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Left to my own devices to find out how to manage my conditio...

Posted By LessLipoedema

"Left to my own devices to find out how to manage my condition"

About: General practices in Tayside Roxburghe House / Macmillan Lymphoedema Specialist Nurse

(as a service user),

I’m very disappointed in the care given to lymphoedema patients.  I was diagnosed at the end of last year and it became very clear nothing can be done.  I was referred to the lymphoedema service but not offered flat knit compression, despite asking for it and it being recommended for lymphoedema.

I decided to go for private surgery as the NHS offers nothing and my GP was supportive, however then charged me fees to get pre-surgery tests. I did eventually manage to get flat knit compression on prescription, however that was through paying for a private fitting from a qualified MLD practitioner and they phoned my practice to argue to get them prescribed.

After diagnosis and initial lymphoedema clinic appointment, I have been left to my own devices to find out how to manage my condition.  I am one of the lucky ones because I could afford with great difficulty to go for surgery abroad, but others who don’t have the access to that kind of money are just being left to progress.

It’s a very debilitating disease that is painful and stealing mobility.  It should be helped by the NHS and not something that is brushed under the carpet. I feel that GPs need to get better at diagnosis too, and not fob people off saying it’s obesity, they should know the signs and be able to recognise the symptoms so many patients are describing.

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Responses

Response from Victoria Sullivan, Project Manager, Elective Medicine, NHS Tayside about a year and a half ago
Victoria Sullivan
Project Manager, Elective Medicine,
NHS Tayside

Project manage and facilitate change programmes, transformation and service redesign across Elective Medicine services within NHS Tayside

Submitted on 12/12/2023 at 10:34
Published on Care Opinion at 10:34

picture of Victoria Sullivan

Dear LessLipoedema

Thank you for your feedback on the care given to lymphoedema patients in Tayside, and thank you for sharing details of your situation and the steps you had to take to resolve this yourself.

Unfortunately, at this time, GP practices are not part of the Care Opinion subscription in Scotland, as each GP Practice is an independent business. We would recommend that you feedback your experience and your suggestions about recognising the symptoms of this disease for improved diagnosis directly to your GP practice, as feedback enables an organisation to reflect, identify areas for improvement and revise any processes as required.

The Practice Manager at your GP practice will be able to let you know how to do this, using their Complaints and Feedback Policy.

Thank you again for raising this issue and for taking the time to let us know how this has affected you. With best wishes

Victoria Sullivan

Care Opinion Manager, NHS Tayside

  • {{helpful}} {{helpful == 1 ? "person thinks" : "people think"}} this response is helpful
Response from NHS Tayside about a year and a half ago
NHS Tayside

Submitted on 12/12/2023 at 13:26
Published on Care Opinion at 13:26

Dear LessLipoedema

I am sorry you feel that you have been left to your own devices. As you say there is no cure for Lipoedema, which is a different condition from Lymphoedema.

I wonder if you would want to discuss the issues that you have been facing and to go over self management. I would be happy if you wanted to make contact with the clinic or if you wanted your GP to refer. The contact number for the clinic is 01382 423174.

Best wishes

Claire Hastie

Lymphoedema CNS NMP

Macmillan Daycare, Roxburghe House

  • {{helpful}} {{helpful == 1 ? "person thinks" : "people think"}} this response is helpful

Update posted by LessLipoedema (a service user)

Thank you for the offer Claire but it’s too late now as I have had the surgery and managed to fight to get my flat knit compression on prescription and paid for my manual lymphatic drainages myself following it.

I did write Lipoedema but it must have been edited to say Lymphoedema as I know the difference. I was fortunate to be able to afford surgery but others who need the help may not be offered even prescription flat knit compression or MLD sessions which make a huge difference. I think it’s terrible that Lipoedema appears to be a forgotten service in the NHS now.

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