Urgent call to action if you live in the UK

[LymphSuppNetwork]

CALL TO ACTION

please follow the link below to share your experiences of lymphoedema care in the UK and suggestions for improvement, direct to government decision makers.

All responses will need to be individual or AI will not accept them - so we can not give you proforma answers.

Some suggestions of things you make like to mention are below, but your own thoughts and experiences are as, if not more valuable in this process. Please do not just cut and paste these answers, make them your own. Send us a done or a thumbs up so we know how much more nagging we need to do.

- Lymphoedema is not rare, over 400,000 adults and children in the UK live with it.

- It is not uncommon for it to take over 10 years to get a diagnosis

- In many areas access to lymphoedema is limited to those who develop it as a result of cancer treatment

- A shortage of specialists means that GPs are being expected to manage the condition with little knowledge and insufficient training

- Compression has to be worn all day everyday, it can not be dried by heat and only two garments every 6 months are provided by the NHS. One to wear and one to wash can be impossible for the elderly or during the winter months.

- Cellulitis is a real fear and a dangerous reality for many living with lymphoedema, yet many GPs and emergency doctors do not know how to treat it in those with lymphoedema, leading to unplanned hospital admissions.

- The current system of prescribing compression via GP computer systems is complicated and often leads to mistakes, this costs the NHS thousands of pounds each year. The suggested response is to limit the choice available to patients will not solve the problem. Get the current systems right before limiting choice.

- A National plan for lymphoedema to ensure early diagnosis and assessment, reduce geographical or cause inequalities and enforce standards of care, promote supported self management alongside workforce training and development will save the NHS Money.

change.nhs.uk/en-GB/project...

[Lymphet]

The link posted is for health care professionals or organisations………not for individuals!

[LymphSuppNetwork Partner LSN in reply to Lymphet]

Hi Lymphet, it is the right link, you scroll down the page to the blue stripe that says "share your views." thanks

[CCT67 in reply to LymphSuppNetwork]

Share Your Views takes you to a log in page ie. login name and password required to go any further

[LymphSuppNetwork Partner LSN in reply to CCT67]

Yes you have to create an account. Instructions are on the screen.

[HazieC]

sorry but I can’t see anywhere to click on to take part are you able to put a new link please

[Perido]

Done - no problems.

[1vern0n]

As much as I would like to contribute I am not prepared to create an account unfortunately.

[Chris21]

done. happy to tell the government my thoughts 😁

[sleeviejeebies]

Done! Stared at the blinking cursor for a bit, and then dived in! 🙂

[lovesradio]

I live in Scotland and the webpage sounds as if it is trying to improve the NHS England provision, so not sure my view will be counted?

[HelenaD]

same here. I also live in Scotland and I have plenty of feedback for you

[GraemeBr]

Change NHS is a Westminster policy for England. However, it looks like you can offer feedback etc. via this page for Scotland - either to your NHS health board or the Care Opinion website: nhsinform.scot/care-support...

[HazieC]

Done

[DeborahS32]

thanks for highlighting this, I wouldn’t have known about it otherwise. Responded, but it’s not immediately easy to get into not to figure out where and how best to highlight issues. Glad I persevered with it though

[LymphSuppNetwork Partner LSN]

Thank you Deborah.