how are we going to keep lymphoedema services safe?

with the latest changes to how the nhs is rung, small specialist services are in danger of getting overlooked when the new commissioning groups come in - most gp's only kave a very few people with lymphoedema on their books, & i'm the only person with bilateral arms, hands & trunk in a huge surgery

& we aso know that some areas in the country already have no service at all, some have services that are shrinking (that's my local one) & some are closing altogether

we're more powerful & strong if we act as a group - what are we going to do about this, gang??

27 Replies

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  • I wrote to Diane Abbot - the member of Parliament for my area last year. She said as she was in the oppostion there was not much she could do. She was surprised how little there was in the NHS to help us. She did tell me to write to the Health minister. I didn't. Maybe we should petition him?

  • There is a lot that Diane Abbot could do, she can speak to the shadow cabinet health members, that's what they are there for. You are being fobbed off, in my opinion. If you are able to, and have the time, it might be an idea, to actually book an appointment with Diane and ask her what a Labour government, if they got back into power, would do about the lack of Lymphoedema treatment.

    As I have said in my reply to Christo below, approaching individual MPs is a better way to go, however, that said we could do a petition as well. Incidentally, I tried to set it up as an e-petition to government on the official website and it has been blocked. I received an email, then a letter from 10 Downing Street saying the issue has been passed to the Department of Health, I await their reply with interest.

    Currently a publication has just come out from Ed Milliband, the following is an extract from this Labour document, "Changing Britain Together"

    "The National Health Service is the Labour Party’s greatest achievement.

    We created it, we saved it, and we will always support it. Labour’s vision for

    our NHS will bring together physical health, mental health and social care

    into a single service to meet all of a person’s care needs, with a focus on

    prevention. It is a true One Nation vision: a health and care system shaped

    around people, not bureaucratic structures or markets.

    We will protect and strengthen the NHS, even in an era when money is

    tight. We will repeal the Government’s Health and Social Care Act, ensuring

    an NHS based on collaboration and integration, not competition and

    fragmentation.

    We will strengthen the NHS for the future and ensure it has time to care

    with 20,000 more nurses and 8,000 more GPs by 2020, paid for by tackling

    tax avoidance and introducing a tax on properties worth over £2 million."

    I can send the full document which covers all aspects of governmental responsibility in addition to Health, in PDF doc form, if you email me on bicknell875@btinternet.com

    Labour are promising all this so we can use it to put them on the spot about Lymphoedema services.

    I also have documents re the evidence for Complex Decongestive Therapy (CDT) some from LSN and others that I can forward to people to take to their respective MP and/or CCG.

    I will get off my soapbox now!

    I am just trying to help get Lymphoedema better publiscised and better understood by the sufferers, the public and medical professionals.

    kind regards

    Susan

  • Perhaps we should all get organised and start a petition. Here is one idea - click the link and read what to do.

    change.org/petition

    I have signed many similar petitions in the past started for different reasons by action groups. It is FREE nad Legal - so why not. As you said, our numbers in each location maybe small, but if we join together we can become many thousands! United fellow Lymphers!

    Lets hear what others think.

    Cheers

    Christo

  • Good idea

  • What NHS Treetment my understanding is that this condition

    Is not recognised as a medical condition by NICE but simply a side affect of cancer. Which for some it is but not all.

    NHS treatment is so very basic get u fitted with sleeves and I'm lucky I get very good ones.

    When i was first diagnosed I was sent to the physo at my local general hospital she was allowed to spent only two hours a week on all or lymphodema patients the sleeves did not fit well she did some kynsiolgy tapping.

    she referred me to a teaching hospital who kindly give space to cancer kin a charity that greets lymphodema they have limited resources I had a few sessions of heavy bandaging and massage but It was never enough to do any along term good. Then got cellulites big time it was on and off for 3 months. My gGp was looking up how to treat lymphodema on the net and printing thong off!!! I was put on long term low dose. Antibiotics for 18 months and referred to a major cancer centre for treatment. the sleeves there are made to measure and excellent the appointment system terrible in this major cancer hospital they have two part time clinicians who treat hundred of patients. NO DOCTOR AT ALL.

    So now I have good bandages that support my arm but this is not treating it. The NHS is not giving enough MLD bottom line that is the only way to beat this condition unless you pay privately for a machine or treatment and I for one can't afford to do that,

    So yes we need a petition to go viral please set it up and let's all get many many people to sign it. But who do we petition?

    Sorry for my venting;)

  • me. :-) I can also spread it to Ireland.

  • Hi Everyone - The LSN are already working on supporting lymphoedema in the new NHS we will keep you informed.

  • This article today has refered to a connection between cancer and lymphodema. After a years treatment by an oncologist with paliative radium treatment to attempt to remove what he believes is transferred pain to my leg nerves. I then learnt about lymphodeme from an inqisitive daughter. I was then accepted by the LOROS out patients dept after private treatment by a registered MLD . Thank god that found the cause of the major pain in the right leg emminating from the back of my pelvis thyrough my thigh to my shin bone. _ Until youve had it you cant immgaine it.

    My GP had no idea what it was about. Here at LOROS they treatd me initialy as an out patient to supply the pressure stockings and then the consultant Doctor saw me and told me I was not going home in that state. I didnt know they had respite rooms where they treated patients. What a god send. Over the next three weeks their doctor worked on resolving pain releif and also treatment for a chest infection for which I had just been released from an nhs hospital.

    Clearly such centres as LOROS need all the support they can get. and given that support can work wonders. I am sure they will need to press as they will for continude nhs financial support. It is these centres that could help us all but they and we need pulling together.

  • wow, I live in U.S. and we have same problem. I am in waiting list for help. after swelling for over 20 yrs they deside its lymphadema...all over. bit scared. how do they drain fluid from the trunk? My husbadn is from Kent U.K and has been saying Id get better treatment over there but look to me like just as many issues. Don't know where to go from here. Very heavy...

  • LymphSuppNetwork said: " The LSN are already working on supporting lymphoedema in the new NHS we will keep you informed."

    Can you tell us what you are doing? Can we do Something positive as well?

  • Oh my all I am very lucky to be living in Scotland where thus far NHS changes are not being implemented. My lymphoedema specialist is a physio at my local hospital,part of a team of two, sometimes three, for Fife. All team members practice at both the main hospitals. We have a different system of medicines approval, SMC rather than NICE, which i think may be why I can get my nice Jobst armsleeves on prescription here?

    But I will write to our Health Secretary Alex Neil just to ensure that lymphoedema services are maintained and possibly improved for all affected by the condition.

  • i don't want to start anything that might jeopardise or duplicate what lsn trustees are cooking up, so it'd be good to hear a bit about what's happening & how we can help

    a thought in the meantime tho - it'd be much more powerful to go to mps' surgeries than write to them:

    yes, i do have to wear them every day

    no, i can't always get them on myself

    no, there isn't an end date

    let me show you some sld - feels nice, doesn't it, but gets a bit boring twice a day every day, & let me show you some of the stretches / exercises i also do twice a day - i know, booooooring, eh?

    i've got a clean sleeve / stocking / corset etc here - d'you want a go at putting it on?

    etc

    but i'll sit on my hands & wait for now - it's important we all work together, i think, so will wait to hear what you suggest at lsn central

    (oops, can't sit on my hands - my weight definitely counts as pressure!)

  • I have full body Lipedema and Secondry Lymphodema, and again not treated on NHS, went to specialist hospital in London and was told the NHS have to fund my case- so GP applying for funding.

    agree need to speak to own MP's, and need a petition set-up- its a disgrace that thousands of us suffer with no professional medical assistance provided by the NHS, we need MLD and other treatments regularly provided for all.

  • Totally agree. You should see here in Ireland, it is even Worse! They dont even read when your write for help.We definetly need to start a petition. That is an absolute disgrace

  • I agree that we all need to work together to get better care. I suggest we need an MP who is prepared to put our case to Jeremy Hunt, the Health Secretary. I think it needs to be a Conservative MP because this is the party that is in power. It would also help if we had a media campaign. This takes time and effort and most of us have busy lives. I'm studying at University and complete my exams in May, then will have time to work on this. I'm happy to draft a petition. I am particularly interested in asking for the advanced microsurgery(Lymphatic venous anastomosis) available abroad that has produced excellent results. Those that are interested should be allowed to go on the waiting list at the Royal Marsden Hospital in London where such operations have recently been performed. Under EU law we are also entitled to access treatments abroad. But challenging poor care in the NHS is difficult. However, Julie Bailey managed to get a public inquiry into the Mid Staffs Hospital scandal by starting a patient led campaign so this shows it is not impossible. We need the relevant contacts to help us. My own MP is extreme left wing so not helpful. Does anyone have a sympathetic Conservative MP? Does anyone have a contact in the media? I am sure the LSN is doing what it can to help us but some of the Board also work for the NHS so it is difficult for them to openly criticise poor service. I do think we have to do more to help each other. Let's put together our ideas.

  • Hi Law student - a bit confused by 'some of the LSN board also work for the NHS so difficult for them to openly criticise the NHS' None of the LSN board or employees are employed by the NHS (Perhaps you are confusing us with the BLS) the only trustee who carries out any work for the NHS is out nurse advisor who sees NHS patients at her clinic. Our board is made up of 8 lymphoedema patients, our nurse advisor and our treasurer. The LSN has been at the forefront of raising awareness of the condition and supporting services and is certainly not afraid of challenging the NHS - indeed we have had questions tabled in parliament and have met with key political figures over many years the challenge is because of the localisation of health care they have decentralised commissioning. At present the LSN along with key leaders in the lymphoedema field are working with the National commissioning board to support clinicians in their applications for specialised commissioning and are actively lobbying for a National Strategy for lymphoedema care in England, they already have or are developing these in Wales, Scotland and Ireland - 3000 Health Care professionals have completed the BMJ learning module on the condition which was funded by the LSN and we are active members of Patients involved in NICE to try and push for wider recognition, we have also already met with the newly appointed NHS domain 2 leader. All this on top of our core work! I absolutely understand and share your frustration but we do need to be strategic in our approach, - we will keep you all informed through LymphLine and I am always happy to talk directly with anyone about their ideas and concerns - and we will certainly ask for your help and support as we move forward and continue to try and support services. If anyone would like to reach me telephone the LSN offices on 0207 351 4480 and ask for Karen.

  • But working with commissioning boards and clinicians is all very well but there must be times when there is a conflict of interest between working with the system as opposed to legitimately challenging an inadequate system. The LSN might like to adopt a strategic approach but a strategic approach to achieve what exactly

  • hi all

    i'm happy to wait for lsn to garner its forces & come up with a cunning plan

    when the time's right we'll need to be hunting out lymphoedema-sympathetic mp's & i expect they'll come from all points on the political spectrum

  • Please be assured I think the LSN is doing fantastic work in providing information, advice and lobbying Parliament. I was thinking of the medical adviser and nurse adviser to the LSN - it is ideal that we have people who are involved in the LSN and also work for the NHS because they can communicate with senior NHS officials and try to use their influence to help us. However, it is a fact that NHS employess who criticise poor service and challenge decisions made by their superiors can lose their jobs. You just have to Google "NHS whistleblowers" to realise this. It was only the patient led campaign initiated by Julie Bailey( daughter of a patient, who died at Mid Staffs Hospital) that has now led to a full public inquiry into the NHS culture and a report recommending major changes. I saw an interview with Julie on local TV and she outlined how she achieved this. So Yes I am suggesting we start a patient led campaign and there is no reason why we can't work alongside the LSN. Look at how many different organisations there are to support people with cancer. Another idea is to set up a fund-raising charity. The money raised could be used to pay private clinicians for those people who can't get the treatment they need in the areas they live in. There are 100,000 people in the UK who suffer with lymphoedema. If they each gave £1 we would raise £100,000. That's a lot of money to spend on multi-layered bandaging, MLD etc. for those most in need. I want to start both these activities. Anyone who would like to be involved please email: marshan1231@hotmail.com

  • Agree with all that is said on this site. Treatment in the UK is abysmal and it does need a campaign. To start with, medics need to understand that primary lymphoedema is not just a 'bit of swelling' but can be immensely painful and is exceedingly debilitating.

    To this day, even after 20 years campaigning by the LSN, there are doctors old and new who still have no knowledge of the condition. I saw two at the hospital very recently; they were GPs on a training week in orthopaedics and they had no clue about it.

    By the way, the 100,000 in the population which you quoted was the figure used back in the nineties - way more now but I have the feeling that the real figure is not disclosed; it would cause a melt down! There are loads of lymphoedema clinics in the country which are full to overflowing. It is not uncommon when in any crowded place or on transport to see a person with swollen feet/legs. If a campaign starts, I will certainly join in.

  • law student, i love your enthusiasm!

    bear in mind, though, that not one of the recommendations that came out of the mid staffs inquiry is new - the conclusions are remarkably similar to the bristol heart inquiry 20 years ago & every inquiry since

    & have fun setting up a new charity - as a law student you'll know it takes some doing to get it right (i've set up 2; even if you've got people who can give lots of time & specific expertise for free you're looking at a year or so minimum to get to the point where you're ready to get your registration number) & sometimes it can be more effective to coat-tail an existing charity if its aims & objectives fit

    i suppose i'm suggesting the caution of a tortoise rather than the quick action of a hare - stopping to do some strategic planning with the major organisations working together might feel like it's taking longer, but may be more effective & quicker in the end

    or maybe i'm just getting old!

  • Problem here is I think is that there really is no such thing as a "National" health service any more like it used to be 30 years ago or more. Hospitals and the like are run by inidividual "trusts" and you would need to lobby all the different trusts to get action. When the new Commissioning comes into force on 1 April I really dont know where we will all be as regards getting funding for treatments then. As our GPs surgeries will be responsible for their own finances I can see a lot of problems arising in the future. Also we must remember that our poor old GPs dont want to be administrators but doctors, for which they trained long and hard for.

  • Thanks for the supportive comments. You are right, it takes time to change anything and I agree that a strategy is needed. At present I have to focus on passing my law exams in May. Then I plan to volunteer with a local charity that is very successful at raising money for treatment for cancer. I know from personal experience how hardworking and successful voluntary organisations can be. I hope to make contacts with experienced and influential people who will join with me to start our own campaign. Yes it all takes time and effort. However, I once had a 16 year career with BT in Sales & Marketing. Time to use my skills again to "sell" our plight. Simply doing nothing is just not an option.

  • Hi Law Student. I agree that a multi pronged approach is a good idea. LSN are amazing in what they achieve but it won't hurt to have co-ordinated patient lobbying as part of the effort. Thank you for your enthusiasm, I for one would like to join in the effort when the time comes. I too would like to know how primary lymphoedema services will be commissioned under the new NHS structures. I know that services for 'rare' diseases will not be GP-commissioned because so few people are affected and treatments tend to be so expensive that GP budgets won't cope. Secondary lypmhoedema has, in the past, been able to access funding through cancer budgets (I'm not saying that's been easy to access of course, I know people have really struggled to get any help at all). My son has primary lymphoedema and we have had to fund a lot of his treatment privately after failing to get help from our PCT. I wonder how the new commissioning arrangements will affect this? Does anyone know whether primary will be GP or specialist commissioned? Thanks.

  • At the present time it looks as if the majority of lymphoedema services - secondary to cancer, secondary to other causes and primary will be commissioned by CCGs dependent on locally assessed need! There will be a couple of very specialist centres dealing with the most complex cases - such as children, genital, head and neck, whole body etc that will be commissioned nationally. Whilst we are in no way trying to discourage people lobbying for better services please remember that the LSN is a 'patient' voice as all of our trustees either live with of have been effected by the condition and our patient membership exceeds 3300! . Much of our work in the next year will focus on working with others to support the commissioning of services and the provision of adequate support for patients in self management. Once again if anyone would like support or advice on how to access treatment please do not hesitate to contact the LSN office on 020 7351 4480

  • Hi all, really good to see this being discussed! I am a lymphoedema patient - secondary to lots of pelvic surgery (not cancer related) and also sit on one of the new clinical commissioning group governing bodies. My observation would be - there isn't enough knowledge out there of lymphoedema and the benefits of the available treatments (presumably there is some good published research that could be shared?). I think there is a great desire to do the best possible things for patients but we need to work on raising awareness and asking for these much needed services based on clinical evidence.

    Personally, I have only been able to access private treatment for this, it has been costly and I won't be able to do this long term as I can no longer work. NHS fund my stockings though, which has been great - but access to someone who knows what stockings work well and are comfortable has only been available privately…

    We can't give up and we need to do this positively and work with LSN - patient voices are powerful!

    :-) take care and have a good weekend all

  • Has there been any news in this area? I am so frustrated with having to research my new condition and treatments available and also trying to work out what I am entitled to and what I could be entitled to if I battle. I am a 'doer' though and sitting back and accepting this sorry state of affairs is not an option to me.

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