Publicity for lymphoedema in the UK

[Perido]

I was pleased to see an article about lymphoedema in The Guardian just last Thursday: theguardian.com/society/202...

[Eileen28]

It's about time lymphodema got more publicity. It is a horrible condition, with little recognition or interest in the medical field.I am extremely lucky to be a patient at St George's Hospital under proffesor Mortimer.

I couldn't ask for a better treatment. Their expertise is second to none. I am so grateful to receive such good care.

I can't praise them enough.

[Perido in reply to Eileen28]

Care for lymphoedema certainly seems to be post code lottery. My lovely clinic closed last January and I've yet to hear about an appointment (due last March) from the new provider despite doing some chasing. I'm considering going private but it shouldn't have to be that way.

[Eileen28 in reply to Perido]

As I think you will know this is a life long condition. Going private is a good stepping stone until you get a Nhs appointment. But unless you are financially comfortable would be too expensive. As you said you shouldn’t have to pay privately. It’s disgusting! They always use covid as a excuse too. I’m sorry you have been left like this.🙄😩

[Thomas45]

And men get it too. My GPs thought I had a fluid retention problem and so went through courses of water tablets without any improvement of my legs. Just before I was diagnosed my legs started to weep lymph fluid and were still weeping it when I saw the lymphoedema nurse.A year ago I fell downstairs on my bottom and ended up with a hairline fracture of my right fibula, which healed. Because I have no downstairs washing or loo facilities I spent almost a year with my sisters 80 miles away. I couldn't put my knee length compression sock on because the contours of my leg had changed. The national Covid situation meant that I wasn't measured for my new socks for 11 months. As a result of that fall I also have Foot Drop on my right foot. ( I also have ongoing asthma and permanent atrial fibrillation, but manage). I can't drive any more and walking is a bit of a bind outside, but I'm sure that practice will help.

[Perido in reply to Thomas45]

I'm so sorry you've had such a difficult time. There are far too many examples of late diagnosis and inadequate care for lymphoedema.

I'm hoping publicity, such as the recent article in The Guardian, will help add some clout to getting improvements for lymphoedema care. The Guardian article isn't exhaustive; as you rightly point out lymphoedema affects men as well. I'd like to see more articles in a range of newspapers and magazines. I'd also really welcome a TV documentary about lymphoedema.

[StellaM]

Thanks for sharing,Perido. At last,an article to raise awareness in a mainline newspaper! I’m sorry your clinic has closed,mine too,haven’t been seen since Dec 2019,although one day a district nurse knocked on my door ( over a year ago now) and handed me two pairs of stockings!

[Perido in reply to StellaM]

So sorry your clinic has also closed. My GP surgery ordered my last set of garments (custom made) based on old measurements which luckily I had to hand. But I feel uneasy about not having a specialist service to readily get advice from.

[Miliverpool]

Thank you for sharing this. It’s about time this debilitating condition got some recognition. I’ve suffered with this all my adult life some 36 years now. From day 1 till now I’ve encountered so much naivety about the condition and the effects it has It took hospitalisation for cellulitis turning to sepsis for friends and relatives to realise what a burden this can be. It really needs to be recognised for what it is and treatment to be available to help deal with it to be more forthcoming from the NHS. Wishing all my fellow Lymphies health always xx

[Perido in reply to Miliverpool]

So many of us have to be pro-active and persistent to try and get the on going support we need. As you say the NHS needs to be more forthcoming. Until I read the Guardian article I hadn't realised there isn't a national strategy for lymphoedema - shameful.