Lipoedema Patient

Lipoedema patient battling with little more than a pair of compression tights. Help persuade the professionals we're "worth" treatment. #SurvivingNotThriving

[Lipoedema UK @LipoedemaUK]

Did you know that healthcare professionals can join Lipoedema UK via our Membership for Allied Healthcare Professionals? There are many benefits - pop over to our info page!
https://t.co/GdtChbbdTX.
Only by working together can we improve the lives of lipoedema sufferers.

[Lipoedema Patient @lipedemawarrior]

@physiopodukltd @LipoedemaUK Would have been great to have some @NHSEngland or #CCG representation to understand why the lack of education equates to zero funding.

[Lipoedema Patient @lipedemawarrior]

@LipoedemaUK Sad to be missing out but surgery no2 beckons! 🙌🏻

[Lipoedema Patient @lipedemawarrior]

5 CCGs in SE rated 'inadequate' over finances: apparently not the reason why #lipoedema patients are denied surgery. https://t.co/BCjTz832kt

[Jonathan Ashworth @JonAshworth]

Hi nurses, midwives, paramedics, all NHS staff. Tory Chancellor insultingly says you are 'overpaid' RT if you think we need to #scrapthecap

[Lipoedema Patient @lipedemawarrior]

For the purpose of calculating risk 4 travel insurance,do compression tights equate 2 treatment/medication @AskLloydsBank @Axa #IDontThinkSo

[Lipoedema Patient @lipedemawarrior]

@NHSEngland I'm guessing that #Lipoedema is a "special item" then? I'm not feeling very "special" today. Lipoedema is painful & progressive. 😞

[Lipoedema Patient @lipedemawarrior]

Have walked the best part of 31k steps today/yesterday. #CCGs please take note: it's #lipoedema surgery that enabled that. #itsNOTcosmetic

[Lipoedema Patient @lipedemawarrior]

@thekarriclinic who runs your Twitter feed? Are they qualified nurse/Doctor? I notice some tweets now missing?

[Lipoedema Patient @lipedemawarrior]

@LipoedemaUK I do and Ive also asked them to share with their CCG. #Knowledgeispower

[Lipoedema Patient @lipedemawarrior]

@drsharie @thekarriclinic @Lipoedemaweb @Jeremy_Hunt Im actually deeply upset by that comment too. Help for us as patients will never come if surgery is consistently referred to as cosmetic.

[Lipoedema Patient @lipedemawarrior]

@thekarriclinic @drsharie @Lipoedemaweb @Jeremy_Hunt We need health professionals to advocate for us as patients. Do NHS knee/hip patients have to pay for their surgery to get pain relief? No.

[Lipoedema Patient @lipedemawarrior]

@thekarriclinic @drsharie @Lipoedemaweb @Jeremy_Hunt How is increased mobility/pain free = cosmetic? Lipoedema surgery to a patient is NOT cosmetic!

[Lipoedema Patient @lipedemawarrior]

@thekarriclinic @drsharie @Jeremy_Hunt Slightly perplexed by Tweet. I have no concerns about my surgeon/how safe they are. I wouldn't hv spent ££ without undertaking app research.

[Lipoedema Patient @lipedemawarrior]

@drsharie @thekarriclinic @Jeremy_Hunt Good point Dr S, would be interested to know if that is relevant in patient/surgeon decision making?

[Lipoedema Patient @lipedemawarrior]

@thekarriclinic @Jeremy_Hunt It is. It's lots if money to a CCG but it's huge for me. Its huge for my family, the things they'll never have because of my ops. Quite sad!

[Lipoedema Patient @lipedemawarrior]

@thekarriclinic @Jeremy_Hunt We both know the huge difference it can make to a patient's wellbeing, mobility & future health. I just wish CCGs would recognise our need.

[Lipoedema Patient @lipedemawarrior]

@thekarriclinic @Jeremy_Hunt I have an excellent surgeon I'm really happy with. The key point is that CCGs don't recognise surgery as important to Lipoedema patients 1/2

[Lipoedema Patient @lipedemawarrior]

@Lipoedemaweb Just one so far, another booked for the autumn. Surgeon is a legend, a shame that #CCG doesn't agree that I'm worth it. Slow process saving.

[Lipoedema Patient @lipedemawarrior]

@Lipoedemaweb Agree but my poor, long suffering family miss out terribly. No family hols for us, a s/e partner who keeps working & cant afford time off.