Writing to mp, starting a petition?

[Angelil]

Hi all

I just wondered if anyone has raised the lack of funding for lymphoedema services with their mp or started a petition?

I'm finding it really frustrating that MLD and micro surgery etc has to be at a cost to ourselves. Also I can't even get an appointment to see the specialist nurse for over 6 weeks (she has told me to go back to my oncologist to get the referral I need regarding some problems that I am having as it will be much quicker!!)

I have written to my mp but with no reply, i just wondered if anyone else had any experience of raising the issue with their mp and if they got anywhere?

Also I have been looking for any petitions for parliament but can only find one dating back to 2015, are there any more recent ones? I can find the petition to make lymphoedema the focus for world health day 2018 but nothing that specifically addresses the lack of funding and national strategy?

Thanks in advance

[Christo]

Please start a petition and I will happily sign and support it as I am sure many other sufferers experience similar problems.

[galtyboi in reply to Christo]

Yes I too will sign it,America have Kathy Bates who is doing brilliant work in raising awareness on lymphedema,We have lymphedema support network here and health unlocked who are doing brilliant work,but the word is not getting to the people at the Top,the politicians,Lymphedema seems to be swept to the bottom of the list every time,and that should not be happening.Patients are been referred back to GP's because of lack of funding in hospital clinics.GP's don't know enough about lymphedema to get interested,somebody is needed to take the reins,and be supported by people with Lymphedema,if I was younger id give it a go ,but now I have arthritis and Lymphedema and my walking distance is very limited.6th of March is lymphedema day,I will make sure everybody knows about it.

[sammyvan]

There was one floating around several months back - not sure what it accomplished? I signed - as I will any petition that brings Lymphoedema to the attention of the Powers that be..... and MP's!

Amazing how many medical folk still don't have the faintest idea how to treat this disease and some are almost afraid of it? My fear is that the next generation will be in the same position we are, and that is just not good enough. I don't want my daughter - or granddaughters, going thru Lymphoedema as I am [ Mine is primary ] and unless someone takes it seriously - and soon, chances are it will be several generations before serious studies are done.

sammy

[AnneBury in reply to sammyvan]

The Lymphoedema Support Network (LSN) lymphoedema.org have details on their website of two training modules for medical professionals. Both modules count as professional development for medics. Worth bringing to the attention of any medics you meet. (under the tab for heath professionals on LSN website).

[Lynora]

Contact the staff at LSN - they have contacts in Parliament, and have attended meetings there. There is no harm in contacting your own local MP about your local services (or lack thereof!) - you could also show up at your MP’s office - they are obliged to see you.

[Huqsvarna]

I would happily sign one and promote it, I have often thought and wondered about this but don't know how all this run, the administration of it all. Agree more needs to be done on research and more help or recognition of the fact that sometimes this can be a disabling disease in all its varying degrees! Being fobbed off and having to find own management/ treatment like therapists is quite costly, it's not like people go to the specialist massage therapists for cosmetic appearance or limb beautification!

[sammyvan]

Thank you for that info, AnneBury and Lynora.

I am just about fired up enough to do exactly what you both suggest. Nothing like a prolonged bout of Cellulitis to give one a nudge in the right direction!

sammy

[Angelil]

Thanks all, I have written to the mayor of the West Midlands and copied my local mp in. I'll see what they say if anything and be in touch if and when I start my petition!!!

[Angelil]

Ps if anyone would like the link to the petition for making lymphoedema the focus for world health day 2018, it's below.

change.org/p/world-health-o...

[Carolpa]

I share your frustration. I had to wait 3 months to get appointment with lymph nurse. Another 3 months to get a sleeve which didn't cause more swelling. By that time I demanded appointment with consultant. Was told I would have to travel 60 miles plus (with head shaking) so I told her I would worry about getting there. Appointment came through for a day less than 4 weeks after my request. Why so long to see a nurse who in our area I consider Inadequately trained and lacking in understanding? My appointment is for next week but my point is that anyone can demand to see a consultant so go for it.