Lymphoedema Service in Kent & Medway

[Aliphant1964]

Hello

I HOPE THIS POST IS ALLOWED - PLEASE ACCEPT MY APOLOGIES IF NOT!

I received a telephone call yesterday from a researcher working on behalf of the NHS/ CCG gathering feedback to try to improve the vascular services provided in Kent & Medway. During the course of our conversation I mentioned the numerous difficulties I have encountered since receiving my Bi Lateral Lower Leg Primary Lymphoedema diagnosis approximately 10 years ago.

At this point the researcher said he "wears two hats" because he is also involved with the Healthwatch Group that aims to address any concerns raised by patients across the County. He went on to explain he has been asked to identify issues around the diagnosis, treatment and care of Lymphoedema patients in order to provide feedback and evidence to the Service Providers.

However, he has had great difficulty in finding people who are willing and able to discuss their experiences of the care (or lack of) they have received and he would welcome the opportunity to speak to Lymphoedema Service Users in the area.

I have agreed to be called back to share my own views but I am conscious of the fact I have previously raised my concerns directly with the Head of the Service and therefore they may feel my experiences are either A) Unique to me (and not shared by anyone else) and B) Biased because of the poor care I have received.

I don't know how to go about finding other people who might consider speaking to the researcher but it occurred to me this could be a good place to start!

ADMIN: I would appreciate any advice you could give me with regard to this request - and obviously I am aware of the need for privacy and anonymity and gaining permission for contact details to be shared with the researcher.

Again, please accept my apologies if this post is inappropriate!

Kind regards

Alison

[CCT67]

Please can you ask him to contact the Lymphoedema Support Network LSN on their phone line in London, or via their FB page. LSN is a long-standing UK Lymphoedema charity which has loads of Lymphoedema patients on their mailing list and others who follow them on social media. It would be easy to source loads of patient experience/ feedback as many patients would respond if LSN puts the word out. LSN could give his contact details for patients to approach him directly, or they could post a survey on his behalf.

Also, Gaynor a Leech who runs L-W-O Community has thousands of members on her social media platforms so she could also help put the word out.

As so many patients post everyday on many FB groups about being closed out of Lymph services, taking years to finally receive diagnosis due to system failure, and GPs refusing to refer them to Lymphoedema clinics, etc , I expect there would be high take up to a call for feedback !

lymph-what-oedema.com/

[Aliphant1964 in reply to CCT67]

Thank you you very much for taking the time to reply and for the very useful advice and information. I have spoken to the researcher again today and I am awaiting contact from the person who will be leading this project. At that point I will forward these details is on to him. In the meantime if there are any Kent & Medway Lymphoedema patients who might be interested in participating in this research please feel free to message me. Kind regards, Alison. [e-mail]

[veriterc]

I applaud Alison for what she is doing. Is there any way I could join in if there is a similar survey in the Thames Valley/Oxfordshire area?

[Perido]

Good call Alison. I'm in East Surrey and would welcome the chance of being involved in such a survey.