Why are those with Lymohoedema not recognised and offi... - LSN

LSN
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Why are those with Lymohoedema not recognised and officially on the list from the NHS as an extra risk in this corona virus outbreak ?

Quartz22
Quartz22

I don’t think Lymohoedema necessarily makes you more prone to getting the virus BUT I do think that because our lymphatic systems have been damaged and this is basically our immune system then the affects of the virus will be more difficult to manage .

Personally I am absolutely furious that we will probably not be receiving a letter from the NHS to say we are at extra risk because Lymohoedema is not recognised as the chronic long term medical condition it is . I’ve had secondary Lymohoedema for twenty five years and yet we are STILL no further forward to having a proper care plan for its management and acceptance . It’s probably the only long term condition such as asthma , diabetes etc that is not recognised . This virus outbreak has just proved how imperative it is that this happens and I hope the LSN will now concentrate all its efforts on producing a large campaign to get this done . We have suffered enough with this abandonment . I am sick of fighting to be recognised . I know if I get ill with an infection regardless of what I get , I get poorly very quickly and it wipes me out . THIS HAS TO BE OFFICIALLY RECOGNISED BY THE NHS AS A CHRONIC LONG TERM CONDITION

16 Replies
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Very well said and it is time that all sufferers are treated with respect and not seen as a nuisance to be sidelined. We are very much ignored as there is no cure available.

Hope we all stay safe during the corona virus pandemic.

Chris

kHP22
kHP22
in reply to Christo

Thank you Chris . Yes unless we stand up and shout from the rooftops we are never going to be heard . For too many years I’ve put up with being an unnecessary burden to the NHS because our care is expensive and lifelong . Because I’ve had Lymohoedema for so long I’ve been through all the different phases . In 1995 there were no warnings that Lymohoedema was a potential risk , no specific clinics and very few medical staff knew anything about Lymohoedema . We had to find out the information for ourselves and we were often telling them about it . When we expressed concern we were told that we’d been cured of cancer so we just had to put up with it as a side effect . The support groups fought for years for better assessment , treatment and care . When I was first diagnosed we were given one stocking that had to last us six months before it was replaced . We had nothing to swop it with until I put in a complaint to the hospital and we were allocated two so we could wash and dry one whilst we wore the other . For a few years we were lulled into a false level of expectancy when Macmillan started setting up specific Lymohoedema clinics and funding it . Lymohoedema patients who’d suffered for years started to come out of the woodwork and receive the treatment they deserved . For a few years we received a professional service . You could already see the writing on the wall however that once this service was handed back to the NHS that it would be perceived as a very costly thing because commissioners wanted a service where patients could be referred , treated and then discharged as soon as possible . What they hadn’t taken into account though was that Lymohoedema like dogs is for life it doesn’t just disappear . Now we see clinics that have gone or have bern amalgamated with other departments like tissue viability and we have because the very poor relatives in terms of ours care . Patients are being discharged and told to self manage . Some struggle for months to get replacement garments and the direct telephone lines into the clinics where patients could get quick advice if they were very ill from cellulitis have now been replaced by faceless answer machine messages ! This is only my experience . Some find it much better and that makes it even sadder because it really has become a postcode lottery . In the 25 years I’ve had it , a quarter of my potential lifetime , I’ve never EVER been seen by a doctor about my long term condition . It beggars belief and now we really find the true picture when we are not even classed as vulnerable patients in a national crisis ! Well for me enough is enough . I want to be officially recognised as having a chronic long term condition and not feel as though I’m begging for the correct treatment and care . Sorry this is such an essay but as you can tell I’m very annoyed about the whole situation . If we do get a letter from the NHS then I’ll be surprised if it’s because of our Lymohoedema but it’ll probably be related to another secondary condition that we have .

I called my lymphoedema clinic yesterday to ask for a couple of replacement accessories. I was told the clinic is to be suspended and couldn't I manage with what I've got? I had to buy my own glue (expensive), for my stocking, as a matter of urgency a couple of weeks back.

kHP22
kHP22
in reply to Perido

Yes my clinic is closed as well . My new stockings are going to have to be made for me based on my old measurements which isn’t good because my leg was extra swollen at that point because I’d had a knee replacement , so I know without fail they will be too big for me now . These garments are our life line, they are like our medication . It’ll be a viscous circle because our limbs will swell again and we will be back to where we were before . It’s already six months since I will have been seen so it’ll be nearly a year before we get anywhere near back to normal and that’s assuming this only lasts for another six months .

Perido
Perido
in reply to kHP22

I don't think it helps that, as far as I understand, lymphoedema is not well covered during medical training. Asthma and diabetes are relatively well recognised conditions and have numerous health professionals championing those causes. Unlike lymphoedema, a lot of the diabetic cases could be resolved by patients being more mindful of their lifestyles. Sorry if that comes across as a bit harsh but if I could resolve my lymphoedema by watching my diet (I do anyway) I would think I'd just landed in heaven.

As you point out above, like many others, you have never seen a doctor about your lymphoedema. I will say I have but only because I paid for a consultation at the Oxford Lymphoedema Practice - with a view to LVA surgery for which I am unfortunately not suitable. I've had ICG lymphography (private) and lymphoscintigraphy (private) and together with the doctor's report I now feel fairly well informed and enlightened. I feel that it wasn't a self indulgent, add-on extra but something that should be offered, as a matter of course, to all patients soon after cancer treatment - as well as anyone else who has symptoms of lymphoedema. My lymphoedema started nearly 3 years ago after cancer treatment and has progressed fairly rapidly. I think if I'd had the benefit of the scans and doctors report from the start I would either have been suitable for surgery or my lymphoedema could have been more appropiately managed from the outset. I should, at least, have been in a flat knit garment much earlier than I was - instead I was offered kinesio taping and circular knit stockings none of which, it turns out, were suitable to maintain my condition. From appearance alone my leg has never looked too bad (I work very hard at it) and my clinic assesses my lymphoedema as mild, however the ICG lymphography report informs that I have a severe condition (below my knee) because there are no lymphatic channels present.

Our garments are essential for us and, as you very rightly say, the equivalent of medication. Without a well fitting and appropriate garment I am headed for pain, immobility (with all the sequelae) and am at much greater risk of cellulitis and possibly a life threatening sepsis.

bulldogbyrne
bulldogbyrne
in reply to Perido

Mine were on order but dont look like they coming. But I have cellulitis at the mo so not using them

I agree with you. I have other respiratory issues but I have also not received letter

I have now developed cellulitis which normally hospitalises me but I managed to get antibiotics and hopefully caught it in time.

Luckily my employer recognises my 2 long term health issues and has sent me off

Hi there,

I so agree with all of your comments. However, those of us with primary lymphoedema from birth, are an even more overlooked group. I am 80 in a couple of months, my follow up appointment is due 30th April, but I guess that will be cancelled/postponed, which is fine, but my 2 pairs of stockings will not be ordered and the 2 pairs I am wearing are getting a bit near their 'sell by date'! (as indeed am I, I guess). Take care everyone and stay safe. xxx

Dear dear Anne16,

You are nowhere near your sell-by date, and sound a lovely caring lady.

I have had a moan and groan about this shopping idea of giving us a whole 60 mins to get round a supermarket, it is impossible to do this for me and others. I hope and pray that you have someone to help you get some basic bits and bobs, as nowadays folk don't seem to care who they bump into, no apologises nothing.

Please take care if you go out and stay safe indoors xxxx

I totally agree with you about people with primary Lymohoedema . I have been fighting for years through my support group for equal access for all patients with Lymphoedema . Unfortunately when Macmillan invested money in the service as they were cancer based this restricted patients to those that had developed cancer as a secondary condition after their treatment . It always seemed very unfair to me as Lymphoedema is the same regardless .

Regarding your garments , I would contact your clinic . My clinic has ordered mine from my last lot of measurements and has electronically sent my prescription for them over to my doctors . They will then arrange for the chemist to deliver them to me . I hope you get it sorted as you can’t be without them

Totally agree with you. Have had secondary lymphoedema since 24/12/91 (over 30 years!) and was at hospital again today to have hosiery remeasured. Therapist had cancelled all appointments for the week, apart from me; I was getting cellulitis in affected arm every 5-6 months, so therapist changed me to a 4-monthly review. As she said, the last thing I need right now is being admitted to a ward for antibiotic drip!

Maybe Boris & Co have not heard of Lymphoedema and all the horrific side-effects it can have?

Having lived with Lymphedema since a teenager and now into my 70s, I would suggest that a Lymphedema diagnosis alone is not a condition to warrant any special treatment. However, I totally appreciate that many of you are experiencing lymphedema as a result of cancer treatment and that is an indication your bodies are metabolically compromised. Was a little surprised that my husband, who has lived with heart failure since 2010 and currently has significant foot issues since June, despite having his T2D in remission for some years now was not included. I would suggest that the numbers of people suggested as having that letter was really small considering just how many people have co-morbidities.

I totally agree that Lymphedema is poorly serviced and would suggest it is because there is no pharmaceutical solution – thus no industry lobbyists. Personally, I am grateful for the cancer treatment industry because it has resulted in a high number of patients that has enabled improved treatments for Lymphedema. But Lymphedema is only a side-effect of the cancer treatment industry. However, the lady that made the biggest change for me was a lymphedema massage specialist doing home visits that at the time, I could afford to pay. She transformed my life with lymphedema and have not looked back since. That was 2006. Also, thanks to the cancer industry, the compression garments are now included under the NHS. For most of my years living with Lymphedema the NHS did not cover the compression garments and no health insurance would cover as it was an existing condition from a teenager.

Diet does make a difference in the management of cancer and lymphedema - and that is getting all the industrial long shelf life foods out of our kitchens. Returning the traditional foods, real fats and minimal sugars and starches. That controls insulin and inflammation. To learn more about this the dietdoctor.com project is an excellent resource and I thoroughly recommend. It is totally free from any industry influences, many amazing patient stories and supported by medical professionals from around the world working to break the stranglehold of industry on dietary and medical advice – and follow the evidence. We had already changed our dietary approach (returned to foods we grew up on) when they started. Having said that I remain heavily dependent on compression garments to maintain the leg that is free from any skin issues. Class 3 Medi - plus Class 4 Jobst - but have a leg as small and soft as it has been for most of my life until 2006 without adequate compression.

Hopefully when we get through this Coronavirus pandemic, positive changes will come about in our food supplies and the over abundance of highly processed addictive foods, industrial vegetable oils, sugar and starchy foods and return to foods we can recognise as they do not have a long list of ingredients.

Wishing all well through these challenging days.

It's not just lymphodema they have changed which others are on the vulnerable list I have lung cancer which I am having treatment for and asthma as well as osteoarthritis and I am not on the list. My husband is a postman and type 1 diabetic and isn't on the list and is expected to work (our GP has signed him off) lucky our GP is very clued up as when he was training at St George hospital did a rotation in the lymphatic department and told me when he started 5 years ago I had had lymphodema and lipedema and sent me to get assessed straight away

Aprille
Aprille
in reply to Loramay

You may still get notification that you are on the list by letter or text. If you aren’t then you can register yourself on the Gov. UK site.

I am glad my secondary Lymphoedema doesn't make me more vulnerable to Covid-19 or any other virus.

Certainly it’s a long term condition and, yes my arm is susceptible to cellulitis and I feel disabled by it but my immune system in general is not

vulnerable.

I read the post about it on the board last week and there was useful information enclosed with the latest LSN magazine.

Many on the board will be more vulnerable and you can register yourself here ;

google.co.uk/url?sa=t&rct=j...

If the link doesn’t work please search “ extremely vulnerable gov.uk”

Yes yes we need to do more about getting our condition/s known whether we have primary, secondary, Lipodema, Lipo-Lymphoedema or any other of these wretched diseases, but not now !

Stay well and stay safe everyone.

Wendy

I could be wrong but I don’t think there is any scientific evidence that we are more at risk for Covid-19 due to lymphedema alone.

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