed twice and i dont have the money to buy a machine.
About the LVA operation, yes I am fully aware that it is not a cure. ( It is just make me feel better to say it is, :-)) but it is so far the most positive treatment i heard of. It does not cure the problem but it has been scientifically proved to improve your daily life.
I was unaware that Patients were followed only for 2 years after the operation. According to Campisi research, they have followed some cases for 5 years, i can send you the docs i have if you want. It is all about bring this type of technic to the public ward now.
And yeah, I understand your doubts and speticism about it. I am myself the result of a surgeon mess!
However, we cant stand still, we have to keep on moving in one direction right to raise awareness. it can only makes us feel better to move our lymphs right?
I agree, six or seven sessions is not enough and access to a compression machine would be great
I am encouraging everybody to lobby their MPs and local council Health and Well-being Boards re lack of proper Lymphoedema treatment, see my replies to Bluedolffin further down this list . I have also just sent off another attempt at a government e-petition
I am glad you are happy with your diagnosis and treatment...however how can you disagree with those who are not and not so for very good reasons? ...we are not all so fortunate in getting diagnosed correctly or in good time, which means no treatment until things are out of control and even then it can be a trial getting any in some areas. Denial from the medical profession compounds matters. Consider others.
In my opinion, we need to be told about lymphoedima much earlier than we are today, so that when we notice a bit of swelling, we know what it is and we know where to go to look for help. Nobody told me that there is something that I can develop after my operation which will be with me till the day I die.
Long queue does not mean they all had to be there. The problem is with GP practices, they do not give enough appointments ahead of time as they have to keep some for emergencies, people do not realise that. If you cannot get an appointment at your GP, you can call first thing in the morning and they will find you one most of the time.
Re funds, they can find money if they start managing the budget better and not throw silly money around ( probably heard the story of BBC staff taking redundancy payment and then being rehired and that is just one story ). There is money in the country but how it is used is a different story...
For some countries, also there is a definite and visible lack of knowledge and laziness from some practitioners. Maybe i just got unlucky and came upon the bad ones only.
The worse is that they dont even get informed. They just prefer to avoid the problem. How professional is that! Teachers need to constantly get informed and learn every day in order to teach well at school. They have to work very hard to update their skills on a regular basis.
Gps and some practitioners are hiding from the truth because it is so easy to do so. When you go to see a GP and after checking your arm, she tells you to go to rest without recommending to see anyone! Or she is asking you why you still have the health insurance and moans to write you a prescription knowing what you are suffering from!
When I asked the senior breast care nurse at the Royal Marsden why do women do not get measured prior to surgery she told me that if they did that then "all the ladies would think they will get lymphedema". That is the mentality of our carers!!! I started investigating the possibility of lymphedema as soon as I got cording which was straight out of surgery. My breast got swollen after rads and my hand and arm got swollen 1.5 years post surgery but, at least I was a bit prepared and had seen Prof Mortimer and discussed solutions...
that is the mentality ! what do you mean by "you got cording". Did you get a good care from Prof Mortimer at least? I heard of him a few times on this blog.
well done we have to speak up for ourselves. My clinic doesn't keep you on their books for support if you want that you have to be reefed again, fed up. Merry Christmas
MY CCG refuse to recognise any treatment for non cancer related Lymphoedema, they have actually stated publicly at two separate meetings that there is no evidenced based treatment at all for Lymphoedema, which of course is simply not true, yet they commission the same treatment that I need, from a charity that is just a mile away from where I live. Instead, I have to drive over 30 miles away to Oxford, the journey itself, exacerbates the pain in my legs and I am exhausted that day and the next, thus impacting still further on my quality of life. Also the Oxford Clinic us now getting lots more referrals from Reading so they are getting a longer waiting list.
I not begrudge those people with cancer related Lymphoedema, the treatment they are receiving, but why should one lot of Lymphoedema sufferers get treatment to reduce the swelling and pain and the others (which are a greater percentage of those with the condition) get nothing !
I would advise all people with issues about treatment and the lottery that seems to exist for this, to as a start, write individually to their local MP and to their local council Health and Well-being Board, the latter being a comparatively new committee in local government.
I am fortunate that my Health and Wellbeing Board, when they were given the same misleading and indeed downright incorrect answer as I had received at the CCG meeting, i.e. that there was no evidence based treatment for Lymphoedema , told the CCG to investigate further and come back to them.
My MP has written to NHS England to ask why there is no Lymphoedema Stragedy for England, after all Wales and Scotland have one! He has not received an answer yet, his letter was sen a month ago, so I asked his secretary on Thursday ( 18th) if this could be chased up.
The rally weird thing though is that I tried to start a government E-petition about lack of Lymphoedema treatment and it seemed to go through okay and then I could not see it on the site. The next thing I got an letter from 10 Downing Street to say that my email had been sent to the Dept of Health as they were better placed to answer my query.
The thing is I did not want just a letter, I wanted this raised publicly by an e-petition.
I have just completed the E-petition again and received the email to confirm the petition. Here's hoping they let it through this time, it can take up to seven days while it is checked, so I will not hear anymore now until the New year.
I am not going to give up on this, my quality of life is rubbish right now and I am having to take far too many painkillers (I do not exceed the prescribed dose), just to be able to get around. Today, trying to do some Christmas shopping, was a nightmare and my husband and I had to come home, only having done half of what we wanted to. It is affecting my husband as well, he is so worried for me. This is not supposed to be a third world country, for goodness sake. If my father was still alive, he would be horrified, he would say that he did not brave the horrors of the Normandy landings on Juno beach to see so many people, lacking the care that they need. Unfortunately he died after catching MRSA in an NHS hospital, on the same ward as six of my clients, who had also previously caught the infection. I was working as a CAB trained Welfare Rights and Debt adviser and was the manager of an independent advice centre, at the time. When I complained to the hospital concerned, they lost the complaint.
We need to be firm on this, we simply want a decent Lymphoedema treatment, no matter where we live in the UK.
Best wishes for a Joyous Christmas and a Happy and Peaceful New Year to all on this site.
I hope you eventually get the treatment you need closer to home. Unfortunately those of us with secondary lymphedema are too frequently ignored too. There is huge denial and with denial comes a precarious situation of non diagnosis and no treatment.
hi blue count me too, we need to be heard, my legs and groin are getting so bad I have to drag my self about the bedroom floor as the pain and numbness get worse, for some people not to see it as a condition, I would like them to spend a hour with me at my home and to tell me its nt aserious condition,
Nobody should have to suffer like this. It is appalling.
My e-petition is now up and running for those in the UK and I have just checked the Irish parliament website and they have a similar facility there for petitions so Irish members on this site can do something there.
Further to my previous replies to Bluedolffin's plan, I have now succeeded, at the second attempt, in getting an E-petition on the government website. campaigning for change in access to Lymphoedema treatment
It states:-
Why is it a Postcode Lottery, with regard to getting treatment for Lymphoedema, particularly, non-cancer related Lymphoedema? Many people go undiagnosed for years, often being told that they are just overweight and to go on a diet! When they are diagnosed, they are told, that there is nothing that can be done, or are given water tablets such as Furesemide, which do not work on the Lymphatic system. This is despite the fact that there is excellent, evidence based treatment, such as Complex Decongestive Therapy (CDT) and more recently, micro surgery, which does help. There is no cure, but there is treatment, that can alleviate the symptoms, including the severe pain suffered by people with this condition. The cost in ruined lives, of not providing treatment, is unacceptable. This government must make these treatments available across the country and locally, not just to a lucky few and there should be a Lymphoedema Strategy for England, as has already been set up in Wales and Scotland.
The petition can be viewed and signed via the link below:-
Perhaps I should add here, that I worked for twelve years as a CAB trained Welfare Rights and Debt Adviser and as part of that, carried out Social Policy work, which involved reporting cases of serious issues, in all categories, not just health, (minus identifying details) to NACAB H.O where they would be collated and reported direct to government and followed up in order to effect change at the highest level.
In addition to signing the petition, I would ask that people write to their individual MP's and ask friends and family to do the same. Also please contact your local council Health and Well-being Board and tell them about the difficulty you have had. The CCG send representatives to the board meetings, so by raising with the council, you kill two birds with one stone and the CCG have to respond to the Health and Well-being Board. The Lymphoedema Support Network have letter templates for writing to MPs and the CCG, the latter could be used to the board with a few word changes.
Best wishes to you and your families this Christmas.
P.S. I would be grateful if people could confirm to me that you have signed the petition although it is not essential. I am putting it on my Facebook page as well, which is Susan Bicknell, in Reading.
If you want any further help or information please email me at :- bicknell875@btinternet.com I am happy to receive queries or comments.
I have just been on the website and it would appear that the Irish parliament have a similar process. See page :- oireachtas.ie/parliament/oi...
It says "The Public Petitions System presents an important new avenue for members of the public to participate in the democratic process. For the first time, through the petitions process, all citizens will be able to take their policy concerns directly to their National Parliament and, in doing so, influence the parliamentary agenda. "
You could use my wording if you like or adapt it.
Best of luck and all my best wishes to you for 2015
Thanks everyone on this thread for being so proactive. I have signed all the petitions linked from this site. My son (17) has had primary lymphoedema from birth. We have been very assertive getting help, and it took some doing. Now he has a helpful GP and a lymphoedema nurse, so he gets checks and garments as needed. However we have never had any luck getting funding for intensive treatment (two applications, both needed and supported by all practitioners concerned), so twice we have paid for this ourselves. Good luck to all in their individual and collective efforts to get help for people with lymphoedema changed for the better.
so sorry to hear about your son 17. He is lucky to have such a dedicated mother. Great to hear that he is in good care and thanks for your support. We need it. Good luck!
Tell him this new year is going to be the year where they found a cure for lymphedema and everybody will trash their garments to the bin ! My grandmother had diabetes so i know what you are going through. Good luck and happy new year!
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
You can count on me, I am going to be loud.
pity.
In need of support
